South African Health Review 2020 South African Health Review 2020
LIMPOPO
MPUMALANGA
NORTH WEST GAUTENG ESWATINI
FREE STATE KWAZULU- NATAL
NORTHERN CAPE LESOTHO
EASTERN CAPE
WESTERN CAPE
Published by Health Systems Trust Information presented in this Review is based on best available data derived from numerous sources. Discrepancies between different sources reflect the current quality of data. All data should, therefore, be interpreted carefully and with recognition of potential inaccuracy.
The views expressed in this Review are those of the individual authors and do not represent the views of their respective organisations/institutions or of the Health Systems Trust.
The full publication is available on the HST website https://www.hst.org.za/publications/Pages/SAHR2020.aspx
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ISSN 1025-1715 ISBN 978-1-928479-06-2 December 2020
This publication was produced by the Health Systems Trust with partial support from the National Department of Health.
Suggested citation, for example: Gray A, Vawda Y. Health legislation and policy – a focus on disability. In: Kathard H, Padarath A, Galvaan R, Lorenzo T, editors. South African Health Review 2020. Durban: Health Systems Trust; 2020. URL: https://www.hst.org.za/publications/Pages/SAHR2020
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Cover and layout by Lushomo.net
A note on accessibility This publication has been formatted to optimise the readability of the document for persons with vision impairments, such as low vision or blindness, or other disabilities that may affect reading. The PDF document has been optimised for text-to-speech functions such as those available through Acrobat Reader DC as well as other specialised, and often free, screen-reading software.
Where graphics and images appear in the text, image descriptions have been included as alternative text (alt text) and best practice has been followed to enhance navigation and readability, including the use of links to help with navigation between sections, the appropriate tagging and indexing of headings, and use of high-contrast colours where possible.
Implementing full accessibility measures was not always possible, especially in chapter 20 on Health and Related Indicators 2020, which features a large number of graphs and tables, some containing subtle colour variations used to highlight differences in numerical values. Foreword
On behalf of the Board of Trustees, it gives me great pleasure to present the 2020 edition of the South African Health Review (SAHR). Under the theme ‘Access to health care for persons with disabilities in South Africa’, this 23rd edition provides critical insight into barriers and facilitators, good practices, and successful service-delivery models for disability inclusion and rehabilitation. Producing this edition of the SAHR was a collaboration between the Health Systems Trust and Inclusive Practices Africa, a research group in the Department of Health and Rehabilitation Sciences at the University of Cape Town, which focuses on eradicating barriers to inclusion for persons with disabilities.
Chapters in the Review provide information on the multitude of challenges associated with providing a seamless continuum of appropriate and adequate care for persons with disabilities in the public health sector. These challenges include human resource constraints, fragmented and under-resourced rehabilitation services, lack of appropriate assistive devices, and the adoption of an overwhelmingly medicalised approach to disability, all of which translate to poor availability, affordability and access to health services for persons living with disabilities. This results in many persons with disabilities being denied the opportunity to reach their full potential.
Collectively, the 2020 edition represents an evidence base that can be used to strengthen health services and inform future policy development in disability inclusion and rehabilitation in South Africa.
A strong group within the Health Systems Trust, supported by a cadre of highly regarded peer reviewers and authors, have worked through the year to bring the Review to completion. On behalf of the Board, I extend deep appreciation to all HST staff involved in producing theReview , as well as to the authors and peer reviewers, and the SAHR Editorial Advisory Committee members who provide oversight and direction to the editorial team.
The collective input of internal and external peer reviewers, and the willingness of authors to accommodate collegial feedback and editorial comment, have strengthened the publication.
We feel confident that the 2020SAHR will serve as a key resource and departure point in advancing access to health care and services for persons with disabilities in this country.
Dr Dumani Kula Chairperson of the Board of Trustees, Health Systems Trust
Foreword i Contents
Foreword i
Acknowledgements v
Editorial vii
Chapters at a glance xi
A transformative approach to disability awareness, driven by persons with disability 1 01 Sandy Heyman, Dhanashree Pillay, Victor de Andrade, Ronel Roos, Kganetso Sekome Reducing psychosocial disability for persons with severe mental illness in South Africa 11 02 Mvuyiso Talatala, Enos Ramano, Bonginkosi Chiliza Improving the health of children and adults with intellectual disability in South Africa: 19 legislative, policy and service development 03 Sharon Kleintjes, Judith McKenzie, Toni Abrahams, Colleen Adnams
Health legislation and policy: a focus on disability 35 04 Andy Gray, Yousuf Vawda Framing the debate on how to achieve equitable health care for persons with disabilities 45 in South Africa 05 Hannah Kuper, Jill Hanass-Hancock
HRH planning for rehabilitation services: a focus to reduce inter-provincial inequities 53 06 Ritika Tiwari, Lieketseng Ned, Usuf Chikte Social security benefits and disability assessment in the working-age population in South Africa 65 07 Blanche Andrews, Shahieda Adams Perinatal depression and anxiety in resource-constrained settings: interventions and health 79 systems strengthening 08 Simone Honikman, Siphumelele Sigwebela, Marguerite Schneider, Sally Field
Community-based peer supporters for persons with disabilities: experiences from 89 two training programmes 09 Gillian Saloojee, Maryke Bezuidenhout
Early childhood intervention: the Gauteng experience 99 10 Sadna Balton, Annika Vallabhjee, Elma Burger Communication vulnerability in South African health care: the role of augmentative 107 and alternative communication 11 Kirsty Bastable, Shakila Dada
Contents iii Assistive technology service delivery in South Africa: conceptualising a systems approach 119 12 Surona Visagie, Elsje Scheffler, Nikola Seymour, Gubela Mji Health-system strengthening that matters to rural persons with disabilities: 129 lessons from the Eastern Cape 13 Kate Sherry, Steve Reid, Madeleine Duncan
The role of social workers in addressing caregiver burden in families of persons with disabilities 137 14 Noreth Muller-Kluits, Ilze Slabbert Disability inclusion in the Northern Cape: a community-based wheelchair service project 147 15 Ronique Walters, Maria Britz, Erna van der Westhuizen Toward ‘Rehab 2030': building on the contribution of mid-level community-based rehabilitation 155 workers in South Africa 16 Susan Philpott, Pam McLaren, Sarah Rule
Reimagining rehabilitation outcomes in South Africa 163 17 Adèle Ebrahim, Michelle Botha, Dominique Brand, Karina Fischer Mogensen The intersection between Health and Education: meeting the intervention needs of children and 171 youth with disabilities 18 Alecia Samuels, Unati Stemela, Mpilo Booi
Ensuring equal access to health services for the Deaf in South Africa 183 19 Leslie London, Virginia Zweigenthal, Marion Heap Health and Related Indicators 193 20 Candy Day, Andy Gray, Thesandree Padayachee, Annibale Cois Abbreviations 275
iv South African Health Review 2020 Acknowledgements
Editors Harsha Kathard, Ashnie Padarath, Roshan Galvaan and Theresa Lorenzo.
Project coordinator Emma-Louise Mackie.
Copy editor Julia Casciola.
Editorial Advisory Committee We extend sincere thanks to the Editorial Advisory Committee members: Maryke Bezuidenhout, Andy Gray, Esther Kibuka-Sebitosi, Khathutshelo Percy Mashige, Ntombizodwa Mbelle, Lieketseng Ned, Thesandree Padayachee, Laetitia Rispel, Amshuda Sonday, and Thulile Zondi. Their contributions have helped to ensure the rigorous and scrupulous standard of peer review to which the Review aspires.
Contributing authors We appreciate the individual authors’ commitment to contributing to the Review and their co-operation in responding to editing requirements, often at short notice.
Peer reviewers We extend our thanks to the peer reviewers for their insightful comments that strengthened the quality of the chapters in this Review: Kristen Abrahams, Gail Andrews, Seyi Amosun, Michael Burnett, Peter Barron, Margaret Booyens, Elma Burger, Maureen Casey, Usuf Chikte, Lizahn Cloete, Tracey-Lee Cloete, Saul Cobbing, Thandi Conradie, Shakila Dada, Prudence Ditlopo, Lambert Engelbrecht, Martha Geiger, Ameena Goga, Jill Hanass-Hancock, Lucia Hess-April, Ellen Hickey, Callista Kahonde, Nadira Khamker, Nasim Banu Khan, Hannah Kuper, Helga E. Lister, Jacques Lloyd, Soraya Maart, Verona Mathews, Victor McKinney, Emma McKinney, Nondwe Mlenzana, Themba Moeti, Nomfundo Moroe, Shehnaz Munshi, Charles Ngwena, Nonhlanhla Nxumalo, Chioma Ohajunwa, Simon Rabothata, Marguerite Schneider, Maximus Sefotho, Tamlyn Seunanden, Kate Sherry, Maylene Shung King, Wiedaad Slemming, Chandre N. Stuurman, Leslie Swartz, Mvuyiso Talatala, Jeanne-Marie Tucker, Karin van Niekerk, Janine White.
Access to data We are grateful to the National Department of Health for providing access to various data sets used in this Review.
Technical support We acknowledge the technical input from guest editors Harsha Kathard, Roshan Galvaan and Theresa Lorenzo from Inclusive Practices Africa, a research group in the Department of Health and Rehabilitation Sciences at the University of Cape Town.
Organisational support We are grateful to the following Health Systems Trust staff for their assistance: Lisa Aspden, Rakshika Bhana, Lebohang Dikobe, Ashe Jhungbathur, Delene King, Anesh Mahadev, Ntombizodwa Mbelle, Sibonelo Mbokazi, Lunga Memela, Primrose Ndokweni, Kemona Pillai, Antoinette Stafford Cloete, and Duduzile Zondi.
Funders This publication was produced by the Health Systems Trust.
Layout and design Lushomo.
Cover artwork 'The Maze of My Life' by Phiwokuhle Msusa. The cover of the SAHR 2020 shows a round flat bowl with a black rim. The centre of the bowl has bright colourful rings in greens, blues, reds, pinks and yellows. The rings of colour are cut into four sections by two diagonals, with each section showing a different selection of colours. We are grateful to the Cape Mental Health Society for their assistance in sourcing the artwork.
Acknowledgements v Editorial
illness that has become more visible during the COVID-19 SAHR 2020 pandemic.
This 23rd edition of the South African Health Review (SAHR) In chapter three, Kleintjes and team reveal the gains recognises the gains made in disability-inclusive health care, and challenges to inclusion for persons with intellectual but also acknowledges that progress has been limited in disabilities in South Africa. Their scoping review addresses the public health system. The focus of each of the chapters a comprehensive range of issues, from legislation and is more on access to equitable health care and disability policy, to services, capacity development, training, advocacy inclusion than on specific impairments or medical conditions. and research. Of significance are their broad-based While some chapters relate to a specific medical condition, recommendations for the health and well-being of persons what is paramount is the relevance of each chapter to with intellectual disabilities and their families. disability inclusion. Overview of policy and processes The chapters in this edition of the Review are presented in Policy making is a highly contested area that has lacked four sections. The first section, on improving visibility, draws an emphasis on disability inclusion. Policies should extend attention to invisible disabilities and aligns with the theme beyond their symbolic value, and policy implementation of this years’ International Day of Persons with Disabilities together with strong monitoring and evaluation are needed (‘making the invisible visible’). Section two is a critical review urgently for disability inclusion to become an active driver of the potential of policy and policy processes to advance of societal change. As such, persons with disabilities must disability inclusion. Section three describes a range of health be part of decision-making and policy processes through practices and services that provide insight into how disability self-representation in all spheres of policy making and inclusion can be strengthened as a non-negotiable aspect implementation. The space and opportunity for self- and of health-system strengthening. The subject of section four collective representation must be prioritised across all levels is inclusive workforce development to strengthen the health of the health system, from clinic committees to professional workforce as a key strategy in health-system strengthening. associations and medical schemes.
Improving visibility Policy processes must amplify the focus on disability inclusion, Chapters in this section highlight critical areas that have advocate for social awareness of disability, and re-position been invisible within the health system. disability inclusion as a political and human rights issue.
Chapter one forefronts the critical need for persons Gray and Vawda provide an overview of both general and with disabilities to be visible, and for them to participate disability-specific policy and legislation in chapter four. actively in disability-awareness programmes. Heyman and The chapter is dedicated to critical policy analysis and colleagues point out that disability-awareness programmes implementation, and offers insight into the policies that tend to be driven by people who are not disabled. The guide health-system strengthening for disability inclusion. authors use the People for Awareness of Disability Issues Of importance is the call for a Disability Act as leverage for (PADI) project to illustrate the importance of moving away disability inclusion in the health system. The authors also from a medicalised checklist approach, which develops explore how National Health Insurance (NHI) in South Arica technical competencies, to an approach emphasising has the potential to address the health needs of persons disability inclusion in a more nuanced, contextualised and with disability at population level. humanising manner. In chapter five, Kuper and Hanass-Hancock outline the debate Despite the growing prevalence of mental health conditions, for an equitable health system. They highlight the range of particularly depression, mental health care in South Africa barriers faced by persons with disabilities on an ongoing is poorly resourced, leaving vulnerable people untreated or basis, unpack some of the current and potential drivers of poorly supported. In chapter two, Talatala and co-authors inequity, and outline potential levers and solutions to these advocate for an early recovery-oriented team approach issues. and underscore the critical responsibility of workplaces in accommodating persons with mental illness. The authors Chapter six, compiled by Tiwari and colleagues, sets the also focus on the silent, invisible pandemic of mental agenda for innovative thinking on service delivery and human resource planning for rehabilitation. Given the
Editorial vii critical shortage of rehabilitation professionals, they argue various forms of AAC to reduce communication vulnerability for training of additional speech-language therapists, in healthcare settings. They note that the COVID-19 occupational therapists and physiotherapists between pandemic has highlighted the importance of AAC in critical 2020 and 2030, and propose that community rehabilitation care settings, and recommend that health personnel be workers should form part of the rehabilitation health team as trained in how to use AAC. mid-level workers. In chapter 12, Visagie and colleagues call for a systems In chapter seven, Andrews and Adams provide an overview approach to assistive technology (AT) services and of policy and legislation currently guiding disability products as current evidence indicates that these services assessment across sectors. Noting the current limitations are inequitable, fragmented, and dependent on qualified of disability assessment conducted by medical doctors individuals working in professional silos. They argue that who have limited training, they advocate for disability a systems approach to AT service delivery can facilitate assessments to be carried out by a multidisciplinary team. seamless, equitable provision across time and place, and they identify strategies for sustainable, resilient, and cost- Health services and practices effective service delivery. A number of chapters in this section speak to practices that facilitate disability inclusion. These practices have In chapter 13, Kate Sherry and team focus on the poverty- typically been profession-specific in approach, despite disability-lack of access relationship through understanding the complexity of disability inclusion. The health service healthcare experience from the perspective of persons with and practice chapters build a case for strengthening disabilities. They distil important lessons on how health inter- and multi-disciplinary team approaches, leadership, systems can either exclude or engage this vulnerable collaboration, and scalability to achieve and sustain inclusive population. practices. The role of social workers in addressing caregiver burden in Chapter eight discusses the high levels of depression and families of persons with disabilities is examined in chapter anxiety in women during pregnancy and the postpartum 14. Muller-Kluits and Slabbert offer recommendations on the year due to multiple risk factors, such as gender-based role that social workers can play in addressing caregiver violence, poverty, and food insecurity. Writing on perinatal burden among family caregivers. These burdens can include depression and anxiety in resource-constrained settings, physical, emotional, financial, and social challenges. Honikman and team advocate for the inclusion of perinatal mental health services into maternal and child health In chapter 15, Walters and associates describe and explore services, as well as for improvement in the quality and the effects of a three-year capacity-building intervention effectiveness of services, and scale up of these services. undertaken in selected rehabilitation departments in the Northern Cape. The project represents a public-private Chapter nine focuses on community-based peer supporters partnership to improve wheelchair service provision for persons with disabilities as a critical component in an and quality, increase access to services for persons with inclusive health system. Saloojee and Bezuidenhout submit disabilities, and promote social inclusion. that what takes therapists years to achieve with clients in terms of behaviour and lifestyle changes can be achieved by Inclusive workforce development a peer supporter in a much shorter time frame. They argue Workforce development needs to address imbalances and that improved outcomes are possible in terms of social the question of who is being trained to meet human resource inclusion and prevention of secondary complications when planning. Currently, few persons with disabilities are trained peer supporters are integrated into traditional rehabilitation in any of the rehabilitation professions. The make-up of services, within a sustainable funding model. the rehabilitation team needs to be carefully defined. The sustainability of community rehabilitation worker training In chapter 10, Sadna Balton and colleagues discuss the needs to be examined and the political forces between importance of early childhood intervention (ECI). They professional boards and universities and associations need to define ECI as the experiences, opportunities, support be tackled. and resources provided to children with developmental delays and disabilities, and those who may develop delays This group of chapters highlights the need to include due to biological or environmental factors. As in previous persons with disability in the workforce as this is a key chapters, the authors stress the importance and urgency of aspect of economic inclusion. Consideration is also given to strengthening community-based practices. how the workforce providing disability services should be trained and educated. In chapter 11, Bastable and Dada discuss the role of augmentative and alternative communication (AAC) for In chapter 16, Philpott and co-workers present a case people with communication vulnerability. They describe study of disability inclusion through community-based
viii South African Health Review 2020 rehabilitation in KwaZulu-Natal. This chapter focuses Reflections particularly on the contribution that mid-level community Disability inclusion is influenced by broader visible and rehabilitation workers can make to rehabilitation that is invisible systemic inequities that perpetuate hierarchy, accessible and appropriate, in order to ensure universal patriarchy, racism and ableism. Innovation in policy and health coverage and ‘rehabilitation for all’ under NHI. legislation is an opportunity to revisit policies, change policies, and develop new policies along with legislation. In chapter 17 on re-imagining rehabilitation outcomes in However, gains will only be realised through implementation South Africa, Ebrahim and colleagues reflect on the ways practices that result in tangible health-system changes. in which rehabilitation and development programmes Practices framed through political consciousness lead to shape societal attitudes towards persons with disabilities policy innovation, and participatory processes and self- and entrench stereotypical beliefs about their capabilities, representation are central to innovation and an African value and status. The authors argue that the accountability approach to disability inclusion. Research should align frameworks governing the provision of rehabilitation and with this innovation process, and disability-inclusive development services designed to increase disability curricula should support policy change and sustainable inclusion require critical re-thinking in order to meet the implementation. complex needs of persons with disabilities. Other issues for consideration are as follows: Chapter 18 explores the intersection between the health • How can engagement with disability identity and and education sectors in meeting the needs of children marginalised race, gender, sexuality, and class identities and youth with disabilities. Alecia Samuels and co-authors assist in the undoing of an inequitable health system, explore how intersectoral collaboration in the health and and make way for a practice that is both person-centred education sectors is affected by poor coordination and and population-focused? integration at various level of the system. They make • How do we move from an overwhelmingly medicalised recommendations that will allow children and youth with and individualised approach to disability focused on disabilities to transition much more seamlessly between fixing impairments, to a rehabilitation service-delivery these sectors, mitigating the systemic barriers that lead to model that facilitates the development of holistic well- inadequate health, development and academic outcomes. being and greater socio-economic inclusion for persons with disabilities? In chapter 19, Leslie London and Virginia Zweigenthal, • How will the health sector include persons with together with Marian Heap (posthumous) present research disabilities (who have both experience with disability evidence for health system innovations that provide South and expertise in inclusion) in the process of achieving African Sign Language (SASL) interpreter services to improve universal health coverage? quality of care and the health care experience of both Deaf • What are the basic and critical services required by users and providers. They also report on the Western Cape persons with disabilities given that they have diverse provincial health department‘s adoption of a province-wide health needs, even among those with the same interpreter service, including SASL and other languages, condition? enabling marginalised groups to access meaningful health • How will the disability sector be led, and how do care. we co-ordinate and maximise the efforts of the vast collective of actors in this field to create a health service Indicators that is disability-inclusive and that puts the interests of As per tradition each year, the final part of theReview the population of disabled persons before individual focuses on national health indicators. This stand-alone interests? section follows the chapters on disability-inclusive health care in the four sections above. Conclusion This edition of SAHR forefronts disability inclusion as a The indicator chapter by Candy Day and team highlights the neglected area in South African health care. Going forward, currently available data on disability in the health system it is imperative that the health system plays its part in and points out that an information system tracking the creating an inclusive society through its values, policies, health status of persons with disabilities is not available to processes, people and practices, and by reflecting critically facilitate planning and implementation of services. However, on its power to effect change. the opportunity for more nuanced information on disability will be available in the next consensus survey in 2021. It Harsha Kathard, Ashnie Padarath, Roshan Galvaan and is imperative that development and implementation of the Theresa Lorenzo census survey be disability-inclusive and participatory.
Editorial ix CHAPTERS AT A GLANCE South African Health Review 2020 CHAPTER AT A GLANCE 1 A transformative approach to disability awareness, driven by persons with disability Sandy Heyman, Dhanashree Pillay, Victor de Andrade, Ronel Roos, Kganetso Sekome
The aim This chapter uses the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) to explore how the therapeutic professions view disability. The chapter goes on to present the PADI (People for Awareness of Disability Issues) project as an example of an experiential teaching-and-learning approach, facilitating implementation of disability policies and practices in a community of practice.
Key findings A role reversal occurs when persons with disabilities become educators and providers of a service rather than recipients of a service; this reversal enriches student clinicians’ knowledge and understanding of disability and shifts it from theory to practice.
Disability-awareness programmes based on Two-fold transformation participation, community of practice, experience, and context can be transformative for persons with includes empowering disabilities, student clinicians, and academic staff. persons with disabilities to be educators, and Recommendations transforming the views As professional programmes transform, there are opportunities for inclusive and wide-ranging and perceptions of transformation: • Projects like PADI should be included in curricula students in therapeutic and persons with disabilities should be incorporated as educators; this in turn gives student clinicians an professions at appreciation of the lived experience of disability. • When reviewing and adjusting therapeutic institutions of higher profession curricula, persons with disabilities should learning. be invited to form part of the teams reviewing and updating said curricula. • Student learning should be dynamic and inclusive, with agency also resting in the persons with disabilities, and recognition given to their knowledge, insight, value, and power.
Click to navigate to Chapter 1 xii South African Health Review 2020 CHAPTER AT A GLANCE 2 Reducing psychosocial disability for persons with severe mental illness in South Africa Mvuyiso Talatala, Enos Ramano, Bonginkosi Chiliza
The aim To describe the association between psychosocial disability and severe mental illness (SMI), and to explore some of the key challenges of mental health and disability.
Key findings There is inadequate epidemiological data on SMI and psychosocial disability in South Africa. Assessment of impairment and the determination of psychosocial disability are complex and at times difficult to perform. Psychosocial disability has a negative economic impact on persons with mental illness, governments, employers, and society. Stigma and lack of psychosocial rehabilitation remain a challenge for persons with mental illness. Recommendations to reduce psychosocial Recommendations South Africa should move towards equitable disability include access to health care for persons with mental illness. Early intervention recovery-oriented management of mental services must be established. Workplace environments that are much more willing to illness in the workplace, accommodate persons with mental illness must be built. There must be prioritisation of South establishment of African research on mental health. Legislative and policy improvements are necessary, recovery-oriented especially with regard to the Medical Schemes mental health services, Act (No. 131 of 1998). prioritisation of South African research on mental health.
Click to navigate to Chapter 2 Reducing psychosocial disability for persons with severe mental illness in South Africa xiii CHAPTER AT A GLANCE 3 Improving the health of children and adults with intellectual disability in South Africa: legislative, policy and service development Sharon Kleintjes, Judith McKenzie, Toni Abrahams, Colleen Adnams
The aim This scoping review provides a 10-year country-level overview of relevant legislation and policy, services, training and capacity development, and advocacy to promote the health and wellbeing of persons with intellectual disability (ID).
Key findings • Improved policies on early detection, identification and intervention are needed for children with, or at risk for ID. • Deinstitutionalisation policy promotes community-based mental health care, but funding has not followed to ensure quality care. • Supported employment increases social inclusion, skills and income. • Poorly supported caregivers may leave employment, deepening family poverty. • Caregiver stress is associated with lack of respite, Policy data from this inadequate support, and limited involvement in decision- making. review reflect a need • Caregivers may have low levels of health literacy and practical skills. for improved policies • Provider partnerships with caregivers and people with ID on early detection, can promote empowerment. identification and intervention in the Recommendations • Review outdated legislation and terminology, and develop case of children with, dedicated disability legislation. • Prioritise reduction in preventable causes of ID, as well as or at risk for intellectual early identification and intervention. • A family-centred approach is needed, emphasising and developmental community-based health-related supports. disabilities. • Support capacity-building of caregivers.
Click to navigate to Chapter 3 xiv South African Health Review 2020 CHAPTER AT A GLANCE 4 Health legislation and policy: a focus on disability Andy Gray, Yousuf Vawda
The aim To provide a brief, but critical, examination of the legislative and policy steps taken to address UHC universal health coverage, with particular emphasis on equity and the extent to which adequate provision is made for the services needed by persons with disabilities. The chapter also provides a brief summary of selected health- related secondary and tertiary legislation and discusses major health-related jurisprudence.
Key findings In many ways, 2020 has been a year ‘on hold’, with specific major health-related legislative processes delayed or in abeyance. Viewed from the perspective of those with disabilities, much of the existing legislation appears to pay little more than lip-service to South Africa’s Viewed from the international obligations and the fine promises entrenched in the Constitution and the National perspective of persons Health Act. The slow progress with regard to health equity for disabled persons is a sad with disabilities, much of commentary on the failure of both distributive the existing legislation justice and the protection of human rights. Due in part to the disruption caused by the appears to pay little more COVID-19 pandemic, progress on the National than lip-service to South Health Insurance Bill has been limited. Africa’s international obligations and the fine Recommendations If the resources required to ensure the integration promises entrenched in of services signalled in the Framework and Strategy for Disability and Rehabilitation Services the Constitution and the in South Africa 2015-2020 are to be mobilised and equitably applied, they need to be explicitly National Health Act. referenced in the benefit package to be delivered under National Health Insurance.
Click to navigate to Chapter 4 Reducing psychosocial disability for persons with severe mental illness in South Africa xv CHAPTER AT A GLANCE 5 Framing the debate on how to achieve equitable health care for persons with disabilities in South Africa Hannah Kuper, Jill Hanass-Hancock
The aim The intention of this chapter is to frame the debate on how to achieve equitable healthcare coverage for persons with disabilities in South Africa. To achieve this, a review was done of the needs and access gaps experienced, the drivers of inequity, and potential levers and solutions to resolving these issues.
Key findings Persons with disabilities in South Africa continue to have inequitable access to health care, as they experience a range of additional barriers when seeking care (access, informational, attitudinal, and/or financial barriers). An increased focus on persons with disabilities is needed urgently if the country is to achieve Universal Health Coverage. Pockets of good The persistent health practice exist that can inspire thinking on ways to improve health-service access. inequity experienced by persons with disabilities Recommendations can perhaps most Greater levels of political will, leadership, and funding are required to implement the robust fundamentally be disability-inclusive policies and plans that exist in attributed to a lack of South Africa. It is crucial to improve the amount and quality of data on disability-inclusion through relevant data to inform monitoring and research. This will help to identify and address key gaps, and aid understanding of planning. what improves service provision for persons with disabilities.
Click to navigate to Chapter 5 xvi South African Health Review 2020 CHAPTER AT A GLANCE 6 HRH planning for rehabilitation services: a focus to reduce inter-provincial inequities Ritika Tiwari, Lieketseng Ned, Usuf Chikte
The aim Public sector rehabilitation workforce planning 743 RTs in South Africa is inadequate and the impact is reflected in critical human resource shortages, maldistribution of these resources, and limited access to rehabilitation services. The aim of this chapter is to estimate gaps and project additional need from 2020 to 2030 for the three rehabilitation therapist (RT) categories, using an equity-based HRH planning approach to reduce existing inter-provincial 2020 2030 inequities. HRH HRH Key findings To maintain the current inter-provincial density of occupational therapists, speech therapists and audiologists, and physiotherapists (forecasting historical growth trends), an additional 743 RTs will be needed. To increase workforce ratios in the three lowest-scoring provinces would require an additional Policymakers should 837 RTs, and in the six lowest-scoring provinces this would require an additional 1 214 RTs. Meeting plan, create posts, international benchmarks would require 42 523 RTs. and deploy trained professionals using Recommendations equity-based HRH In the short-term, training of discipline-specific mid- level workers should be re-instated. In the mid-term, forecasting. community-based rehabilitation workers should be supported and trained to enable work across traditional health and social service boundaries. In the long-term, policymakers should plan, create posts, and deploy trained professionals as per the equity-based HRH forecasting exercise undertaken in this study. Lastly, national training capacity should be built.
Click to navigate to Chapter 6 Reducing psychosocial disability for persons with severe mental illness in South Africa xvii CHAPTER AT A GLANCE 7 Social security benefits and disability assessment in the working-age population in South Africa Blanche Andrews, Shahieda Adams
The aim In addition to access to core health services, persons with disabilities require access to services providing for the medical assessment of disability. These assessments form the gateway to accessing various social security benefits. The chapter looks at medical assessment of disability across social security structures.
Key findings Medical assessment of disability takes place within the broader context of the legislative and social security framework. In this sense it is not only a medical process but includes legal and administrative components. Assessments are not performed in a uniform manner across the different social security benefits. There is a paucity of detailed data and critique related to the assessment process in the Evaluation of disability South African setting. in the working-age population is key in Recommendations accessing benefits in A framework is outlined for disability assessment across social security benefits. These assessments South Africa’s social should focus not only on compensation but also on the integration of persons with disabilities into the security framework. workforce and society, thereby aligning the disability- assessment process with the principles outlined in the United Nations Convention on the Rights of Persons with Disabilities. Adoption of the framework will enhance the quality of medical assessments performed and allow for a more standardised and inclusive approach to disability evaluations across all social security benefits.
Click to navigate to Chapter 7 xviii South African Health Review 2020 CHAPTER AT A GLANCE 8 Perinatal depression and anxiety in resource-constrained settings: interventions and health systems strengthening Simone Honikman, Siphumelele Sigwebela, Marguerite Schneider, Sally Field
The aim This chapter describes select service implementation examples from low- and middle-income countries providing interventions for perinatal depression and anxiety. The aim is to analyse these interventions with regard to how they adhere to good practice guidelines and how they strengthen the health systems in which they are located.
Key findings The three cases described in the chapter are the Maternal Mental Health Project (Uganda), the Perinatal Mental Health Project (South Africa), and the Thinking Healthy Programme (Pakistan). The projects used stepped-care, multi-component care and collaborative care models integrated within maternal and child health services, and drew on evidence-based intervention elements. Workforce strengthening occurred through training and supervision. Ministry of Health partnerships supported the sustainability and scalability of the Perinatal mental interventions. health services can be integrated into Recommendations maternal and child • Perinatal mental health services should be integrated into maternal and child health services in resource-constrained health services settings. • To ensure quality and effectiveness of these services, the in resource- following need to be addressed: - Health workforce strengthening through a range of constrained settings capacity-building and supportive approaches. - The design of interventions that simultaneously address and may function both social determinants and psychological distress. • For scale up of these services, the following need to be to strengthen the addressed: - The availability of targeted health financing. health system. - The development of relevant mental health targets and indicators integrated within the Health Information System. - The development of mechanisms to support leadership and governance of the health system.
Click to navigate to Chapter 8 Reducing psychosocial disability for persons with severe mental illness in South Africa xix CHAPTER AT A GLANCE 9 Community-based peer supporters for persons with disabilities: experiences from two training programmes Gillian Saloojee, Maryke Bezuidenhout The aim This chapter describes the development and implementation of peer-supporter-led training programmes by two non-profit organisations. Parents of children with cerebral palsy (CP) and adults with spinal cord injuries (SCIs) respectively were trained and employed by Malamulele Onward, and the Manguzi-based Siletha Ithemba.
Key findings Formal and informal evaluation of both programmes demonstrated their value. The Malamulele Onward trained parent facilitators assisted caregivers to understand CP, and helped them learn how to care for their children in helpful ways and how to transform a sense of hopelessness, isolation and guilt into pride, acceptance and increased self-confidence. Clients with newly acquired SCIs experienced easier inclusion and integration back into family and community settings. Peer supporters also assisted in addressing some of the inequities in access to Peer supporters rehabilitation, particularly in resource-constrained settings. assist in addressing some Recommendations of the inequities • Funding is required. Peer-supporter micro-enterprises that contract to government departments and other service in access to providers are one option for long-term sustainability of peer- supporter programmes. rehabilitation, • Professionalisation and accreditation of the training, for example via a qualification with the Quality Council for particularly Trades and Occupations, would make peer supporters more employable and guarantee the quality and standard of training. in resource- • For peer supporters to work independently, creative transport solutions are needed. constrained • Integration of peer supporters into existing rehabilitation settings. services requires attitudinal change among professionals, and recognition of the expertise of ‘non-professionals’. • Exposure to successful peer-supporter programmes at undergraduate level may assist in ensuring that rehabilitation services are more inclusive.
Click to navigate to Chapter 9 xx South African Health Review 2020 CHAPTER AT A GLANCE 10 Early childhood intervention: the Gauteng experience Sadna Balton, Annika Vallabhjee, Elma Burger
The challenge In Gauteng, services to children have traditionally been offered in a fragmented, siloed approach across levels of service delivery. This has resulted in children at risk for or with developmental delays and disability being identified and referred late for intervention.
The aim This chapter aims to provide an overview of the process of developing an early childhood intervention (ECI) workgroup, and to highlight activities undertaken by the workgroup to facilitate improved services to children and their families in Gauteng.
Young children with Key findings Challenges experienced by therapists working disabilities often miss in the field include lack of guidance and leadership, late identification and referrals, out on intervention poor intersectoral collaboration, and the need for capacity building. Solutions to address the services and family identified concerns include: • Development of an ECI policy support in the first few • Guide to getting started document • Stakeholder engagement critical years of life. • Workshops and conferences • Resource development
Recommendations In order to progress the ECI agenda in Gauteng it is critical that the proposed policy be finalised, adopted and implemented. ECI should become a national priority at policy level, with appropriate indicators to hold all stakeholders accountable.
Click to navigate to Chapter 10 Reducing psychosocial disability for persons with severe mental illness in South Africa xxi CHAPTER AT A GLANCE 11 Communication vulnerability in South African health care: the role of augmentative and alternative communication Kirsty Bastable, Shakila Dada
The aim This chapter reviews the literature on use of augmentative and alternative communication (AAC) among individuals with communication vulnerability in healthcare settings. The results are discussed in relation to the South African context, and recommendations are made for policy and practice.
Key findings AAC provides a successful mechanism for patients to communicate with healthcare workers in intensive care, general health care and dental health care. Both high-technology and low-technology AAC were implemented successfully, and staff and patients were positive overall about the effects of AAC. Individuals with communication Recommendations AAC can provide a mechanism of communication vulnerability are at risk for for patients who are unable to speak either decreased participation permanently or temporarily. Use of AAC could benefit not only individuals with disabilities in the healthcare system, but also those with low literacy, and those with cultural and language differences from leading to an increased their healthcare providers. In the South African context, low-technology AAC is proposed as a risk for adverse events feasible option, but changes are required at all and a lack of treatment levels for this to be successful adherence.
Click to navigate to Chapter 11 xxii South African Health Review 2020 CHAPTER AT A GLANCE 12 Assistive technology service delivery in South Africa: conceptualising a systems approach Surona Visagie, Elsje Scheffler, Nikola Seymour, Gubela Mji
The aim The aim of this chapter is to review assistive technology (AT) service provision in South Africa using a systems-approach lens and to provide recommendations for future AT services that build on current best practice strategies and international best practice guidelines.
Key findings AT services in South Africa are not guided by comprehensive, overarching national policy. Current services are hampered by financial constraints; insufficient numbers of and inadequately trained service providers; variation in provision among different provinces, between levels of health care, and across geographical areas; barriers in procurement and delivery systems; and inadequate integration of AT services. Assistive technology services and products Recommendations are essential to The development of integrated, intersectoral policy for accessible, equitable, person-centred AT services is many persons with recommended. This must be monitored and evaluated through assessing user outcomes, under guidance of impairments, as they the National Department of Health. Important focus areas include stimulation of local product design enable participation in and manufacture, specified ring-fenced budgets, a heterogeneous provider corps that can provide a life roles and community range of products at district level, communication and collaboration between different stakeholder integration. groups, identification and upscaling of clinical good practice models, and a collaborative research and dissemination agenda.
Click to navigate to Chapter 12 Reducing psychosocial disability for persons with severe mental illness in South Africa xxiii CHAPTER AT A GLANCE 13 Health-system strengthening that matters to rural persons with disabilities: lessons from the Eastern Cape Kate Sherry, Steve Reid, Madeleine Duncan
The aim This qualitative, ethnographic study aims to understand how persons with disabilities and their households living in a remote rural area make decisions about engaging with the healthcare system, how they experience this engagement, and how this process unfolds over time in the context of their everyday lives.
Accessing health Health services needs Key findings Decisions of persons with disabilities and their families around seeking healthcare are complex, weighing up the multidimensional costs of service access against the functional and economic costs of the health complaint, and the perceived likelihood of receiving help. Healthcare workers’ often limited understanding of disability and the life context and lived experience of participants have a strong negative impact on the quality Persons with disabilities and effectiveness of care. At the same time, the findings revealed the unexpected power of are known to experience person-centred engagement offered by certain healthcare workers, which can outweigh serious marginalisation in both system defects in meeting the needs of persons the health system and with disabilities. broader society, often for related reasons, Recommendations A range of health system measures is proposed that such as environmental support and promote person-centred, context-sensitive healthcare practice. These include exposure of facility- barriers, increased risk based health professionals to community context (e.g. through regular outreach), decentralising of disability of poverty, and social services to build capacity at community level, and longitudinal relationships between healthcare workers exclusion. and persons with disabilities, among others.
Click to navigate to Chapter 13 xxiv South African Health Review 2020 CHAPTER AT A GLANCE 14 The role of social workers in addressing caregiver burden in families of persons with
Norethdisabilities Muller-Kluits, Ilze Slabbert
The aim The aim of this chapter is to explore the burdens experienced by family caregivers in the rehabilitation and care of persons with disabilities. The chapter also evaluates how social workers can help to address caregiver burden in a South African context.
Key findings • A Cape Town study of family caregivers of persons with physical disabilities found that family caregivers experience various caregiver burdens, including physical, emotional, financial, and social. • Social workers have an important role to play in multi-disciplinary team service delivery to persons with disabilities and their families. They are guided by policies such as the White Paper on the Rights of Persons with Disabilities (WPRPD). • Specific social work roles, such as educator, broker By facilitating access to and enabler, help in addressing caregiver burden. necessary resources that assist both the Recommendations • Implementation of the WPRPD, especially pillars person with disability 3 and 4, will assist with the integration of persons with disabilities into society, providing more respite and his/her family, social time for caregivers. This could, in turn, address certain caregiver burden concerns, such as lack of workers can also relieve employment opportunities. • Advocacy on the specific roles of social work in the caregiver burden the disability sector would increase awareness of support available to family caregivers to relieve some often experienced by of the caregiver burden. • Social workers’ holistic consideration of the individual family members as in context, along with the role they play in the community, are just some of the expertise that could informal caregivers. be advocated and strengthened in the disability sector.
Click to navigate to Chapter 14 Reducing psychosocial disability for persons with severe mental illness in South Africa xxv CHAPTER AT A GLANCE 15 Disability inclusion in the Northern Cape: a community-based wheelchair service project Ronique Walters, Maria Britz, Erna van der Westhuizen
The aim The aim of the study was to implement a community-based outreach seating model in order to improve wheelchair service provision and access in the Northern Cape.
Key findings • Lack of funding to address shortfalls in local government budget. • Lack of trained rehabilitation therapists available to provide sustainable wheelchair seating services. • Lack of provider and client awareness in terms of referral pathways and how to action them, in order to access services.
Recommendations Persons with long-term • Capacitate local government service providers to ensure systems change and physical impairments sustainability of quality wheelchair service provision. require a mobility device • Understand community context in order to access resources within to establish formal referral pathways and improve service access. their communities and to become active members of society. The wheelchair, therefore, serves as a tool facilitating the inclusion of persons with disability into their communities.
Click to navigate to Chapter 15 xxvi South African Health Review 2020 CHAPTER AT A GLANCE 16 Toward ‘Rehab 2030’: building on the contribution of mid-level community- based rehabilitation workers in South Africa Susan Philpott, Pam McLaren, Sarah Rule
The aim This historical review aims to explore the history of community-based rehabilitation (CBR) workers, with a view to understanding factors that have shaped the current status of CBR in South Africa and how this can provide a platform for the country to achieve the vision of Rehab 2030.
Key findings Globally, through the SDGs and Rehab 2030, there has been a growing recognition of the importance of CBR as a means to realise the rights of persons with disabilities. However, over the past 40 years in South Africa various factors have influenced the training and deployment of mid-level community rehabilitation workers (MLCRWs), including shifts in the approach to health, and policy developments that have not prioritised CBR services. Although there was an early alliance between persons with disabilities and rehabilitation therapists, this was not sustained. Further, different understandings of CBR Unwillingness of and the unwillingness of professional bodies to register MLCRWs have undermined the training and deployment professional bodies of a workforce for CBR. to register mid-level community-based rehabilitation workers Recommendations The chapter recommends that CBR be included in has undermined the a strategy for health care and that advocacy and dissemination of information on CBR be considered training and deployment essential. Further, persons with disabilities and their organisations must be included in planning, of this essential implementing and evaluating CBR programmes. Additional recommendations concern the re-activation workforce. of MLCRW training and the improvement of multi- sectoral collaboration for CBR.
Click to navigate to Chapter 16 Reducing psychosocial disability for persons with severe mental illness in South Africa xxvii CHAPTER AT A GLANCE 17 Reimagining rehabilitation
Adèleoutcomes Ebrahim, Michelle Botha, inDominique South Brand, Karina FischerAfrica Mogensen
The aim This chapter highlights the need to critically evaluate accountability frameworks governing the provision of rehabilitation and development services for persons with disabilities in order to better meet their complex needs.
Key findings Health and rehabilitation outcomes are not only affected by health care and access to services. These outcomes are affected by complex factors linked to the social determinants of health, including social, political, economic, environmental, and cultural factors. Economic instability impacts on the ability of persons with disabilities to achieve better health and rehabilitative outcomes, which in turn impacts on their educational options and livelihood development. Designing indicators that measure both tangible and intangible Recommendations There is a need to look beyond quantitative outcomes is challenging. outputs and impairment management in rehabilitation, and towards qualitative However, this is indicators of holistic, long-term well-being. Recommendations include: recognising and essential if rehabilitation including persons with disabilities as key stakeholders in the rehabilitation process; interventions are to critically evaluating the curriculum for training of new rehabilitation workers; and contextualising facilitate the development the design and implementation of rehabilitation services by shifting from a resource-centred of holistic well-being and approach to a person-centred approach. greater socio-economic inclusion for persons with disabilities.
Click to navigate to Chapter 17 xxviii South African Health Review 2020 CHAPTER AT A GLANCE 18 The intersection between Health and Education: meeting the intervention needs of children and youth with disabilities Alecia Samuels, Unati Stemela, Mpilo Booi
The aim This chapter discusses the intersections between the two prominent sectors (Health and Education) that children and youth with disabilities (CYWD) have to traverse in order to access interventions that promote their ongoing health, development and academic achievements.
HEALTH EDUCATION Key findings CYWD are required to access intervention services from a range of professionals within the same sector and across the two sectors. The siloed, medical-model approach within which many intervention professionals are trained, leads to a lack of coordinated intervention. This results in unnecessary duplication and confusion in terms of roles and responsibilities for intervention despite existing intersectoral While governments policies that should give guidance. often develop separate departments to manage Recommendations intervention services, Intervention professionals should use a participatory framework like the ICF to children and youth with guide collaboration within and across the health and education sectors, while disabilities frequently receive keeping CYWD as the central focus. Practical examples are given to show how overlapping support from this can be achieved. these sectors, making the separation of health and education a false dichotomy.
Click to navigate to Chapter 18 Reducing psychosocial disability for persons with severe mental illness in South Africa xxix CHAPTER AT A GLANCE 19 Ensuring equal access to health services for the Deaf in South Africa Leslie London, Virginia Zweigenthal, Marion Heap
The aim This chapter explores the recent South African literature for health-system innovations that provide Deaf patients with interpreter services to improve their access to quality health care.
Key findings Deaf patients using South African Sign Language (SASL) for communication experience multiple axes of discrimination in accessing quality health care. The lack of professional SASL interpreters in the health services is a key obstacle. Equitable access to health care for the Deaf community will therefore require provision of SASL interpreter services that can address autonomy, confidentiality, empowerment and information sharing. SASL provision may heighten awareness of disability as a human rights issue, to the benefit of other users with disabilities. Deaf patients using South African Recommendations Sign Language for • SASL interpretation services should be provided in the South African healthcare system. communication • Provision of adequate SASL interpretation services should be complemented by other experience multiple programmes that boost the agency of the Deaf and overcome obstacles. axes of discrimination in • Prioritisation of SASL interpretation services should focus on services meeting particularly accessing quality health important needs, such as ophthalmology and maternity services. care. • Reframing health care within a human rights framework will enable Deaf patients to be active agents in demanding services suited to their needs and achieving a more responsive health system.
Click to navigate to Chapter 19 xxx South African Health Review 2020 CHAPTER AT A GLANCE 20
CandyHealth Day, Andy Gray, and Thesandree Related Padayachee, Annibale Indicators Cois
The aim The indicators chapter chapter aims to provide a repository of data, at national and provincial level, particularly focused on routine data sources but also capturing major surveys and global reports. While a longer-term focus on the progress towards universal health coverage remains in the background, the key theme in 2020 is equitable access to health care for persons with disabilities.
Key findings This chapter shows that routine health information systems, bolstered by representative national surveys, can allow the state of health of the nation to be described and tracked over time. Some sensitive systems have already detected the profound impacts that COVID-19 has wrought. However, routine health- information systems are poorly organised and do not allow fine monitoring of health-system access among Routine health- persons with disabilities, a shortfall that impacts information systems negatively on their health status. are poorly organised and do not allow fine Recommendations Carefully planned disaggregation of routine and monitoring of health- survey data can reveal the extent to which persons with disabilities enjoy equitable access to healthcare system access among services, or are denied this right. However, this requires designation of disability status as a persons with disabilities, dichotomous variable. As progress is made towards implementing National Health Insurance, routine a shortfall that impacts data systems will need to reflect both public and private sector provision of services. COVID-19 has negatively on their revealed how important timeous access to accurate, comprehensive multi-sectoral health data are to health status. effective and agile planning and execution of health interventions.
Click to navigate to Chapter 20 Reducing psychosocial disability for persons with severe mental illness in South Africa xxxi REVIEW 1 A transformative approach to disability awareness, driven by persons with disability
Disability-awareness programmes tend to Authors Sandy Heymani be driven by people who are not disabled. Dhanashree Pillayii Victor de Andradeii However, opportunities exist to facilitate Ronel Roosiii transformation in the South African context iii Kganetso Sekome and for persons with disabilities to drive such awareness programmes.
Disability awareness may not always be optimal, especially approach to facilitate the implementation of policies and in resource-constrained settings. Moreover, disability- practices surrounding disability within a community of awareness programmes tend to be driven by people who practice. Lastly, the chapter illustrates the role reversal that are not disabled. However, opportunities exist to facilitate occurs when persons with disabilities become the educators transformation in the South African context and for persons and providers of a service, compared with when they are with disabilities to drive such awareness programmes. recipients of services. Two-fold transformation will be addressed in this chapter, using the People for Awareness of Disability Issues (PADI) The information provided highlights the need for curriculum project as an example. Two-fold transformation includes transformation that is inclusive, incorporating persons with empowering persons with disabilities to be educators, disabilities in the planning and in the execution of theory and transforming the views and perceptions of students in in practice. A key factor that needs to be highlighted is the therapeutic professions at institutions of higher learning. benefit of utilising persons with disabilities as educators to shape the views of students via real-life encounters in This chapter explores how the therapeutic professions view urban and rural contexts. There needs to be collaboration disability, namely using the World Health Organization’s between the relevant stakeholders to ensure that policies International Classification of Functioning, Disability and and procedures are implemented on the ground during Health (ICF). The chapter goes on to present the PADI therapeutic service, thus ensuring disability awareness and project as an experiential educational teaching and learning practice.
i People for Awareness of Disability Issues ii Department of Audiology, University of the Witwatersrand, Johannesburg iii Department of Physiotherapy, University of the Witwatersrand, Johannesburg
Click to navigate A transformative approach to disability awareness, driven by persons withto Contentsdisability 1 user due to paraplegia, will require the same transport system Introduction adjustments when travelling in their respective communities. If the public transport system is not accessible to a wheelchair Disability is not only a physiological descriptor. It is a user, both these individuals will experience disability and nuanced and layered concept and experience because it participation restriction. Their disability experienced is not includes biological, cultural, linguistic, and other dimensions. related to the permanence of the physical injury sustained, This nuance and layering is reflected in the words used to or their level of motivation, but relates rather to the restrictive describe disability. A medical perspective, which focuses physical environment that they encounter. attention on the medical aspects of disability, was previously espoused by the World Health Organization (WHO), which In response to the medically dominant stance and the initially distinguished between impairment, disability and contrasting social model of disability, the WHO formulated handicap, where the word ‘impairment’ referred to “any loss the International Classification of Functioning, Disability or abnormality of psychological or anatomical structure or and Health (ICF), which is a measure used to describe and 4-6 function”.1 ‘Disability’ was described as a consequence of assess health and disability. The ICF framework covers a ‘impairment’ since it referred to “any restriction or lack of wide range of possible health domains described at physical, ability to perform an activity in the manner or within the range individual and societal level, including contextual concepts. considered normal for a human being”.1 ‘Handicap’ referred The first part of the ICF reviews aspects related to individual to “a disadvantage for a given individual, resulting from an body structure and function and whether differences are impairment or disability that limits or prevents the fulfilment present that result in impairments; this section also reviews of a role”. The terminology used in this earlier classification the person’s ability to perform activities of daily living, and/or is problematic since it appears to benchmark people around lastly, the person’s ability to participate in his/her community. normality, as in use of the phrase “normal for a human being”,1 The second part of the ICF describes contextual factors that suggesting that persons with disabilities are abnormal. may influence disability, namely the environment that the person functions in, and lastly, the person’s personal factors. It has been suggested that disability is also a social construct Contextual factors may be internal personal characteristics, with implications for people’s participation in society,2 and that such as coping styles, which can influence the extent to it may be “a form of social oppression where the appropriate which a person participates in society. They may also response would be political action rather than medical be external factors relating to physical and information or social care”.3 More specifically, disability is created by access, as well as to policies, service delivery systems and society through an unaccommodating physical environment, institutional arrangements. Knowledge and attitudes are also brought about by attitudes and/or other features of the social environmental factors that have a significant impact on service environment rather than by an attribute of an individual.4 For provision and level of participation. Figure 1 provides an example, a person using a wheelchair during recovery from outline of the ICF framework. bilateral lower-limb fractures, and a permanent wheelchair
Figure 1: Outline of the International Classification of Functioning, Disability and Health, 2020
HEALTH CONDITION (Disorder/Disease/Injury)
BODY STRUCTURE & FUNCTION ACTIVITY PARTICIPATION (Impairment) (Limitations) (Restrictions)
ENVIRONMENTAL FACTORS CONTEXTUAL FACTORS PERSONAL FACTORS
Source: World Health Organization, 2020.6
2 South African Health Review 2020 Within this view, it seems that disability per se is not interactions, and that this exclusion is amplified because considered problematic, but that interactions between of “shame, stigma, or cultural standards”.7 Despite political factors may be problematic, hindering level of participation advances since the 1994 general election, South Africa and activity. More specifically, the role of context is still has one of the highest income inequality ratios in the accentuated in the ICF framework because factors within world, paired with an increase in inequality between races.17 the environment are recognised as being able to assist or The current situation serves as a reminder that poverty is facilitate participation (facilitators), or they may limit or even not a stagnant or universal experience, and that there are prevent such participation (barriers).6 social, political, cultural, and historical variables involved in its manifestation.18 The South African landscape is Use of the ICF therefore encourages a bio-psycho-social characterised not only by financial resource limitations, but and person-centred approach to health care,7,8 and also by restrictions in individual domains (e.g. age, health provides a shared language for healthcare practitioners status, gender) and social domains (e.g. access to education, to enhance interprofessional learning and promote a gender roles and expectations)19 because of the country’s multidimensional view of individual health and disability.9,10 particular history, potentially resulting in very vulnerable Recent literature also suggests that the ICF framework can livelihoods.20 This vulnerability appears to be especially be utilised in higher education as a conceptual framework significant at the juncture of poverty and disability, often and assessment tool to ensure that the physical built referred to as the disability-poverty nexus.19 environment (e.g. buildings) and educational environments (e.g. teaching platforms) are accessible to and inclusive of The South African situation is one of juxtaposition. The both students and educators.11 The ICF framework can thus interplay between poverty and disability is acknowledged be utilised in health care and healthcare education, as well because “poverty cannot be understood only in terms as in the higher education sphere. of deprivation of income. Rather it may be that there is inequality of access to basic capabilities linked to that disability status…. [That is], poverty is the impossibility for individuals to be and do what they value because of lack of Disability awareness opportunities”.21
Participatory and self-advocacy approach Context drives prioritisation Disability-awareness programmes have the capacity to within a community of practice In advancing the rights of persons with disabilities, self- augment disability knowledge, awareness, attitudes, and advocacy programmes have fostered the premise that acceptance among students in therapeutic professions.12 “individuals with disabilities who are strong self-advocates Disability awareness is shaped by people’s contexts. In often challenge the perceptions of others who view them resource-constrained contexts, as is often the case in South as incapable of making decisions about their own lives and Africa, public resources and facilities tend to be fewer in needing professionals for guidance and protection”.22 In poorer areas, and this may be compounded by restricted their argument for the social understanding of disability, personal resources.13 Therefore, in a context such as South Barnes et al.1 encourage a different way of thinking about Africa, where resources must often be diverted to other pre-established categories, especially regarding disability. needs, funding for disability-awareness programmes Disability-awareness programmes tend to be offered in may not be prioritised. Furthermore, the prioritisation and a variety of ways, including presentations, academic and diversion of resources away from disability-awareness curriculum-based programmes, multi-media programmes, programmes may be driven by shortages in essential contact with a person with a disability, simulations, services related to education, health, and finance, resulting classroom activities, plays and puppet shows.11 However, in limited opportunities for people who are able-bodied in the South African setting, it appears necessary to have to interact with persons with disabilities, and vice versa.14 a participatory approach to disability-awareness activities. Therefore, there is a call to include material resources, Historically, persons with disabilities have not participated employment, education, health, social participation, and in strategic and operational activities here due to the community membership considerations when trying to foster disability-poverty nexus21 that emerged from the socially opportunities for disability awareness.15 Also, within our disruptive and unstable apartheid period. As such, there is context of competing and limited resources, opportunities a need for inclusion and full participation of persons with for social participation and community membership disabilities in matters pertaining to them as espoused by may be compromised for persons with disabilities, as the United Nations Convention on the Rights of Persons are opportunities for them to raise disability awareness. with Disability (UN CRPD) which proposes that “persons Therefore, contextual factors may “either exacerbate or with disabilities should have the opportunity to be actively reduce disability”,16 and influence engagement with and involved in decision-making processes about policies and awareness of disability. programmes, including those directly concerning them.”23 Since persons with disabilities have been marginalised for It appears that the South African context has contributed so long, self-advocacy is needed; persons with disabilities to the exclusion of persons with disabilities from societal can and should participate in the leadership component
A transformative approach to disability awareness, driven by persons with disability 3 to reach individual and common goals.22 Because of the foci and pressures other than disability matters. Curricula importance of contextual considerations in the experience of and lecturers need to provide encompassing programmes disability, due consideration ought to be given to engaging where student clinicians can internalise the value of in contextually appropriate interactions that are respectful of disability awareness and in which they are expected to linguistic and cultural diversity, traditions and preferences, exhibit more than just competence in disability-related historical factors, and a deep appreciation of individual and matters. The term ‘competence’ implies achieving a level group variation to minimise the risk of a preconceived and of technical skill, whereas contextual sensitivity implies stereotyped view of persons with disabilities.24 By bolstering harmony in the interactions between healthcare personnel participatory rather than paternalistic interaction, persons and their clients, families, and communities. There is a with disabilities can lead disability-awareness programmes need to foster fuller engagement between universities, that account for diversity and enhance agency. Furthermore, student clinicians, and persons with disabilities so that, in persons with disabilities can be agents for change and the clinical setting, students and qualified clinicians offer promote disability-awareness progammes for personal a courteous service in which persons with disabilities feel and social development via skills training and the design confident and empowered.31 This can be done by offering of context-specific interaction programmes, especially in services that include sensitivity in the use of language, understaffed and developing contexts.25,26 appropriate information-sharing strategies, attainable goal setting, accessibility, and engagement in agency and power- Communities of practice are “an aggregate of people who enhancing interactions that are respectful of people. Within come together around mutual engagement in an endeavour. this fully-engaged and participatory approach, there is also Ways of doing things, ways of talking, beliefs, values, power the opportunity to espouse values such as “fidelity, altruism, relations—in short, practices—emerge in the course of this confidentiality, integrity, empathy, and compassion”, while mutual endeavour”27 and the communities “are comprised also demonstrating “respect for persons, deference for of individuals who share common concern or enthusiasm elders, reverence for authority figures, family centeredness, about a topic or problem and who deepen their knowledge compassion, [and] empathy”.32 and expertise about the area by frequently interacting with one another”.28 Within communities of practice, participatory This combined participatory and community-of-practice opportunities exist for collaborative approaches to approach suggests the need for practice that is in harmony advancing the disability-awareness agenda and the with people’s contexts. In more seriously considering knowledge base relating to disability. This is also true for context, agency, structure, self-efficacy, and other concepts particular contexts where tacit knowledge and experience raised earlier, biomedical attempts at proposing more can merge with theory and pre-established knowledge to social frameworks, such as the ICF, can lead to closer, more fine-tune that knowledge, apply it, and evaluate it within sensitive and appropriate interactions.31 This combined other contexts, such as universities. Therefore, it seems that approach proposes that frameworks such as the ICF should a community of practice can enhance agency in persons include the abovementioned concepts (context, agency, with disabilities as the latter contribute their experience structure, self-efficacy, etc.) so that frameworks are all- and knowledge; this collaboration can enhance efficacy in encompassing, humanist, and considerate. Contextual persons with disabilities and collective efficacy.26 sensitivity is not a technical competence but is nurtured and applied within a specific context, while recognising Community support could reinforce the value of a the impact of that particular context and transcending the community of practice, especially among persons with checklists and lip service paid to disability competence and disabilities who are advocates for disability and who drive abilities in medical settings. disability-awareness programmes. The concept of ubuntu or humanity may also be envisioned, although in this setting This blending is crucial in clinical settings where the social it may not always be attainable due to limited resources perspective and participatory approach may not dominate, in the community. If disability-awareness programmes are so that persons with disabilities can know that they matter exclusively led and driven by able-bodied-people, albeit and have the opportunity to talk about their experience as people with deep insight into disability, then competence part of the consultation, because failure to engage with end- in disability matters more than lived experience. This may users’ agenda can lead to misunderstandings, dissatisfaction create a scenario where interaction with persons with and poor outcomes.31 Moreover, by fostering communities of disabilities is reduced to a technical skill, with a checklist of practice in which persons with disabilities can interact with do’s and don’ts.29,30 others, including student clinicians, the necessary checks and balances can be maintained so that the community Formation of student clinicians in disability of practice does not become another instrument to exert awareness power over persons with disabilities. For similar reasons, Universities may champion disability rights and diversity as the composition ought to be diverse, including a range of well as inclusion of persons with disabilities, but disability people who show an interest in disability, have disabilities, awareness may not be their primary focus as they may or have a relationship with persons with disabilities, among have other priorities. Moreover, students may come from others. Communities of practice can offer recognition of resource-constrained contexts and they may have primary the contributions, value, and resources of different people,
4 South African Health Review 2020 which all members can benefit from, and confirm “the and power shift to ensure that the voice and actions of importance of a consulting and supporting strategy using a people with disability are received.39-43 Transformation and resource-oriented approach aimed at empowerment”.33 change are dynamic and ongoing processes in any context, akin to the transformation of teaching and learning practices Cognisant of context-specific needs and the intrinsic at higher-education facilities in developing countries such as knowledge of persons with disabilities, true agency means South Africa. “the capacity to transpose and extend schemas to new contexts”.29 This means that especially within a community of The People for Awareness of Disability Issues (PADI) project practice, persons with disabilities can share their knowledge at the University of the Witwatersrand is an example of the and experience and mould the support framework rare transformation process that occurs when the teaching accordingly, so that it is pertinent and relevant to the and learning curriculum includes a programme developed, specific context. In being able to support others, including organised, and facilitated solely by persons with disabilities. student clinicians, in even the smallest ways, persons with The project was established in 1987 to bridge the gap within disabilities can build their own personal resources. This South African society in relation to understanding disability also boosts their psychological and overall well-being and the lives of individuals with these disabilities. Thus PADI because there is “mutuality and a common focus regarding has been in existence for over 32 years, and the project has the key issues among members", which “inspires them to been facilitating “experiential learning life skills programmes contribute their knowledge and ideas”.28,34 This is particularly and workshops" in rural and urban areas throughout the true when the existing structures, which are meant to offer country. All PADI facilitators are persons with disabilities opportunity for agency, are inefficient or unavailable, as is who serve as advisors in their respective communities and the predominant situation in South Africa.15,17 who offer peer counselling and advice on accessibility issues. PADI has outlets in Ehlanzeni District in Mpumalanga and the peri-urban town of Pietermaritzburg in KwaZulu- Natal, with the head office located in urban Johannesburg. Transformation The organisation has linked with various public-sector departments such as the South African Department of Social Development, as well as with schools and universities Transforming education on disability issues to educate and create awareness on matters related to Transformation and decolonisation were debated during disability. apartheid at underground meetings of activists who fought against the government of the time, with a view to At the University of the Witwatersrand, transformation of establishing a democratic South Africa, aka ‘Azania’.35 Post teaching and learning practices is evident in the audiology, 1994, the debates became a reality and South Africa started physiotherapy, and speech-language pathology degrees an era of development towards fair policies and practices from year one of study, as disability is taught through the to transform the country. The South African Disability lived experience of PADI facilitators and through interaction Rights Movement (DRM) began to actively challenge the with them. PADI challenges the norm and status quo of barriers that existed as a result of apartheid, and birthed the teaching within the healthcare sector. The project is run by slogan ‘nothing about us without us’.35 The DRM pressured persons with disabilities who assume the role of ‘educator’ the newly instated democratic government to stand instead of the role of client or patient. A shift in agency and accountable for the inclusion of persons with disabilities power is evident as the PADI project allows the student to in policy-making processes. The higher education sector consciously and practically engage with, and learn directly in South Africa has led the movement for freedom and from, the person with a disability. transformation,36 however, South African society has a role to play in transforming the present to account for the injustices of the past, and active participation is warranted in every sector. Disabling normative teaching and learning Disability project practices in the South African context may be long and arduous,37 but interrogation of these old yet still-used teaching and learning pedagogies is necessary to ensure Undergraduate audiology, physiotherapy, and speech- transformation of the teaching, learning, and practices of language pathology curricula at the University of the student clinicians.38 Witwatersrand include teaching and learning activities to educate students progressively about the ICF framework. Historically, persons with disabilities have had no agency Teaching and learning activities include theoretical in South African teaching and learning pedagogies, with tuition, practical application of concepts taught, and dominant able-bodied teachers being the sole providers clinical experience when senior students work in different of knowledge and experience. There is a dearth of healthcare sectors. The first-year PADI project was programmes and projects developed and dominated by the implemented more than a decade ago as a means of lived experience of people with disability, despite an existing educating the student body on concepts related to disability. body of literature highlighting the need for a role reversal The PADI group holds seminars with the respective student
A transformative approach to disability awareness, driven by persons with disability 5 cohorts in which they share real-life personal experiences through interactive games and talks about the challenges Stakeholder collaboration to they face. In sharing these experiences, the students get to ensure disability awareness and have a better understanding of everyday issues faced by persons with disabilities. Students are also made aware of practice how to be an advocate for the social inclusion of a person with a disability. Post-apartheid South Africa saw a transformative shift in policies relating to persons with disabilities. The vision During the project students are placed in small groups of the 1997 Integrated National Disability Strategy (INDS) (of approximately six students) and introduced to a White Paper is “a society for all, one in which persons representative from the PADI group. This enables students with disabilities are actively involved in the process of to understand the difficulties faced by a person with a transformation”.44 The philosophy of the PADI group disability, thus allowing them to think beyond the individual’s promotes the acknowledgement of persons with disabilities impairments. Students spend time with their representative, as equal members of society who contribute immensely during which they enquire about the representative’s to the development of society. The INDS recognises disability, as well as the multidisciplinary healthcare team that services for persons with disabilities can only be that has managed the representative over the years to successfully implemented through the involvement of such optimise his or her health and wellness. In addition, they individuals themselves. observe how the PADI representative functions in his or her work, leisure and home environments, and the students self- Since publication of the INDS, many other public policies reflect on what could be adjusted to make the community have recognised the need to include persons with environment more accessible. The students also get an disabilities in society. Examples include the White Paper opportunity to assess their immediate environment, such as for Post-school Education and Training of 2013, which was the university premises, for issues related to accessibility a transformative policy advocating for improvement in for persons with disabilities who depend on wheelchairs access to higher education for persons with disabilities.45 or other mobility assistive devices. Stemming from their At the University of the Witwatersrand, PADI lives up to interaction with PADI, students are able to make the wider this transformative approach by engaging the university’s community more aware of daily activity challenges for Disability Rights Unit and exploring innovative ways of persons with disabilities, thus making the environment more making the university an accessible environment for persons responsive to the needs of persons with disabilities. This with disabilities. The university has established its own includes aspects such as improving wheelchair access, policy for students with disabilities; this policy is committed identifying enablers and barriers that may influence a to creating equal opportunities for persons with disabilities student with disability’s ability to function independently in and ensuring their integration in all areas of student life. his or her environment, as well as a better understanding of All university departments have put individual measures in the caregiver’s role and needs when taking care of or living place to ensure that the vision of this policy is realised. with a person with a disability. Another policy document pertaining to persons with Anecdotal learning outcomes from students’ feedback disabilities (due for review in 2020) is the Framework received on completion of the project include: and Strategy for Disability and Rehabilitation Services in • Spending time with their representative during the South Africa.46 This framework aims to improve access to year taught the students how to be more accepting services, particularly rehabilitation services for persons with of persons with disabilities and those of other races, disabilities, and recognised the need to involve persons with religions and cultures. disabilities during the policy process. The outcome of this • Students learned that family and community support policy document reflects the South African government’s are essential for the wellbeing of an individual with a commitment to an increasingly equitable and inclusive disability. society, which aims to ensure “a long and healthy life for all • Students became more aware of the daily physical, South Africans”. However, recent policy documents, such as social and environmental struggles that people with the National Development Plan vision for 2030, do not state disability must overcome. explicitly how the South African government aims to develop • Students realised that although having a disability can things for persons with disabilities. Their specific needs are be very difficult at times, it should not define or stop one not addressed, creating a flaw in the policy.47 Nonetheless, from living one’s life. there appears to be a shift in most policies in the South African context towards a more “disability friendly” policy environment. While these policies are well-intentioned, there is lack of collaboration among different stakeholders in terms of implementing disability policies on the ground to ensure disability awareness and practice.
6 South African Health Review 2020 The changing landscape References
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A transformative approach to disability awareness, driven by persons with disability 9 REVIEW 2 Reducing psychosocial disability for persons with severe mental illness in South Africa
Some of the challenges of psychosocial Authors Mvuyiso Talatalai disability include lack of epidemiological Enos Ramanoii Bonginkosi Chilizaiii data, the complexity of assessing impairment, the economic impact, stigma, and recovery.
Severe mental illness, which includes disorders such as Some of the challenges of psychosocial disability include schizophrenia, bipolar disorder and major depressive lack of epidemiological data, the complexity of assessing disorder, is associated with significant impairment, but the impairment, the economic impact, stigma, and recovery. severity of the impairment and the associated psychosocial disability varies significantly within each disorder. While The recommendations to reduce psychosocial disability South African legislation and policies support interventions include equitable access to health care, management of aimed at reducing psychosocial disability and promoting mental illness in the workplace, establishment of recovery- recovery, implementation remains a challenge. oriented mental health services, prioritisation of South African research on mental health, and legislative and policy This chapter argues that the assessment of psychosocial recommendations. disability should be individualised. Some of the key challenges of psychosocial disability are examined, and recommendations are made to improve access to health care for persons with severe mental illness and to reduce psychosocial disability.
i Department of Psychiatry, University of the Witwatersrand ii Department of Occupational Therapy, University of Pretoria iii Department of Psychiatry, Nelson R Mandela School of Clinical Medicine, University of KwaZulu-Natal
Click to navigate Reducing psychosocial disability for persons with severe mental illness in toSouth Contents Africa 11 reduce psychosocial disability despite global efforts, such Introduction as by the United Nations’ Sustainable Development Goals (SDGs), which make mental health a global priority.15 The Mental disorders vary in the frequency and severity of their consensus report of the South African National Lancet occurrence, from common mental disorders (CMDs) such as Commission found that mental health care is neglected anxiety and trauma-related disorders, to severe mental illness in South Africa, despite good policies and the negative 16 (SMI).1-3 SMI broadly includes disorders such as schizophrenia, economic consequences on affected persons. South Africa schizoaffective disorder, bipolar disorder, major depressive must focus on mental health care and efforts to reduce disorder, and neurocognitive disorders.2-4 The impact of psychosocial disability as an important health outcome in 17 mental illness on populations worldwide remains high, with the effort to attain the SDGs in this country. depression being the leading cause of disability and affecting about 300 million people.5 Excluding persons with psychotic This chapter describes the association between disorders, the South African Stress and Health Survey found a psychosocial disability and SMI. Some of the key lifetime prevalence of 30.3% for any mental health disorder in challenges of mental health and disability, such as lack South Africa.6 In sub-Saharan Africa, the epidemiology of the of epidemiological data, the complexity of assessing burden of disease is evolving, from decades dominated by impairment, the economic impact, stigma, and recovery communicable diseases to an era of disease burden largely are discussed, and the argument is made for the due to non-communicable diseases (NCDs), including mental assessment of psychosocial disability to be individualised. illness.7,8 Over the past three decades there has been a 113.9% Recommendations include equitable access to health increase in disability-adjusted life-years (DALYs) due to mental care, management of mental illness in the workplace, disorders in sub-Saharan Africa, while in the same period there establishment of recovery-oriented mental health services, has been a decline in communicable diseases, despite the prioritisation of South African research on mental health, and contribution of HIV to disease burden.8 Epidemiological data legislative and policy recommendations. on the burden of mental illness and disability remain, at best, extremely limited in South Africa.9
There is an inverse relationship between SMI and Psychosocial disability in SMI socioeconomic status of persons with mental illness, which can be explained by the social causation and social Psychosocial disability in persons with SMI refers selection hypotheses. The social causation hypothesis to difficulties that extend beyond symptom severity. suggests that poor social and economic circumstances Psychosocial difficulties experienced by persons with result in increased risk of mental illness, while the social mental illness include occupational difficulties, challenges selection hypothesis (also called the social drift hypothesis) with interpersonal relationships, and decline in social proposes that persons with mental illness drift into functioning.18-20 Psychosocial disability, therefore, occurs poverty as a consequence of the disability associated with when the environment of persons with mental illness is not 10,11 mental illness. There is a concurrent interplay between adaptive to their symptoms and hinders the ability of persons social causation and social selection in SMI, and without with mental illness to participate fully in society.18-20 In addition appropriate intervention, this results in psychosocial to psychosocial disability, mental illness is associated with a 11 disability in persons with mental illness. higher mortality rate than in the general population, as well as reduced life expectancy.21,22 SDGs provide a shift from The impairment due to mental illness may be difficult to the past global focus on the reduction of mortality, to goals observe directly and quantify compared with impairments that aim at reduction of non-fatal health loss associated with from physical illnesses, yet the impact on the affected NCDs, injuries, and substance-use disorders.15,23 persons and society is significant. In a study by the World Mental Health Survey Initiative in Portugal, persons with Impairment is the “alteration of normal functional capacity mental illness were almost three times more likely to due to a disease” and its extent is evaluated after a diagnosis report disability than those without mental illness, and has been made and there has been adequate management 12 they had higher levels of unemployment. Despite the of the mental illness.24 Disability, which “is the alteration of negative psychosocial and economic consequences of capability to meet personal, social or occupational demands”, psychosocial disability on persons with mental illness, their is due to the impairment associated with mental illness families and the community, prioritisation of mental illness combined with an environment that is not adaptive to the 13,14 through healthcare budgets remains lacking globally. In degree of impairment sustained from the mental illness.24,25 the 2016/17 financial year, only 5% of the total healthcare The severity and prognosis of impairment varies across and budget in South Africa was spent on mental health care, within diagnoses, and the consequent psychosocial disability 13 and most of the expenditure was on inpatient care. The is a continuum ranging from some persons with mental illness underfunding of mental health care, stigmatisation of mental having no disability, to severely disabled persons who are illness, and neglect of persons with disabilities, irrespective not capable of independent living.17 However, some symptom of the cause of the disability, further retards attempts to domains of mental illness, such as psychosis and cognitive
12 South African Health Review 2020 decline, are independent risk factors for psychosocial schizophrenia.36 All psychiatric services should, therefore, disability.26 While a major feature of neurocognitive disorders, be changed to recovery-oriented services that start with cognitive decline is also found in other disorders such as the treating team and the person with SMI, at the time bipolar disorder, depressive disorders, and schizophrenia.27 the diagnosis is made, and that plan for reduction of Psychotic episodes are associated with poor outcomes on psychosocial disability and attainment of recovery. disability assessment and are often associated with poor cognitive function.28 Persistent psychosis and psychosis that is refractory to treatment, especially in schizophrenia, almost always lead to severe psychosocial disability.29 Assessment of disability in SMI
Disability assessment is done for various reasons, including to determine occupational disability, disability claims, Recovery in SMI disability assessment for government grant claims, and assessment of independence in persons with SMI. The Strategies to reduce psychosocial disability must include the initial assessment is to determine level of impairment. reduction of impairment, promotion of resilience and recovery, In mental health, this is done by a psychiatrist and a and addressing of environmental barriers and facilitators to multidisciplinary team that includes a clinical psychologist recovery. It is only relatively recently that recovery from SMI and an occupational therapist. The psychiatrist and clinical has been studied systematically. There has been a concerted psychologist use various psychometric tests to determine effort from persons with SMI to inform the world that personal impairment of persons with mental illness. The occupational recovery is indeed possible. This has culminated, among therapist uses a variety of standardised and non- other outcomes, in a more robust definition of recovery standardised measures to assess impairment and disability that utilises the CHIME framework (CHIME: Connectedness, for persons with mental illness. The multidisciplinary team Hope and optimism about the future, Identity, Meaning in life facilitates an objective and broad assessment that is helpful and Empowerment).30 A recently published South African in the determination of occupational disability, disability study built on this framework to define recovery in the local claims, disability assessment for government grant claims, context.31 The authors found that recovery is an ongoing, and to assist with proper placement and adaptations for gradual process that involves processes such as relating to independence of persons with SMI. self, others, and the world, moving positively forward, (re-) gaining strengths, awareness of difficulties, and clinical Guidelines by the South African Society of Psychiatrists understanding to support personal recovery. Clinicians need (SASOP) on “the management of impairment claims on to understand that personal recovery has very little to do with psychiatric grounds” suggest that ideally, the psychiatrist symptoms of mental illness (persons in recovery may or may involved in the determination of impairment should not not have ongoing symptoms); it is about connectedness and be the treating psychiatrist.24 Mokoka, Rataemane and feeling valued by others, which is influenced by environmental dos Santos37 express concern that the role of the treating barriers and facilitators. Although not linear, and although psychiatrist and the role of the disability assessor are heavily influenced by context, recovery is possible and studies ethically different and incompatible in some respects.37 that have painted a pessimistic picture by implying that there is significantly low recovery in mental illness have been In assessing impairment and disability, occupational criticised for having methodological problems.32,33 therapists perform a functional capacity evaluation (FCE), which assists in determining the level at which a person The vast majority of psychosocial rehabilitation programmes with mental illness is capable of functioning in a particular that support persons with SMI are not recovery oriented, yet context and environment.38 When performing a FCE, the the South African National Mental Health Policy Framework occupational therapist takes a patient history and uses and Strategic Plan (NMHPF & SP) included recovery as a objective assessment tools.39 The FCE is guided by the value and an objective.34 Recovery-oriented services refer to International Classification of Functioning, Disability and the extent that clinicians and the service attempt to facilitate Health (ICF) in order to determine the disability of persons or promote personal recovery. The service needs to include with mental illness.40 The ICF is the relevant framework ingredients such as shared decision making (or person- and classification to use as it focuses on impairment, centred care), and learning ‘what works’ from the persons activity limitations and participation restriction, and the in recovery. Peer support is also an important ingredient in environmental factors that interact with the components.40,41 the service. Non-psychiatric services that include exercise, The presence of an impairment does not automatically mean spiritual activities, pet ownership, acquisition of identity that there is a disability as other factors such as the type of documents (a project from Lentegeur Hospital and the job, and environmental and social circumstances have to be Spring Foundation) have also been found to be important taken into consideration.41 in allowing persons with SMI to build a life beyond the illness.35 Strategies that focus on resilience have also been South African legislation and policies attempt to protect shown to decrease psychosocial disability in persons with and promote the rights of persons with disability in the
Reducing psychosocial disability for persons with severe mental illness in South Africa 13 workplace, including the rights of persons with mental Economic impact of psychosocial disability illness.42,43 The Employment Equity Act (No. 55 of 1998) Psychosocial disability has an economic impact on (EEA)44 stipulates that if a person with mental illness had persons with mental illness, governments, employers, and been ill and is unable to perform his or her essential job society. There are limited data on the economic impact of functions, then the employer may request that the person be psychosocial disability on persons with SMI, but there are assessed for functional disability.44 Appropriate tests should some compelling data on the economic consequences of be used to determine if the person can safely perform the depression and CMDs. The economic consequences of job, and if not, to recommend the appropriate reasonable psychosocial disability for persons with mental illness is dire. accommodations required for the person to perform the Schofield et al.14 reported that the income of persons with work.39,44 Gibson and Strong45 and Ramano and Buys39 advise mental illness aged 45-64 years, who took early retirement that occupational therapists may also assist the employer in from work due to depression, was 73% lower than that of their fulfilling the provisions of the EEA by conducting FCEs.39,45 healthy counterparts who remained in full-time employment. Under-investment in mental health by countries, including South Africa, is well recognised, and by 2030 the world could potentially lose almost 400 billion US dollars due to Psychosocial disability: key lost productivity associated with depression and anxiety challenges disorders.13,50,51 In their study, Schofield et al.14 further illustrated that the national loss of income due to depression alone in Australia was 1 billion Australian dollars per year, with a further Attempts to reduce psychosocial disability involve a number 1.5 billion Australian dollars in income lost due to other mental of key challenges. Psychosocial disability shares some of disorders.14 In addition, there is still the cost of treating these the challenges experienced in the broad area of disability. mental disorders and the cost of caring for persons with In addition, there are challenges related to the neglect and psychosocial disabilities, as well as the lifetime cost of social stigmatisation of mental illness. Some of the key challenges and economic marginalisation of persons with mental illness.14 are discussed below. Stigma Lack of epidemiological data Stigma and discrimination against persons with mental illness Epidemiological data on SMI and psychosocial disability have substantial impact on their psychosocial functioning. remain inadequate in South Africa. Data collection on The Convention on the Rights of Persons with Disabilities national mental health indicators is one of the areas of (CRPD), to which South Africa is a signatory, prohibits unfair action of the NMHPF & SP that was supposed to have been discrimination against persons with disabilities, including implemented from 2013.34 Without accurate data on the psychosocial disability.18 State parties to the CRPD are prevalence of SMI and psychosocial disability, it is difficult mandated to “take effective and appropriate measures, to plan and implement interventions to reduce psychosocial including through peer support, to enable persons with disability. Delay in implementation of the NMHPF and the disabilities to attain and maintain maximum independence, recommendations of the report of the South African Human full physical, mental, social and vocational ability, and full Rights Commission (SAHRC) on the national investigative inclusion and participation in all aspects of life”.18 Despite hearing into the status of mental health care in South Africa,46 the CRPD and other enabling legislation, including the are contributing to the delay in mobilisation of resources for Mental Health Care Act (No. 17 of 2002) (MHCA)52 and the monitoring and evaluation of psychosocial disability.46 Constitution of the Republic of South Africa (Act No. 108 of 1996),53 persons with psychosocial disability continue to be Complexity of assessing impairment and stigmatised and discriminated against in the workplace.18,52,53 disability As a result of stigma, persons with mental illness may delay Assessing impairment in mental illness is difficult due to in presenting for assessment and treatment. One study54 the complexity of psychiatric diagnoses, potential loss of reported that 47% of the general public would not be willing objectivity on the part of treating psychiatrists, and stigma.47 to work closely with persons diagnosed with depression, and There is also a lack of resources to prepare persons with 30% would be unwilling to socialise with them.54 mental illness for return to work, leading to premature declaration of disability.48 Ramano, Buys and de Beer49 found Lack of psychosocial rehabilitation that psychosocial disability assessment is challenging for Psychosocial rehabilitation is known to reduce disability, occupational therapists as they have to assess numerous with some scholars55 believing that it “embodies the factors, such as the employee’s biographical profile, humanistic heart of mental health”.55 Despite the known the employee’s motivation for working, the employer’s benefits of rehabilitation, psychosocial disability remains willingness to accommodate the disability, and the FCE marginalised in terms of holistic funding and treatment of results.49 Occupational therapists in South Africa view mental illness.55-57 Embedded in the goals of the NMHPF FCEs as intensive since the process requires numerous & SP is the improvement of services for rehabilitation in assessments, ranging from psychometric to worksite mental health care in South Africa, but there is still a delay evaluations.39 in implementation of this policy framework.34,46 In the private
14 South African Health Review 2020 sector, the Medical Schemes Act (No. 131 of 1998) (MSA)56 There is also a growing body of evidence from around the and its regulations on prescribed minimum benefits (PMBs) world that early intervention services with multidisciplinary do not obligate medical schemes to fund psychosocial teams improve long-term psychosocial functioning of many rehabilitation.56 Key to the rehabilitation of persons with persons with mental illness. Early intervention services mental illness is rehabilitation teams, which should include focus on reducing the delay to treatment, and on providing occupational therapists. However, occupational therapists intensive treatment during the critical phase of the illness.59,60 are not adequately funded and very few persons with mental illness have access to occupational therapy.55,56,58 Mental illness in the workplace South Africa needs to build workplace environments that are much more willing to accommodate persons with mental illness. Implementation of workplace anti-stigma interventions Conclusion may be one example of a programme that will create a more supportive work environment. This may lead to reduced negative attitudes, improved knowledge and awareness Psychosocial disability highlights the need for investment of mental illness, and improvement of persons with mental in mental health care in South Africa. There are a number illness via increased and potentially earlier help-seeking.60 of key challenges. However, there are progressive policies, such as the NMHPF, and reports such as the one published Earlier return to work, while still in the process of recovery, by the South African Human Rights Commission.46 If these may benefit persons with mental illness. Employment is seen are implemented, there will be improvements in the care of as therapy to most persons and persons with mental illness, persons with mental illness and a reduction in psychosocial as it improves self-esteem, decreases psychiatric symptoms, disability. An improved funding model is required to reduce and reduces social disability. Overall, employed persons psychosocial disability; the model must be fully integrated with mental illness have better quality of life (as subjectively into both the public and private sectors, and consistent with rated), as employment creates social identity and places them the principles of universal health coverage. within social networks.14 Therefore, returning to work may aid persons with mental illness in their recovery, as connection is central to the recovery process. In the case of persons with Recommendations mental illness who are in steady employment, it was found that their mental health costs declined over time.61 Indeed, long-term unemployment itself is associated with mental Equitable access to health care for persons illness.14 Lastly, for persons with mental illness, employment with mental illness is important in maintaining a connection with the community, It is increasingly evident that differential access to care, and potentially also in maintaining personal mental health. economic inequality, and imbalanced risk factor profiles can and do challenge the ability of health systems to achieve Prioritisation of South African research on equitable health outcomes in the face of complex and mental health resource-draining diseases and injuries. The World Health Psychosocial disability should be one of the priority areas Organization (WHO) has recommended that South Africa of the South African research agenda on mental health, should be spending approximately 10% of its health budget with particular focus on epidemiology as well as affordable on mental health care.50 Most provinces in South Africa are interventions that can reduce psychosocial disability. far below this important goal post.13 One potential solution South African data should be organised so that it features that has gained some traction over the last few years, is to prominently in the Global Burden of Disease studies. have a specific ring-fenced mental health budget, which Research will assist in measuring the non-fatal health should be used to implement integrated mental health outcomes of mental disorders, as well as informing public services as envisaged in the NMHPF & SP. With a ring- health measures to reduce psychosocial disability.17 fenced mental health budget, the mental health programme mechanism would be very similar to South Africa’s HIV, Legislative and policy recommendations TB, or Maternal and Child Health programmes, which were With the exception of the MSA, there is adequate legislation significant in making inroads in the fight against HIV and TB and policies in South Africa to protect the rights of persons over the past two decades. with mental illness and accelerate mental health provision, but implementation remains a challenge. MSA regulations Establish early intervention recovery-oriented on PMBs need to be revised in order to ensure adequate services funding of mental health care in the private sector, a South Africa should be moving the majority of psychiatric process that has already been initiated by the Council for services and associated budgets to be more outpatient- Medical Schemes. Implementation of the SAHRC report (and based.34 There is no doubt that a recovery-oriented service timelines) on the national investigative hearing into the status involving persons with mental illness and their families early of mental health care in South Africa will mitigate the delays on in care planning would reduce psychosocial disability. that have already been sustained in mental health care.46
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Back to Contents REVIEW 3 Improving the health of children and adults with intellectual disability in South Africa: legislative, policy and service development
Poor understanding of the field of Authors Sharon Kleintjesi intellectual disability, limited teaching and Judith McKenzieii Toni Abrahamsi training of service providers, and gaps in Colleen Adnamsi legislative reform and funding mechanisms have led to the slow translation of policy gains into improved quality of life for persons with intellectual disability.
This chapter provides a critique of current legislation, services, justice and education sectors. Poor understanding public policy, service development and civil society action of the field of intellectual disability by policy makers and to promote the health, wellbeing and social integration of implementers, limited teaching and training of healthcare persons with intellectual disability in South Africa. and other service providers, and gaps in legislative reform and funding mechanisms have led to slow translation of The chapter reports on the findings of a scoping review of policy gains into improved quality of life for persons with grey literature and peer-reviewed studies published between intellectual disability. In the past decade, peer-reviewed 2009 and 2019. It considers the implication of the United published literature on intellectual disability in South Africa Nation’s Sustainable Development Goals (SDGs) for the has increased in response to emergent human rights issues, health and wellbeing of persons with intellectual disability, but research that informs strategies and interventions to and addresses key issues, role-players, sectors and settings promote the health and wellbeing of persons with intellectual that impact on the lives of persons with intellectual disability. disability has been limited.
The review found that strides have been made toward Recommendations are made on further policy, legislative inclusion of persons with intellectual disability in policy and service reform, research and training, and stakeholder directives to alleviate poverty and hunger, promote inclusive roles in fully realising the SDGs for persons with intellectual education, and improve the (mental) health status of disability in South Africa. persons with intellectual disability within the health, social
i Division of Intellectual Disability, Department of Psychiatry and Mental Health, University of Cape Town ii Division of Disability Studies, Department of Health and Rehabilitation Sciences, University of Cape Town
Click to navigate Legislative, policy and service development to improve the health and wellbeing of people with intellectual disabilitiesto Contents in SA 19 appropriate to provide an overview of current evidence and Introduction to identify knowledge gaps in an area of inquiry.4
Persons with intellectual disabilities (ID) comprise an The United Nations (UN) Sustainable Development Goals estimated 1-2% of the world’s population, most of whom (SDGs) provide a useful framework for review, having live in low-and middle-income countries (LMICs) and clear links to the UN Convention on Rights of Persons with 5,6 are among the most vulnerable and marginalised.1 A Disabilities (UN CRPD). The term ‘Health and Wellbeing’ review of the global burden of disease estimated that is used, as conceptualised in SDG3, which recognises that persons with ID worldwide increased from 118.2 million health is influenced by SDGs other than SDG 3. The review in 1990 to 154 million in 2013. Around 104.9 million have was guided by the following question: What does current borderline and mild ID, and about 49.1 million have research on legislation and policy, services, training and moderate to profound ID.2 Nationally, accurate collection capacity development, and advocacy reveal regarding what and interpretation of epidemiological ID data is hindered is needed to support the health and wellbeing of persons by lack of consensus on definitions and terminology, and with ID in South Africa? varied data-collection methods. A country-level review of public policy and services for persons with ID in South Africa published in 2010 reported that while no reliable data on aetiology of ID in the country are available, the Methods prevalence rate may be higher than in other LMICs due to high rates of preventable causative conditions, such A search was done of government websites as well as as nutritional deficiencies, tuberculosis meningitis, foetal the following electronic databases: PubMed, Scopus, and alcohol spectrum disorder and trauma. The review noted Ebscohost (Africa-wide CINAHL, CINAHL Complete, Medline, that ID remained a low public health priority, with persons Medline Complete, Academic Search Premier, Africa Wide with ID experiencing significant unmet social, health and Info, SocINDEX, APA PsycInfo and APA PsycArticles) using 3 educational needs. appropriately developed search terms. Retrieved documents were analysed thematically for ID, and included six Acts7-12 The aim of this review is to provide a country-level overview and two national policies13,14 that directly reference ID. of current health-related research published subsequent The PRISMA-ScR guidelines (Preferred Reporting Items to the 2010 review, focusing on legislation, public policy, for Systematic reviews and Meta-Analyses extension for services and advocacy to promote the health and wellbeing Scoping Reviews) were followed.15 Table 1 below outlines of persons with ID in South Africa. Scoping reviews are criteria for sourcing studies and selecting studies.
Table 1: Eligibility criteria for inclusion in the scoping review
Inclusion Exclusion
Children and adults with ID • Disability but not ID • Developmental disabilities but not ID • Conditions in which ID is not always present
• Research in South Africa Studies outside South Africa • International studies that include disaggregated data for South Africa
Published in peer-reviewed journals Not published in peer-reviewed journals
English Not English
Published January 2009-March 2020 Studies published outside the timeframe
Figure 1 summarises the selection process for included conducted as the aim of the review was to provide a studies. Author pairs screened the retrieved records for comprehensive overview of the limited available literature.4 eligibility, first by title and abstract, then by full text, after All records were available electronically. The review did not which selection decisions were finalised by all authors. require ethical approval. Quality assessment of the included papers was not
20 South African Health Review 2020 Figure 1: Flow diagram of the search, screening, selection and inclusion of studies
Studies identified n=222
Duplicates excluded n=97 Identification Identification
Titles and abstracts screened by researcher pairs n=125
Screening Excluded after titles and abstracts screened n=53
Studies included for full text Excluded if no specific review n=72 ID data, not South African data, no disaggregated data for Excluded after full text review n=10 South Africa Eligibility
Studies included for analysis n=62
Studies sourced from references of included studies n=2
Included Final studies included for analysis n=64
A data extraction sheet was used to capture data inductively, based on selected SDGs: 1 (No poverty), 2 Key findings (No hunger), 3 (Good health and well-being), 4 (Quality education), 5 (Gender equality), 8 (Work and economic growth), 10 (Reduced inequalities), 16 (Peace, justice and Characteristics of included studies Table 2 summarises characteristics of included studies strong institutions), and 17 (Partnerships for the goals). Data (n=64) by author(s), date, topic, SDGs and findings on the were also synthesised, where available, under the themes: themes noted above. Studies used quantitative (n=26), legislation and policy, services, training and capacity qualitative (n=33), and mixed-method (n=5) designs. development, and advocacy.
Improving the health of children and adults with intellectual disability in South Africa: legislative, policy and service development 21 Table 2: Characteristics of included studies
Legislation and Capacity Author, year Topic Services Advocacy policy development
Adnams, 20103 ID in SA SDG 3: Low priority SDG 16: Address impacts service preventable implementation. causes: high burden of disability.
Berry et al., 201116 Social assistance SDG 3: Assessment SDG 1: Improve eligibility tool required for access of children assessment social grants. with IDD to poverty-alleviation initiatives.
Brown et al., 200917 Teacher resources SDG 4: Educator SDG 4: Offer and coping stress in managing interventions that orientation challenges of promote positive learners with ID can self-regard and erode motivation to build strengths- teach learners with based orientation complex needs. to learners’ capabilities so as to enhance educator resilience.
Calitz, 201118 Psycho-legal SDG 10: Rape challenges victims in court need mediators.
Capri et al., 201819 Rights and SDG 3, 11 & 16: SDG 5: Individuals citizenship Health rights to be require support observed. during legal procedures.
Capri et al., 201820 Esidimeni SDG 3: Poor SDG 11: Improve service decisions remuneration result from lack and training of understanding of carers and of ID. multidisciplinary professionals.
Coetzee et al., Family intervention SDG 3: 201921 for challenging International behaviours service guidelines adapted for SA.
Combrinck, 201722 UN CRPD and GBV SDG 16: Legislation to protect against exploitation, GBV and abuse not sufficiently aligned with UN CRPD.
Donohue et al., Children’s SDG 3 & 4: Low 201423 perspective of priority, service rights barriers impair rights-based access.
Dreyer, 201724 Education and SDG 3: Negative support educator attitudes towards inclusive education.
22 South African Health Review 2020 Legislation and Capacity Author, year Topic Services Advocacy policy development
Engelbrecht, 201925 Inclusive education SDG 3: Understand cultural and socio- economic context when implementing inclusive education.
Erasmus et al., Parent’s perception SDG 4: Address 201626 of children’s rights parent’s prioritisation of children’s right to education and safety.
Freeman, 201827 Deinstitutionalisa- SDG 3: Strict SDG 3 & 17: Lobby tion principles for (de-) for the right to institutionalisation community living: not motivated by improve investment cost saving. in community living and build capacity to live in communities.
Fujiura et al., 201028 National monitoring SDG 10: Improve of the status of national information persons with ID systems and required statistics collected for ID.
Giarelli et al, DD and behaviour SDG 4: Remedial SDG 4: Provide SDG 4: Advocate 200929 problems in school education and teachers with for adaptation children behavioural classroom-based to curricula and support services behaviour- teaching practice needed at schools. management skills. to support learners with ID and behavioural challenges.
Goga et al., 201930 Health programmes SDG 3 & 17: to prevent HIV Address shortage needed of trained healthcare staff, devices.
Hanass-Hancock et Sexuality education SDG 4: Challenge SDG 3: Trainers al., 201831 of untrained staff, need assistance to lack of attention manage difficulties to socio-cultural in delivering context. sexuality education.
Janse van Mental health of SDG 3: Practical Rensburg et al., student nurses and coping skills 201532 training needed to reduce distress.
Knox et al., 201833 Screening for DD SDG 3: Need in HIV-positive/ developmental negative children screening of HIV- positive children.
Kramers-Olen, Sexual knowledge SDG 3 & 16: SDG 3 & 5: Policy SDG 3 & 5: 201734 and consent Importance of to uphold sexuality Reinforce right to capacity assessing sexual rights. consensual sexual consent capacity. expression.
Improving the health of children and adults with intellectual disability in South Africa: legislative, policy and service development 23 Legislation and Capacity Author, year Topic Services Advocacy policy development
Kruger, 201535 Right to education SDG 10: Education SDG 10: Address court ruling policy insufficient separation of for substantive students due to equality. ableism.
Lorenzo et al., Access to SDG 1, 2, 3 201236 livelihood assets & 8: Include among youth disabled youth in employment opportunities.
Lygnegård, 201337 Generic and special SDG 3 & 10: needs of children Include the voices with disabilities of disabled children in research.
Maddocks et al., Caregiver SDG 10: Care SDG 17: Strengthen 202038 perceptions constrained by community care of caring and lack of finance, systems. rehabilitation poor access to rehabilitation, special school placement, and lack of support networks.
Manaka et al., Nurse carer SDG 3: Person- 201839 experiences centred therapeutic relationship between nurse carers and persons with ID is key.
Marlow et al., Screening tools for SDG 3: Identified 10 201940 ASD and DD screening tools.
McKenzie et al., Rights discourses SDG 10 & 16: Ethics SDG 3, 10 & 201241 in education of care approach 16: Recognise recommended. complexity of rights claims made by/on behalf of persons with ID.
McKenzie et al., Research SDG 1, 2, 3, SDG 3 & 17: SDG 10: 201342 and service 4, 5, 8 & 10: Include individuals Improve African development on Include lifespan with ID in policy understanding of ID in an African supports such as development. ID. context self-advocacy, sexuality education, supports for aged and families. Mainstream ID in disability programmes.
24 South African Health Review 2020 Legislation and Capacity Author, year Topic Services Advocacy policy development
McKenzie et al., Health conditions SDG 3, 5, 8, 10 & SDG 3: Staff in- 201343 and support needs 11: Limited access service training in residential to healthcare and can support staff facilities rehabilitation for to innovate, share mental health, practices. challenging behaviours, medication and family support. Limited economic inclusion, community-based services and living.
McKenzie et al., Residential facilities SDG 3, 10 & 16: SDG 3: Ensure that 201444 Human-rights residents retain based service contact with local evaluation needed. community and have opportunity for vocational and life skills development.
McKenzie & Family carers SDG 3, 4 & 5: SDG 4 & 8: SDG 3, 4 & 17: McConkey, 201645 Support future Develop Promote collective planning. Prioritise community- action and community-based based education conversation education, training and training for among caregivers. and leisure options. competence.
McKenzie et al., Inclusive education SDG 4: Shift SDG 4: Train SDG 4 & 17: 201746 for children with ID to systemic teachers, build Promote inclusion to aid caregiver skills, community inclusive learning accredit training. involvement to environments. destigmatise.
McKenzie et al., Democratic rights SDG 10 & 16: 201947 Include persons with ID in gains achieved for disability rights.
McKenzie, 202048 Curriculum SDG 4: Insufficient challenges attention to inclusive education policy implementation.
Meer & Combrinck, Families and GBV SDG 1, 3, 4, 5, 201749 8 & 16: Lack of GBV action due to poverty, reliance on DG or perpetrator, stigma. Provide sexuality rights education, socioeconomic empowerment.
Improving the health of children and adults with intellectual disability in South Africa: legislative, policy and service development 25 Legislation and Capacity Author, year Topic Services Advocacy policy development
Mkabile & Swartz, Caregiver SDG 3 & 5: SDG 3: Integrate SDG 3: Recognise 202050 explanatory models Accessible services traditional and alternative for low-resourced alternative healers. healthcare carers, children. practitioners in Women affected health system. by patriarchal attitudes.
Molteno et al., Psychiatry sub- SDG 3: Need SDG 3: SDG 3: Provide 201151 specialities evidence-based Postgraduate consultation community-based, training and ID sub- support for primary and tertiary specialists needed. integrated policy care. implementation in service delivery across levels of care.
Nqcobo et al., Dental caries SDG 1 & 3: SDG 16: Promote 201252 prevalence Targeted use of interdisciplinary scarce resources. collaboration. High unmet treatment needs due to inaccessible services.
Nqcobo et al., Caregiver SDG 3 & 4: Expand 201953 perceptions of oral caregiver and health teacher oral health education for early detection.
Olusanya et al., DD in under 5s SDG 1, 2, 3, 4 & SDG 3 & 4: SDG 10: Prioritise 201854 8: Identification Use WHO ECD developmental of cause, early Nurturing Care potential of young detection and Framework. children intervention needed. Due to poverty in LMICs, children not reaching potential.
Phasha, 200955 Responses to SDG 3 & 4: SDG 16: National SDG 4: Educators sexual abuse of Appropriate health DoE procedures must be trained to teenagers and education to should be revisited deliver content. support children. to better align organisational protocols with legislation.
Phasha & School-based SDG 4 & 5: Clear SDG 4 & 5: SDG 4 & 5: Nyokangi, 201256 sexual violence policies, reporting Empower learners Address the culture procedures, with self-protection of concealment of developmentally skills and sexual abuse. appropriate sex information on education to acceptable forms combat exploitative of sexual behaviour behaviour for young adults with disabilities.
26 South African Health Review 2020 Legislation and Capacity Author, year Topic Services Advocacy policy development
Phasha & GBV in schools SDG 4 & 5: SDG 4 & 5: Nyokangi, 201357 Supervision, Education and school prefects, teacher training to support staff, clear address GBV. procedures needed on GBV.
Phaswana et al., Clinical factors and SDG 3 & 16: Early SDG 3 & 16: Health 201358 ability to testify referral to mental and legal system to health services, collaborate in care. improve referral pathway.
Pillay, 201259 Challenges for SDG 16: children in legal Collaboration system between legal and mental health professions.
Pillay et al., 201160 Examinations and SDG 1, 2, SDG 17: Address social context 4 & 8: High lack of ID variables poverty, hunger, knowledge unemployment. among families, Grants, work, practitioners, income generation, sectors. workshops, special schools essential.
Potterton et al., Home stimulation SDG 3: Home SDG 4: Improve 201061 programmes stimulation parent skills to programmes support child's can improve development. development.
Rasdien et al., Developmental SDG 3: Early SDG 3 & 4: 201962 clinic patients identification, Develop capacity assessment and for early detection, intervention intervention. challenging.
Roberts et al., Dental needs of SDG 3: Optimal SDG 3 & 4: Include 201663 children dental care skills to treat possible. Parental persons with ID in role important. dental training.
Rohleder, 201064 Educators SDG 3 & 4: SDG 4: Change ambivalence about Educator anxiety attitudes that sex education can limit sexuality hamper education. education.
Sandy et al., 201365 Support needs of SDG 3 & 4: Limited SDG 3: Deinstitu- SDG 3 & 4: Reduce SDG 3: Provide caregivers education, health tionalisation caregiver stress information to services, respite, has taken place via health literacy, empower parents decision-making without resources knowledge and to advocate. and supervision to families, skills. causes caregiver community. stress.
Savolainen et al., Teachers' attitudes SDG 4: Build 201266 and self-efficacy in practical skills, inclusive education address contextual influencers on training receptivity.
Improving the health of children and adults with intellectual disability in South Africa: legislative, policy and service development 27 Legislation and Capacity Author, year Topic Services Advocacy policy development
Schoeman et al., Developmental SDG 3: Parents 201767 screening: follow- defaulting on up adherence referrals for early predictors intervention due to lack of information on child's development, employment concerns, other responsibilities.
Spangenberg et al., Validation of SDG 4: Few SDG 16: SDG 17: Multi- 201668 education database children under 4 Information sector input attended centres, systems can inform needed. lack of access to service planning. care for young adults.
Stein et al., 201869 Mental health SDG 3: Insufficient SDG 3 & 4: services funding for Cross-disciplinary mental health, ID sub-specialisation services. Develop needed. community services.
Struthers, 201170 Health-promoting SDG 1, 4 & 10: schools and Health-promoting sport to address schools can be a community conflict vehicle for social inclusion of ID learners.
Swanepoel & Haw, Maternal SDG 1 & 3: 60% of 201871 depression mothers received care dependency grants, 33.3% screened positive for depression.
Temane, 201672 Student nurses SDG 3 & 4: Training SDG 4: Student experience of in inhumane ID nurses require placements settings distress ongoing tutor student nurses. support.
Tomlinson et al., Global research SDG 3: Prevalence, SDG 3: Human 201473 priorities biomarkers, risk/ resource capacity; protective factors; include NPOs, early identification, persons with ID in screening, research; support intervention; for families. awareness, prevention and promotion; health system access.
Van der Linde, Nursing auxiliaries’ SDG 3 & 4: Improve 201474 job satisfaction ID specific skills, provide mentoring to reduce stress and improve job satisfaction.
28 South African Health Review 2020 Legislation and Capacity Author, year Topic Services Advocacy policy development
Van der Linde & Comparison of SDG 3: OT and Casteleijn, 201675 assessments of nurse assessments functioning valuable for intervention development.
Van Niekerk et al., Time utilisation SDG 1, 3, 8 & 16: SDG 3 & 4: 201576 trends of supported No sustainable Include supported employment funding for open employment in OT services labour work training standards, support. Supported job coaching, employment and development feasible if adapted of supported to ID service employment utilisation patterns. programmes.
Van Wieringen & Medical student SDG 4: Medical Ditlopo, 201577 training students need in-depth teaching, clinical exposure to manage ID patients confidently.
Wedderburn et al., Neurodevelopment SDG 3: Uninfected 201978 of HIV-exposed children exposed uninfected children to maternal HIV infection and ARVs may have language delays at 2 years.
ARV = antiretroviral; ASD = autism spectrum disorder; DD = developmental disability; DG = disability grant; ECD = early childhood development; GBV = gender-based violence; IDD = intellectual and developmental disabilities; NDoE = National Department of Education; NPO = non-profit organisation; UN CRPD = United Nations Convention on the Rights of Persons with Disabilities.
Legislation and policy SDG 5, gender equality, calls for elimination of violence Data illustrated how outdated legislation can impact on the against girls and women, including sexual exploitation. rights of persons with ID.18 For example, political equality Gender-based violence (GBV) is rife in South Africa, (SDG 10) is denied under the Electoral Act (No. 73 of 1998), including sexual abuse of girls and women with ID.22,49,55 which regulates that citizens declared “of unsound mind” Section 194 of the Criminal Procedures Act (No. 51 of 1977) may not be registered as voters. SDG 16 calls for non- provides that persons affected by “mental illness or … discriminatory laws and policies.7 The Mental Health Care any imbecility of mind … thereby deprived of the proper Act (No. 17 of 2002) lists severe and profound ID in its use of his reason … cannot be deemed competent to give definitions, which has at times excluded persons with mild evidence”.9 Lack of legislated reasonable accommodation and moderate ID from mental health-related services.8 for survivors of sexual crimes in understanding court proceedings and providing credible witness, can result in Abusive terminology has changed in South African law, with non-conviction of perpetrators.9 The Sterilisation Act (No. terms such as ‘idiot’, ‘moron’ and ‘imbecile’ replaced with 44 of 1998) recognises the right to bodily and psychological ‘mental handicap’, ‘mental retardation’, and more recently, integrity, yet permits sterilisation consent to be given on ‘intellectual disability’, although not uniformly. An amendment behalf of “a mentally disabled person” deemed incapable of is underway of section 77 of the Criminal Procedures Act consenting, after an expert panel review.11 (No. 51 of 1977) (assessment of capacity to understand proceedings) and section 78 (mental illness or mental Policy data from this review reflect a need for improved defect and criminal capacity) to replace the term “mentally policies on early detection, identification and intervention defective” with “intellectual disability”.9 The 2020 Sexual in the case of children with, or at risk for intellectual and Offences and Related Matters Amendment Bill retains the developmental disabilities (IDD). Interventions suggested term “mentally disabled”,79 and does not distinguish between include primary prevention to reduce incidence of IDD, and persons with psychosocial disability and ID.18 secondary and tertiary prevention as part of comprehensive community development. Implementation of brief, low-cost,
Improving the health of children and adults with intellectual disability in South Africa: legislative, policy and service development 29 routine screening tools by lay health and other workers has Carer barriers to accessing adequate health care include been recommended.40 insufficient understanding of early intervention, having to prioritise work, costly transport, fragmented services, Children who are HIV-exposed in utero but uninfected, have cultural and language barriers, and perceived lack of high rates of neurodevelopmental problems. HIV-exposed, understanding by providers of caregiving challenges.45,50,61,67 uninfected children are particularly vulnerable, due to a lack of adequate early identification and follow-up of IDD. Sexual and reproductive health education is important given Reformed policies providing support to these children are that sexual knowledge is low among persons with ID.31,34 required to promote SDG 3.38 Family members often exercise authority over the bodies and relationships of persons with ID,49 and other caregivers Deinstitutionalisation policy promotes community-based may deny access to sexuality education, contraception, mental health care over institutional care, but funding has safe sexual relationships,44,49,55,56 and protection from GBV not followed to ensure quality care for persons with ID, in settings such as schools.57-59 Inadequate judicial services mental health problems and other high-support needs, may also result in non-reporting of violence and abuse or rendering families or NPOs the primary care providers.65 exclusion from testifying.59 The Esidimeni tragedy resulted from transfer of adults with mental illness or ID from state-funded institutions to Family support services are vital given the impact of high inadequate community care, and at least half of those who burden of care on caregiver health.45,50 Caregiver stress died in these centres had ID with complex care needs.20,27 is associated with lack of respite, inadequate support in managing behaviours that challenge and limited Legislation and policy support intersectoral coordination, parental involvement in decision-making.50,65 The value of but service implementation is often siloed. Education multidisciplinary teamwork in ID health services was noted in White Paper 6 on inclusive education recognises ID as a several papers.51,52,62,63,68,75 The role of alternative healthcare barrier to learning and promotes the education system’s practitioners needs further attention given that many role in detection of IDD in school-aged learners.14 However, caregivers consult both medically trained and traditional educational responses are insufficient to effect the equality health providers.50 envisaged for learners in SDGs 4 and 10.35 Children with severe and profound ID are still denied formal schooling Training and capacity development within the basic education sector despite a court ruling in Caregivers may have low levels of health literacy and 2010 obligating inclusion of these children as learners.45 practical skills, especially in managing behaviours that Similarly, access to assessment for social grants may be challenge.65 Community-based workers can provide a barrier to securing the benefit.12 The White Paper on the information to families and persons with ID to enhance self- Rights of Persons with Disabilities recommends review of reliance at home and in their community.44 Undergraduate legislation to remove barriers to rights provision.13 and postgraduate health practitioners require curricula in ID to ensure capacity for early detection and intervention.62 Services Poverty (SDG 1) leads to undernutrition among persons with Health workers can experience high levels of stress, even ID and their families (SDG 2), exacerbating IDD.49,50,61 Care depression, working with patients with high physical dependency and disability grants are often the only source and behavioural support needs.74 Improved knowledge, of household income or are used entirely for residential management skills and mentoring in supporting complex care costs.44 Lack of training prevents persons with ID care needs can reduce stress and prevent burnout.32,65,74 from entering the open labour market,44 despite supported Delivery of sexuality education programmes to promote employment leading to increased social inclusion, skills sexual and reproductive health and safety requires and income.44,76 Poorly supported caregivers may leave understanding of stereotypes about the impact of sexuality employment due to caregiving responsibilities,45 deepening education on sexual activity.64 family poverty. Advocacy Funding of health services for persons with ID is largely In terms of SDG 10, children with ID who survive early within tertiary mental health services, with community-based childhood will not have their needs prioritised without health services remaining under-resourced.69 The higher vigorous advocacy.2 prevalence of mental health problems among persons with ID50,51 can result in inadequate general health care due to Meeting the needs of persons with ID requires provider diagnostic overshadowing.50 Progress towards integrated, partnerships with caregivers and persons with ID to promote inclusive services for persons with ID in primary and empowerment.50,65 The court case brought by the Western tertiary services51 is hampered by access barriers, including Cape Forum for ID to assert the right to education of inequitable service concentration in urban centres.3,50,51 Few children with ID demonstrates the power of advocacy to studies reported on therapeutic interventions for persons address inequalities in service provision.47 with ID,21,61 including evidence-based practice for behaviours that challenge a complex presentation in persons with ID.
30 South African Health Review 2020 Discussion Conclusion
Legislation, policies and services Issues identified resonate with the disability-related Review is needed of outdated legislation and terminology priorities of South Africa’s National Development Plan that act as a barrier to rights-based, coordinated policy (NDP) 2030,82 including the need for disability-adjusted, and service development and implementation.18 Dedicated gender-sensitive strategies to address the cyclical impact disability legislation could help to improve intersectoral of poverty and inequality on disability (SDGs 1, 2, 3, 4, 5, 8 policy directives for service delivery19 by ‘clustering’ areas and 10). The NDP acknowledges the role of discrimination of action identified in this review. This would support access in exclusion, particularly for girls and women with disabilities to poverty-alleviation programmes, employment creation (SDG 5). Future directions can be supported by setting a and supported employment programmes, rehabilitation public health-related research agenda for ID that includes and respite services, and education, including sexuality and participation of persons with ID. reproductive health services. Acknowledgements Service development should also prioritise reduction of The authors thank Dr Amani Karisa and Ms Cole Goldberg preventable causes of IDD and early identification and for their research assistance. intervention. A family-centred approach across the lifespan should underpin developments, emphasising community- based health-related supports. Interventions to support families caring for relatives with complex high-support needs References at home, is a particular concern.
Reviewed articles did not address the National Health 1. Maulik PK, Mascarenhas MN, Mathers CD, Dua T, insurance (NHI) Bill of 2019, set to change health-service Saxena S. Prevalence of intellectual disability: a meta- delivery in South Africa,80 including for persons with analysis of population-based studies. Res Dev Disabil. disabilities. 2011;32(2):419-36. 2. Vos T, Barber RM, Bell B, et al. Global, regional, Training and capacity development and national incidence, prevalence, and years lived The review found insufficient integration of practice-based with disability for 301 acute and chronic diseases and programmes on ID into academic and in-service training injuries in 188 countries, 1990-2013: A systematic analysis programmes for practitioners, limiting confidence in the for the Global Burden of Disease Study 2013. Lancet. delivery of health, social and education services. Enhanced 2015;386(9995):743-800. practitioner competence should support capacity-building of caregivers to manage the complex needs of their relatives. 3. Adnams CM. Perspectives of intellectual disability in Limited research on capacity-development needs of South Africa: Epidemiology, policy, services for children and persons with ID has focused on education and supported adults. Cur Opin Psychiatry. 2010;23(5):436-40. employment. 4. Munn ZPM, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Advocacy Guidance for authors when choosing between a systematic The review findings indicated a lack of inclusion of persons or scoping review approach. Med Res Method. 2018;18:143. with ID in policy, treatment and support-service decisions, with advocacy primarily family and service-provider driven. 5. Comprehensive and Integral International Convention While more work is needed to improve advocacy by families, on the Protection and Promotion of the Rights and Dignity particularly for persons whose disability precludes personal of Persons with Disabilities; 2006. URL: https://www.un.org/ input on public policy and service-related processes, the development/desa/disabilities/convention-on-the-rights-of- lack of self-representation by persons with ID is notable. persons-with-disabilities.html. 6. Transforming our world: the 2030 Agenda for Research Sustainable Development, 21 October 2015. URL: https:// Research can inform evidence-based input on dedicated www.refworld.org/docid/57b6e3e44.html. disability legislative review and service gaps. The 7. Electoral Act No. 73 of 1998. Government Gazette development of specific health-related indicators for No. 19351, 14 October 1998, Republic of South Africa. disability must be included in public service information URL: https://www.gov.za/sites/default/files/gcis_ systems. The evidence base to support service document/201409/act73of1998.pdf. development must involve academics, professionals,
NPOs, families of persons with ID, and persons with ID themselves.81
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School-based sexual violence disability in Africa: Implications for research and service among female learners with mild intellectual disability in development. Disabil Rehabil. 2013;35(20):1750-5. South Africa. Violence Against Women. 2012;18(3):309-21. 43. McKenzie J, McConkey R, Adnams C. Health conditions 57. Phasha TN, Nyokangi D. Addressing gender-based and support needs of persons living in residential facilities violence at schools for learners with intellectual disability for adults with intellectual disability in Western Cape in Gauteng, South Africa: A multiple case study. African Province. S Afr Med J. 2013;103(7):481-4. Education Review. 2013:S169-88. 44. McKenzie J, McConkey R, Adnams C. Residential 58. Phaswana TD, Van der Westhuizen D, Krüger C. Clinical facilities for adults with intellectual disability in a developing factors associated with rape victims' ability to testify in court: country: A case study from South Africa. J Intellect Dev A records-based study of final psychiatric recommendation Disabil. 2014;39(1):45-54. to court. Afr J Psychiatry. 2013;16(5):343-8. 45. McKenzie J, McConkey R. Caring for adults with 59. Pillay AL. Intellectually disabled child and adolescent intellectual disability: The perspectives of family carers in sexual violence survivors face greater challenges in the South Africa. J Appl Res Intellect Disabil. 2016;29(6):531-41. legal system. J Child Adolesc Ment Health. 2012;24(2):iii-vi. 46. McKenzie JA, Pillay SG, Duvenhage C-M, Du Plessis E, 60. Pillay AL, Siyothula EB. Intellectual disability Jelsma JM. Implementation of educational provision for examinations and social context variables among children with severe to profound intellectual disability in the patients of low socioeconomic status. Percept Mot Skills. Western Cape: From rights to reality. Int J Disabil Dev Educ. 2011;113(2):589-96. 2017;64(6):596-611.
Improving the health of children and adults with intellectual disability in South Africa: legislative, policy and service development 33 61. Potterton J, Stewart A, Cooper P, Becker P. The effect 73. Tomlinson M, Yasamy MT, Emerson E, Officer A, of a basic home stimulation programme on the development Richler D, Saxena S. Setting global research priorities for of young children infected with HIV. Dev Med Child Neurol. developmental disabilities, including intellectual disabilities 2010;52(6):547-51. and autism. J Intellect Disabil Res. 2014;58(12):1121-30. 62. Rasdien U, Redfern A, Springer PE. Comparison of 74. Van der Linde J. Job satisfaction of nursing auxiliaries the demographic and diagnostic profile of new patients pre and post training, in a longterm mental health institution attending a neurodevelopmental clinic in 2008/2009 and for patients with profound intellectual and multiple 2016. S Afr J Child Health. 2019;13(1):6-10. disabilities. S Afr J Occup Ther. 2014;44(1):25-31. 63. Roberts T, Chetty M, Kimmie-Dhansay F, Fieggen K, 75. Van der Linde J, Casteleijn D. A comparison of Stephen LXG. Dental needs of intellectually disabled two assessments of levels of functioning in clients with children attending six special educational facilities in Cape intellectual disability between occupational therapists and Town. S Afr Med J. 2016;106(6):S94-S7. nursing staff within a long-term mental healthcare facility in South Africa. Curationis. 2016;39(1):e1-10. 64. Rohleder P. Educators' ambivalence and managing anxiety in providing sex education for people with learning 76. Van Niekerk L, Coetzee Z, Engelbrecht M, Hajwani Z, disabilities. Psychodynamic Practice. 2010;16(2):165-82. Terreblanche S. Time utilisation trends of supported employment services by persons with mental disability in 65. Sandy PT, Kgole JC, Mavundla TR. Support needs South Africa. Work. 2015;52(4):825-33. of caregivers: Case studies in South Africa. Int Nurs Rev. 2013;60(3):344-50. 77. Van Wieringen A, Ditlopo P. An analysis of medical students training in supporting people with intellectual 66. Savolainen H, Engelbrecht P, Nel M, Malinen OP. disabilities at the University of the Witwatersrand, South Understanding teachers' attitudes and self-efficacy in Africa. J Intellect Dev Disabil. 2015;40(4):309-20. inclusive education: Implications for pre-service and in-service teacher education. Eur J Spec Needs Educ. 78. Wedderburn CJ, Yeung S, Rehman AM, et al. 2012;27(1):51-68. Neurodevelopment of HIV-exposed uninfected children in South Africa: outcomes from an observational birth cohort 67. Schoeman JC, Swanepoel DW, van der Linde J. study. Lancet Child Adolesc Health. 2019;3(11):803-13. Developmental screening: predictors of follow-up adherence in primary health care. Afr Health Sci. 2017;17(1):52-61. 79. The Sexual Offences and Related Matters Amendment Act Amendment Bill, 28 February 2020. URL: https://static. 68. Spangenberg K, Corten L, van Rensburg W, et al. The pmg.org.za/SXOAAAmendmentBill.pdf. validation of an educational database for children with profound intellectual disabilities. Afr J Disabil. 2016;5(1):1-11. 80. South African National Health Insurance Bill. Government Gazette No. 42598, 26 July 2019, South 69. Stein DJ, Sordsdahl K, Lund C. Intellectual disability in Africa. URL: https://www.gov.za/sites/default/files/gcis_ South Africa: Addressing a crisis in mental health services. document/201908/national-health-insurance-bill-b-11-2019. S Afr Med J. 2018;108(3):147-8. pdf. 70. Struthers P. The use of sport by a health promoting 81. Lorenzo T, Joubert R. Reciprocal capacity building school to address community conflict. Sport in Society. for collaborative disability research between disabled 2011;14(9):1251-64. people's organizations, communities and higher education 71. Swanepoel M, Haw T. A pilot study evaluating institutions. Scand J Occup Ther. 2011;18(4):254-64. depression in mothers with children diagnosed with Down 82. South African National Planning Commission. National syndrome in state health care. J Intellect Disabil Res. Development Plan 2030: Our Future - make it work. Pretoria: 2018;62(11):952-61. SANPC, 2017. URL: https://www.gov.za/documents/national- 72. Temane A SL, Poggenpoel M, Myburgh CPH. Lived development-plan-2030-our-future-make-it-work. experience of student nurses caring for intellectually disabled people in public psychiatric institution. Curationas. 2016;39(1):1-11.
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34 South African Health Review 2020 REVIEW 4 Health legislation and policy: a focus on disability
The provision of comprehensive health Authors Andy Grayi and social services to those with disabilities Yousuf Vawdaii requires intersectoral action by both the health and other sectors, as has been outlined in the Framework and Strategy for Disability and Rehabilitation Services in South Africa 2015-2020.
This chapter provides a brief but critical examination of the Health Insurance Bill has been limited, due in part to the legislative and policy steps taken towards achieving universal disruption caused by the COVID-19 pandemic. Further health coverage in South Africa, with particular emphasis on public hearings in the Portfolio Committee on Health will equity and the extent to which adequate provision is made for be held before the Bill proceeds to the National Council the services needed by persons with disabilities. of Provinces. Other developments include publishing of the draft Social Service Practitioners Bill and referral of the The year 2020 has been dominated by the COVID-19 Copyright Amendment Bill (Bill 13 of 2017) back to Parliament. pandemic. In this context, the position of persons with Access to cannabis and cannabis-based medicines remains disabilities is particularly critical. From a legislative point highly contested. The Cannabis for Private Purposes Bill of view, the health systems response has relied largely on was approved by Cabinet and tabled in Parliament, and is existing provisions, and while minor changes have been expected to progress in 2021. made, few novel policies or legal instruments have been developed. A brief summary of selected health-related secondary and tertiary legislation is also provided, and major health-related Legislation and policy that is of general application to the jurisprudence related to the councils is discussed. health sector is also examined. Progress on the National
i Division of Pharmacology, Discipline of Pharmaceutical Sciences, University of KwaZulu-Natal ii School of Law, University of KwaZulu-Natal
Click to navigate Health legislation and policy: a focus toon Contentsdisability 35 attainable standard of physical and mental health.9 In this Introduction light, the cursory treatment of disability rights in the National Health Insurance (NHI) Bill (Bill 11 of 2019) is all the more 10 Universal health coverage (UHC) implies that all people and disconcerting. There is only one reference to disability, in communities are able to access the promotive, preventive, section 57 (Transitional arrangements). Thus, although the curative, rehabilitative and palliative health services they constitutional protection against discrimination would apply, need, in ways that are equitable, that ensure the quality the health rights and concerns of this vulnerable group are of such services, and that protect them from financial not adequately catered for in the Bill. The NHI Bill has not harm. Central to UHC is the concept of equity in health – progressed beyond the National Assembly. The Portfolio often defined as “the absence of systematic disparities in Committee on Health has held several high-profile hearings health … between groups with different levels of underlying in the provinces, and has scheduled an extensive series of 11 social advantage/disadvantage – that is, wealth, power virtual public hearings to inform the deliberations. Some or prestige”.1 In this milieu, persons with disabilities are 121 groups and individuals have expressed an interest in at a further disadvantage regarding their health needs. delivering oral inputs, and the committee had received more According to the World Health Organization (WHO),2 about than 64 000 written submissions after the call for comments 12 15% of the world’s population lives with some form of in August 2019. Before this section 76 Bill is referred to disability, and these persons have less access to healthcare the National Council of Provinces (NCOP), the provincial services, resulting in significant unmet healthcare needs. legislatures may also need to repeat public hearings in each The provision of comprehensive health and social services province in order to inform the mandates they issue for to those with disabilities requires intersectoral action by subsequent deliberations in the NCOP. The real challenges, both the health and other sectors, as has been outlined in though, lie with the design of the benefit package, and the the Framework and Strategy for Disability and Rehabilitation contracting of service providers. As Morris et al. point out: Services in South Africa 2015-2020.3 “For the NHI to truly be successful in ensuring affordability, and equity in accessing rehabilitation for all South Africans The Constitution makes only one explicit mention of with chronic illness and disabilities, there needs to be disability, in section 9(3): “The state may not unfairly major re-evaluations in the redistribution and allocation of discriminate directly or indirectly against anyone on one government funding towards addressing the shortcomings, or more grounds, including race, gender, sex, pregnancy, i.e. increasing staff and resources within the communities 7 marital status, ethnic or social origin, colour, sexual where rehabilitation is needed the most”. orientation, age, disability, religion, conscience, belief, culture, language and birth”.4 This is a particularly strong The limitations of existing legislation, such as the Mental 13 protection, based on the presumption that the discrimination Health Care Act (Act 17 of 2002), were cruelly exposed in is unfair unless established otherwise. The Department of the Life Esidimeni tragedy, where inadequate oversight of Social Development is responsible for protecting the rights under-resourced and neglected mental health services led of vulnerable sectors of our society, including children, directly to the violation of the human rights of persons with 14 persons with disabilities, and older people. It is also the intellectual and psychosocial disabilities. The explanatory custodian of international treaties that the country has memorandum to the NHI Bill notes that amendments may ratified, such as the Convention on the Rights of Persons be required to the Mental Health Care Act, and the Bill with Disabilities, 2007.5 However, despite issuing the White mentions that this will be done in Phase 2 (section 57(4)(h)), Paper on the Rights of Persons with Disabilities in 2015, but no details are provided. The Bill envisages that in phase the Department has not promulgated disability-specific 1, the NHI Fund will cover healthcare services for the aged legislation.6 and persons with disabilities. School health services are also included, which the explanatory memorandum notes are The 2015 Framework and Strategy identified a number of intended “to improve the physical and mental health and legislative instruments of relevance to disability, but did general well-being of school going children”. not propose any legislative amendments. Implementing the policy requires close attention to a number of health The advent of the COVID-19 pandemic has posed new systems barriers, within the current structure for the challenges to mental health and well-being. A recent study delivery of health services.7 The overarching legislation on its impact on the workplace has found that almost half for health, the National Health Act (Act 61 of 2003) (NHA)8, of respondents are at high risk of “pre-traumatic stress makes reference to disability in several sections: sections disorder” (pre-TSD), a condition described as “a syndrome 2 (Objects of Act); 4 (Eligibility for free health services in involving involuntary intrusive images and flash forwards public health establishments); 39(2) (a) and (d) (Regulations of haunting events that could be experienced during major 15 relating to certificates of need); 70 (Identification of disruptions such as COVID-19”. It appears that no statistics health research priorities); and 73 (Health research ethics on the impact of pre-TSD were obtained regarding workers committees). The global standard, enshrined in article 12 of in the informal economy, or other sectors of society. the International Covenant on Economic, Social and Cultural Rights, recognises the right to the enjoyment of the highest
36 South African Health Review 2020 to make use of reading materials in accessible formats.
Bills in progress Furthermore, the ‘fair use’ provision would provide lawful flexibility to educational institutions migrating to remote Apart from the NHI Bill and the National Health Amendment teaching and research, for example, with the closure of Bill (Bill 29 of 2018)16 (the Private Member’s Bill which such institutions and subsequent limitation to contact seeks to extend clinic hours), which were comprehensively teaching during the COVID-19 pandemic. The Bill was analysed in the previous edition of the Review,17 a number finally passed by both Houses of Parliament on 28 March of Bills that impact directly or indirectly on persons with 2019 and sent to the President for assent. In June 2020, disabilities are currently at various stages of preparation or a non-governmental organisation, Blind SA, approached consideration. the Constitutional Court to declare that the President had failed to fulfil his constitutional obligations.23 The President subsequently took the alternative route provided in section Social Service Practitioners Draft Bill, 2019 79(1) of the Constitution, by referring the Bill back to The Minister of Social Development published a draft Social Parliament for reconsideration, citing reservations about the Service Practitioners Bill for comment in March 2020.18 constitutionality of the Bill.24 Such reservations are widely Although no explanatory memorandum has been placed regarded as unfounded, and suggest that the President is on the Department’s website as promised, the intent of the bowing to pressure from multinational corporations and Draft Bill is clear. The Bill proposes to replace the existing western trade lobbies opposed to the exceptions contained Social Service Professions Act (Act 110 of 1978)19 in its in the Bill.25 The Bill has appeared on the parliamentary entirety. The existing Social Service Professions Council, calendar of the Trade and Industry, and the Sports, Arts its Professional Board for Social Work and Professional and Culture portfolio committees in August and September Board for Child and Youth Care, will all be replaced by 2020, respectively.26 the South African Council for Social Service Practitioners. The Council will operate through social service boards, including both professional boards and occupational Cannabis for Private Purposes Bill, 2020 17 boards, allowing for a far broader group of practitioners The previous edition of the Review has reported the to be brought under regulatory control. In addition to the Constitutional Court judgment on the issue of cannabis 27 currently regulated professions, the following occupations use by an adult in private. The court declared portions 28 will be regulated: early childhood development practitioners, of the Drugs and Drug Trafficking Act (Act 140 of 1992) community development practitioners, assistant community and the Medicines and Related Substances Act (Act 101 29 development practitioners, and caregivers. A caregiver is of 1965) to be constitutionally invalid, but allowed two defined as “a registered social service practitioner who years for Parliament to amend the legislation, with specific provides psychosocial and physical care and support to wording “read in” in the interim. Instead of amending older persons, persons with disabilities and those with the Medicines Act, the application of section 22A (9) to chronic illnesses”. This is the sole reference to persons with cannabis was avoided by rescheduling cannabis and disabilities in the Bill. Whereas the existing Act 110 of 1978 specific cannabinoids from Schedule 7 to Schedules 6 included 'one disabled person' in its Council,20 no such (tetrahydrocannabinol) and 4 (cannabidiol). Amendments to provision is available in the present Bill. This a retrogression the Schedules to the Drugs Act are being prepared by the from the current position. New applicants for registration in Minister of Justice and Correctional Services. In addition, the a social service profession or occupation will be required Minister of Justice and Correctional Services has tabled the 30 to complete two years of remunerated community service. Cannabis for Private Purposes Bill in Parliament. The Bill It remains to be seen whether this highly interventionist has been crafted within the confines of the Constitutional and far-reaching Bill will be considered feasible and Court judgment, enabling an adult to possess, cultivate and implementable. In particular, it is unclear whether it will be use limited quantities of cannabis in private, only allowing an possible for the large number of personnel engaged at adult to obtain limited quantities or dried plants or cultivation the occupation level to complete formal training under the material from another adult “without the exchange of auspices of the Quality Council for Trades and Occupations remuneration”. Harsh penalties, including custodial (QCTO), even with recognition of prior learning. The sentences of up to 15 years, are reserved for possession intentions, though, are worthy of consideration. or cultivation of what are termed either “commercial” or “trafficable” quantities. Consumption of cannabis in a Copyright Amendment Bill (Bill 13 of 2017) public place or in the presence of a child is also an offence. Critically, the Bill excludes anyone who is permitted or This Bill has a highly significant impact on disabled authorised to cultivate cannabis or deal in cannabis or persons. Almost four years since the entry into force of cannabis products by any other Act of Parliament. That the Marrakesh Treaty21 and almost two years after the would include the provisions in the Medicines Act and National Assembly passed the Copyright Amendment Schedules allowing the production of medicinal cannabis, Bill,22 visually impaired persons are no closer to benefiting the cultivation of low-trans-delta-9-tetrahydrocannabinol from the exceptions promised in these instruments. (THC) cannabis for industrial purposes and the production Such exceptions would enable persons with disabilities
Health legislation and policy: a focus on disability 37 of cannabidiol (CBD)-containing complementary medicines.a to emerging safety data, as well as to efficiently respond to However, the Bill would not protect those who cultivated global changes in controlled substance regulation. larger quantities of cannabis for the preparation of oils or other extracts for medicinal purposes, unless licensed. The Medicinal cannabis has been used for the management of Bill also provides for the expungement of criminal records of spasticity, which is a common feature of cerebral palsy.35 all persons previously convicted for the possession or use of Cannabidiol has been registered in other jurisdictions cannabis. However, given the constraints on parliamentary for the management of uncontrolled seizures in children, processes at present, the Bill is not expected to progress associated with Lennox-Gastaut and Dravet syndromes, as before the end of 2020. well as tuberous sclerosis complex.36
A separate challenge to the Drugs and Drug Trafficking Act The much-anticipated National Drug Master Plan 2019-2024 has recently been heard in the Johannesburg High Court.31 was finally published in June 2020 by the Minister of Social At issue was the sentencing by a lower court of a number of Development, and includes very specific commitments to children to “compulsory residence”, a form of incarceration a harm-reduction approach.37 The policy notes that “It is for juveniles in youth centres, for possession of cannabis. necessary to form relationships between the criminal justice In question was whether criminal-type penalties should and public health sectors, and to change laws and/or norms be imposed on children suspected of cannabis use when to support evidence-based harm reduction”. The legislative this was not the case for adults. The court conducted an reforms proposed here can be viewed as part of that extensive analysis of the constitutional issues and found effort. The process for re-appointment of the Central Drug that the committal of the children had breached a number Authority is also progressing. of fundamental rights, in particular, sections: 9 (equality); 12 (freedom and security of the person); 28 (children); and 35 (arrested, detained and accused persons). The court also bemoaned the misapplication and misunderstanding Implementation of the National of the Child Justice Act (Act 75 of 2008),32 as the committal had fallen foul of the “best interests of the child” standard, Health Act in that the sentences applied a standardised order for all children regardless of their individual circumstances, as well Implementation of the National Health Act (Act 61 of 2003) as of a fundamental principle of the Child Justice Act that a and the provisions enabled by that legislation continue, child should not be treated more severely than an adult in albeit at a reduced pace. In May 2019, the Chief Executive the same circumstances. The court ordered that section 4(b) Officer of the Office of Health Standards Compliance of the Drugs and Drug Trafficking Act was inconsistent with issued a Code of Conduct for Inspectors, as enabled by the the Constitution and invalid to the extent that it criminalised Regulations issued in terms of the NHA.38 Inspectors will cannabis use by children and that, pending reform of the be required to “promote transparency while respecting the law, no child should be arrested, prosecuted or diverted right to confidentiality, through objectivity”. for contravening this provision. It also declared that section 53(2) read with section 53(3) of the Child Justice Act does Of relevance to persons with disability, the Minister of Health not, under any circumstances, permit that a child who has designated a number of hospitals, in each province, to provide committed the “offence” in question be placed in a diversion acute care, rehabilitation and palliative care for cerebral palsy programme involving a period of temporary residence. patients at no cost, presumably relying on the NHA.39
The previous edition of the Review17 also reported on the judgment of the Western Cape High Court to the effect that section 63 of the Drugs and Drug Trafficking Act, which Statutory health professions empowers the Minister of Justice and Correctional Services to amend the schedules to that Act, was unconstitutional, councils as it was an impermissible delegation of power and a breach of the separation of powers doctrine.33 The case was Although no amendments to primary legislation are being argued before the Constitutional Court in February 2020, considered at present, changes to regulations and rules and judgment has been reserved.34 The outcome of this continue to be developed and implemented. A brief account case will have far-reaching implications for both the Drugs of the most important legislative instruments is provided. and Drug Trafficking Act and the Medicines and Related Substances Act, which both rely on the frequent amendment Health Professions Council of South Africa of their Schedules by the respective Ministers. Were such (HPCSA) changes to be reserved for Parliament, this would hamper Updating the scopes of practice of various categories the ability to bring new medicines to market and control of health professionals and the qualification on which access thereto, to flexibly reschedule medicines in response a THC and CBD are natural compounds found in plants in the Cannabis genus.
38 South African Health Review 2020 registration depends is an ongoing task. Draft amendments creates the categories of professional nurse, midwife, to the qualifications for various emergency personnel were staff nurse, auxiliary nurse and auxiliary midwife. The published for comment,40 while amendments were made enrolled nurse category caters for a legacy cohort, as those to the specialities and sub-specialities in medicine and currently on the rolls may continue to practice. All “legacy dentistry.41 A draft scope of practice for nutritionists was programmes” have ceased to admit new learners since published for comment,42 but it was decided not to proceed 31 December 2019.51 Nursing colleges are in the process with changes to the scope of practice of psychologists, of being designated as tertiary educational institutions.52 previously published for comment.43 The “general nurse” category will replace the staff nurse, and will be based on a three-year Diploma course. The Disciplinary process is a key task for all statutory health confusion was evident in the draft regulations on the scope professions councils, and the Minister updated minor of practice of nurses and midwives, which were initially elements of the regulations governing inquiries into alleged issued for the previous categories,53 and then re-issued unprofessional conduct under the Health Professions Act in terms of the new categories.54 Although some progress (Act 56 of 1974).44 Medical negligence has again featured has been made in defining the qualifications needed for in the decisions of the courts. An appeal by Dr van der Walt specialist registration,55 as required in section 56(1) of the against his conviction for culpable homicide and sentence Nursing Act, there is still no clarity on which specialist nurses of five years’ imprisonment has been set aside by the will be permitted to prescribe medicines (in accordance Constitutional Court (CC).45 This conviction was based on with section 22A of the Medicines and Related Substances his negligence in managing the care of a patient after she Act). In addition, no regulations have yet been issued to had given birth, resulting in her death. After unsuccessful accompany section 56(6) of the Nursing Act, which enables appeals, van der Walt argued before the CC that his right to the issuing of permits to nurses who constitute the largest a fair trial enshrined in the Constitution, in particular his right number of prescribers (and dispensers) of medicines as an accused person to adduce and challenge evidence, in primary health care clinics in the public sector. The had been violated. Two of the three grounds he advanced SANC has published draft Rules to introduce compulsory were upheld by the court, namely, that the magistrate had continuing professional development (CPD) for nurses, made a ruling on the admissibility of certain evidence only based on accredited providers and a points system.56 at the time of handing down judgment; and that she had not relied on the evidence of the state’s expert witness alone South African Pharmacy Council (SAPC) but augmented her information by reference to medical The SAPC has also introduced compulsory CPD as a textbooks that the expert did not refer to in his evidence. As requirement for ongoing registration as a pharmacist a result, van der Walt had been prejudiced in the conduct designated to be practising.57 The system relies on the of his defence. The appeal was allowed not on the merits maintenance of a portfolio of evidence and the electronic of the case, but because of the procedural irregularities, submission of a prescribed number of CPD activities, using and the matter was referred back to the Director of Public a cycle of reflection on practice, planning, implementation Prosecutions for a decision on whether van der Walt should and evaluation by pharmacists of the progress made be charged and tried again. Medical negligence is a serious towards achieving their learning objectives. Minor updates issue plaguing our health sector, and can result in disability to Good Pharmacy Practice (GPP) standards have been or death. issued,58 but more importantly, guidelines have been issued for the removal of pharmacy from registration/recording as Allied Health Professions Council of South a result of non-compliance with GPP or other legislation.59 Africa (AHPCSA) The Minister of Health has also issued draft regulations to The professions of aromatherapy and reflexology have now introduce a new category of pharmacy technician, with two been brought within the regulatory ambit of the AHPCSA.46 possible routes of education and training (an occupational Proposed amendments to the Regulations issued in terms and a higher education route).60,61 The SAPC has accordingly of the Allied Health Professions Act (Act 63 of 1982) were issued Good Pharmacy Education Standards for the published for comment, dealing mostly with the registration Occupational Qualification Sub-Framework.62 of practitioners and students and the funds of the council.47 The AHPCSA has also issued a series of board notices The provisions of section 22A of the Pharmacy Act (Act 53 defining unprofessional conduct.48,49 Such designations are of 1974)63, read with Regulation 6 of the Practice Regulations critical to effectively protecting the public, and especially issued in terms of that Act, came under scrutiny in the those who are vulnerable as a result of disabilities, chronic case of Independent Community Pharmacy Association v illness or advanced age. Minister of Health and Others.64 Section 22A enables the Minister of Health to prescribe who may own a pharmacy South African Nursing Council (SANC) and the conditions under which such persons may do A notice issued by the Minister of Health in June 2019, so, as well as the conditions under which such authority creating the categories of “enrolled nurse” and “general may be withdrawn. The court was required to interpret nurse” in terms of the Nursing Act (Act 33 of 2005) has the import of the prohibition in Regulation 6 to the effect caused much confusion.50 Section 31 of the Act already that an entity that has a beneficial interest in a community pharmacy is barred from being the holder of a direct or
Health legislation and policy: a focus on disability 39 indirect beneficial interest in a manufacturing pharmacy. by the Minister of Health were unlawful to the extent The court found the concept of ‘beneficial interest’ to be that they applied to complementary medicines and of wide import: without owning the assets of a company, a health supplements that are not medicines or scheduled shareholder has a beneficial interest in the operations and substances, is being appealed by the respondents.72 profits of the company’s business. As such, the court found that there was a conflict of interest as envisaged by the Although the annual determination of the single exit legislation between New Clicks’ role as a retail pharmacy price adjustment73 and dispensing fees for pharmacists74 chain, and as the owner of Unicorn, the manufacturing and licensed dispensing practitioners75 has continued, pharmacy. As a result, New Clicks stood to gain financially application of the pricing provisions in the Medicines to the prejudice of consumers who would be prompted to and Related Substances Act will still not apply to medical purchase the product manufactured by Unicorn, and thus devices and IVDs, as these were excluded for a further potentially not receive the best quality product at the best three years from May 2019.76 In addition, in May 2020, the price. The court ordered that the sanction to be imposed Minister of Health excluded all medicines, medical devices for the contraventions be remitted to the Chairperson of the and IVDs donated to the State, or provided as a sample Appeal Committee, or alternatively to the Director-General during a tender process, from the ban on sampling in terms of Health where the matter was first heard, for consideration. of section 18B, again for a period of three years.77 Although This is an ongoing issue, so the longer-term implications catered for in the Medicines and Related Substances Act, have yet to be uncovered. The decision is an important test the pricing provisions fall outside of the remit of SAHPRA. case for the prohibition of vertical integration in the private Nominations were also invited, by 12 August 2020, for healthcare market. appointment to the Pricing Committee.78
South African Health Products Regulatory Authority (SAHPRA) SAHPRA has been key to a variety of responses to the Specific Disaster provisions COVID-19 pandemic, not least in terms of the nascent regulation of medical devices and in vitro diagnostics Apart from the exclusion notices issued in terms of section (IVDs). For example, on the recommendation of SAHPRA, 36 of the Medicines and Related Substances Act, a plethora the Minister of Health has excluded the manufacturers of of regulatory notices have been issued pursuant to the certain alcohol-based hand-rubs from the requirement for declaration of a State of Disaster in March 2020.79 An licensure and labelling, on certain conditions.65 Extension example is the amendment to regulations on the handling of to the period of validity of repeat prescriptions for Schedule human remains, in terms of the NHA.80 These amendments, 2 to 4 medicines was also enabled, for a time-limited for example, prohibited the viewing and storage of the body period.66 Two further Gazette notices are indicative of the of a COVID-19 victim at home. The Minister of Trade and ongoing process of transformation from the Medicines Industry has also exempted manufacturers and suppliers of Control Council (MCC) to SAHPRA. The first relates to “medical and hygiene supplies” from specific prohibitions the referral, in October 2019, to the Special Investigating on collusive behaviour, provided it is for the sole purpose Unit (SIU) of allegations of maladministration, improper or of communicating on availability and co-ordinating unlawful conduct, or corrupt activities at SAHPRA.67 No procurement and distribution.81 further information on progress with this investigation has been forthcoming. The second relates to the fees charged by SAHPRA. In 2008, the Green-Thompson report noted that the fees charged for registration applications by the MCC were low compared with fees in other countries.68 Conclusion The proposed fee for a new medicines application was R165 200. More than a decade later, the new proposed In many ways, 2020 has been a year ‘on hold’, with specific fee for a similar application is in the range of R111 000 major health-related legislative processes delayed or in (new chemical entity, abbreviated registration process) to abeyance. The year has, nonetheless, provided an important R208 400 (new biological medicine, other than vaccines).69 test of existing legal provisions and their resilience. Viewed SAHPRA will be required to take urgent and at times difficult from the perspective of persons with disabilities, much decisions about clinical trials for COVID-19, including for of the existing legislation appears to pay little more than vaccines. The Authority will also need to decide on the lip-service to South Africa’s international obligations and registration of medicines and vaccines for COVID-19, on the the fine promises entrenched in the Constitution and the basis of incomplete evidence. Nominations were invited, by National Health Act. In particular, if the resources required 3 July 2020, for appointment to the SAHPRA board.70 to ensure the integration of services signalled in the Framework and Strategy for Disability and Rehabilitation On 1 October 2020, the North Gauteng High Court ruled on Services in South Africa 2015-2020 are to be mobilised and a challenge to the regulatory framework for complementary equitably applied, they need to be explicitly referenced in medicines, including health supplements.71 The court’s the benefit package to be delivered under National Health finding, namely that the 2017 General Regulations issued Insurance.
40 South African Health Review 2020 The relative marginalisation of persons with disabilities 11. Parliamentary Monitoring Group. NHI public hearings:
1Endnotes Braveman P, Gruskin S. Defining equity in health. J Epidemiol Community Health 2003;57(4):254. 2 World Health Organization. Disability and health. Geneva: WHO; 16 January 2018. URL: https://www.who.int/news-room/fact-sheets/detail/disability-and-health. appears3 to be National aDepartment global of Health. Framework problem. and Strategy for Disability This and Rehabilitation is reflected Services in South Africa 2015-2020.to some Pretoria: NDoH; 2015. URL: http://www.health.gov.za/index.php/2014-08-15-12-54-26/category/266-2016-str?download=1569:framework-and-strategy-final-print-ready-2016planning session; 2 September 2020. URL: https://pmg.org. 4 Endnotes Republic of South Africa. Constitution of the Republic of South Africa (Act 108 of 1996). URL: https://www.gov.za/documents/constitution-republic-south-africa-1996. Braveman P, Gruskin S. Defining equity in health. J Epidemiol Community Health 2003;57(4):254. 5 United Nations.World Health Convention Organization. on the RightsDisability of Personsand health. with Geneva: Disabilities. WHO; New 16 JanuaryYork: UN; 2018. 2007. URL: https://www.who.int/news-room/fact-sheets/detail/disability-and-health. URL: https://treaties.un.org/doc/Publication/CTC/Ch_IV_15.pdf. National Department of Health. Framework and Strategy for Disability and Rehabilitation Services in South Africa 2015-2020. Pretoria: NDoH; 2015. URL: http://www.health.gov.za/index.php/2014-08-15-12-54-26/category/266-2016-str?download=1569:framework-and-strategy-final-print-ready-2016 6 Minister Republic of Social of Development. South Africa. WhiteConstitution Paper onof thethe RepublicRights of ofPersons South Africawith Disabilities; (Act 108 of 2015. 1996). extentURL: https://www.gov.za/sites/default/files/gcis_document/201603/39792gon230.pdf.URL: https://www.gov.za/documents/constitution-republic-south-africa-1996.in the WHO’s Comprehensive Global Monitoring za/committee-meeting/31011/. 7 Morris LD, United Grimmer Nations. KA, ConventionTwizeyemariya on theA, Coetzee Rights of M, Persons Leibbrandt with DC,Disabilities. Louw QA. New Health York: system UN; 2007. challenges affecting rehabilitation services in South Africa. Disabil Rehabil 2019;1-7. 8 URL: https://treaties.un.org/doc/Publication/CTC/Ch_IV_15.pdf. Minister of Health. National Health Act (Act 61 of 2003). URL: https://www.gov.za/sites/default/files/gcis_document/201409/a61-03.pdf 9 United Nations.Minister Internationalof Social Development. Covenant on White Economic, Paper on Social the Rightsand Cultural of Persons Rights. with New Disabilities; York: UN; 2015. 1966. URL: https://www.ohchr.org/en/professionalinterest/pages/cescr.aspx.URL: https://www.gov.za/sites/default/files/gcis_document/201603/39792gon230.pdf.82 10 Minister Morris of Health. LD, GrimmerNational KA,Health Twizeyemariya Insurance Bill A, (Bill Coetzee 11 of 2019). M, Leibbrandt DC, Louw QA. Health system challenges affecting rehabilitation services in South Africa. Disabil Rehabil 2019;1-7. Framework,URL: https://www.gov.za/sites/default/files/gcis_document/201908/national-health-insurance-bill-b-11-2019.pdf. which Minister of Health. proposedNational Health Act (Act 61 of 2003).a list URL: https://www.gov.za/sites/default/files/gcis_document/201409/a61-03.pdf of indicators for 11 Parliamentary United Monitoring Nations. International Group. NHI Covenant public hearings: on Economic, planning Social session; and 2Cultural September Rights. 2020. New York: UN; 1966. URL: https://pmg.org.za/committee-meeting/31011/.URL: https://www.ohchr.org/en/professionalinterest/pages/cescr.aspx. 12 Parliamentary Minister Monitoring of Health. Group. National National Health HealthInsurance Insurance Bill (Bill (NHI) 11 of public2019). participation: way forward 12. Parliamentary Monitoring Group. National Health 13 URL: https://www.gov.za/sites/default/files/gcis_document/201908/national-health-insurance-bill-b-11-2019.pdf.. 13 October 2020. URL: https://pmg.org.za/committee-meeting/31182/. Republic of South Africa. Mental Health Parliamentary Care Act (ActMonitoring 17 of 2002). Group. NHI public hearings: planning session; 2 September 2020. theURL: prevention https://www.gov.za/sites/default/files/gcis_document/201409/a17-02.pdf.URL: https://pmg.org.za/committee-meeting/31011/. and control of four major diseases. The 14 South African Parliamentary Human RightsMonitoring Commission. Group. National Report ofHealth the National Insurance Investigative (NHI) public Hearing participation: into the way Status forward of Mental Health Care in South Africa; 14-15 November 2017. URL: https://www.sahrc.org.za/home/21/files/SAHRC%20Mental%20Health%20Report%20Final%2025032019.pdf . 13 October 2020. URL: https://pmg.org.za/committee-meeting/31182/. https://www.sahrc.org.za/home/21/files/SAHRC%20Mental%20Health%20Report%20Final%2025032019.pdf.. 15 Republic of South Africa. Green Mental A. COVID-19: Health CareExtremely Act (Act high 17 levelsof 2002). of stress among employees in SA. Spotlight; 24 July 2020. Insurance (NHI) public participation: way forward; URL: https://www.spotlightnsp.co.za/2020/07/24/covid-19-extremely-high-levels-of-stress-among-employees-in-sa/.URL: https://www.gov.za/sites/default/files/gcis_document/201409/a17-02.pdf. 16 Private Member’sSouth African Bill. HumanNational Rights Health Commission. Amendment Report Bill (Bill of 29 the of National 2018). Investigative Hearing into the Status of Mental Health Care in South Africa; 14-15 November 2017. frameworkURL: https://pmg.org.za/bill/830/.URL: https://www.sahrc.org.za/home/21/files/SAHRC%20Mental%20Health%20Report%20Final%2025032019.pdf has been criticised for not adequately https://www.sahrc.org.za/home/21/files/SAHRC%20Mental%20Health%20Report%20Final%2025032019.pdf.. addressing 17 Gray A, GreenVawda A. Y. COVID-19:Health legislation Extremely and high policy. levels In: ofMoeti stress T, Padarathamong employees A, editors. inSouth SA. Spotlight;African Health 24 July Review 2020. 2019. Durban: Health Systems Trust; 2019. 18 URL: https://www.spotlightnsp.co.za/2020/07/24/covid-19-extremely-high-levels-of-stress-among-employees-in-sa/. Minister of Social Development. Social Service Practitioners Draft Bill, 2019. Government Notice No. 387, Government Gazette No. 43145; 27 March 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202003/43145gon387.pdf. Private Member’s Bill. National Health Amendment Bill (Bill 29 of 2018). 13 October 2020. URL: https://pmg.org.za/committee- 19 URL: https://pmg.org.za/bill/830/.83 Department of Social Development. Social Services Professions Act (Act 110 of 1978. URL: http://www.ci.uct.ac.za/sites/default/files/image_tool/images/367/Law_reform/SocialServiceProfessionsAct.pdf. 20 Department Gray ofA, SocialVawda Development. Y. Health legislation Social Servicesand policy. Professions In: Moeti T, Act Padarath (Act 110 A, of editors. 1978. Section South African5 (1) (vii) Health (bb). URL: Review http://www.ci.uct.ac.za/sites/default/files/image_tool/images/367/Law_reform/SocialServiceProfessionsAct.pdf 2019. Durban: Health Systems Trust; 2019. . disability.21 World Intellectual Minister of Property Social Development. Organization. Social Marrakesh Service Treaty Practitioners to Facilitate Draft Access Bill, 2019. to Published Government Works Notice for Persons No. 387, Who Government Are Blind, Gazette Visually No. Impaired 43145; or 27 Otherwise March 2020. Print Disabled; 2016. URL: https://www.wipo.int/edocs/pubdocs/en/wipo_pub_218.pdf.URL: https://www.gov.za/sites/default/files/gcis_document/202003/43145gon387.pdf. 22 Minister Department of Trade and of Industry. Social Development. Copyright Amendment Social Services Bill (Bill Professions 13b of 2017). Act (Act 110 of 1978. URL: http://www.ci.uct.ac.za/sites/default/files/image_tool/images/367/Law_reform/SocialServiceProfessionsAct.pdf. URL: https://www.gov.za/sites/default/files/gcis_document/201811/copyright-amendment-bill-b13b-2017.pdf. Department of Social Development. Social Services Professions Act (Act 110 of 1978. Section 5 (1) (vii) (bb). URL: http://www.ci.uct.ac.za/sites/default/files/image_tool/images/367/Law_reform/SocialServiceProfessionsAct.pdfmeeting/31182/. . 23 Blind SA. Blind SA constitutional challenge of the Copyright Amendment Bill; 19 June 2020. URL: https://blindsa.org.za/2020/06/19/blind-sa-constitutional-challenge-of-the-copyright-amendment-bill/ World Intellectual Property Organization. Marrakesh Treaty to Facilitate. Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled; 2016. 24 URL: https://www.wipo.int/edocs/pubdocs/en/wipo_pub_218.pdf. Republic of South Africa. President Cyril Ramaphosa refers Copyright and Performers’ Protection Amendment Bills to Parliament; 23 June 2020. URL: https://www.gov.za/speeches/president-cyril-ramaphosa%C2%A0refers-copyright-and-performers%E2%80%99-protection-amendment-bills. Minister of Trade and Industry. Copyright Amendment Bill (Bill 13b of 2017). 25 URL: https://www.gov.za/sites/default/files/gcis_document/201811/copyright-amendment-bill-b13b-2017.pdf. Samtani S. Parliament can uphold the Constitution by passing the Copyright Amendment Bill – again. Daily Maverick; 12 July 2020. URL: https://www.dailymaverick.co.za/opinionista/2020-07-12-parliament-can-uphold-the-constitution-by-passing-the-copyright-amendment-bill-again/. Blind SA. Blind SA constitutional challenge of the Copyright Amendment Bill; 19 June 2020. 26 URL: https://blindsa.org.za/2020/06/19/blind-sa-constitutional-challenge-of-the-copyright-amendment-bill/ Parliamentary Monitoring Group. Copyright Amendment Bill (B13-2017); September 2020.. URL: https://pmg.org.za/bill/705/. 27 Minister Republic of Justice of and South Constitutional Africa. President Development Cyril Ramaphosa and Others refers v Prince; Copyright National and DirectorPerformers’ of Public Protection Prosecutions Amendment and OthersBills to Parliament;v Rubin; National 23 June Director 2020. of Public Prosecu13.tions andMinister Others v Acton and Others of [2018] Health. ZACC 30. URL: https://collections.concourt.org.za/handle/20.500.12144/34547. Mental Health Care Act (Act 17 of “Equity28 URL: https://www.gov.za/speeches/president-cyril-ramaphosa%C2%A0refers-copyright-and-performers%E2%80%99-protection-amendment-bills. in health Minister of Justice. is Drugs an and Drugethical Trafficking Act value,No 142 of 1992. URL: inherently https://www.justice.gov.za/legislation/acts/1992-140.pdf. normative, 29 Minister Samtani of Health. S. ParliamentMedicines andcan Relateduphold theSubstances Constitution Act: by Schedules. passing the Government Copyright NoticeAmendment No. 586, Bill Government– again. Daily Gazette Maverick; No. 12 43347; July 2020. 22 May 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202005/43347rg11118gon586.pdf.URL: https://www.dailymaverick.co.za/opinionista/2020-07-12-parliament-can-uphold-the-constitution-by-passing-the-copyright-amendment-bill-again/. 30 Minister Parliamentary of Justice and Monitoring Correctional Group. Services. Copyright Cannabis Amendment for Private Bill Purposes (B13-2017); Bill September (Bill 19 of 2020). 2020. URL: https://pmg.org.za/bill/705/. URL: https://www.gov.za/sites/default/files/gcis_document/202010/cannabis-private-purposes-bill-b19-2020.pdf. Minister of Justice and Constitutional Development and Others v Prince; National Director of Public Prosecutions and Others v Rubin; National Director of Public Prosecutions and Others v Acton and Others [2018] ZACC 30. URL: https://collections.concourt.org.za/handle/20.500.12144/34547. 31 S v L M Ministerand Others of Justice. (97/18; 98/18;Drugs 99/18;and Drug 100/18) Trafficking [2020] ZAGPJHC Act No 142 170 of (31 1992. July 2020).URL: https://www.justice.gov.za/legislation/acts/1992-140.pdf. 2002). URL: https://www.gov.za/sites/default/files/gcis_ groundedURL: http://www.saflii.org/za/cases/ZAGPJHC/2020/170.pdf. in the Minister ethical of Health. Medicines principle and Related Substances Act: of Schedules. distributive Government Notice No. 586, justice Government Gazette and No. 43347; 22 May 2020. 32 URL: https://www.gov.za/sites/default/files/gcis_document/202005/43347rg11118gon586.pdf. Minister of Justice. Child Justice Act (Act 75 of 2008). URL: https://www.justice.gov.za/legislation/acts/2008-075_childjustice.pdf. 33 Smit v The Minister Minister of Justice of Justice and and Correctional Correctional Services. Services Cannabis and Others for Private (Case PurposesNo 14655/2015) Bill (Bill [2019] 19 of 2020).ZAWHC 102. URL: http://www.saflii.org/za/cases/ZAWCHC/2019/102.pdf. 34 URL: https://www.gov.za/sites/default/files/gcis_document/202010/cannabis-private-purposes-bill-b19-2020.pdf. Ellis E. UK man in court to have SA’s prohibited drugs list declared unconstitutional. Daily Maverick; 21 February 2020. URL: https://www.dailymaverick.co.za/article/2020-02-21-uk-man-in-court-to-have-sas-prohibited-drugs-list-declared-unconstitutional/. 35 Whiting SPF, v LWolff M and RF, Others Deshpande (97/18; 98/18;S, et al. 99/18; Cannabinoids 100/18) [2020] for medical ZAGPJHC use: 170a systematic (31 July 2020). 1review and meta-analysis. JAMA 2015;313(24):2456-73. 36 URL: http://www.saflii.org/za/cases/ZAGPJHC/2020/170.pdf. Food and Drug Administration. FDA approves new indication for drug containing an active ingredient derived from cannabis to treat seizures in rare genetic disease;document/201409/a17-02.pdf 31 July 2020. . consonantURL: https://www.fda.gov/news-events/press-announcements/fda-approves-new-indication-drug-containing-active-ingredient-derived-cannabis-treat-seizures-rare. with Minister human of Justice. Child Justice rights Act (Act 75 ofprinciples”. 2008). URL: https://www.justice.gov.za/legislation/acts/2008-075_childjustice.pdf. Regrettably, the 37 Minister Smit of Social v The Development. Minister of Justice National and Drug Correctional Master PlanServices 2019-2024. and Others 24 June (Case 2020. No 14655/2015) [2019] ZAWHC 102. URL: http://www.saflii.org/za/cases/ZAWCHC/2019/102.pdf. URL: https://www.gov.za/sites/default/files/gcis_document/202006/drug-master-plan.pdf. Ellis E. UK man in court to have SA’s prohibited drugs list declared unconstitutional. Daily Maverick; 21 February 2020. URL: https://www.dailymaverick.co.za/article/2020-02-21-uk-man-in-court-to-have-sas-prohibited-drugs-list-declared-unconstitutional/. 38 Office Whiting of Health PF, Standards Wolff RF, Compliance.Deshpande S,Code et al. of Cannabinoidsconduct for inspectors. for medical Governmentuse: a systematic Notice review No. 817, and Government meta-analysis. Gazette JAMA No. 2015;313(24):2456-73. 42496; 31 May 2019. URL: https://www.gov.za/sites/default/files/gcis_document/201905/42496gon817.pdf. Food and Drug Administration. FDA approves new indication for drug containing an active ingredient derived from cannabis to treat seizures in rare genetic disease; 31 July 2020. 39 URL: https://www.fda.gov/news-events/press-announcements/fda-approves-new-indication-drug-containing-active-ingredient-derived-cannabis-treat-seizures-rare. Minister of Health. Designation of health establishments to provide acute care, rehabilitation and palliative care for cerebral palsy. Government Notice No. 1146, Government Gazette No. 42687; 5 September 2019. slowURL: https://www.gov.za/sites/default/files/gcis_document/201909/42687gon1146.pdf. progress Ministerwith of Social regard Development. National to Drug equity Master Plan 2019-2024. in 24health June 2020. for disabled 40 URL: https://www.gov.za/sites/default/files/gcis_document/202006/drug-master-plan.pdf. Minister of Health. Health Professions Act: Qualifications for registration of basic ambulance assistants, ambulance emergency assistants, operational emergency care orderlies and paramedics: Amendment. Government Notice No. 938, Government Gazette No. 42545; 28 June 2019. URL: https://www.gov.za/sites/default/files/gcis_document/201906/42545gon938.pdf. Office of Health Standards Compliance. Code of conduct for inspectors. Government Notice No. 817, Government Gazette No. 42496; 31 May 2019. 14. South African Human Rights Commission. Report of 41 URL: https://www.gov.za/sites/default/files/gcis_document/201905/42496gon817.pdf. Minister of Health. Health Professions Act: Specialities and sub-specialities in medicine and dentistry: Amendment. Government Notice No. 376, Government Gazette No. 43145; 27 March 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202003/43145gon376.pdf. Minister of Health. Designation of health establishments to provide acute care, rehabilitation and palliative care for cerebral palsy. Government Notice No. 1146, Government Gazette No. 42687; 5 September 2019. 42 URL: https://www.gov.za/sites/default/files/gcis_document/201909/42687gon1146.pdf Minister of Health. Health Professions Act: Draft Regulations defining. the scope of the profession of nutritionists. Government Notice No. 273, Government Gazette No. 43074; 6 March 2020. personsURL: https://www.gov.za/sites/default/files/gcis_document/202003/43074rg11050gon273.pdf. recounted Minister of Health. here Health Professions is aAct: Qualificationssad commentary for registration of basic ambulance assistants, on ambulancethe emergencyfailure assistants, operational emergency care orderlies and paramedics: Amendment. Government Notice No. 938, Government Gazette No. 42545; 28 June 2019. 43 URL: https://www.gov.za/sites/default/files/gcis_document/201906/42545gon938.pdf. Minister of Health. Health Professions Act: Regulations: Defining scope of profession of psychology. Government Notice No. 1169, Government Gazette No. 42702; 13 September 2019. URL: https://www.gov.za/sites/default/files/gcis_document/201909/42702gon1169.pdf. Minister of Health. Health Professions Act: Specialities and sub-specialities in medicine and dentistry: Amendment. Government Notice No. 376, Governmentthe Gazette National No. 43145; 27 March 2020. Investigative Hearing into the Status of Mental 44 URL: https://www.gov.za/sites/default/files/gcis_document/202003/43145gon376.pdf. Minister of Health. Health Professions Act: Regulations: Conduct of inquiries into alleged unprofessional conduct: Amendment. Government Notice No. 187, Government Gazette No. 43035; 21 February 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202002/43035gon187.pdf. Minister of Health. Health Professions Act: Draft Regulations defining the scope of the profession of nutritionists. Government Notice No. 273, Government Gazette No. 43074; 6 March 2020. 45 URL: https://www.gov.za/sites/default/files/gcis_document/202003/43074rg11050gon273.pdf. Van der Walt v S [2020] ZACC 19. URL: http://www.saflii.org/za/cases/ZACC/2020/19.pdf. of 46both distributive Minister Minister of Health. of Health.Allied justice Health Health Professions Professions andAct: Act: Inclusion Regulations: protection of profession Defining of scope aromatherapy of profession andof reflexology.of psychology.the Government humanGovernment Notice Notice No. No. 1224, 1169, GovernmentGovernment GazetteGazette No.No. 42725; 42702; 27 13 SeptemberSeptember 2019.2019. URL: https://www.gov.za/sites/default/files/gcis_document/201909/42725gon1224.pdf.URL: https://www.gov.za/sites/default/files/gcis_document/201909/42702gon1169.pdf . 47 Minister Minister of Health. of Health.Allied Health Health Professions Professions Act: Act: Regulations: Regulations: Amendment. Conduct of inquiriesGovernment into Noticealleged No. unprofessional 940, Government conduct: Gazette Amendment. No. 42545; Government 28 June 2019. Notice No. 187,Health Government Gazette Care No. 43035; 21in February South 2020. Africa; 14-15 November 2017. URL: https://www.gov.za/sites/default/files/gcis_document/201906/42545gon940.pdf.URL: https://www.gov.za/sites/default/files/gcis_document/202002/43035gon187.pdf. 48 Allied Health Van der Professions Walt v S [2020] Council ZACC of South 19. URL: Africa. http://www.saflii.org/za/cases/ZACC/2020/19.pdf. Allied Health Professions Act: Unprofessional Conduct Board Notice: Issuing of certificate of indisposition without an examination. Board Notice No. 102 , Government Gazette No. 42561; 5 July 2019. URL: https://www.gov.za/sites/default/files/gcis_document/201907/42561bn102.pdf. Minister of Health. Allied Health Professions Act: Inclusion of profession of aromatherapy and reflexology. Government Notice No. 1224, Government Gazette No. 42725; 27 September 2019. rights49 URL: of https://www.gov.za/sites/default/files/gcis_document/201909/42725gon1224.pdf. such Allied Healthpersons. Professions Council of South Africa. Allied Health Professions Act: Unprofessional Conduct Board Notice: Ingestion of aromatherapy oils. Board Notice No. 104, Government Gazette No. 42561; 5 July 2019. URL: https://www.gov.za/sites/default/files/gcis_document/201907/42561bn104.pdf. 50 Minister Minister of Health. of Health.Nursing Allied Act: Creation Health Professions of categories Act: of Regulations:practitioners. Amendment. Government Government Notice No. 939, Notice Government No. 940, Government Gazette No. Gazette42545; 28No. June 42545; 2019. 28 June 2019. URL: https://www.gov.za/sites/default/files/gcis_document/201906/42545gon939.pdf.URL: https://www.gov.za/sites/default/files/gcis_document/201906/42545gon940.pdf. URL: https://www.sahrc.org.za/home/21/files/SAHRC%20 51 South African Allied HealthNursing Professions Council. Nursing Council Act: of Regulations:South Africa. EducationAllied Health and Professions training of learnersAct: Unprofessional leading to registration Conduct Board in categories Notice: Issuing professional of certificate nurse and of indispositionmidwife: date withoutfrom which an examination. no new learners Board will Notice be admitted. No. 102 Government Notice, Government No. 106, Government Gazette No. Gazette 42561; No.5 July 43000; 2019. 7 February 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202002/43000rg11038gon106.pdf.URL: https://www.gov.za/sites/default/files/gcis_document/201907/42561bn102.pdf. 52 Minister Allied of Higher Health Education, Professions Science Council and of Technology. South Africa. Higher Allied Education Health Professions Act: Transitional Act: Unprofessional arrangements: Conduct Accredited Board nursing Notice: qualifications Ingestion of registeredaromatherapy on HEQSF.oils. Board Government Notice No. Notice 104, GovernmentNo. 1349, Government Gazette No. Gazette 42561; 5No. July 42774; 2019. 16 URL: October https://www.gov.za/sites/default/files/gcis_document/201907/42561bn104.pdf. 2019. URL: https://www.gov.za/sites/default/files/gcis_document/201910/42774gon1349.pdf. Minister of Health. Nursing Act: Creation of categories of practitioners. Government Notice No. 939, Government Gazette No. 42545; 28 June 2019. 53 URL: https://www.gov.za/sites/default/files/gcis_document/201906/42545gon939.pdf. Minister of Health. Nursing Act: Regulations: Scope of practice for nurses and midwives: Comments invited. Government Notice No. 521, Government Gazette No. 43305; 12 May 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202005/43305gon521_0.pdf. South African Nursing Council. Nursing Act: Regulations: Education and training of learners leading to registration in categories professional nurse and midwife:Mental%20Health%20Report%20Final%2025032019.pdf date from which no new learners will be admitted. Government Notice No. 106, Government Gazette No. 43000; 7 February 2020. . 54 URL: https://www.gov.za/sites/default/files/gcis_document/202002/43000rg11038gon106.pdf. Minister of Health. Nursing Act: Regulations: Scope of practice for nurses and midwives: Comments invited. Government Notice No. 744, Government Gazette No. 434960; 3 July 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202007/43496rg11144gon744.pdf. Minister of Higher Education, Science and Technology. Higher Education Act: Transitional arrangements: Accredited nursing qualifications registered on HEQSF. Government Notice No. 1349, Government Gazette No. 42774; 16 October 2019. 55 URL: https://www.gov.za/sites/default/files/gcis_document/201910/42774gon1349.pdf. Minister of Health. Regulations relating to the approval of minimum requirements for the education and training of a student leading to registration as a nurse specialist or midwife specialist. Government Notice No. 635, Government Gazette No. 43398; 5 June 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202006/43398gon635.pdf. Minister of Health. Nursing Act: Regulations: Scope of practice for nurses and midwives: Comments invited. Government Notice No. 521, Government Gazette No. 43305; 12 May 2020. 56 URL: https://www.gov.za/sites/default/files/gcis_document/202005/43305gon521_0.pdf. South African Nursing Council. Rules for continuing professional development and renewal of registration: Comments invited. Government Notice No. 1569, Government Gazette No. 42887; 06 December 2019. URL: https://www.gov.za/sites/default/files/gcis_document/201912/42887gon1569.pdf. Minister of Health. Nursing Act: Regulations: Scope of practice for nurses and midwives: Comments invited. Government Notice No. 744, Government Gazette No. 434960; 3 July 2020. 57 URL: https://www.gov.za/sites/default/files/gcis_document/202007/43496rg11144gon744.pdf. South African Pharmacy Council, Guidance document for continuing professional development. Board Notice No. 82, Government Gazette No. 43495; 3 July 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202007/43495bn82s.pdf. Minister of Health. Regulations relating to the approval of minimum requirements for the education and training of a student leading to registration as a nurse specialist or midwife specialist. Government Notice No. 635, Government Gazette No. 43398; 5 June 2020. 58 URL: https://www.gov.za/sites/default/files/gcis_document/202006/43398gon635.pdf. South African Pharmacy Council. Rules relating to Good Pharmacy Practice - minimum standards for trading titles. Board Notice No. 81, Government Gazette No. 43495;15. 3 July 2020.Green A. COVID-19: Extremely high levels of stress URL: https://www.gov.za/sites/default/files/gcis_document/202007/43495bn81.pdf. South African Nursing Council. Rules for continuing professional development and renewal of registration: Comments invited. Government Notice No. 1569, Government Gazette No. 42887; 06 December 2019. 59 URL: https://www.gov.za/sites/default/files/gcis_document/201912/42887gon1569.pdf. South African Pharmacy Council. Guideline for removal of pharmacy registration/recording as a result of non-compliance with GPP and other pharmacy legislation. Board Notice No. 63, Government Gazette No. 43358; 29 May 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202005/43358bn63. pdf. South African Pharmacy Council, Guidance document for continuing professional development. Board Notice No. 82, Government Gazette No. 43495; 3 July 2020. 60 URL: https://www.gov.za/sites/default/files/gcis_document/202007/43495bn82s.pdf. Minister of Health. Regulations relating to the registration of persons and the maintenance of registers: Amendment. Government Notice No. 656, Government Gazette No. 43418; 12 June 2020. URL: https://www.gov.za/sites/default/files/gcis_document/202006/43418gon656s.pdf. South African Pharmacy Council. Rules relating to Good Pharmacy Practice - minimum standards for trading titles. Board Notice No. 81, Government Gazette No. 43495; 3 July 2020. 61 URL: https://www.gov.za/sites/default/files/gcis_document/202007/43495bn81.pdf. Minister of Health. Regulations relating to pharmacy education and training: Amendment. Government Notice No. 658, Government Gazette No. 43418; 12 June 2020.among employees in SA. Spotlight; 24 July 2020. ReferencesURL: https://www.gov.za/sites/default/files/gcis_document/202006/43418gon658s.pdf. South African Pharmacy Council. Guideline for removal of pharmacy registration/recording as a result of non-compliance with GPP and other pharmacy legislation. 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URL: https://www.gov.za/sites/default/files/gcis_document/201505/act-53-1974.pdf. 64 Independent South Community African Pharmacy Pharmacy Council. Association Pharmacy v Minister Act: Good of Health Pharmacy and OthersEducation (11647/18) Standards: [2020] Occupational ZAWCHC 47; Qualification 3 June 2020. Framework URL: http://www.saflii.org/za/cases/ZAWCHC/2020/47.pdf. Sub-Framework. Board Notice No. 78, Government Gazette No. 43495; 3 July 2020. 65 URL: https://www.gov.za/sites/default/files/gcis_document/202007/43495bn78.pdf. Minister of Health. Medicines and Related Substances Act: Exclusion of certain alcohol-based hand-rubs from the operation of specified provisions. Government URL:Notice No. 721, https://www.spotlightnsp.co.za/2020/07/24/covid-19-Government Gazette No. 43484; 26 June 2020. URL:https://www.gov.za/sites/default/files/gcis_document/202006/43484rg11141gon721s. pdf. Minister of Health. Pharmacy Act (Act 53 of 1974). 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The Alliance of Natural Health Products in South Africa v The Minister of Health and South African Health Products Regulatory Authority (Case No. 11203/2018). 72 South African Minister Health of Health. Products Call Regulatoryfor the nomination Authority. of Mediaa person release: to be appointedSAHPRA's Stanceby the Ministeron the ANHP of Health Judgement; to serve 29as Octobermember 2020.of the South African Health Products Regulatory Authority (SAHPRA). 2020. URL: https://www.sahpra.org.za/wp-content/uploads/2020/10/Media-release-ANHP-Judgement.pdfURL: http://www.health.gov.za/index.php/2015-03-29-10-31-24?download=4307:nomination-form-for-board-members-to-serve-on-the-south-african-products-regulatory-authority-sahpra.. 16. Private Member’s Bill. National Health Amendment Bill J Epidemiol73 MinisterCommunity The of Health. 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URL: https://www.gov.za/sites/default/files/ document/202007/43495bn78.pdf. gcis_document/201910/42774gon1349.pdf. 63. Minister of Health. Pharmacy Act (Act 53 of 1974). 53. Minister of Health. Nursing Act: Regulations: Scope URL: https://www.gov.za/sites/default/files/gcis_ of practice for nurses and midwives: Comments invited. document/201505/act-53-1974.pdf. Government Notice No. 521, Government Gazette 64. Independent Community Pharmacy Association v No. 43305; 12 May 2020. URL: https://www.gov.za/sites/ Minister of Health and Others (11647/18) [2020] ZAWCHC default/files/gcis_document/202005/43305gon521_0.pdf. 47; 3 June 2020. URL: http://www.saflii.org/za/cases/ 54. Minister of Health. Nursing Act: Regulations: Scope ZAWCHC/2020/47.pdf. of practice for nurses and midwives: Comments invited. 65. Minister of Health. Medicines and Related Substances Government Notice No. 744, Government Gazette Act: Exclusion of certain alcohol-based hand-rubs from No. 434960; 3 July 2020. 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Health legislation and policy: a focus on disability 43 66. Minister of Health. Medicines and Related Substances 75. Minister of Health. Medicines and Related Substances Act: Exclusion of Schedule 2, Schedule 3 and Schedule Act: Dispensing fee to be charged by persons licensed 4 substances from the operation of certain provisions. in terms of section 22C (1) (a). Government Notice Government Notice No. 514, Government Gazette No. 377, Government Gazette No. 43145; 27 March 2020. No. 43294; 7 May 2020. URL: https://www.gov.za/sites/ URL: https://www.gov.za/sites/default/files/gcis_ default/files/gcis_document/202005/43294gon514.pdf. document/202003/43145gon377.pdf. 67. President of the Republic of South Africa. Referral 76. Minister of Health. Medicines and Related Substances of matters to existing Special Investigating Unit: South Act: Exemption of medical devices and in-vitro diagnostics. African Health Products Regulatory Authority. Proclamation Government Notice No. 696, Government Gazette No. R54 of 2019, Government Gazette No. 42773; No. 42474; 24 May 2019. URL: https://www.gov.za/sites/ 18 October 2019. URL: https://www.gov.za/sites/default/files/ default/files/gcis_document/201905/42474gon696.pdf. gcis_document/201910/42773rg10994pr54.pdf. 77. Minister of Health. Medicines and Related Substances 68. Green-Thomson RW (chair). Report of the Ministerial Act: Exclusion of certain medicines, medical devices Task Team on the restructuring of the Medicines Regulatory and in vitro diagnostics (IVDs) donated to the state from Affairs and Medicines Control Council and recommendations the operation of certain provisions. Government Notice for the new regulatory authority for health products of South No. 585, Government Gazette No. 43346; 22 May 2020. Africa. Pretoria; 2008. URL: https://www.gov.za/sites/default/ URL: https://www.gov.za/sites/default/files/gcis_ files/gcis_document/201409/report-ministerial-task-team- document/202005/43346rg11117gon585.pdf. restructuring-medicines-regulatory-affairs-and-medicines- 78. Minister of Health. Call for nominations to serve on control.pdf. Medicines Pricing Committee (The Pricing Committee); 69. Minister of Health. Medicines and Related Substances 2020. URL: http://www.mpr.gov.za/Publish/ViewDocument. Act: Regulations: Fees payable: Comments invited. aspx?DocumentPublicationId=4648. Government Notice No. 659, Government Gazette 79. Minister of Co-operative Governance and Traditional No. 43418; 12 June 2020. URL: https://www.gov.za/sites/ Affairs. Declaration of national state of disaster. Government default/files/gcis_document/202006/43418gon659s.pdf. Notice No. 243, Government Gazette No. 43066; 70. Minister of Health. Call for the nomination of a person 4 March 2020: URL: https://www.gov.za/sites/default/files/ to be appointed by the Minister of Health to serve as gcis_document/202003/43066gon243.pdf. member of the South African Health Products Regulatory 80. Minister of Health. Disaster Management Act: Authority (SAHPRA); 2020. URL: http://www.health.gov.za/ Directions: Measures to address, prevent and combat index.php/2015-03-29-10-31-24?download=4307:nomination- the spread of Coronavirus COVID-19 in the health sector. form-for-board-members-to-serve-on-the-south-african- Government Notice No. 589, Government Gazette products-regulatory-authority-sahpra. No. 43350; 25 May 2020. URL: https://www.gov.za/sites/ 71. The Alliance of Natural Health Products in South Africa default/files/gcis_document/202005/43350gon589s.pdf. v The Minister of Health and South African Health Products 81. Minister of Trade and Industry. Competition Act: Regulatory Authority (Case No. 11203/2018). Expansion of the scope of COVID-19 block exemption 72. South African Health Products Regulatory Authority. for health care sector. Government Notice No. Media release: SAHPRA's Stance on the ANHP Judgement; R.456, Government Gazette No. 43215; 8 April 2020. 29 October 2020. URL: https://www.sahpra.org.za/wp-content/ URL: https://www.gov.za/sites/default/files/gcis_ uploads/2020/10/Media-release-ANHP-Judgement.pdf. document/202004/43215rg11084gon456s.pdf. 73. Minister of Health. Medicines and Related Substances 82. World Health Organization. A comprehensive global Act: Annual single exit price adjustment of medicines monitoring framework, including indicators, and a set of and scheduled substances for 2020. Government Notice voluntary global targets for the prevention and control of No. 322, Government Gazette No. 43110; 20 March 2020. non-communicable diseases (v3) [Revised WHO Discussion URL: https://www.gov.za/sites/default/files/gcis_ Paper (version dated 2012 July 25)]. URL: https://ncdalliance. document/202003/43110gon322.pdf. org/sites/default/files/discussion_paper3_0.pdf. 74. Minister of Health. Medicines and Related Substances 83. Day C, Gray A, Ndlovu N, Cois A. Health and related Act: Dispensing fee for pharmacists. Government Notice indicators: interrogating the UHC service coverage index. No. 679, Government Gazette No. 43447; 19 June 2020. In: Moeti T, Padarath A, editors. South African Health Review URL: https://www.gov.za/sites/default/files/gcis_ 2019. Durban. Health Systems Trust; 2019. document/202006/43447gon679.pdf.
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44 South African Health Review 2020 REVIEW 5 Framing the debate on how to achieve equitable health care for persons with disabilities in South Africa
Greater levels of political will, leadership Authors Hannah Kuperi* and funding are required to implement the Jill Hanass-Hancockii* robust disability-inclusive policies and plans that exist in South Africa.
This chapter attempts to frame the debate on how to achieve An increased focus on people with disabilities is needed equitable healthcare coverage for people with disabilities urgently in South Africa if the country is to achieve Universal in South Africa; this was done by reflecting on the needs Health Coverage (UHC). Greater levels of political will, and access gaps experienced, the drivers of inequity, and leadership and funding are required to implement the robust potential levers and solutions to resolving these issues. disability-inclusive policies and plans that exist in South Africa. Pockets of good practice can inspire our thinking on People with disabilities in South Africa have greater how to implement these strategies on the ground. healthcare needs than those without disabilities; they may require disability-related services, but on average they also The chapter offers a series of recommendations to improve experience poorer health. However, significant accessibility, the inclusion of people with disabilities in UHC in South informational, attitudinal, and/or financial barriers exist to Africa. This may include developing institutional disability- accessing primary health care for people with disabilities. inclusive policies, establishing insurance systems that Additionally, a lack of disability-specific services, including cover disability needs, staff training and sensitisation rehabilitation, prevents many people with disabilities from around disability, developing standardised and easy-to-use accessing the services and assistive devices that they disability audits for facilities and services, establishing patient need. As a consequence, people with disabilities in South databases and IT support structures, and developing service Africa have higher levels of unmet health needs and worse delivery models that utilise peer-supporters and educators. morbidity and mortality outcomes than those without Improving the amount and quality of data through consistent disabilities. monitoring and implementation research is crucial in order to understand and monitor the issues, and to understand what works in providing services to people with disabilities.
* These authors contributed equally to the chapter i International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine ii Gender and Health Research Unit, South African Medical Research Council; School of Health Sciences, University of KwaZulu-Natal
Click to navigate Framing the debate on how to achieve equitable health care for people with disabilities in Southto Contents Africa 45 health status of people with disabilities in South Africa9 Introduction shows that, on average, people with disabilities have worse health,10 a higher prevalence of chronic conditions,11 11 12 13 Universal Health Coverage (UHC) means that people can psychological conditions, diabetes and HIV, and higher 14 obtain all the health services they need, without incurring mortality levels. financial hardship.1 Equity is at the heart of UHC, and is based on the commitment that these healthcare services There are a variety of reasons why people with disabilities 5 be effective, accessible and of acceptable quality for all experience worse health. By definition, people with population groups and across the continuum of care. disabilities have an underlying health condition and 15 Achievement of UHC is a key ambition of the global impairment (e.g. cerebral palsy and physical impairment), health community and the Sustainable Development which are linked to other health needs (e.g. risk of urinary Goals (SDGs).1,2 Recent decades have witnessed progress tract infections among wheelchair users). People with towards UHC, including in South Africa.3 However, it disabilities are also on average older, poorer and more 4 is increasingly clear that some groups need additional marginalised, which are all known risk factor for poor attention in order for UHC to be achieved, and the one health. They may also have more risk factors for poor health, 16 billion people with disabilities globally constitute one such such as experiencing violence, sedentary lifestyle, use 17 group.4 of alcohol, tobacco and drugs, and high blood pressure and cholesterol.11 Yet, people with disabilities face barriers Global data show that on average, people with disabilities to healthcare services, as described below, which further have a greater need for healthcare services than people threaten health. without disabilities, yet they face a range of barriers to health care, and therefore often have worse access.4,5 This People with disabilities will therefore, on average, have inequity in healthcare access for people with disabilities, greater general healthcare needs than others in the who make up 15% of the world’s population, may threaten population. They will also require regular healthcare the achievement of UHC.5 The importance of focusing on services (e.g. vaccinations) and potentially specialised disability in relation to UHC is increasingly recognised. healthcare services, such as physiotherapy. Equal utilisation The 2019 Declaration on UHC, following the United Nations of healthcare services will therefore not allow people with (UN) High-level Meeting (23 September 2019), includes the disabilities to achieve the same health outcomes as others requirement to “Increase access to health services for all in the population, given their greater needs. Health equity persons with disabilities, remove physical, attitudinal, social, will only be achieved through additional focus on service structural and financial barriers, provide quality standard provision for people with disabilities. of care and scale up efforts for their empowerment and inclusion, noting that persons with disabilities … continue to experience unmet health needs”.6 The right to healthcare access is also recognised in the UN Convention on the Healthcare barriers facing people Rights of Persons with Disabilities (UN CRPD).7 with disabilities
The healthcare experiences and needs of people with disabilities vary widely between settings, thus in-depth People with disabilities often face greater difficulties than consideration needs to be given to the situation in different others when seeking healthcare services, despite their 5,9 countries. This chapter attempts to frame the debate on how greater overall need. Barriers include: 18,19 to achieve equitable healthcare coverage for people with • Inaccessibility of services and transport. For example, disabilities in South Africa; this was done by reflecting on the a disability audit of primary health care (PHC) clinics needs and access gaps experienced, the drivers of inequity, in KwaZulu-Natal showed that only half of the facilities and potential levers and solutions to resolving these issues. had essential features such as ramps, doors and toilets that provide wheelchair access, and almost none provided information in Braille or offered sign language interpretation.20 Healthcare status and needs of • Unaffordability of services. People with disabilities bear additional costs related to disability, e.g. specialist people with disabilities transport costs, and additional care and support, yet they are on average poorer.4,21 Disability grants The 2016 South African Community Survey and 2011 national may contribute towards these costs, but are often 21 Census show that approximately one in seven people insufficient. in South Africa have at least some functional difficulties • Negative attitudes and discrimination. Healthcare (16.1% Community Survey, 17.2% census), while around staff may have negative attitudes and discriminate on 18,22 4% experience severe functional difficulties (4.4%, 4.3%).8 the grounds of disability. Healthcare workers often Although sparse and patchy, the available evidence on lack the skills and training to accommodate the needs of people with disabilities as medical training remains
46 South African Health Review 2020 focused on impairment-related needs.18,22 Worse still, health care. People with disabilities are less likely to have there are reports of mistreatment by healthcare workers, health insurance,10 and are vulnerable to catastrophic health for instance mistreatment of women with hearing expenditure when seeking health care in South Africa.21 impairment attending pregnancy and maternity services Together, this emerging evidence shows that people with in Cape Town.23 Such challenges may be compounded disabilities in South Africa experience challenges across in this country as healthcare providers often have an key aspects of UHC: access to care, access to all services excessive workload and lack resources and training needed, and affordability and quality of services provided. to provide care for people with disabilities.24 On the ground, this translates not only into negative attitudes Failure to include people with disabilities in the journey but also to lack of confidence on the part of healthcare towards UHC in South Africa can be illustrated using the staff.20 In a pilot study done in KwaZulu-Natal, healthcare example of HIV. Local data show that people with disabilities workers revealed that they did not know that a person exhibit more risk factors for HIV infection than people with disabilities can be infected with HIV, and reported without disabilities; for example they were found to have lacking the required skills to communicate effectively less knowledge about HIV, to practise inconsistent condom with people with disabilities.20 use more often, and to have more than one sexual partner • Lack of access to information on health and health or engage in casual or transactional sex more frequently.13,37 services.25 For instance, people with disabilities in Additionally, young people with disabilities lack access South Africa have been shown to lack knowledge of to HIV information and comprehensive sex education,38,39 treatment options and suitable assistive devices, and and experience difficulties in accessing HIV testing and as a consequence, they tend not to seek services.26 treatment services.40 Consequently, the data suggest Knowledge about impairments may be low as screening that HIV prevalence might be higher among people with and diagnosis are not routinely integrated into PHC.27 disabilities, in addition to the fact that living with HIV can Information barriers are particularly difficult for people lead to disabilities.13,41 Developing disabilities may also be with certain impairment types, such as hearing loss,28 as associated with lower adherence to antiretroviral therapy there is often a lack of interpretation services.23 (ART), yet rehabilitation is not integrated into HIV care.42 The • Widespread gaps in the availability of disability- continued lack of focus on disability will, therefore, make it specific care. South Africa has 7 937 registered more difficult to reach national and international HIV targets physiotherapists, or 137 per million population, less for testing, treatment, and viral suppression. than half the number in countries like the USA and Australia.29 Other generalist rehabilitation services are also not widely available in South Africa, such as speech and language therapy,30 occupational therapy,31 ear and Disability and UHC in South hearing services,30 ophthalmology,32 and psychiatry.33 These services are not only scarce, particularly Africa – why do inequities outside the private sector, but they are also inequitably persist? distributed, with rural areas being the most deprived.34 Vulnerability to poor health among people with disabilities Not all people with disabilities will experience barriers in the and their barriers to healthcare access in South Africa have same way. Inequities in access to healthcare services may been known for some time, so why are these inequities be particularly great for people with disabilities who live in persisting?9 These inequities result from the underlying rural areas, those who are older, and those who have more drivers of poor healthcare service access, including severe or less visible impairments.19,35 Gender differences inadequate legislation and policy, insufficient funding, are relevant as women often report more barriers than poor leadership and management, and/or lack of data and men,19 particularly for sexual and reproductive health (SRH) evidence.5 The relevance of these issues in South Africa will services.36 There are also facilitating factors in accessing be considered, in turn. healthcare services, such as good social support25 and higher education levels.19 South Africa is known for its progressive health and social policies that aim to achieve UHC and address the inequalities of the past.43-45 The country is currently undertaking major health system and finance reforms. It Failure to achieve UHC for people is developing a National Health Insurance (NHI) scheme, with disabilities set out in the 2019 National Health Insurance Bill, which will provide health cover for all South African citizens and permanent residents.45,46 The NHI scheme aims to contribute Barriers to service will likely lead to significant unmet to the achievement of UHC through creating a funding healthcare needs for people with disabilities,35 although mechanism to provide “access to quality healthcare services data related to this issue are extremely sparse in South that are delivered equitably, affordably, efficiently, effectively Africa. Barriers may also translate into poorer-quality and appropriately”. services for people with disabilities when they do seek
Framing the debate on how to achieve equitable health care for persons with disabilities in South Africa 47 The policy and bill outlining the NHI scheme prioritise programmes are often excluded in the workplans of health vulnerable groups, and lay out three fundamental elements facilities, and are not well integrated at health facility and relevant to people with disabilities.45,46 First, the policy local community level.34 promises activities for “infrastructure improvement”, potentially including accessibility of services.46 Second, it The persistent health inequity experienced by people highlights that disability and rehabilitation services will be with disabilities can therefore be attributed to gaps across “fully integrated into primary healthcare (PHC) with a view the building blocks of the health system, including health to increasing care, treatment and rehabilitation”, including workforce availability and skills, financing, leadership and provision of assistive devices and prostheses.46 Third, the governance, but perhaps most fundamentally, lack of policy and bill commit to prioritising people with disabilities, relevant data to inform planning.49 International targets including their ability to access services close to where they on health, such as SDG3 and UHC, lack indicators around live, potentially through the provision of mobile services.46 disability,1,2 in contrast to other SDGs (e.g. education and employment).2 Similarly, the new framework for measuring Additionally, national strategies in priority programmes UHC proposed 23 indicators, none of which referred to address the increased vulnerability of people with rehabilitation or were disability-specific.3 Data on health disabilities. These include the National Strategic Plan inequities with regard to disability are rarely collected in (NSP) on STIs, HIV and TB (NSP 2017-2022) and the South Africa, in contrast to health inequities in gender and Framework and Strategy for Disability and Rehabilitation ethnicity. As an example, the 2019 Statistics South Africa Services (FSDRS).38,47 The NSP 2017-2020, rated one of report on Inequality Trends in South Africa, used national the most inclusive NSPs in the region, goes as far as to data to compare health metrics for people from different identify specific programmes, such as training of healthcare groups (e.g. race, those with or without medical aid, workers, peer support mechanisms and rehabilitation to chronic conditions), resulting in a range of recommended reach persons with disabilities.38 South Africa has, therefore, improvements.50 However, this 234-page report ignored stated its intention to improve the inclusion of people with disability. Within healthcare systems, disability is often not disabilities in the health system through its legislation and recorded or inconsistently recorded in medical records, policy. Collectively, these commitments are in line with the making disaggregation of data by disability impossible (e.g. obligations set out in the UN CRPD, which was signed and for COVID incidence and mortality). There is also little known ratified in South Africa in 2007.7 about the effectiveness of reaching people with disabilities with different types of health services as both evaluation Yet, people with disabilities in South Africa continue to research and routine monitoring and evaluation are scarce. experience inequitable health care, even though appropriate It is not possible to plan, budget, monitor or enforce policy, legislation and strategic plans are in place. Health activities for disability inclusion without the relevant data. policies state the intention to deliver services, and strategies provide more information on the ‘how to’, but they need Better data are required on the healthcare needs and to be operationalised and translated into budget items in access of people with disabilities, although access is order to be implemented. Budget allocation for inclusive complex to measure. In assessing equity, one cannot directly policies and strategies is often overlooked and therefore compare utilisation of healthcare services alone by disability the disability components of health policies and strategic status, as on average, people with disabilities have higher plans have been poorly implemented, if at all.48 For example, healthcare needs. Instead, coverage is a more relevant despite the NSP 2017-2022 identifying the need to measure, meaning whether people obtain the services provide healthcare workers with training on disability, this that they require, including general health care (e.g. the recommendation has not been operationalised, hence proportion of people with HIV on ART, stratified by disability) at mid-term review, healthcare workers still had not and specialist care (e.g. the proportion of people in need received disability-sensitisation training and many lack the or receiving physio-, speech or occupational therapy). Data understanding and skills to provide SRH services to people are also needed on affordability and quality of services for with disabilities.48 people with disabilities. These measures can be collected through disability-specific population-based surveys (e.g. There are, of course, competing demands on limited the World Health Organization’s Model Disability Survey)51,52 healthcare budgets in South Africa, which could explain or by including measures of disability in general health the lack of focus on disability. Disability may be seen as surveys. Inclusion of disability indicators in healthcare something to fund once pressing issues like COVID and records can also help to disaggregate data by disability, HIV are under control. There also appears to be a lack of and uncover patterns and vulnerabilities (e.g. incidence co-ordinated leadership and resources for dedicated people and mortality from COVID among people with disabilities). in the National Department of Health (NDoH) responsible Indicators relevant to disability should be included in for disability. Poor planning on how to implement disability routine monitoring implemented by the NDoH, such as the inclusion, ranging from the NDoH to local facility level, is number and distribution of rehabilitation professionals or the another concern. For instance, a recent Health Systems proportion of healthcare facilities that are accessible. Trust report highlighted that disability and rehabilitation
48 South African Health Review 2020 covered under the Compensation of Occupational Disease Learning from good practice in insurance system. Workability uses a comprehensive care South Africa model including health and social components. It developed an IT support and data management system, which enables the organisation to drive inter-disciplinary collaboration, Interventions to improve healthcare coverage for people targeted patient information and education, communication with disabilities are needed once the relevant barriers and between different stakeholders (e.g. client, employer, issues have been revealed through better data collection. therapist), personalised and cost-effective patient therapy South Africa already has innovative practical examples of plans, and assessment of efficiency, costs and outcomes.34,56 how to drive equity in healthcare for people with disabilities. The system is dependent on access to data, computers, internet connectivity and staff who are computer literate. Interventions can aim to improve individual access, such The extra insurance system is crucial to this model as a as by using SMS messages to make information more funding source, but the technology is also important to 53 accessible to deaf people. There are also examples inspire service delivery under NHI. of access issues tackled at facility level. For instance, a simplified disability audit for SRH services has been These good-practice examples provide ideas on how developed, which assesses access among people with service delivery can be improved for people with disabilities. diverse impairments and whether facilities are linked to Key lessons are that the interventions should address 54 disability, rehabilitation and social services. This tool existing barriers and be developed with or by people with can be used by lay healthcare workers and people with disabilities and dedicated staff on the ground in order to be disabilities themselves, and therefore inspires community effective and acceptable. Solutions should be data-driven, participation and awareness-raising around gaps in access. and recognise the different needs of people with disabilities. Importantly, they should be adequately resourced, in terms However, the barriers to healthcare access are diverse and of both staff and budget, to ensure access. However, these interconnected, and thus more holistic interventions may examples are likely to remain patchy and sparse without a be needed. One such initiative is the Manguzi wheelchair national, NDoH-led imperative that is monitored, enforced 55 seating programme from a rural area in KwaZulu-Natal. It and budgeted, confirming that health services must be illustrates how to increase access to appropriate wheelchairs inclusive of people with disabilities. and mobility training, while overcoming diverse barriers. The key to success is the local rehabilitation team, which forms part of the multidisciplinary hospital service. This team has developed disability training for hospital staff to sensitise Conclusions them to the importance of appropriate and timely wheelchair seating, physical access and mobility training, and attitudinal barriers. Structural barriers were addressed by developing an In South Africa, people with disabilities experience greater institutional wheelchair policy with the hospital that ensures healthcare needs than others, but they also face substantial seating of all eligible patients on the day of assessment (e.g. barriers in accessing services and lack of availability of instituting a purchasing plan for wheelchairs and supplies), disability-specific services. These health system gaps and training staff to repair or reuse equipment and to adjust arise from lack of political will, leadership and funding to interim wheelchairs.34 A ‘portable service’ was developed to implement the robust disability-inclusive policies and plans overcome geographical and financial barriers; this involves that are in place. Lack of data is also a major impediment, as visiting PHC clinics twice a month with wheelchair outreach data are needed to identify what the issues are and which clinics. Social support needs for their clients are also tracked. solutions should be implemented. An increased focus on Mobility training is offered during the outreach visits via people with disabilities is needed urgently if South Africa is trained peer-supporters (i.e. other wheelchair users). The to achieve UHC. choice of peers makes the programme logistically more feasible, but also empowers people with mobility limitations to be part of the solutions concerning them, and ensures that training is locally appropriate.55 One of the important Recommendations enablers of this initiative is the committed local team, which ensures that local planning and implementation considers • Commitments made in the policy and legal framework staff and resource allocations, capacity building, inclusion supporting the inclusion of people with disabilities in of people with disabilities and effective monitoring, tracking UHC must be monitored and enforced by the NDoH, and evaluation. in collaboration with people with disabilities. Strong leadership is needed to guide implementation of Another good-practice example is the Workability model, existing strategies through ensuring allocation of which illustrates how information technology can be utilised funding and resources to disability and rehabilitation to increase effectiveness of services and systematic services within the NDoH and among collaborators (e.g. 56 change. Workability provides rehabilitative care to workers the South African National AIDS Council).
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50 South African Health Review 2020 13. Shisana O, Rehle T, Simbayi, LC, et al. South African 26. South African Department of Social Development. National HIV Prevalence, Incidence and Behaviour Survey, Elements of the financial and economic costs of disability 2012. Cape Town: Health Sciences Research Council; 2014. to households in South Africa. Results from a pilot study. URL: http://www.hsrc.ac.za/en/research-data/view/6871. Johannesburg: DSD, UNICEF; 2016. URL: https://www.unicef. org/southafrica/reports/elements-financial-and-economic- 14. Gómez-Olivé FX, Thorogood M, Bocquier P, et al. Social costs-disability-households-south-africa. conditions and disability related to the mortality of older people in rural South Africa. Int J Epidemiol. 2014;43(5):1531-41. 27. Chetty V, Hanass-Hancock J. The need for a rehabilitation model to address the disparities of public 15. World Health Organization. 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Framing the debate on how to achieve equitable health care for persons with disabilities in South Africa 51 40. Rohleder P, Swartz L, Schneider M, Groce N, Eide AH. 48. South African National AIDS Council. NSP 2017-2022 HIV/AIDS and disability organisations in South Africa. AIDS mid-term review. Pretoria: SANAC; 2020. URL: https://nsp. Care. 2010;22(2):221-7. sanac.org.za/. 41. Hanass-Hancock J, Myezwa H, Carpenter B. Disability 49. World Health Organization. Rehabilitation 2030: A call and living with HIV: Baseline from a cohort of people on long for action. Meeting report. Geneva: WHO; 2017. URL: https:// term ART in South Africa. PloS One. 2015;10(12):e0143936. www.who.int/disabilities/care/Rehab2030MeetingReport_ plain_text_version.pdf. 42. Myezwa H, Hanass-Hancock J, Ajidahun AT, Carpenter B. Disability and health outcomes - from a cohort of 50. Statistics South Africa. Inequality trends in South Africa: people on long-term anti-retroviral therapy. SAHARA J. a multidimensional diagnostic of inequality. Pretoria: StatsSA; 2018;15(1):50-9. 2019. URL: http://www.statssa.gov.za/?p=12744. 43. South African National Department of Social 51. World Health Organization, World Bank. Model Development. White Paper on the Rights of Persons with Disability Survey. Geneva: WHO; 2017. URL: https://www. Disabilities. Pretoria: SANDSD; 2015. URL: https://www. who.int/disabilities/data/model-disability-survey4.pdf?ua=1. gov.za/documents/white-paper-rights-persons-disabilities- 52. World Health Organization, World Bank. Model official-publication-and-gazetting-white-paper. Disability Surveys (MDS). Survey manual. Geneva: WHO; 44. National Planning Commission of South Africa. National 2017. URL: https://apps.who.int/iris/bitstream/hand Development Plan, Vision for 2030. Pretoria: National le/10665/258513/9789241512862-eng.pdf. Planning Commission; 2011. URL: https://www.poa.gov.za/ 53. Haricharan HJ, Heap M, Hacking D, Lau YK. Health news/Documents/NPC%20National%20Development%20 promotion via SMS improves hypertension knowledge for Plan%20Vision%202030%20-lo-res.pdf. deaf South Africans. BMC Public Health. 2017;17(1):663. 45. National Health Insurance Bill. Republic of South Africa; 54. Hanass-Hancock J, Alli F. Closing the gap: Training 2019. URL: https://www.gov.za/documents/national-health- for health care workers and people with disability on the insurance-bill-b-11-2019-6-aug-2019-0000. interrelationship of HIV and disability. Disabil Rehabil. 46. South African National Department of Health. National 2015;37(21):2012-21. Health Insurance for South Africa. Towards Universal Health 55. Manguzi Rehabilitation Department. Rehabilitation Coverage. Pretoria: NDoH; 2017. URL: https://www.gov.za/ Programme. Wheelchairs 2020. URL: http://manguzirehab. documents/national-health-act-national-health-insurance- blogspot.com/p/rehabilitation-programs.html. policy-towards-universal-health-coverage-30. 56. Workability. Workability 2020. URL: https://workability. 47. South African National Department of Health. co.za/. Framework and strategy for disability and rehabilitation services in South Africa 2015-2020. Pretoria: NDoH; 2015.
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52 South African Health Review 2020 REVIEW 6 HRH planning for rehabilitation services: a focus to reduce inter-provincial inequities
Availability of rehabilitation therapists (in Authors Ritika Tiwarii optimum numbers) will play a crucial role in Lieketseng Nedii Usuf Chiktei safeguarding and ensuring universal health coverage for the population of South Africa.
Public sector rehabilitation workforce planning and policy uninsured population statistics were used to generate implementation in South Africa are inadequate, and rehabilitation therapist/population ratios, and to rank the impact of this is reflected in critical human resource provinces and analyse inter-provincial inequity. shortages, maldistribution of these resources, and limited access to quality healthcare services. This chapter estimates A four-pronged strategy is proposed to meet the critical human resource gaps and projects the additional need from shortage of rehabilitation therapists in South Africa. This 2020 to 2030 for three rehabilitation therapist categories, strategy involves the re-introduction of formalised training for namely occupational therapists; speech therapists and profession-specific mid-level workers; formalised training of audiologists; and physiotherapists. An equity-based health community-based rehabilitation workers done collaboratively workforce planning approach was used to reduce existing by departments of health, social development and education; inter-provincial inequities, with a view to attaining horizontal the creation of posts and improved deployment of trained equity by 2030. To keep estimates realistic, two scenarios professionals; and strengthening and expansion of the were created, one based on past historical trends, and the national training capacity for rehabilitation therapists through other assuming zero per cent growth for the respective widening access and increasing the number of enrolments in professions in the public sector. The 2019 Personnel higher education institutions. and Salary System (PERSAL) database and South African
i Department of Global Health, Division of Health Systems and Public Health, Stellenbosch University ii Centre for Disability & Rehabilitation Studies, Department of Global Health, Stellenbosch University
Click to navigate HRH planning for rehabilitation services: a focus to reduce inter-provincialto inequitiesContents 53 associated with impairment, adds to the disability burden, and Introduction requires rehabilitation support.6 Persons with disabilities are defined by the United Nations Convention on the Rights of Public domain rehabilitation workforce planning in South Persons with Disabilities (UN CRPD) as “those who have long- Africa is inadequate,1,2 and the impact of this is reflected term physical, mental, intellectual or sensory impairments in critical shortages of human resources, maldistribution which in interaction with various barriers may hinder their full of these resources, and inequitable access to quality and effective participation in society on an equal basis with 7 healthcare services. Previous health workforce projections others”. It has been estimated that 15% of the total population for South Africa’s public sector needs generated in 20113 experience some form of disability and are in need of did not specifically address the provision of rehabilitation rehabilitation services, with the majority of this population 4 services for persons with disabilities. The World Report located in the Global South. on Disability drew attention to the inadequacy of the rehabilitation workforce globally and highlighted that many Within South Africa, the paucity of rehabilitation workers has countries do not include rehabilitation in their national been highlighted as a barrier in implementing disability and planning and reviews of human resources for health (HRH).4 rehabilitation plans, and as hindering improved access to these services.1,8-11 The World Health Organization (WHO) report, Rehabilitation 2030: A Call for Action, recognised the growing need Disability rates in the country have been reported to for rehabilitation worldwide, with demand for services far vary from 4.4% to 7.7% and 16.1%. Table 1 below provides exceeding the availability of human resources.5 A global an overview of disability measures, disability rates, and study on supply of and need for HRH-related rehabilitation domains of functioning. services showed that 92% of the global burden of disease is
Table 1: Disability measures, disability rates, and domains of functioning
Six domains of functioning:12 Seeing Hearing Disability measure Disability rates in South Africa Communicating Walking Remembering and Self-care
Disability measure 1 4.4% Measure 1 is a broad disability measure that includes all persons aged five years and older who reported "some difficulty" in any of the domains of functioning, and "a lot of difficulty" and "cannot do at all" in any of the six domains of functioning.
Disability measure 2 7.7% Measure 2 refers to the UN disability index that includes all persons aged five years and older who reported "some difficulty" in at least two domains of functioning, and "a lot difficulty" and "cannot do at all" in any of the six domains of functioning.
Disability measure 3 16.1% Measure 3 is a severe disability measure that includes all persons aged five years and older who reported "a lot of difficulty" and "cannot do at all" in any of the six domains of functioning.
In 2018, the UN published a flagship report focused on Another important category of health worker providing realisation of the Sustainable Development Goals by, for, rehabilitation services within the broader team, is the and with persons with disabilities. It was noted that access mid-level worker (MLW). MLWs generally receive fewer to rehabilitation services remains a major challenge, with and shorter periods of training and have a narrower scope more than 50% of persons with disabilities having an unmet of practice than professionally qualified rehabilitation need for rehabilitation services.13 therapists (RTs). There are both discipline-specific MLWs and generic MLWs. In contrast to community health workers, MLWs have a formal certificate/accreditation through their
54 South African Health Review 2020 countries’ licensing bodies.14 It has been observed that population ratios), the shortfall was estimated, and strategies MLWs improve access to and coverage of health services, were identified for correcting the course of action.22 including rehabilitation.14 Evidence suggests that MLWs play a role in strengthening access to health services.15,16 Setting benchmarks Since the analysis focused mainly on the public sector’s In 2015, the National Framework and Strategy for Disability core rehabilitation workforce, it was assumed that the and Rehabilitation (FSDR) was developed in South Africa to public sector user population would be proportional to the integrate disability and rehabilitation services within priority population without health insurance. As estimated in the healthcare programmes at all levels of the system.17 One of 2018 National General Household Survey, only 16.5% of the the goals of this framework is to develop and implement an national population have some health insurance cover.12 HRH plan for disability and rehabilitation services. Ideally, Thus it was estimated that 83.5% of the population does the core rehabilitation team should include a physiotherapist not have health insurance and relies primarily on the public (PT), an occupational therapist (OT), a speech therapist (ST), sector health service. The Thembisa model was used to an audiologist, a medical orthotist and prosthetist (MOP), and make population estimates as it is the mathematical model related MLWs.18 Comprehensive rehabilitation services should for the South African HIV epidemic.23 be inclusive of both generic and discipline-specific MLWs. However, PTs, OTs, and speech therapists and audiologists HRH norms were available from different sources, as well (STAs) are the most common available providers of as HRH density per population for different countries.24,25 rehabilitation services in South African healthcare settings.18 However, these data are not standardised according to lower-middle-income countries, or benchmarked on The FSDR 2015-2020 shows a vacancy rate of 22-27% the basis of RT per 100 000 population (as in different in rehabilitation fields in the public sector, with a total of populations in South Africa). 1 213 posts filled by OTs, 1 256 by PTs, and 596 by STAs. There is also an unequal distribution of these professional The nine provinces were ranked and divided into three categories across provinces.17 Apart from limited funded posts tertiles. available, other studies show poor retention or absorption of these professionals in the public sector.19,20 Human resource Growth scenarios planning and priority setting for rehabilitation services in In order to make future projections, growth scenarios were South Africa are in need of considerable improvement. Given developed on the basis of historical trends. The following the persisting quadruple burden of disease with associated two scenarios were created: impairments, and an increasing ageing population, there is a need to redistribute funding in order to increase rehabilitation The historical trend scenario assumes that the average staff in communities where rehabilitation is most needed. growth rate experienced in the three years from 2017 to 2019 will continue to 2030. The annual growth in number The aim of this chapter is to estimate gaps and project of rehabilitation practitioners was extrapolated using an additional need from 2020 to 2030 for the three RT advanced Microsoft Excel model from the year 2020 to categories (PTs, OTs, and STAs) in the public sector using 2030, applying exponential smoothing. The exponential- an equity-based HRH planning approach to reduce existing smoothing technique utilises a time-series forecasting inter-provincial inequities. A multi-pronged strategy was method for univariate data that can be extended to support used to accomplish this. Ethical approval and a request for data with a systematic trend or seasonal component.26 waiver of informed consent for this retrospective study was obtained from the Stellenbosch University Health Research The no-growth scenario assumes that at 2019 levels, the Ethics Committee (HREC Reference No: X19/03/007). number of RTs in each category would be constant to 2030. As such, a growth of 0% per annum was assumed over the period from 2019 to 2030.
HRH projections The future gap was estimated for each RT category using these two growth scenarios compared with four identified Evaluating the current stock of RTs equity-targets (ratios). The current stock of the three core RT categories employed in the public sector was evaluated using the Personnel and Equity targets Salary System (PERSAL) database.21 The PERSAL data were In order to reduce the existing HRH inequity between South obtained from the National Treasury aggregated health African provinces, four target ratios were created focused worker headcounts for each quarter from 2002 to 2019. The on attaining horizontal equity by 2030 (Figure 1): data were used to estimate whether the current stock of • Status quo: RT population ratios are maintained at 2019 RTs was sufficient for national needs. The (wo)manpower-to- levels in each province. population ratio approach was used in this exercise (which • Sixth ranked province: RT population ratios are depends on the supply, distribution, and health workforce-to- improved in the three last provinces in the last tertile
HRH planning for rehabilitation services: a focus to reduce inter-provincial inequities 55 (ninth, eighth and seventh rank) to the level of the sixth level of the third ranked province, and ratios in the top ranked province, and ratios in the top six provinces are three provinces are maintained at 2019 levels. maintained at 2019 levels. • International benchmark: RT population ratios for all nine • Third ranked province: RT population ratios are improved provinces are improved to the identified international in the six last provinces, i.e. in the last and middle tertile benchmark level. (ninth, eighth, seventh, sixth, fifth and fourth rank) to the
Figure 1: Equity targets set up to reduce existing inter-provincial inequities
Status quo 6th rank province 3d rank province International (SQ) (sixth RP) (third RP) benchmark (IB)
Province 1 Province 1 Province 1 Province 1
Province 2 Province 2 Province 2 Province 2
First tertile Province 3 Province 3 Province 3 Province 3
Province 4 Province 4 Province 4 Province 4
Province 5 Province 5 Province 5 Province 5
Province 6 Province 6 Province 6 Province 6 Middle tertile
Province 7 Province 7 Province 7 Province 7
Province 8 Province 8 Province 8 Province 8
Last tertile Last Province 9 Province 9 Province 9 Province 9 Up-scaling last tertile upto 6th RP (4/9) Up-scaling last tertile upto 6th Up-scaling last and middle tertile upto 3rd RP (7/9)
Up-scaling IB Up-scaling all nine provinces upto IB Meeting international benchmarks Highest RT:100 000 Lowest RT:100 000 population ratio population ratio
Gap estimation Workforce projections for the historical-trend and no-growth Key findings scenarios were compared with four different equity target ratios based mainly on improving the rehabilitation worker Current stock of rehabilitation workers densities in the lowest-scoring provinces. The shortfall and In South Africa, there were 3 513 RTs in 2019, as per the additional public-sector budget were then forecast for the extracted headcounts of public sector employees for OTs, three RT categories required to up-scale the number of health PTs and STAs (Table 2). Of these, PTs (42.8%) constitute professionals and achieve the equity targets, i.e. from the last most of the workforce, followed by OTs (36.4%) and STAs tertile to the middle tertile and ultimately to the first tertile. (20.8%). The analyses were done individually for the three RT categories identified above and then individually per category for each province before being aggregated to produce the national totals.
56 South African Health Review 2020 Table 2: South African public sector RTs (select categories), national numbers and density per 100 000 public sector population, 2019
Rehabilitation therapists Numbers Percentage National density
Physiotherapists 1 504 42.8 3.10
Occupational therapists 1 279 36.4 2.64
Speech therapists & audiologists 730 20.8 1.51
Total rehabilitation therapists 3 513 100 7.25
Source: PERSAL.21
The national density of OTs, STAs and PTs was estimated to Historical trends be 2.64, 1.51 and 3.10 respectively per 100 000 public health Figure 2 shows the ratio trends for the three RT categories sector population (Table 2). Overall, there are 7.25 RTs per over the period 2002-2019. 100 000 public sector population.
Figure 2: Historical trends in public sector RT ratios per 100 000 uninsured population, 2002-2019
3.50 3.10 2.95 3.00 2.99 3.00 2.80 2.80 2.92 2.67 2.48 2.90 2.44 2.80 2.50 2.31 2.79 2.69 2.73 2.21 2.52 2.64 2.08 1.93 2.45 OT 1.82 1.83 2.15 2.00 1.70 2.03 1.92 1.93 STA 1.80 1.50 1.23 1.64 1.57 1.52 1.50 1.50 1.51 population 1.49 1.47 PT 1.46 1.31 1.00 1.24 1.11 1.04 1.11 0.97 0.82 0.87 0.66 0.69 0.74 0.50 0.55 0.61
Number per 100 000 uninsured 0.34 0.00 2011 2017 2013 2014 2018 2012 2015 2016 2019 2010 2007 2003 2004 2008 2002 2005 2006 2009 Year
Source: PERSAL.21 Population: Calculated using the Thembisa model23 and the StatsSA General Household Survey.12
Overall, there have been improvements in public sector Staffing ratios staff-to-population ratios for the three RT categories over The availability of RTs per 100 000 public sector population the last two decades. These results indicate that the number was estimated province wide as well as nationally. Of the of RTs employed in the public sector has been increasing at three professionals, PTs had the highest ratios at 3.10 per a higher rate than the population growth rate. For example, 100 000 public sector population, followed by OTs at 2.64 the number of public sector OTs increased at an average of and STAs at 1.51 per 100 000 public sector population 11.1% annually, STAs at a rate of 25.4% per annum, and PTs (Table 3). at 12.1% per annum during the period 2002-2019, while the public sector population increased by 1.5% annually over the same time period.
HRH planning for rehabilitation services: a focus to reduce inter-provincial inequities 57 Table 3: Public sector RTs, inter-provincial variation in staffing ratios per 100 000 public sector population, 2019
RT category National average First RP Third RP Sixth RP Ninth RP
Occupational therapists 2.64 NC 5.88 FS 3.22 MP 2.34 KZN 1.94
Speech therapists & 1.51 NC 2.99 MP 1.72 LP 1.51 NW 0.86 audiologists
Physiotherapists 3.10 NC 6.29 FS 3.38 NW 2.98 MP 2.63
Source: PERSAL.21 Population: Calculated using the Thembisa model23 and the StatsSA General Household Survey.12 FS = Free State; KZN = KwaZulu-Natal; LP = Limpopo province; MP = Mpumalanga province; NP = Northern Province; NW = North West; RP = ranked province.
The provinces were ranked on the basis of the staffing norms; Projections for national public sector RTs the Northern Cape ranked first, with the highest staffing ratios Using the historical trends, the number of national public in the public sector. It has a small population size and fewer sector disability and rehabilitation therapists was projected up RTs in the private sector than other provinces. KwaZulu-Natal to 2030. Using this scenario, it was assumed that the average ranked ninth, possibly because of its large population and the growth rate experienced in the three years from 2017 to 2019 presence of a more dominant private sector.1 would continue to 2030. The results are shown in Table 4.
Table 4: Projected numbers of South African public sector RTs, a historical trend scenario for 2019-2030
Year Average annual RT category compound 2019 2020 2021 2022 2023 2024 2025 2026 2027 2028 2029 2030 growth
Occupational 1 279 1 297 1 309 1 320 1 332 1 343 1 355 1 366 1 378 1 389 1 400 1 412 0.90% therapists (N)
Speech therapists & 730 753 775 796 818 840 861 883 905 926 948 969 2.61% audiologists (N)
Physiotherapists (N) 1 504 1 545 1 591 1 636 1 682 1 728 1 774 1 819 1 865 1 911 1 957 2 003 2.64%
Total 3 513 3 595 3 675 3 752 3 832 3 911 3 990 4 068 4 148 4 226 4 305 4 384 2.03%
Source: PERSAL.21 Population: Calculated using the Thembisa model23 and the StatsSA General Household Survey.12
In the alternative no-growth scenario, it was assumed that Target RT ratios the number of RTs in each category would be constant at Table 5 shows the equity targets set up to reduce existing 2019 levels to 2030, thus a growth of 0% per annum was inter-provincial inequities, and the international benchmarks predicted over the period 2019-2030. used to compare South Africa’s RTs.
58 South African Health Review 2020 Table 5: RT target ratios per 100 000 uninsured population to be achieved in South Africa by 2030
Equity target ratios RT category International benchmark level Sixth RP Third RP
Occupational therapists 2.34 3.22 7527
Speech therapists & audiologists 1.51 1.72 428
Physiotherapists 2.98 3.38 1029
RP = ranked province.
Number of RTs needed to achieve target ratios would be required, while achieving the third RP target would by 2030 require a 1 214 increase. Meeting international benchmarks The gap in RTs was estimated for all categories in each of would require 42 524 RTs. the two growth scenarios, compared with each of the four identified target ratios (Table 6). The numbers denote the The number of RTs required was slightly lower under the number of additional RTs required by 2030 to achieve the more optimistic no-growth scenario (as the growth has equity target ratios (horizontal equity). shown both positive and negative trends over the years). According to this scenario, an additional 425 RTs need to Using an historical trends scenario, an additional 743 RTs be hired in the public sector to improve inter-provincial would be required in total for the three categories to equity and achieve the sixth RP and third RP target, maintain the 2019 ratios in each province. To increase ratios where all provinces would have at least 623 and 1 216 RTs in the last three provinces (sixth RP), an additional 837 RTs respectively.
Table 6: National RT gap in 2030, using two growth scenarios and four target ratios
RT gap in 2030 on the basis of future growth Target ratios scenarios (N) RT category (per 100 000 uninsured population) Historical trend No-growth scenario scenario
Occupational therapists Using current ratios for Status quo 391 161 each province
2.34 Sixth RP 449 233
3.22 Third RP 696 580
75 International 37 881 37 981 benchmark
Speech therapists & Using current ratios for Status quo 119 72 audiologists each province
1.52 Sixth RP 145 141
1.72 Third RP 194 245
4 Inernational 1 206 1 384 benchmark
Physiotherapists Using current ratios for Status quo 233 192 each province
2.98 Sixth RP 243 249
3.38 Third RP 324 391
10 International 3 436 3 802 benchmark
HRH planning for rehabilitation services: a focus to reduce inter-provincial inequities 59 RT gap in 2030 on the basis of future growth Target ratios scenarios (N) RT category (per 100 000 uninsured population) Historical trend No-growth scenario scenario
Total RTs needed Status quo 743 425
Sixth RP 837 623
Third RP 1 214 1 216
International benchmark 42 523 43 167
RP = ranked province.
between provincial disability prevalence and the human Discussion resources needed would be a critical step in determining how much additional training is needed. Alignment means establishing the number of requisite staff needed for the Variation, inaccuracies, and underreporting of disability current disability prevalence in each province, and using data in South Africa and globally remain a major challenge these data to guide training for new recruits to bridge in planning for rehabilitation services. These challenges service gaps. led to differences in the reported prevalence of disability estimates in South Africa. The quadruple burden of disease How can this health workforce be scaled up to in South Africa is associated with a number of impairments, progressively expand coverage over time? which add to the disability burden.17,30,31 The associated When population density is compared with growth in major burden of disease impairments includes and is not numbers of the three professions (PERSAL headcounts), limited to maternal and child health (birth trauma, cerebral steady growth can be observed over a period. For example, palsy, stunting, developmental delay, mental illness, visual until 2012, the three professions continued to show positive and hearing impairment); HIV and tuberculosis (neurological growth. However, from 2016 onwards, growth in the number impairments, dementia, mental illness, tuberculosis of the of professionals in the three categories started declining in spine, joint disease, pain and fatigue, antiretroviral side- the public sector. Consistent with the literature, this reduced effects, ototoxic side-effects of tuberculosis medication); growth in numbers could be attributed to poor recruitment, trauma and violence (spinal cord injury, traumatic brain absorption, and retention of newly graduating healthcare injury, amputation, orthopedic complications, mental illness); professionals post community service in the public health and non-communicable disease (stroke, diabetic retinopathy, sector.20 A study conducted by the Academy of Science of neuropathies, amputation, mental illness, visual loss).30 All South Africa (ASSAf) in 2018,20 emphasised a retention gap these medical conditions contribute significantly to the of 77.6% for OTs, 81.2% for STAs and 83.1% for PTs. Thus disability load as they require rehabilitation, and highlight there is a need for equity-based HRH planning to recruit, the overwhelming need for more RTs in South Africa. deploy, and retain right numbers of RTs in the provinces facing critical shortages. To address the current shortage of RTs, the following three guiding questions are relevant. How can South Africa prioritise, deploy, and retain RTs, who help to support universal health coverage and ensure Which RTs will be required to ensure effective coverage of access to care for all? an agreed-upon package of healthcare benefits? There is a need to assess inter-provincial disparities in RT It is clear that there is a need to scale up the core team density. For instance, provinces with the lowest availability of RTs as they largely shoulder the responsibility for of RTs in the public sector are KwaZulu-Natal (lowest rehabilitation. This upscaling is especially critical as density of OTs), North West (lowest density of STAs), and rehabilitation incorporates other components of health Mpumalanga (lowest density of PTs) compared with the care in practice (prevention, promotion, education, and other six provinces in the country. advocacy). In total, there are around 3 500 RTs registered as OTs, STAs, and PTs in South Africa. The World Report Further research needs to be done to determine why on Disability provides data from four Southern African rehabilitation professionals are unable or unwilling to countries, and indicates that only 26-55% of people receive work in these provinces, and to establish reasons for the the medical rehabilitation they need.4 South Africa’s role discrepancies between the public and private sectors. To here is critical as the country not only provides trained RTs alleviate shortages, the private and public sectors should to cater for local needs but provides therapists for some be integrated, and an assessment needs to be done of the other African countries as well. Furthermore, alignment inter-provincial discrepancies in remuneration being offered
60 South African Health Review 2020 to these professionals. If the HRH national average for on technology and investigations in their clinical practice.35 public sector RTs (per 100 000 public sector population) is Furthermore, those who often face financial and transport compared with other countries, then the figures show that barriers and who cannot afford to see a private professional South African ratios are 32 times lower than the international would benefit greatly. benchmark for OTs, 2.5 times lower for STAs, and 3.4 times lower for PTs. In the long term (10-15 years), policy makers should plan, create posts, and deploy trained professionals (OTs, STAs and PTs) as per the equity-based HRH forecasting exercise undertaken in this study. However, this may have budgetary Conclusion implications, including planning for training institutions to increase the numbers of trained rehabilitation health workers to respond to the need if necessary. South Africa has an inadequate supply of RTs to meet the needs of the public health system. There is a need to A fourth strategy would be to build the national training train greater numbers of RTs, and to reduce existing inter- capacity of rehabilitation professionals. This capacity provincial inequities in number of RTs serving in the public building implies that academic institutions of higher learning sector. Availability of RTs (in optimum numbers) will play a offering various disability and rehabilitation courses across crucial role in safeguarding and ensuring universal health various provinces ought to increase intake numbers in order coverage for the population of South Africa. to recruit, enrol and produce more prospective rehabilitation graduates.4 There is a compelling need to revise the curriculum, with a sharper focus on interdisciplinary rehabilitation professional education. Such training needs to Recommendations be context specific to meet the needs of the majority of the population. A four-pronged strategy is proposed to meet the shortage of RTs. A step-by-step approach has been suggested based Linked to the above, there is a need to plan a coordinated on duration (short, medium and long term) and availability of intersectoral collaboration between the health, education, resources, and building overall national training capacity. and social development sectors, and to engage these sectors to address the health needs of South Africa’s In the short term (2-5 years), one way of addressing population in a collaborative manner. A recent study9 rehabilitation HRH cost-effectively is to re-open training noted that the number of OTs increased at a rate of for profession-specific MLWs in higher education 7.1% from 2002 to 2018. Although this growth exceeds institutions. Such MLWs can be trained as RTs, with basic that of the population, the density of OTs per 100 000 generic training in a range of disciplines (with skills and population continues to be substantially lower than global knowledge in mobility, communication, mental health, play, recommendations. This shortage affirms the urgent need learning, work, and most importantly, empowerment), or to implement task-shifting to both profession-specific and as profession-specific assistants/technicians providing community-based MLWs in order to meet the growing need rehabilitation services under supervision.1,32,33 This category for rehabilitation services. of workers would be helpful in reducing the workload, and would enable task-shifting from current therapists providing Acknowledgements rehabilitation services. The authors would like to acknowledge Dr Gail Andrews from the National Department of Health who commissioned In the medium term (5-10 years), training, absorption in the the Ministerial Task Team (MTT) on HRH, and Professor public sector, and continuing professional development Laetitia Rispel, chair of the MTT on HRH, for leading the 2030 of community-based rehabilitation workers should be HRH Strategy for South Africa.36 The research work in this developed and supported in a collaborative partnership chapter is drawn from the discussions and inputs provided across the health, social development, and education during the MTT workstream meetings. The chapter uses sectors. With their specialised skills and experience of the forecasting methodology that emerged during the MTT working at household and community levels, plus training meetings, although the authors forecasted the need only for in basic interdisciplinary rehabilitation services, these three categories of rehabilitation health workers, and made workers could work across traditional health and social extrapolations up to 2030 based on four equity targets. The service boundaries to provide basic rehabilitation in authors are solely responsible for the contents of the chapter, the community as needed.32,34 These community-based including any errors or omissions that may arise from it. rehabilitation workers would help in expanding reach and addressing the inequity in access due to geographical/ spatial barriers in remote and rural contexts. Couper et al. assert that investment in MLW training is worthwhile as these workers are more likely to be retained in underserved areas, their training is shorter, and they are less dependent
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HRH planning for rehabilitation services: a focus to reduce inter-provincial inequities 63 REVIEW 7 Social security benefits and disability assessment in the working-age population in South Africa
Accommodating persons with disabilities Authors Blanche Andrewsi in the workforce increases self-sufficiency Shahieda Adamsii and decreases dependence on social security benefits. Increased labour force participation adds to the tax base.
Evaluation of disability in the working-age population is A framework for disability assessment is provided. It key in accessing benefits in South Africa’s social security aligns with the United Nations Convention on the Rights framework. A common requirement across specific institutions of Persons with Disabilities, and facilitates integration is medical assessment of impairment and/or disability. Medical of persons with disabilities into society. Social security assessments are required to obtain social security benefits, reforms, implementation of National Health Insurance namely social assistance (disability grants), mandatory social and its integration into the social security framework, a insurance (Unemployment Insurance Fund, Road Accident Fund, multidisciplinary team approach, monitoring and evaluation, and Workers Compensation), and voluntary social insurance training and the development of evidence-based guidelines, benefits. These benefits help to alleviate the challenges and addressing barriers would facilitate successful hindering affected individuals from equal participation in society. implementation of the framework. In addition, these Limited literature is available on medical assessments for social recommendations would enhance the quality of medical security benefits in the South African context. assessments done for disability benefits.
Public- and private-sector secondary information and data were used to discuss the current South African legislative and social security landscape and medical-assessment mechanisms.
i Medical Division, Sanlam ii Division of Occupational Medicine, University of Cape Town
Click to navigate Social security benefits and disability assessment in the working-age population in toSouth Contents Africa 65 disabilities into mainstream society. This has not always Introduction been achieved in practice.4
A standard requirement for the evaluation of disability in The United Nations Convention on the Rights of Persons the working-age (15-64 years) population in South Africa with Disabilities (UN CRPD), ratified by South Africa in is a medical assessment of impairment and/or disability. 2007, recognises disability as “an evolving concept” that Although often used interchangeably, impairment and results from the interaction between persons with physical, disability assessments are two distinct entities. Impairment psychosocial, intellectual, neurological and/or sensory relates to a problem in body function or structure, such impairments, and barriers that hinder their full and effective as a significant deviation or loss. In contrast, disability is participation in society on an equal basis with others. an umbrella term for impairments, activity limitations, and Barriers may be social, psychological/attitudinal or structural/ participation restrictions.1 environmental. Disability is therefore contextual, and for a disability to exist, an impairment must be present together 5-7 The legal definition of disability is an important with barriers to full participation in society. component of the medical assessment and its breadth and interpretation guide the outcome of the disability This chapter explores the medical assessment of disability in assessment.2,3 The legal framework should function to the working-age population across the South African social promote independence and integration of persons with security framework. Disability benefits are provided for and administered by various Acts and Regulations (Table 1).
Table 1: Legislation governing payment of disability benefits in South Africa, 2020
Position on disability Act Relevance Definition of disability inclusion
Promotion of Equality Prohibits unfair discrimination None Facilitates inclusion by and Prevention of Unfair on the grounds of disability preventing discrimination Discrimination Act and provides for the and advocating for (No. 4 of 2000)8 promotion of equality with accommodation of the needs regard to disability. of disabled persons.
Compensation for Provides for compensation “Disablement" means Lacks focus on rehabilitation Occupational Injuries and for disablement caused temporary partial and reskilling of Diseases Act by occupational injuries or disablement, temporary total occupationally injured or (No. 130 of 1993)9 diseases. disablement, permanent diseased workers to enable disablement or serious a return to functionality and disfigurement, as the case successful reintegration into may be. the workforce.
“Permanent disablement” means the permanent inability of such employee to perform any work as a result of an accident or occupational disease for which compensation is payable.
South African Social Security Provides for establishment None Provides a form of social Agency Act of the South African security to disabled persons, (No. 9 of 2004)10 Social Security Agency contingent on them not being (SASSA) as an agent for the fit for work in the open labour administration and payment market. This counteracts the of disability grants. inclusion of persons with disabilities in the workforce.
66 South African Health Review 2020 Position on disability Act Relevance Definition of disability inclusion
Social Assistance Act Regulates the assessment “Disabled person” means Complex and lengthy (No. 13 of 2004)11 and payment of disability a person contemplated in process. The application of a grants. section 9(b) of the Act. means test results in 35% of those with severe functional 9(b) A person is…eligible limitation not being in receipt for a disability grant if he of a disability grant. or she (b) is, owing to a physical or mental disability, unfit to obtain by virtue of any service, employment or profession the means needed to enable him or her to provide for his or her maintenance.
Labour Relations Act Provides for fair labour None Places greater onus on (No. 66 of 1995)12 practices and guidance on employer accommodation the management of incapacity of workers afflicted by due to ill health or injury. occupational injury or disease, allowing for reintegration of disabled workers into the workforce; the Act also allows for termination of employment of incapacitated workers after following due process.
Employment Equity Act Aims to promote employment Disability relates to a long- Requires disclosure of (No. 55 of 1998)13 equity and eliminate unfair term or recurring physical disability for workplace discrimination against or mental impairment that accommodation; however, • Code of Good Practice on persons with disabilities in the substantially limits prospects fear of stigma and potential Employment of Persons workplace. of entry to or advancement in job losses often impede with Disabilities. employment. disclosure.
Unemployment Insurance Act Provides for payment of None Allows for payment of (No. 63 of 2001)14 temporary unemployment benefits to workers who are benefits due to illness. temporarily or permanently disabled.
Road Accident Fund Act Pays compensation for None No imperative for inclusion (No. 56 of 1996)15 personal loss or damage of disability, rather aims to wrongfully caused by driving compensate for impairment of a motor vehicle, including and loss of income. loss of income and medical expenses.
Income Tax Act Relates to tax and disability. Disability means a moderate Certain tax benefits are (No. 58 of 1962)16 to severe limitation of any applicable to persons who person's ability to function or meet the Act’s definition of perform daily activities as a disability. result of a physical, sensory, communication, intellectual Allows for payment of or mental impairment, lasting retirement annuities before more than a year, and the prescribed retirement age diagnosed by a duly if the fund member is found registered medical to be totally and permanently practitioner in accordance disabled. with criteria prescribed by the Commissioner.
Social security benefits and disability assessment in the working-age population in South Africa 67 The South African social security Social security challenges and framework reforms
The South African social security (SS) system includes social Following recommendations by the Taylor Committee into assistance, mandatory social insurance, and voluntary a Social Security System for South Africa in 2002, there insurance (Figure 1). In each of these cases, access to a have been numerous discussions on SS reforms for the disability-related benefit or compensation requires medical country.18-20 Key challenges and the recommended reforms assessment of impairment and/or disability. are outlined in Table 2.17 Major reforms proposed include the establishment of a National Social Security Fund (NSSF) requiring mandatory contributions to allow disability benefits for the entire workforce, and a single consolidated government department focusing on SS and the alignment of National Health Insurance (NHI) with SS.17,19
Figure 1: South Africa's current social security system
PILLAR 1 PILLAR 2 PILLAR 3 Social Assistance Social Insurance Voluntary (Non-contributory – (Contributory – Mandatory) (Supplementary poverty alleviation) Arrangements) Old Age Unemployment Pension and Insurance Fund Provident Funds Disability (UIF) Retirement Annuities Child Support Compensation Group Life Schemes Foster Care Funds Collective Investment Care Dependecy Road Accident Funds; Long-term Fund (RAF) War Veterans savings and endowment funds and other Social Relief of discretionary savings Distress and insurance products
Source: Department of Social Development, 2017.17
68 South African Health Review 2020 Table 2: Current social security challenges and reforms
Social security type Challenges Reform proposal
Pillar 1 – Social assistance
Unemployed adults who do not qualify for a Support in the form of: phased-in income disability grant or social/voluntary insurance support, further education and training, and are excluded. youth employment programmes.
High unemployment rate.
Pillar 2 – Social insurance
Absence of mandatory social insurance that Establish a government-run National Social provides disability benefits to the entire Security Fund (NSSF) to ensure a minimum workforce. The self-employed, those in the level of protection for the entire workforce. informal sector or not part of a private group scheme must rely on individual cover. An estimated four million workers are without disability cover.
Healthcare Less than 20% of the population belong to Establish NHI and align social security with medical schemes. NHI once implemented.
UIF (Unemployment Insurance A large proportion of the workforce are Expand current UIF services. Fund) excluded, and benefits are limited to eight months.
RAF (Road Accident Fund) Fault-based compensation that often leads to Implement a revised business model and protracted claims settlement. The system is Road Accident Benefit Scheme (RABS). expensive and unfair.
Pillar 3 - Voluntary insurance
High administration costs and charges, Regulatory reform of pensions and life early withdrawals and non-preservation, insurance industry, including more pro-active governance structures. and comprehensive supervision to ensure that appropriate measures are put in place to safeguard member’s contributions and benefits and alignment with the NSSF.
Institutional considerations
Fragmented social security Social security policies are spread across Improve policy coordination. policy-making and delivery several government departments.
Potential for high administrative costs and Common interface and shared infrastructure. fraudulent claims.
Lack of co-ordination in design and Align benefits and assessments, standardise administration of disability benefits. disability assessments.
Lack of coherence among The different disability benefits have different Common interface and shared infrastructure. social security arrangements access points and there is no co-ordination.
Source: Department of Social Development 2017, & Inter-departmental Task Team on Social Security and Retirement Reform 2012.17,19
Social security benefits and disability assessment in the working-age population in South Africa 69 a registered medical practitioner. Although the law does Disability-assessment not explicitly prescribe practitioner training, it is an implicit mechanisms across the social requirement that the assessing medical practitioner has successfully completed AMA Guide 6th edition training.27 security pillars The involvement of a multidisciplinary assessment team is not prescribed; however, the medical practitioner may These medical assessments form the gateway to accessing submit supporting medical evidence, such as assessments the relevant SS benefits. by specialists and allied health professionals. If the claim is declined, the RAF is required to provide reasons and 28 Social assistance the claimant has up to 90 days to lodge an objection. The dispute is referred to an appeal tribunal consisting of Disability grant three suitably qualified independent medical practitioners. This is a means-tested grant that requires a medical Legal input may be obtained based on the opinion of the assessment by a SASSA-approved medical practitioner members of the appeal tribunal.26 The tribunal forms a at a dedicated medical facility within the public health majority decision, and its findings are considered binding. sector. Applicants can either apply for a temporary grant The HPCSA 2018|19 Annual Report noted that 4 788 or permanent grant, subject to review every 2-5 years. disputes were received by the appeals tribunal for the year The decision for grant eligibility is usually made by under review.29 the assessing medical practitioner using the SASSA Guidelines for the Medical Assessment of Disability for If the claim is approved, then the RAF covers the costs Social Assistance which assigns a percentage incapacity associated with the assessment, otherwise the claimant is score based on clinical findings and social factors.21 No responsible for the costs.28 Due to the specialised nature of specific qualification is required to work as a SASSA- these evaluations, individuals seeking medical assessment approved medical officer; however, in-house training for the purpose of RAF compensation are mostly limited is provided. Training is administrative and consists of a to private-sector providers. This may involve out-of-pocket four-hour initial session and two hours annually, and does expenditure, and individuals with severe disabilities not cover the medical assessment. The time allowed for and/or financial constraints may have limited access to such assessments is insufficient, and as a result, decisions assessments. The RAF 4 must be submitted within a five- around disability assessment outcomes are sometimes year timeframe. The RAF is required to provide feedback to arbitrary. It is suggested that persons with mild or less the claimant within 90 days.30 obvious disabilities are less likely to receive benefits. No quality-control mechanisms exist for these assessments, The following areas of concern have been noted regarding and finding enough medical officers willing to perform the medical-assessment process.26 these examinations, particularly in remote areas, has been • Interrater variability in the AMA assessments submitted. challenging. The many steps involved in the application and • Incorrect application of the AMA Guides in assessments, assessment process often act as an obstacle to individuals leading to incorrect claims decisions. with profound disabilities and are likely exclude a significant • Inadequacy of the AMA Guides to accurately assess number of eligible applicants from applying for the grant.21,22 serious injury as a stand-alone tool due to its failure “to take the circumstances of the third party into account Social insurance effectively”. Road Accident Fund • Sub-par narrative test reports. Under RAF legislation, a medical evaluation is required • Invalid claims and rejections. to inform payment of general damages (non-pecuniary loss); this is paid as compensation for “loss of amenities Unemployment Insurance Fund of life, pain and suffering, disability and disfigurement to The UIF provides a temporary sickness benefit of up to one persons who have suffered bodily injury in a motor vehicle year for eligible employees.31 Benefits are payable for an accident”.23 The RAF restricts liability to circumstances illness lasting longer than 14 days. UIF benefits are normally where a “serious injury” has been sustained. This is defined paid out if administrative requirements are met and relevant as an injury not on the list of non-serious injuries and either information is provided by the medical practitioner. Little is resulting in 30% or greater whole-person impairment known about the assessment procedure of claims received. using the American Medical Association (AMA) Guides or meeting the criteria of the narrative test.24 The Health Compensation Fund Professions Council of South Africa (HPCSA) Appeal Tribunal Eligible workers are entitled to paid sick leave, medical has published a guideline for the performance, structure, care, and temporary and permanent disability benefits content and criteria of the narrative test.25 Implementation of in the event of an occupational injury or diagnosis of an this guideline is not legislated.26 occupational disease. The reporting process requires medical evaluation (public or private) and submission of To lodge a claim for general damages, a “RAF 4 - Serious specific forms to the Compensation Commissioner for Injury Assessment Report” form must be completed by adjudication. Claim acceptance results in coverage of
70 South African Health Review 2020 medical expenses, sick leave and medical treatment and annuity (RA) funds.39 The medical assessment of disability rehabilitation. Following maximum medical improvement is governed by legislation and the contractual nature of (MMI), a decision on permanent disablement (PD) is made the benefit being claimed. The definition of disability in the by the CF based on clinical findings and pre-defined CF contract is central to the disability assessment. impairment criteria. A PD less than 30% qualifies a claimant for a lump sum, while a PD greater than 30% qualifies a LTI industry and workplace pension fund schemes claimant for a pension.32,33 The claims process involves the submission of a claim form and supporting medical documents to the insurer or pension There is little uniformity in medical assessments and a huge fund scheme. Claims assessors review the evidence against backlog of unresolved claims. Reasons for this include the contract and can either request further information at the poor quality of medical information received, lack of the claimant’s cost (this cost can be funded under certain standard processes for evaluating impairment, and limited circumstances), request an independent medical evaluation capacity and lack of expertise to adjudicate such claims.34 at the insurer/scheme’s cost, or decline or admit the claim. An appeals process is allowed for claimants who wish to The Income Tax Act (No. 58 of 1962) allows for retirement challenge compensation outcomes. In order to address at age 55, or before 55 if a member of a fund becomes challenges, the CF is likely to move towards using the permanently incapable of carrying on his or her occupation.16 AMA Guides for the adjudication of occupational disease and injuries as reflected in the draft Regulations published Challenges include claimant costs of compiling the required recently.35 In addition, the Department of Employment and medical evidence for the claim submission; claimants Labour (DEL) has decentralised the functions of the CF and may find that they have no disability cover or inadequate focused on improving claims-processing efficiency and financial cover if the correct advice was not provided at the building capacity at provincial level. policy application stage. Inaccurate claims decisions may occur. However, the Ombudsman for Long-Term Insurance Compensation Commissioner for Occupational Diseases (OLTI) and Pension Funds Adjudicator (PFA) function to The Compensation Commissioner for Occupational adjudicate disputes raised by insurance clients and ensure Diseases (CCOD) fund compensates current and ex- that fair processes are followed. mineworkers for lung disease contracted because of occupational exposure to mine dust in terms of the Occupational Diseases in Mines and Works Act (ODMWA).36 Current and former mineworkers are entitled to statutory Recommendations benefit medical examinations at accredited facilities, biennially. Claims are submitted to the Medical Bureau for Occupational Diseases for medical adjudication. Specific Proposed framework The Fundamentals of Impairment and Disability Assessment statutory guidelines are used to determine impairment and (FIDA) online course proposes a standardised approach disability, and a standard lump sum is paid out based on which is suggested as the preferred framework for medical first-degree or second-degree impairment. Little is known assessment of disability across all SS benefits.40 The FIDA about quality-control measures in place to ensure fair and course was developed as a collaborative project between consistent assessment of claims, although the certification the private sector, public sector and academic institutions, panels are comprised of radiologists and doctors trained with input from a team of multidisciplinary specialists. The in occupational health. Financial compensation under the framework consists of nine elements and recognises that CCOD is far less than under the Compensation Fund.37,38 medical assessment of disability is not a linear process and involves different phases, role-players, and multiple decision There is a significant backlog of unprocessed claims, points. While not all elements may be applicable to each and the lump sum amount awarded to mineworkers is case due to the dynamic nature of disability evaluations, a disproportionate to the damage suffered. The poor quality of thorough assessment must include all elements pertinent to life linked to such occupational diseases has spearheaded individual cases (Figure 2). litigation against the mining houses by mineworkers, resulting in a legal settlement of R5 billion, which will be The following framework for disability assessment in the administered by the Tshiamiso Trust. This will improve working-age population is proposed (Table 3). Within the compensation and widen the net of eligible beneficiaries, as current SS structure, it is impractical to prescribe a single well as augmenting the benefits received under ODMWA.37,38 assessment tool and guideline to be used uniformly across the different benefit structures. However, this framework Voluntary cover allows for a consistent approach to medical assessments. Medical assessments are required for long-term insurance (LTI) industry disability benefits, workplace pension fund disability benefits, and early withdrawal of retirement
Social security benefits and disability assessment in the working-age population in South Africa 71 Figure 2: Disability Assessment Framework, 2020
Case Management
Return Impairment to Work Assessment Programme Maximal Diagnosis and Medical Prognosis Improvement Functional Vocational Capacity Rehabilitation Assessment Legislation and Ethical Principles Legislation
Decision Regarding Work Disability
Source: FIDA online course.40
Table 3: Disability assessment framework elements
Diagnosis and prognosis The correct medical diagnosis is critical as an incorrect diagnosis leads to a flawed assessment process. The prognosis includes predicting whether the clinical condition will improve, deteriorate, or remain stable over time, the likelihood of recovery, and the time periods associated with this. This element includes all aspects related to treatment and rehabilitation.
Maximal medical improvement MMI refers to the point of recovery where the clinical condition is stable and further formal medical or surgical intervention is not expected to lead to significant clinical change in the next 12 months. MMI is well described in the AMA Guides.41
Ideally, a final decision regarding disability is made when permanency is reached. However, many medical conditions are dynamic and therefore never reach permanency. For these conditions, the term MMI is preferred.
Impairment assessment An impairment assessment usually involves assessment of the medical condition and translation of the findings into a percentage score. The most common impairment methodology used in South Africa is the AMA Guides. This allows quantification of the medical condition but should not be the only factor determining the disability outcome.41,42
Functional capacity evaluation FCE has been defined as “an evaluation of capacity of activities that is used to make recommendations for participation in work while considering the person’s body functions and structures, environmental factors, personal factors and health status”.43 Expertise in this area falls within the domain of occupational therapists in South Africa.44
Return-to-work (RTW) A RTW programme is a planned process to facilitate a return to productivity and manage programme the impact of disability in the workplace.45 It includes processes of alternate and reasonable accommodation within the workplace. An effective RTW programme allows the affected individual to integrate back into the work environment in the same or an alternative position, in a manner coordinated with the recovery process.
Vocational rehabilitation VR is a “multi-professional evidence-based approach that is provided in different settings, services, and activities to working age individuals with health-related impairments, limitations, or restrictions with work functioning, and whose primary aim is to optimize work participation”.46
72 South African Health Review 2020 Case management The purpose of case management in the medical assessment of disability is to facilitate the process, allowing co-ordination between the various elements involved and communication between all role-players. It is a collaborative process that takes into account what is required to meet an individual’s health, social care, educational and employment needs.47
Legislation and ethical The medical-assessment process is guided by legislation and ethical principles. Knowledge in principles this area is essential to protect all role-players and ensure fair and equitable treatment of the individual being assessed.
Decision regarding disability The decision regarding disability should consider the interaction between the health condition, activity limitations, participation restrictions, and interaction with environmental and personal contextual factors, as identified during the medical-assessment process.42,48-50
Source: FIDA online course.40
and Training Authority has supported the development of Discussion a multidisciplinary online FIDA course to strengthen the knowledge base among involved professionals and provide more formal multidisciplinary training in South Africa.40 Social security reforms The planned SS reforms, including the alignment of SS Evaluation and feedback structures, would facilitate the adoption of more streamlined Annual reports published under the different benefit assessment tools and guidelines. The alignment of NHI with structures provide sparse analysis of the medical SS structures would facilitate information sharing between assessments done. Review of assessment quality is therapeutic, rehabilitative and disability-assessment services important to protect the claimant from the effects of poor- which is required for an accurate assessment process.51 quality assessments, which could include incorrect claims Irrespective of changes to the SS structure, the overarching decisions, distrust in the system, direct and indirect costs, framework for the medical assessment of disability must be and decreased probability of integration back into the uniform across benefits, as outlined in this chapter. workforce.
Multidisciplinary teams Poor inter-rater agreement has been identified in disability Multidisciplinary teams are essential to successful assessments.60-62 Feedback from the RA Fund Appeals implementation of the framework. It has also been Tribunal support these findings in the South African suggested that reassigning tasks from doctors to a broader context.26 More data are needed on the submissions, network of health professionals could decrease costs.52 process, findings, outcomes and quality of assessments Strengthening of public-sector rehabilitation services and in the country. Identification of suitable measurement successful implementation of the National Department indicators and establishment of monitoring and evaluation of Health Framework and Strategy for Disability and systems is recommended as part of quality control, Rehabilitation Services is required to create more capacity oversight, and governance of the disability-assessment for multidisciplinary teams within the public sector.53-55 process.
Training Assessment guidelines Competency has been recognised as a key component The use of up-to-date and evidence-based guidelines is in a successful disability-assessment process.51 The linked to improved assessment quality and decreased process requires specialised knowledge and skills.56,57 The interrater variability.60-63 While there have been attempts importance of education and training has been highlighted to develop suitable guidelines for the local context, these in studies.58,59 are limited, and they have not been uniformly adopted or updated as new evidence emerges. There is negligible focus on training in impairment and disability assessment in most medical curricula at South Barriers to equitable medical assessment of African universities. At intern level, some universities provide a single formal lecture during the Family Medicine disability Despite South Africa’s progressive labour legislation, notably rotation. At medical officer and postgraduate level, there has the Employment Equity Act, enforcement is inadequate historically been no formal training. and the country lags in accommodation of PWD in the workplace.4 A high unemployment rate, low skills base and Successful adoption of the outlined framework requires poor enforcement of protective labour legislation facilitates standardised education and training for all involved the easy termination of workers’ employment, even in those role-players, including competency assessments and with mild disability. accreditation. To this end, the Insurance Sector Education
Social security benefits and disability assessment in the working-age population in South Africa 73 Fitness-to-work does not equate to job availability and Equitable access to health care for PWD involves access employment. In a move toward work integration, it is to disability assessment and compensation mechanisms important to ensure that the process does not leave PWD across all pillars of SS that align with the principles outlined worse off, with an inability to qualify for SS benefits and in the UN CRDP. The presented framework would facilitate unemployment. Assessments should take the broader an impairment/disability assessment process that promotes social context and environment into account to mitigate this integration and is aligned with current international risk.64 Other options could be to allow further incentives recommendations. and support from government for employment of PWD. This should be accessible to small businesses and the informal sector. Inclusion of persons with disabilities The authors consulted an occupational therapist, Ms The outcome of the assessment process should promote Ayesha Noordien, who is a person with a disability and also inclusion, equality, and full and effective participation in the Head of the Work Assessment Unit at Groote Schuur society, which is consistent with the UN CRPD.5 In addition, Hospital, Cape Town. there is strong evidence for economic societal benefits when taking an inclusionary approach to disability.65
Conclusion
There has been an international shift in understanding disability, from a medical model to a biopsychosocial/ International Classification of Functioning, Disability and Health (ICF) model, and a move toward work integration and compensation as an outcome of disability evaluation.42,48,49,66-68 Accommodating persons with disabilities in the workforce increases self-sufficiency and decreases dependence on SS benefits. Increased labour force participation adds to the tax base.69,70 It is also important that the disability-assessment process and its governing legislation should align with the UN CRDP and promote an inclusive approach where integration into society and enablement is a goal of the assessment. This paradigm shift is currently not systematically reflected in how South Africa’s SS benefits are assessed.
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Social security benefits and disability assessment in the working-age population in South Africa 77 REVIEW 8 Perinatal depression and anxiety in resource- constrained settings: interventions and health systems strengthening
Prompt management of perinatal mental Authors Simone Honikmani,ii health conditions is necessary to avoid Siphumelele Sigwebelai,ii Marguerite Schneiderii disabling physical, mental health and social Sally Fieldi,ii consequences, not only for the women in question, but also for their children.
In South Africa, there are very high levels of depression and health systems strengthening. Examples were sought and anxiety in women during pregnancy and the postpartum three sentinel cases were selected for diversity of location year. This is, in large part, due to multiple risk factors, such and availability of information, from Uganda, South Africa and as gender-based violence, poverty, and food insecurity, Pakistan. which are systemic in the country. Prompt management of these mental health conditions through the health system The cases demonstrated stepped (triaged) care, multi- is necessary to avoid disabling physical, mental health, and component care, and collaborative (shared) care approaches social consequences, not only for the women in question, that drew on culturally adapted, evidence-based psychological but also for their children and for society at large. therapies, and substantively strengthened the service- delivery platform. The interventions strengthened the health A growing body of evidence-based intervention approaches workforce, mainly through task-sharing approaches whereby from resource-constrained settings have been shown to be health promotion, detection and first-level psychological care effective in improving maternal and child health outcomes. were tasked to the community, or to primary-level health However, beyond the research setting, few examples exist workers who received training, supervision and support. In of programmatic interventions for perinatal mental health each of the three cases, strong partnerships with Ministry of embedded within health systems in these settings. The Health stakeholders supported meaningful commitment to aim of the study was to assess whether these interventions sustainability and scale up of the interventions. addressed good practice guidelines and contributed to
i Perinatal Mental Health Project, Alan J Flisher Centre for Public Mental Health, University of Cape Town ii Alan J Flisher Centre for Public Mental Health, University of Cape Town
Click to navigate Perinatal depression and anxiety in resource-constrained settings: interventions and health systems strengtheningto Contents 79 This chapter provides informative examples of interventions Introduction that have continued to operate beyond the research setting, integrated within routine healthcare practice. The study The burden and transgenerational impacts of common aimed to assess whether these interventions address perinatal mental health conditions (CPMHCs) have been good practice guidelines and contribute to health systems well documented in the scientific literature.1 For low- and strengthening. middle-income countries (LMICs), where social determinants of mental ill health are more prevalent,2 there are high levels Cases were sought that focused on maternal mental health, of depressive disorders (18-25%)2 and anxiety disorders that were integrated into existing health systems, and that (25.9%)3 among women in the perinatal period (the time of had been operational for at least four years. pregnancy up to the end of the first year postpartum).a,4,5 Selection of the case studies was done through a desk In South Africa, antenatal depression rates have been review of literature on real-world implementation of maternal reported to be 22-47%.6 Antenatal anxiety rates (for any mental health programmes using Google Scholar and anxiety disorder) have been reported at 15-23%,7,8 and PubMed. Potential case studies were also sought through 21 postnatal depression rates at 11-34%.9 the Mental Health Innovation Network and through the authors’ networks. The authors reached consensus on Untreated common mental disorders are associated which case studies sufficiently met the requirements and with disabling consequences for general functioning, selected three sentinel cases for this chapter, based on including poor physical health and impaired health-seeking access to detailed information directly from programme behaviours, poor educational engagement and attainment, officials, and diversity of location. The three cases provided conflictual interpersonal relationships, impaired quality of a means to test the proposed analysis of good practice and parental care, and challenges with self-care and household strengthening of health systems, rather than providing an tasks.2 A strengthened health system that provides these exhaustive case review. women with integrated mental health care can reduce these disabling consequences. The case studies were assessed against the criteria of the World Health Organization (WHO) framework for good 22,23 In LMICs, CPMHCs and their associated disabling symptoms practice in public health. Identified health systems are often caused or triggered by poverty, food insecurity, strengthening strategies were mapped against the WHO’s gender-based violence, having no reproductive autonomy, Health Systems Strengthening (HSS) core building blocks: and lack of social support, among other factors.4,10 In turn, health service delivery, health workforce, health information the symptoms exacerbate the socio-economic adversity systems, access to essential medicines, health systems 24 in which women find themselves. The causal mechanisms financing, and leadership and governance. appear to be bi-directional, mutually reinforcing, and syndemic.10,11 Additionally, perinatal depression is associated with many adverse child outcomes, including shorter duration of and less exclusive breastfeeding.12 Sentinel cases
The sentinel cases are: the Maternal Mental Health Project (MMHP) in Uganda, the Perinatal Mental Health Interventions Project (PMHP) in South Africa, and the Thinking Healthy Programme (THP) in Pakistan. These are mapped against In LMIC settings, where the treatment gap for mental good practice domains in Table 1. In all three case settings, 6,25,26 disorders is highest,10,13 there is a growing body of evidence there is documented evidence of high CPMHC rates, for the effectiveness of psychological treatments for and thus the domain on relevance has been removed from common mental disorders, including CPMHCs, usually the table for reasons of space. delivered by community health workers (CHWs) or peers.13 Successful randomised controlled trials (RCTs) for CPMHC- focused interventions have been conducted in Pakistan,14,15 India,16 Nigeria,17 Chile,18 Zimbabwe,19 and South Africa.20 Interventions that address social determinants, such as reduction of gender-based violence, basic income grants, employment and enhanced social capital, also confer benefit for mental health.10
a This definition of the perinatal period is the one commonly used among maternal mental health practitioners and researchers, globally.
80 South African Health Review 2020 Ugandan Ministry of Health provided support. Ministry developed new Mental Health Act: and mental health treatment to be provided at different levels of the healthcare system. and guideline Policy changes for maternal mental health affected at provincial and national level. High-level policy and budget commitment to maternal health. Political commitment Political Support from the relevant national or local authorities • • • • Community involvement Community engagement meetings held. Village Health provided Workers psychoeducation for greater community. Stakeholder engagement meetings and prior to workshops service set-up. On-going community liaison. Formal research conducted with service users to establish needs, preferences, and interpretations. Involves participation of affected communities • • • • •
c Partnerships Partnerships Memoranda of understanding signed between HealthRight and Ministry of Health. Facility-level, collaborative care relationships. to local Referral community organisations for additional client support. Member of several advisory and policy task teams. Involves satisfactory collaboration between several stakeholders • • • •
b Duplication Implementation in two districts in Uganda. Model has been duplicated by non-governmental organisation (NGO) in Burundi. care model Stepped up adapted and taken in other South African maternity services (ad hoc) and community- based organisations. Screening tool developed and validated by PMHP used nationally in antenatal care. Open-access online resources available. training care Empathic module developed for the National DoH (NDoH). Replicable elsewhere in Replicable the country or region • • • • • • Sustainability Donor funding ceased Services end of 2019. no longer operating. Service embedded within existing maternity care or community service environments. PMHP funds a large proportion of service costs, including salary through of counsellor, donor grants. Implementable over a long period with the use of existing resources • • • Ethical soundness Substantive formative research, cultural adaptation of screening tools and interventions. User feedback from pilot used to adapt service delivery. Formal permissions and oversight from district and facility- level Department of Health (DoH). University ethics permissions and annual review required. Previous PMHP service user is a board member. Respect current rules of Respect ethics for dealing with human populations • • • • • Efficiency Use of existing, Use of existing, trained CHWs. to existing Referral primary care support, if needed. Use of existing health resources, supplemented with additional personnel. Additional support via referral to existing community health centre or NGO providers. Counselling co- incides with routine maternity visits. Provider capacity building embedded within existing training programmes. Results produced with Results reasonable level of resources and time • • • • • • 30 Effectiveness Local RCT Local evidence for group interpersonal therapy (IPT) in rural adult population. clinical Positive outcomes (symptoms, functioning) regularly measured and reported in Monitoring and Evaluation (M&E) system. Ongoing M&E of postnatal follow-up assessment shows range of positive outcomes for counselled women. Practice must work and achieve positive, measurable results • • • 31-35 Sentinel maternal mental health case studies, mapped against good practice domains mapped against good practice mental health case studies, maternal Sentinel 27-29 Stepped care is a model of delivering and monitoring treatment so that the least resource-intensive delivered first, with clients progressing to more intensive or specialist services as Stepped clinically required. Collaborative care involves the integration of primary providers treating clients in collaboration with more specialist providers, as required. Definitions Maternal Mental Health Project, HealthRight (Uganda) Mental Perinatal Health Project (South Africa) Table 1: Table b c
Perinatal depression and anxiety in resource-constrained settings: interventions and health systems strengthening 81
d Pakistan President’s President’s Pakistan Programme for Mental Health. Endorsed and advocated by WHO as part of mhGAP. Political commitment Political Support from the relevant national or local authorities • • Community involvement Acceptance established from community through formative work. Buy-in from District Health office. Involves participation of affected communities • • Partnerships Partnerships Partnered with state- Partnered operated community health services. provided to Training partner organisations in establishing THP global settings. Involves satisfactory collaboration between several stakeholders • • Duplication Systematic scale Systematic up through the President’s Programme for Mental Health. THP manualised and available for download on WHO website. for THP flexible different cultural adapted contexts; in five other LMIC countries. Replicable elsewhere in Replicable the country or region • • • Sustainability Cognitive behaviour therapy elements (CBT) incorporated into routine work. LHWs’ Programme included President's in Pakistan Programme for Mental Health. Implementable over a long period with the use of existing resources • • Ethical soundness Stakeholder Stakeholder engagement – key principle of service development. Respect current rules of Respect ethics for dealing with human populations • Efficiency Peer-delivered Peer-delivered intervention cost 1 USD per recipient. Manualised intervention, brief training of lady health (LHWs). workers Cascade model of supervision. Results produced with Results reasonable level of resources and time • • • Effectiveness RCTs conducted in RCTs several settings. Follow up showed improved financial empowerment. Practice must work and achieve positive, measurable results • • 14,15,36,37 The Mental Health Gap Action Programme (mhGAP) is a mental health programme developed by the WHO that aims to scale up services for mental, neurological and substance-use disorders in LMICs. The Mental Health Gap Action Programme (mhGAP) Definitions Thinking Healthy Programme (Pakistan) d
82 South African Health Review 2020 The three cases are described below with reference to IPT manuals were used as a training guide. Further, clinical the ways in which they strengthen the pillars of the health supervision and an apprenticeship model were provided system. by a clinical psychologist. These substantive training and supervision elements assisted in overcoming the challenges Maternal Mental Health Project, Uganda of ensuring client follow-up, retaining CPAs in service, and The service was located in post-conflict areas in Northern building a motivated team. and Eastern Uganda where for decades, ethnic-based atrocities were committed against civilians by a dominant By developing referral pathways to primary care facilities, military group, causing displacement and trauma. The CPAs and midwives were able to refer women with severe healthcare system has limited resources, including limited symptoms for assessment by a psychiatric clinical officer for capacity to provide primary health care, due in part to high antidepressant prescription, thereby increasing access to levels of violence and corruption.38 medication.
HealthRight International, in partnership with the Ministry of Leadership and governance elements were supported Health, Makerere University, and Johns Hopkins University, through collaboration with the Ministry of Health USA, identified maternal mental health as a priority problem technical working groups involved with mental health and for post-conflict regions. The collaborators drew on local psychosocial support, the inter-agency Health and Nutrition evidence (a RCT) on group interpersonal psychotherapy Forum, and the Refugee Forum. (IPT) for a rural population,30 and conducted extensive formative research with mothers in service settings, Perinatal Mental Health Project,e South Africa including a pilot project.28 This led to the development of A multi-disciplinary group of health workers and a comprehensive, stepped-care model of maternal mental development practitioners within the public health service health services. The service operated during 2016-2019, and the University of Cape Town Alan J. Flisher Centre for after which donor funding ceased. Public Mental Health have been involved in testing and refining models of mental health service delivery for mothers The design of the MMHP service served to strengthen since 2002.31,34 service delivery and the workforce by reducing the burden on primary health care workers and mental health In South Africa, over 90% of the uninsured population specialists, through task-shifting to village health teams and who require outpatient mental health care, do not receive community members or community psychosocial assistants this care. This has been linked to low levels of human (CPAs). Midwives at primary care facilities provided initial resource availability and limited infrastructure, among other screening for depression, using an ultra-brief screening factors.41 However, given the very high uptake of antenatal tool. Women who screened positive were referred to care services nationally, the PMHP favoured a model that trained community members for further screening and embeds primary mental health care within maternity care psychoeducation. Those who screened positive on the settings in order to maximise coverage and acceptability for Patient Health Questionnaire-939 were referred for individual this vulnerable population. or low-intensity group IPT. Since 2012, the project has strengthened service delivery The health workforce was further strengthened through by providing a collaborative, stepped-care maternal mental building the capacity of CPAs to provide a range of mental health service which has been integrated within a Cape health-related activities, such as community sensitisation, to Town-based public Midwife Obstetric Unit (MOU). The MOU provide mental health information talks to perinatal women is located within a socio-economically disadvantaged setting and their partners. This also served to address the problem characterised by high levels of gang violence, domestic of community stigma around mental health and to engender violence and food insecurity. support for women by their partners. Pregnant women are routinely screened for depression, Community psychosocial assistants were also trained to anxiety and suicidality at their first antenatal visit. Originally, provide IPT to depressed perinatal women whose symptoms this was performed using the widely adopted Edinburgh did not resolve with psychoeducation only, and to refer Postnatal Depression Scale.42 However, the 10-item, Likert severely symptomatic women to primary care clinicians scale proved time-consuming and difficult to score for for further care. In addition, although they provided follow staff, and was poorly understood by the women. With the up in homes for non-attendees, tracking and tracing were inclusion of the PMHP-developed and validated short mental challenging. Training included a certification process health screening tool into the Maternity Case Record,35 that involved assessment of observed health education, the screening is designed to be conducted by nursing or screening, and in-session care during therapy. Trainers midwifery staff as part of the initial antenatal visit. Those made use of the ENACT (Enhancing Assessment of experiencing symptoms, and those at risk for common Common Therapeutic Factors) tool40 to assess competency. mental conditions due to a socio-economic risk assessment, e Disclaimer: Three of the authors of this chapter are PMHP staff.
Perinatal depression and anxiety in resource-constrained settings: interventions and health systems strengthening 83 are referred for free, on-site psychosocial counselling with embedded within existing undergraduate, postgraduate the PMHP counsellor who has a bachelor’s qualification and in-service training programmes. Further strengthening and professional counsellor’s registration. The counsellor has occurred as a result of embedding capacity-building receives ongoing, professional development opportunities initiatives that pay attention to provider mental health and to and regular clinical supervision. In turn, she works closely addressing the widespread problem of obstetric violence.44 to support MOU staff to identify and refer vulnerable clients, providing training and support, as required. In terms of leadership and governance, PMHP provides several important contributions. The project undertakes The counsellor mainly provides individual psychotherapy, research, advocacy, policy and guideline development. This with a mean of three sessions per client. These sessions has included a chapter on maternal mental health for the include a diverse mix of supportive counselling, cognitive National Maternity Care Guidelines45, contributing to the behavioural interventions, problem solving, relationship national Adult Primary Care Guidelines46, the new National counselling, and psychoeducation. Most components have Maternal and Neonatal Health Policy and the Standard a ‘medium’ effect size based on a systematic review and Treatment Guidelines.47 For the latter, predominantly metanalysis of psychological treatments for common mental used by doctors on a mobile application, the chapter on disorders in LMICs.43 The intervention is not manualised Obstetrics and Gynaecology was amended and the Mental as the counsellor has adequate training and skills to tailor Health Conditions chapter was revised to include mention her interventions to clients’ needs. She also provides of management and prescribing for perinatal women for all case management and refers those who need additional mental health conditions, and included an antidepressant- psychiatric or social services support to the community prescribing algorithm, thereby strengthening access to health centre or local NGOs. A telephonic assessment is essential medicines. conducted with clients 6-10 weeks after the birth to establish whether further counselling or referral is needed. Follow up Thinking Healthy Programme, Pakistan is provided, for as many sessions as needed, for up to one Pakistan has experienced international war and civil year postpartum.31,34 conflict over many decades. This has resulted in poor health indicators, food insecurity, displacement, and limited Regular monitoring and evaluation reports are disseminated infrastructure and development, especially in rural areas. to local stakeholders who inform improvements in service The health system, both in the government and private design. The process indicators used for this are not sectors, offers limited access to care.48 Patriarchal cultural incorporated into the NDoH’s health information system. norms, low educational opportunities for women and girls, and high levels of gender-based violence are associated The service is partially funded by the Department of Social with poor physical and mental health status of women.49 Development and partially funded through donor grants. The NDoH supplies on-site amenities and infrastructure. The Thinking Healthy Programme is a cognitive behaviour Funding is the greatest challenge to the sustainability of the therapy (CBT)-based intervention designed to address project. perinatal depression that can be delivered by non-specialist providers such as community health workers and peers Several NGOs and public health facilities have incorporated in primary and secondary care settings.14,25 It has a strong PMHP service and staff support elements into their routine behavioural activation component as well as active operations. These examples of scale up have mostly listening, collaboration with the family, guided discovery, resulted from capacity building partnerships between and homework. The design was led by Professor Atif PMHP and the organisation or unit adapting and adopting Rahman as part of a collaboration between two British and the service. The full-service model is not available at scale one Pakistani university. Positive outcomes and lessons throughout the public maternity care environment. learnt from two formative RCTs and lessons from the field have been described in the published literature, including The NDoH has utilised PMHP health-promotion the need to keep costs low and ensure that core content contributions to inform a range of information, education and techniques were culturally transferable. Manuals were and communication channels, including client leaflets, translated and adapted through cognitive interviewing and MomConnect, NurseConnect, the National COVID-19 field testing with end users.14,15,50 WhatsApp line, and First 1 000 Days materials produced by the NDoH. The Programme strengthens health service delivery through a manualised CBT-based intervention for maternal Further, the PMHP strengthens the country’s greater depression integrated into the country’s primary health workforce, including rural health workers, and those care structure for maternal and child health (MCH), the workers allied to the health system (social workers, NGO- Basic Health Unit (BHU). This consists of doctors, midwives workers) through training and capacity-building initiatives. and lady health workers (LHWs). LHWs provide home visits Open-access multimedia resources and cascade training and deliver the intervention to mothers assessed to be programmes have been developed for maternal mental experiencing depressive symptoms. THP is embedded health, and empathic engagement skills. Many have been within the MCH package of care. Thus, whenever the
84 South African Health Review 2020 community health worker delivers a session for child use for MCH. There are few examples of programmatic nutrition or development, she can use THP principles at the interventions for CPMHCs in LMICs that provide services same time to strengthen the key message as well as provide in the real-world setting, demonstrate good practice, and the psychosocial intervention. This allows for seamless that act to strengthen the health systems in which they are integration into and further strengthening of existing MCH located. services.51 If required, referrals are made for those needing more specialised mental health care within the BHU. The cases selected in this chapter used stepped-care, multi- component care, and collaborative care models that drew The health workforce is strengthened through multiple on evidence-based intervention components (including task approaches. The use of non-specialist providers, LHWs or sharing and adaptation of psychological therapies), and peers, has been shown to be effective and assists efforts that thereby strengthened the service-delivery platform. in scale-up through task-shifting.14,16 A cascade model for Secondly, the cases acted to strengthen the health training and supervision has been adopted to address the workforce through training and supervision processes and challenge of providing supervision to providers in remote attention being paid to staff retention. Thirdly, the cases areas. A master trainer (mental health expert) trains and developed within existing MCH services and managed to supervises the local THP trainers (non-specialist university achieve differing levels of support from strategic leadership graduates in health or social sciences). These trainers and governance stakeholders through working partnerships then train and supervise peer volunteers in their rural and co-creation of system elements. In Pakistan, where cost- settings.25 Competencies are assessed through observation effectiveness data were available, this lent further impetus and scored on a Quality and Competency checklist. to policy change and high-level financial commitment. In A supervision guide, job aides and a reference manual South Africa, health economics data may, in future, assist have been developed.25 In a qualitative evaluation of the in securing targeted financing for maternal mental health training, the key factors contributing to peer competency service delivery so that there may be realisation of the were use of interactive training and supervision techniques, National Mental Health Policy Framework and Strategic Plan the trainer-peer relationship, and their cultural similarity. (2013-2020),53 which includes provision of maternal mental The partnership with CHWs and use of primary health care health services integrated into primary care services. facilities for training and supervision provided credibility for the peers in the community.25 None of the cases selected supported the countries’ health information systems (HIS), although they developed their A cost-effectiveness study on the peer-delivered version of own project-related HIS. Work with Ministry of Health THP estimated the cost at 1 USD per recipient.16 Low cost partners should include advocacy for the inclusion of has been an important feature in influencing leadership relevant health-indicator targets into existing HIS. Targets and governance and allocating health systems financing could include screening positive rates, screening coverage for the programme. THP has been included in the WHO’s rates, intervention uptake rates, and health worker training Eastern Mediterranean Region’s Framework for Mental coverage. Health as a ‘Best Buy’,52 ratified by Ministers of Health of all 22 member countries in the region. The ‘Best-Buys’ serve as In line with good practice, the sentinel cases incorporated a guide to policymakers for investments in mental health. In several approaches to ensure cultural coherence of Pakistan, THP was made a part of the National Programme the intervention, which seemed to enhance uptake and for Non-Communicable Diseases and Mental Health and sustainability. Approaches included formative research, was included in the Universal Health Coverage package for qualitative enquiry with stakeholder groups; pilot testing of Primary Health Care. Further, in 2019, THP was included in trainings and psychosocial interventions; adapting detection the President’s Plan to Promote Mental Health to scale-up methods and screening tools to include emic concepts; and selected interventions nationally.50 use of community-based providers to deliver elements of the interventions. In influencing mental health scale-up in the global arena, THP has been incorporated into the mhGAP The case studies incorporated elements that address social programme as the first completely manualised evidence- determinants, including gender-based violence, through based intervention, with step-by-step instructions for behavioural activation, problem solving, and partner implementation by non-specialists.36 involvement. However, none appeared to have substantively addressed poverty or food insecurity through cash transfers or income-generating schemes, despite the high-quality evidence for these.10 This would require considerable Key findings advocacy and intersectoral collaboration. However, services that combine to provide both psychological care and social support are likely to yield better outcomes for mothers In LMICs, the high burden of depression and anxiety and their children than either type of service provided disorders is felt not only by mothers, their children and separately.11 communities, but also by the health systems that they
Perinatal depression and anxiety in resource-constrained settings: interventions and health systems strengthening 85 Analysis of the case studies in this chapter shows that Conclusion effective and efficient implementation may be facilitated by interventions that draw on culturally adapted, evidence- Health systems strengthening is a strategic and evidence- based modalities and strong training, supervision and based approach that supports the sustainability and support systems for the health workforce. For services to coverage of services, and is crucial for closing the be provided at scale, additional system elements need treatment gap for mental health conditions, including to be addressed, such as programme leads developing CPMHCs.54 Mental health interventions integrated into MHC mutually supportive relationships with Ministry of Health programmes may serve to strengthen the health system. stakeholders, and obtaining high-level financial commitment.
Lessons learned for South Africa • Perinatal mental health services can be integrated • For scale up of these services, the following must into MCH services in resource-constrained settings be addressed: and may function to strengthen the health system. - The availability of targeted health financing. • To ensure the quality and effectiveness of these - The development of relevant mental health services, the following must be addressed: targets and indicators integrated within the HIS. - Health workforce strengthening through a - The development of mechanisms to support range of capacity-building and supportive leadership and governance of the health approaches. system. - The design of interventions that simultaneously address both social determinants and psychological distress.
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88 South African Health Review 2020 REVIEW 9 Community-based peer supporters for persons with disabilities: experiences from two training programmes
Peer supporters assist caregivers to Authors Gillian Saloojeei understand and care for those with Maryke Bezuidenhoutii disabilities in helpful ways. They help to transform a sense of hopelessness, isolation and guilt into pride, acceptance and increased self-confidence.
This chapter describes the development and implementation during training and implementation included content of peer-supporter training programmes by two non-profit development and ensuring that training materials were organisations. Malamulele Onward has trained and currently appropriate for people with low literacy levels; integration of funds parents of children with cerebral palsy (CP) at 18 sites peer supporters into existing rehabilitation services; travel; nationally, while eight adults with spinal cord injuries (SCIs) and sustainability of a peer-support service. formed the Manguzi-based Siletha Ithemba, following their training as peer supporters. The lived experience of a SCI or of caring for a child with a complex disability combined with in-depth training and The impact of both programmes has demonstrated their ongoing mentoring gives peer supporters credibility, and value. Malamulele Onward has assisted caregivers to their advice and information are more likely to be believed understand CP, and helped them learn how to care for their and acted upon. What takes therapists years to achieve with children in helpful ways and how to transform a sense of clients in terms of behaviour and lifestyle changes can be hopelessness, isolation and guilt into pride, acceptance and achieved by a peer supporter in one session. Peer supporters increased self-confidence. Clients with newly acquired SCIs offer a way of filling the gaps in the current inequity of access experienced easier inclusion and integration back into family to rehabilitation for persons with disabilities. If integrated and community settings. Their ongoing telephonic contact into traditional rehabilitation services and with a sustainable with SCI peer supporters prevented unnecessary out-of- funding model, improved outcomes are possible for adults pocket expenses and created an early warning system for and children with disabilities in terms of social inclusion and avoidable secondary complications. Challenges encountered prevention of secondary complications.
i Independent physiotherapist, Johannesburg; formerly Malamulele Onward ii Rehabilitation Department, Manguzi Hospital
Click to navigate Community-based peer supporters for persons with disabilities: experiences from two training programmesto Contents 89 The concept of peer supporters originated in the mental Introduction health field alongside community-based services for families.11 Defined as persons with similar life experiences Despite an increase in number of graduates, access who also have a professional role, peer supporters are to rehabilitation professionals remains an international perceived as credible role models who instil hope and 11 challenge, especially in rural and underserved areas.1,2 facilitate engagement in services. People learn more and Current approaches to care appear unsustainable and try harder when they learn from others who they perceive to unattainable for the most vulnerable.1 Consequently, be like themselves and managing similar circumstances. the majority of adults and children with disabilities have limited access to interventions that promote inclusion and Peer supporters have been proposed as a cost-effective 12 participation and that prevent long-term sequelae of their complement to other professional-led programmes. A disabilities.2 This is even more true for adults and children variety of models of care exist, ranging from telephone-based with lifelong disabilities, such as those caused by cerebral support to institution and community-based individual and palsy (CP) and spinal cord injuries (SCIs), living in low- and group approaches. Remuneration and lack of recognised middle-income countries (LMICs). Despite the relatively low training have led to questions around sustainability, scalability, incidence of SCI and CP, the social and economic impact of and acceptance of the cadre by health professionals. these conditions is considerable.3,4 For persons with SCI, peer-supporter programmes have the 13 Adults and children with long-term neurological disabilities potential to reduce bed stay, reduce costly readmissions, 14 rely extensively on informal caregivers such as family improve mental health and community participation, members for general assistance, transportation and regular increase access to care through referrals and advocacy, emotional support.5 Centralised institution-based and address issues of compliancy, and appear acceptable to profession-dominant services perpetuate out-of-pocket persons with disabilities and their caregivers at all levels of 12 expenditure, negatively affecting service uptake and care. Parent-to-parent peer support for parents of children retention in care.5 For children with severe disabilities as with disabilities has been found to improve emotional and 15 a result of CP, physically caring for a child who needs total psychosocial well-being. assistance in all daily activities generally falls on the family and it is usually mothers who are the primary caregivers, This chapter describes the development and implementation a role and responsibility they are often unprepared for. of two peer-supporter programmes in South Africa, viz. the Caregiver strain, stress, fatigue, depression, and ultimately a Malamulele Onward Carer-2-Carer Training Programme (MO reduced quality of life, are well-described in the literature.6 C2CTP) for caregivers of children with CP, and the Manguzi- based SCI peer-support programme. After discussing key Community-based rehabilitation (CBR) has long been findings from these two programmes, the chapter concludes advocated as a comprehensive strategy for general with recommendations regarding the integration of peer community development and to facilitate services at supporters into current rehabilitation services for persons community level. It provides rehabilitation, reduces poverty, with disabilities in South Africa. and equalises opportunities and social inclusion for all persons with disabilities.2 Both CBR and peer supporters form part of South Africa’s Framework and Strategy for Disability and Rehabilitation.7 CBR is currently implemented Development of two peer- in over 90 LMICs, and although it has been shown to have supporter programmes in South a modest beneficial effect, in reality, few persons with disabilities are believed to have access to even basic health Africa and rehabilitation services.2 Poor intersectoral collaboration and lack of integration of CBR into existing rehabilitation The Malamulele Onward peer-supporter programmes, combined with the longstanding controversy programme regarding what CBR actually is, may help to explain why this CP is the most common cause of motor disability in strategy has not had the desired outcome in terms of access children. These motor disorders are often accompanied 8,9 to rehabilitation. by “disturbances of sensation, perception, cognition, communication, behaviour, epilepsy, and by secondary Thus there remains a need for further innovation to close musculo-skeletal problems”.16 This makes CP a complex the gaps in the provision of rehabilitation services. Self- condition placing a significant burden on families, the management, peer-delivered support, and integration of healthcare system and the general economy.4 peer supporters into rehabilitation settings have emerged as promising complementary interventions to counter the In LMICs, the prevalence of CP is 2.6-3.4 per 1 000 live limitations and lack of access to services encountered by births.17 Extrapolating this to South Africa, it can be estimated 10 children and adults with lifelong neurological conditions. that there are close to 59 000 children with CP. Unpublished research in a single rural setting by the first author found
90 South African Health Review 2020 that current rehabilitation services are reaching less than • Understanding of the causes of CP and ways to reduce half these children. feelings of guilt and isolation. • Practical skills and knowledge in order for parents to Malamulele Onward (MO) is a non-profit organisation (NPO) handle and position their children during everyday founded in 2005 in response to the need for children in activities. resource-constrained settings to access ongoing therapy. • Opportunities for parents to share their personal stories The C2CTP was designed by a multi-disciplinary team of MO and struggles within a safe space. therapists to meet the need for: • Access to information on CP, using easily understood The MO C2CTP comprises seven modules (Table 1). terminology.
Table 1: Content of the Malamulele Onward Carer-2-Carer training programme, 2019
Module Content
1 Introduction to CP: What is it and how does it affect my child?
2 CP as a way of life: Looking after my child throughout the day
3 Getting active: Getting my child’s body ready to move throughout the day
4 Eating and drinking: Making mealtimes safe and comfortable for my child
5 Communication: My child and I understanding each other
6 Cerebral visual impairment: Understanding where and what my child can see
7 Play: Unlocking my child’s potential
Each module involves a two-hour workshop presented by attending therapy and families that were struggling. Hence a peer supporter, who is a family member (usually a mother the term ‘parent-led’ services has been adopted to reflect or grandmother) of a child with CP who has been trained as the role they are playing at community level in supporting a parent facilitator. Training programmes for caregivers of children with CP and their families. children have been advocated as an intervention in LMICs,18 but the MO C2CTP is the first programme to completely Between 2014 and 2019, a total of 1 211 children and their task-shift the training role from healthcare workers to families were reached through the C2CTP. caregivers. The Manguzi SCI peer-supporter programme The C2CTP was developed and refined over a period of Ten adult wheelchair users known to the Manguzi seven years. The parent facilitators were major contributors Rehabilitation Department attended a five-day peer to the final product through their feedback and their group training run by Afrique Rehabilitation and Research experiences in running the programme. Training a parent Consultants (ARRC), a Cape Town-based non-profit facilitator to be able to run the full training programme of company. These 10 adults, including males and females, seven modules takes 240 hours, and this is usually spread with varying reasons for their SCIs, and varying educational over three two-week blocks. One of the parent facilitators backgrounds, were selected based on their level of is now a master trainer, able to train new parent facilitators community participation, their capacity to volunteer, and the with minimal input from a therapist. There are currently level of interest shown in the programme. Two wheelchair 27 parent facilitators working at 18 sites in five provinces users were already working at Manguzi Hospital as and Lesotho. All parent facilitators receive supervision and wheelchair technicians through a service-level agreement mentoring through on-site visits and telephone support, in between Disabled People South Africa (DPSA) and the addition to support from local rehabilitation therapists. KwaZulu-Natal Department of Health.
Subsequent observations from regular site visits revealed The peer-supporter training included input on disability the additional role that parent facilitators were playing in rights; bladder and bowel care; skin care; sexuality; monthly hospital-based CP clinics. Consequently, parent relationships; healthy lifestyle and exercise; transfers; facilitators received further training on how to work with assistive devices; and communication. The content of the parents and children in groups and how to lead discussions peer-supporter training manual was developed over six on topics covered in the C2CTP. Their role was further years by a team led by Jacques Lloyd, himself a person expanded to include home visits to children no longer with an SCI. The material was piloted in Uganda and
Community-based peer supporters for persons with disabilities: experiences from two training programmes 91 further refined during training courses in Tanzania and complications persons with SCI encounter and refer them Mozambique, and is constantly updated. The manual to the appropriate health, rehabilitation and social service uses examples appropriate to low-resource settings and departments. emphasises group dialogue. This encourages participants to share and explore contextually relevant problems, Currently two of the trained peer supporters play a dual challenges and solutions with a skilled facilitator. At the role as both wheelchair repairers and peer supporters at end of the five-day training course, SCI peer supporters Manguzi Hospital, while a further four have been integrated are equipped to identify the challenges and secondary into the rehabilitation service (Table 2).
Table 2: Role and function of SCI peer supporters at Manguzi Hospital, 2019
Setting Role and function
Acute care/ward setting • Initiate contact, befriend peers. • Offer counselling: answer tough questions, give hope/outline a future. • Demonstrate basic mobility/activities of daily living (ADL). • Accompany rehabilitation staff on pre-discharge home environment assessments. • Provide coaching on wheelchair maintenance and repairs. • Introduce new clients to the peer-support network.
Outpatient/clinic setting • Identify new clients and onward referral. • Provide ongoing mentoring. • Provide role modelling and health education/advice. • Maintain own database of wheelchair users; keep in telephonic contact with members in the network; provide the link between the community and health services. • Provide wheelchair maintenance and repair services. • Provide coaching on wheelchair skills, mobility and ADL skills and goal setting under direct supervision from rehabilitation professionals. • Organise wheelchair repair/peer-support outreach clinics. • Provide new healthcare professionals with disability sensitisation training, wheelchair skills training, and training on topics including bowel and bladder care.
Community setting • Engage with community structures such as traditional authorities, municipal counsellors, NGOs, taxi associations, churches, etc. • Provide advocacy and awareness raising.
Home • Do home visits and provide mentoring and psychosocial support, including acting as an intermediary with family or community. • Provide practical advice on adaptations within the home setting. • Provide coaching on wheelchair and general mobility skills, including ADL activities.
The Manguzi SCI peer supporters formed their own NPO, Impact of the two peer-supporter programmes Siletha Ithemba, which has over 40 active users on its client Impact of the MO C2CTP list. Therapists and peer supporters work collaboratively, A qualitative study was undertaken to evaluate the impact and have triaged clients to ensure that those requiring of the MO C2CTP. This comprised two components, viz. self- regular and intensive face-to-face support receive this, completed questionnaires, and focus groups. All caregivers whereas clients at lower risk for secondary complications attending the parent-led C2C workshops during the first receive telephonic follow up. three years of the programme completed an open-ended questionnaire at the end of each workshop. Focus groups at five rural sites where the programme was well established were facilitated by the master trainer. Criteria for choosing Key findings participants was that they had to have attended all five workshops and be comfortable expressing themselves. Key findings related to training and development of the A lay translator translated data from 470 questionnaires into two peer-supporter programmes are presented under two English. The focus group discussions were recorded on a themes, namely: (1) the impact of the programmes to date; tablet after written informed consent was obtained from and (2) challenges encountered in programme training and participants. A total of 41 caregivers (mothers, grandmothers implementation. and one father), participated in the focus groups. The
92 South African Health Review 2020 recordings were transcribed and translated into English by a caregiver information and understanding; caregiver mental lay translator. health; caregiving practices and behaviour; and caregiver empowerment. Deductive analysis was used to organise The qualitative data were organised into four predetermined and analyse the data according to these predetermined themes based on the identified goals of the programme, viz. themes (Table 3).19
Table 3: Themes, sub-themes and categories from qualitative analysis of MO CTCTP data, 2019
Theme Sub-themes Category Example
Caregiver Caregiver understanding Understanding of CP “I believed that a child with CP doesn’t live information and of the child with CP very long, so I didn’t accept my child.” understanding Understanding of the child “I now know that my child doesn’t like meat, because of listening to him.”
The future “We are thankful because after learning we see the future.”
Caregiver Negative feelings Feelings of isolation “I like to hear other parents tell stories about mental health their children, this made me understand that I am not alone.”
Feelings of guilt and self- “As a parent to a child with CP, I feel I can blame accept this because it is not my fault.”
Confusion and hopelessness “Before the workshop I was confused about my child and hopeless.”
Positive feelings Hopefulness “I am really feeling counselled because my hope was lost but now I feel proud of my child.”
Confidence and self-esteem “I feel open to talk to my neighbour about my child’s condition.”
Caregiving Practical skills Communication skills “We could not cope well, especially with practices and communication, but since coming here for behaviours the workshop we understand that he uses his eyes.”
Positioning “My child could not sit straight, she was bent all the time. Coming here helped me a lot to learn from the workshop on how to position my child and how to use a cut-out cup.”
Feeding “The workshops helped in that I know how to position my child for eating, also how to help him to learn to chew.”
Relationship with child Progress and improvement “Because I have been taught how to work with my child at home, there is progress with my child and I am happy.”
Expectations of child “Even with housework I let her try and help, I learned from the workshop to give her a chance.”
Love and acceptance “We were taught to love them and not take them as a burden.”
Community-based peer supporters for persons with disabilities: experiences from two training programmes 93 Theme Sub-themes Category Example
Caregiver Relationships Family “When carrying my child on my back people empowerment will ask me silly questions because they don’t understand, but the workshops have played an important role in the relationships within my family.”
Other parents “I can tell others that their child is not sick."
Community “Now I can stand in front of people and tell them what causes CP.”
Participation Going to church “Now I am proud to push him to church.”
Play “But now everybody loves him and they play freely with him after I shared with them what CP is.”
As a result of attending the parent-led workshops, many streets of Manguzi had increased, which is perhaps further caregivers described feelings of hopefulness, a deeper evidence of the role that the peer supporters have played in understanding of CP and of their own child, and greater promoting inclusion, re-integration and participation. understanding of how to care for their child. Evidence of increased self-esteem and self-confidence was also The extensive network built by the SCI peer supporters has apparent: “At first it was difficult with my neighbours strengthened communication between persons with SCIs, not knowing what to say to them, but now thanks to the the therapists and the health system in the Manguzi area. workshops it is better.” Clients readily contact the peer supporters telephonically to voice challenges ranging from broken assistive devices Qualitative evaluation of the C2CTP demonstrated that the to medical symptoms and psychosocial issues. Pertinent programme went beyond helping parents to understand problems are relayed without delay to therapists who advise their child’s condition, to facilitating acceptance and the peer supporters on further actions. This system has helping parents to stop blaming themselves. Caregivers felt provided an effective early identification warning system empowered and ready to explain CP to family members and and/or averted and minimised secondary complications. The neighbours, were equipped with basic skills, and displayed a system’s effectiveness was highlighted during the COVID-19 sense of control. This has to be liberating for parents in rural lockdown and numerous service-delivery protests. settings where ignorance and negative attitudes towards disability abound. Challenges encountered in training and implementation of the peer-supporter Impact of the SCI peer-support programme programmes Impact of the SCI peer supporters has not been formally Content development: An initial challenge was deciding evaluated yet. Rehabilitation professionals at Manguzi on the core content of the training modules for the MO Hospital reflected on the early use of SCI peer supporters C2CTP. Cerebral palsy is a complex condition and it was across settings, from acute through to chronic care. In important to decide what information was pertinent and their opinion, input from SCI peer supporters has positively how to convey it in a clear and simple manner. Analogies influenced clients’ coping skills; allowed them to raise and were made using unconventional examples relevant to a discuss questions not usually asked of health professionals; non-medical rural audience. The therapist-trainers had to improved engagement with rehabilitation goals; and learn to let go of precise medical explanations and allow promoted an overall positive outlook. They observed how for minor inaccuracies in order to achieve the bigger goal peer supporters assisted family members to prepare for of understanding concepts and the impact of the disability. the client’s return home and how their involvement has Content development was less of a challenge when training added legitimacy to advice and facilitated frank discussions. the SCI peer supporters as it had been adapted for low- Younger therapists and doctors commented on how their literacy settings through earlier field testing. personal attitudes around disability and ability had changed and been shaped through the peer supporters’ involvement Training: Coming from a diverse variety of rural areas, in practical orientation events for new health professional speaking different languages, and with varying literacy staff. It was observed that the number of wheelchair and levels and understanding of English as a common language, buggy users attending the local annual sports day had impacted significantly on the pace of training in the first quadrupled over the past four years, and that the number group of 20 parent facilitators in the MO CTCTP. It became of wheelchair users seen on any given day on the main necessary to extend the training from three weeks (as
94 South African Health Review 2020 originally intended) to five weeks. A variety of teaching also served as an early warning system, allowing prevention, methods helped facilitate the participants’ understanding and early identification and intervention for secondary retention of the content. The use of clear visual cues, plenty complications. Through consistent leadership from the of appropriate photographs and a standardised layout in the rehabilitation management team and enthusiastic support manual helped decrease the literacy demands of the training from the peer supporters themselves, junior therapists were material. Therapists grappled with finding the right words given a safe space to learn: “The peer supporters reduce to describe concepts as well as appropriate images for the so much anxiety and stress, particularly around the socio- display materials, and it was here that the parent facilitators economic and cultural contexts and because they already made a valuable contribution, e.g. in suggesting how have a rapport with the clients. I know I can rely on them, concepts could be explained more simply, what words to and in so many instances they can simply take the lead. It’s use, and what practical exercises worked best. Translations such a great partnership and our community services would presented another hurdle as there were terms for which be sunk without them” (community service physiotherapist, there was no translation in local languages. Professional Manguzi Hospital). translators were employed once the material had been revised, and the parent facilitators reviewed the translated Scalability and sustainability: By far the biggest challenge material to ensure comprehensibility and understandability. in implementing a peer-supporter programme is that no precedent exists for formal and funded integration into Language, literacy levels and translation posed a similar existing rehabilitation services. Currently all peer supporters challenge in the SCI peer-support training. Considerable are volunteers or donor funded. Apart from training and logistics were involved in accommodating 12 wheelchair mentoring costs, expenses include stipends, data, airtime users at a central venue in a deep rural area. The initial five- and travel. day training provided a basic knowledge base, but ongoing training, mentorship and support are required to enable new Travel: Getting around the community to do home visits is peer supporters to manage complex social scenarios and a challenge in rural areas where peer supporters rely on varying levels of function, acuteness, and types of SCIs. public transport. Not only is public transport inaccessible to wheelchair users, but drivers often charge additional rates Mentoring and supervision: Mentorship and ongoing for wheelchairs. The Manguzi area is comprised mostly of training are critical to the sustainability, quality, relevance deep beach sand, making it difficult for even the fittest and and success of the programmes. Peer supporters need most skilled wheelchair users to propel themselves more to be able to self-organise, work independently, prioritise, than three kilometres (the maximum distance achieved in a and submit simple reports. Low literacy levels need to be contest!). Furthermore, taxis to remote areas are infrequent, accommodated when designing, monitoring and evaluating and transport between areas is unavailable. systems. These are all skills that need to be taught and that cannot be assumed.
Integration into existing formal rehabilitation settings: Key lessons Given peer supporters’ lived experience of disability and/or their experience of parenting a child with disability, plus their • Current rehabilitation services within the South African in-depth training, it is not surprising that some therapists public sector are fragmented, centralised, and rely on a may feel threatened. This is especially true for younger high turnover of junior staff, affecting quality of care and therapists who have not yet established their professional sustainability of community-based services.a Training of identity, or in settings where rehabilitation professionals mid-level rehabilitation workers has stalled because of are accustomed to being the experts. If rehabilitation regulatory, training-institution, professional-preference, professionals are not comfortable with role-release, with and budgetary challenges.a Years of austerity measures the concept of ‘non-professionals’ being experts, and if have resulted in stagnating numbers of rehabilitation there is no ‘buy-in’ from the rehabilitation team, then peer staff in the public sector between 2012 and 2016. supporters will be underutilised.
Against this background, peer supporters are a beacon The experience with the SCI peer supporters at of hope. Experience from both the localised Manguzi Manguzi was that trust between therapists and the peer SCI programme and the more national MO C2CTP supporters grew through mutual respect for one another’s has demonstrated the value of peer supporters in complementary roles and expertise, and the improved addressing some of the inequities in rehabilitation, outcomes obtained when working together in challenging particularly in resource-constrained settings where situations. Open lines of communication between therapists access to quality and consistent rehabilitation is lacking. and peer supporters reduced out-of-pocket expenditure, e.g. clients making unnecessary trips to the hospital, and a Cole J. Situational and gap analysis of rehabilitation and the human resource need and supply of health therapists in South Africa. Social Trends Development Services: An unpublished report prepared for the South African Committee of Health Sciences Deans, 2012.
Community-based peer supporters for persons with disabilities: experiences from two training programmes 95 • Caregivers of children with CP and persons with • Peer supporters not only act as motivators and role SCIs voice concern about therapists’ knowledge of models, but also facilitate access to the healthcare living with a disability, and the ability of therapists to system, navigation of the system, and retention in care. impart practical and subjectively relevant advice.12 At community level they provide significant support Peer supporters are viewed as legitimate sources of to clients and caregivers in negotiating the numerous information, having ‘lived through a similar situation’, barriers to social participation and inclusion. therefore having more credibility. Consequently, advice and information from a peer supporter is more likely to be believed and acted upon. Often, what takes therapists years to achieve in terms of behaviour and Recommendations lifestyle changes can be achieved by a peer supporter in one session. Transform peer-supporter NPOs into micro-enterprises: Funding is required if there is to be long-term sustainability • Newly qualified rehabilitation therapists are ill-equipped of peer-supporter programmes. In the absence of any to deal with the complexities and realities of lifelong regulatory authority for peer supporters, it is highly unlikely disabilities such as CP and SCI. Undergraduate syllabi that posts will be created in the government sector. Current struggle to ensure that students learn the necessary peer supporters are funded by NPOs, which are themselves skills in managing SCI and CP clients in low-resource donor dependent. A more sustainable solution could settings.a In addition, disability is a cross-cutting include transforming these NPOs into micro-enterprises issue, yet it is often taught from a discipline-specific that sell their services to government departments. This perspective. Partnering with an experienced peer requires an attitudinal shift from healthcare providers in supporter fast tracks the learning of newly qualified recognising peer supporters as non-traditional experts, the therapists in a way that no undergraduate training is complementary role they play in optimising rehabilitation able to achieve. services, and a willingness to pay for their services. For this model to be successful, peer supporters require skills and • The challenges encountered in developing the content training in how to run an NPO as a micro-enterprise. and training materials for peer supporters highlights that this process should not be undertaken lightly. Success Professionalise peer-supporter training: Apart from the can only be achieved when rehabilitation professionals recently developed Higher Certification in Disability Practice and peer supporters work together closely, listen to at the University of Cape Town, no other accredited or each other, and learn from one another. recognised training exists for mid-level disability workers or peer supporters. Registration of an occupation-based • In order to assist their peers, peer supporters require qualification with the Quality Council for Trades and in-depth knowledge of the nature of the disability (viz. Occupations (QCTO) would not only make peer supporters CP or SCI), beyond the information that they themselves more employable, but would also guarantee the quality and received as clients. They need to be able to answer standard of training. questions that they may not have personal experience of. There is a risk that when questioned by their clients, Find transport solutions for peer supporters: Apart from peer supporters may offer personal explanations, which the fact that public transport is inaccessible to SCI peer could be misleading or factually incorrect. An open and supporters, relying on public transport to get around the respectful relationship between peer supporters and community is not an option for rural community-based peer the professionals supporting them helps to minimise this supporters. Unlike community health workers who are risk. For a peer-supporter programme to be effective, assigned to a number of households in one geographical investment in ongoing peer-supporter training cannot area where it is generally possible to reach all clients by be underestimated. foot, clients with SCI and CP are spread across a district. Hence creative transport solutions need to be found if • Peer supporters should not be viewed as replacements peer supporters are to work independently. One option for for rehabilitation professionals and mid-level workers as parent facilitators is motorbikes, using the Riders for Health their input is restricted to a specific disability. However, motorcycle model.b for complex conditions such as CP and SCI, the experience of the MO C2C parent facilitators and the In the case of SCI peer supporters, the ideal transport Manguzi SCI peer supporters provides clear evidence solution would be an adapted 4 x 4 vehicle. However, cost- of their value to existing services. Their roles are based wise this is unrealistic, hence the importance of SCI peer on legitimacy and first-hand experience that cannot be supporters being integrated into the rehabilitation service substituted by other cadres. and the appropriate allocation of adapted vehicles to the rehabilitation department.
b https://ridersintl.org
96 South African Health Review 2020 Integrate peer supporters into rehabilitation services: 9. Rule S, Lorenzo T, Wolmarans M. Community-based Change-management workshops may be required to assist rehabilitation: new challenges. In: Watermeyer B, Swartz L, with the integration of non-traditional health workers into Lorenzo T, Schneider M, Priestley M, editors. Disability and rehabilitation services, and to facilitate attitudinal change social change: A South African agenda. Cape Town: Human among professionals.20 Sciences Research Council Press; 2006. p. 273-90. 10. Townsend R. The perspectives of health care Include peer supporters in undergraduate training professionals on the value of peer mentoring during programmes: The participation of persons with disabilities rehabilitation. J Peer Learn. 2013;6(1):5. and parents of children with disabilities in undergraduate training programmes for all health professionals, combined 11. Hoagwood KE, Cavaleri MA, Olin SS, et al. Family with meaningful interaction with well-functioning peer- support in children’s mental health: A review and synthesis. supporter programmes, will expose undergraduates to the Clin Child Fam Psychol Rev. 2010;13(1):1-45. lived experiences of clients they will encounter as newly 12. Hoffmann DD, Sundby J, Biering-Sørensen F, Kasch H. qualified therapists. Learning to listen to and learn from non- Implementing volunteer peer mentoring as a supplement to traditional experts will surely assist in ensuring that future professional efforts in primary rehabilitation of persons with rehabilitation services are more inclusive, effective and spinal cord injury. Spinal Cord. 2019;57(10):881-9. relevant. 13. Hernandez B, Hayes E, Balcazar F, Keys C. Responding to the needs of the underserved: A peer-mentor approach. SCI Psychosoc Pro. 2001;14(3):142-9. References 14. Veith EM, Sherman JE, Pellino TA, Naoko YY. Qualitative analysis of the peer-mentoring relationship among individuals with spinal cord injury. Rehabil Psychol. 1. Krug E, Cieza A. Strengthening health systems to 2006;51(4):289-98. provide rehabilitation services. Neuropsychol Rehabil. 2019;29(5):672-4. 15. Bray L, Carter B, Sanders C, Blake L, Keegan K. Parent-to-parent peer support for parents of children with 2. Iemmi V, Blanchet K, Gibson LJ, et al. Community-based a disability: A mixed method study. Patient Educ Couns. rehabilitation for people with physical and mental disabilities 2017;100(8):1537-43. in low-and middle-income countries: a systematic review and meta-analysis. J Dev Effect. 2016;8(3):368-87. 16. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. 3. McDaid D, Park AL, Gall A, Purcell M, Bacon M. Dev Med Child Neurol Suppl. 2007;109:8-14. Understanding and modelling the economic impact of spinal cord injuries in the United Kingdom. Spinal Cord. 17. Kakooza-Mwesige A, Andrews C, Peterson S, 2019;57(9):778-88. Mangen FW, Eliasson AC, Forssberg H. Prevalence of cerebral palsy in Uganda: a population-based study. Lancet 4. Tonmukayakul U, Shih ST, Bourke-Taylor H, et al. Glob Health. 2017;5(12):e1275-82. Systematic review of the economic impact of cerebral palsy. Res Dev Disabil. 2018;80:93-101. 18. Zuurmond M, O’Banion D, Gladstone M, et al. Evaluating the impact of a community-based parent training 5. Levy BB, Luong D, Perrier L, Bayley MT, Munce SAP. programme for children with cerebral palsy in Ghana. PloS Peer support interventions for individuals with acquired One. 2018;13(9): e0202096. brain injury, cerebral palsy and spina bifida: a systematic review. BMC Health Serv Res. 2019;19:288. 19. Gondim SM, Bendassolli PF. The use of the qualitative content analysis in psychology: A critical review. Psicol 6. Dambi JM, Jelsma J, Mlambo T. Caring for a child with Estud. 2014;19(2):191-9. Cerebral Palsy: The experience of Zimbabwean mothers. Afr J Disabil. 2015;4(1):168. 20. Mayers P, Duncan M. The Network: Towards Unity for Health (TUFH) and the South African Association of 7. South African National Department of Health. Health Educationalists (SAAHE), Johannesburg; September Framework and Strategy for Disability and Rehabilitation 2015. Poster: Partnering for change: health therapists and Services in South Africa: 2015-2020. Pretoria: NDoH; 2015. community rehabilitation workers. Available from the Higher 8. Lang R. Empowerment and CBR? Issues raised by Certificate in Disability Studies, Division of Disability Studies, the South Indian experience. In: Stone E, editor. Disability Department of Health and Rehabilitation Sciences, Faculty and development: Learning from action and research on of Health Sciences, University of Cape Town. disability in the majority world. Leeds: The Disability Press; 1999. p. 130-48.
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Community-based peer supporters for persons with disabilities: experiences from two training programmes 97 REVIEW 10 Early childhood intervention: the Gauteng experience
ECI is defined as the experiences, Authors Sadna Baltoni opportunities, support and resources Annika Vallabhjeei Elma Burgerii provided to children with developmental delays, disability, and those who may develop delays due to biological or environmental factors.
In 2010, the Rehabilitation Sub-Directorate of the Gauteng stakeholder engagements were held with other government Department of Health started a consultative process on departments, universities, advocacy groups and non-profit early childhood intervention (ECI) to address the challenges organisations. Capacity building for practitioners was set experienced by children and their families in accessing at two training workshops per year and a biennial ECI services in the province. As a result of the expressed conference. need for improved coordination and leadership of ECI, a provincial multidisciplinary workgroup was formed that The ECI workgroup also aimed to improve access to included a variety of healthcare professionals as well as resources for the provision of ECI services in the province. representatives with expertise and interest from other This has been facilitated by the development of brochures government departments and universities. The workgroup on child development for caregivers of young children, a prioritised a few key areas. These included providing biannual newsletter, as well as updates on local and global ECI training for professionals, improving inter-sectoral initiatives and practice for healthcare professionals. collaboration, and at a higher level, motivating for the inclusion of ECI in provincial policy directives to include The chapter outlines the challenges experienced in the adequate budgeting, human resource allocation, and the implementation of ECI in Gauteng, and recommendations are development of tools for monitoring and evaluation. Various made for a way forward.
i Department of Speech Therapy and Audiology, Chris Hani Baragwanath Academic Hospital ii Gauteng Department of Health
Click to navigate Early childhood intervention: the Gauteng toexperience Contents 99 • The 2015 National Integrated Early Childhood Introduction Development Policy recognises ECI as one of the priority areas for young children.18 Childhood is a critical period in the development of human and social capital.1 International governments as well as The commitment to ECI is also echoed at provincial level. human rights and development organisations have led a Sub-programme 4.2.5 of the Gauteng Health Department’s global call for all young children to have access to quality (GHD) Annual Perfomance Plan 2018/19-2020/21 commits to 19 services that improve their health, nutrition, learning and reducing perinatal and neonatal morbidity and mortality. A 20 emotional well-being. The environment and experiences situational analysis of disability in South Africa done in 2011 provided for young children and their families affect not found that there were approximately 243 000 children with just the developing brain but also many other physiological disabilities between the ages of 0 and 4 years. systems.2 Early childhood intervention (ECI) is defined as the experiences, opportunities, support and resources provided Gauteng is the fastest-growing province in South Africa, with to children with developmental delays, disability, and those a population of 14 million people, of whom approximately who may develop delays due to biological or environmental four million are children. It accounts for the largest share 21 factors.2-5 ECI also focuses on providing informal and formal of the South African population. Forty-nine per cent of social networks that support family patterns of interaction, children live with both parents, and at least 21% live in 22 promote child development outcomes, and facilitate family overcrowded homes. In 2018, 2.1 million South African functioning and well-being.3,4 children lived in homes that reported child hunger, with one-fifth of this number living in Gauteng.23 By the end South Africa has demonstrated its commitment to realising of March 2019, there were more than 630 000 child 24 children’s rights at the highest political level by ratifying beneficiaries of the child support grant in Gauteng. the United Nations (UN) Convention on the Rights of the Child,5 the African Charter on the Rights and Welfare of the Young children with disabilities often miss out on Child,6 and the UN Convention on the Rights of Persons with intervention services and family support in the first few 25 Disabilities,7 as well as the Sustainable Development Goals.8 critical years of life. This can lead to their difficulties Section 28 of the South African Constitution provides becoming more severe, often leading to lifetime children with an unqualified right to basic shelter, health consequences, increased poverty and profound 26,27 services, nutrition and social services.9 exclusion. Early identification and initiation of treatment have been shown to improve child outcomes; however, the The following policies support the focus on children in under-identification of children with disabilities in South 27-29 South Africa: Africa is of concern. The earlier a child is identified as • The National Health Act (No. 61 of 2003) makes having a developmental delay or disability the greater the 28 provision for free healthcare and assistive devices to likelihood that the child will benefit from intervention. children under the age of six years.10 The only developmental surveillance or screening tool 29 • The Children's Amendment Act (No. 17 of 2016) takes implemented nationally in South Africa is the RTHB, which 30 into consideration a number of aspects that relate to was revised in 2018. However, optimal use of the RTHB, child health, development and disability.11 especially for developmental monitoring, is dependent on • The first 1 000 days of life is increasingly recognised knowledge and co-operation among mothers, caregivers 30-32 as a period of opportunity for the foundation of optimal and healthcare workers implementing the tool. health and development across the lifespan.12 In addition to the re-launch of the Road-to-Health Booklet (RTHB) in 2018, the national under-5 Side-by-Side campaign has strengthened the National Department of Health's Establishing the work group (NDoH) focus on child development.13 • The planned National Health Insurance (NHI) looks at In 2010, the ECI workgroup was established under the improving access to health care for children and their leadership of the Rehabilitation Sub-Directorate of the 14 families. GDH. The workgroup members include representatives • The 2015 White Paper on the Rights of People with from the Rehabilitation Sub-Directorate, therapists working Disabilities, specifically Strategic Pillar 4, emphasises the in the public health sector (Audiology, Speech Therapy, empowerment of children, women, youth and persons Physiotherapy, Occupational Therapy, Dietetics, Podiatry, 15 with disabilities. and Social work), and representatives from some academic • The NDoH Framework and Strategy for Disability institutions. Initially, workgroup membership was voluntary, and Rehabilitation 2015-2020 (FSDR) aims to provide but today interested parties must submit their curriculum accessible, affordable, appropriate and quality vitae and a letter of motivation for review and acceptance. rehabilitation services throughout the life course.16 • The National Development Plan 2030 identifies the The workgroup has approximately four to six meetings and 17 importance of ECI. a strategic planning session annually. The latter includes a
100 South African Health Review 2020 SWOT (Strengths, Weaknesses, Opportunities and Threats) should therefore be an integral part of all clinical contact and analysis, a review of the year’s activities, and planning for planning and should be included routinely in the training of the following year. In 2018, as part of the strategic planning all healthcare workers.37 Therapists within the province have process, a terms-of-reference document was developed to repeatedly expressed their concern about children being improve commitment and accountability. Appointment letters referred too late for effective intervention. ECI services for clarifying the responsibilities of each member are accepted young children in Gauteng remain fragmented and, where by the Deputy Director for Rehabilitation. The terms-of- present, are often of variable quality. The guide-to-getting- reference document has had a positive effect, with improved started document recommended strategies to improve early attendance at meetings and increased accountability in identification and establish effective referral pathways. planning and implementing workgroup activities. Intersectoral collaboration The workgroup held a consultative planning workshop Intersectoral collaboration enhances interventions that in 2011 and identified the following key concerns in the aim to improve child well-being and address the social province: determinants of health.40,41 Historically, services in early • Lack of governance and leadership childhood have been fragmented between health • Late identification and referrals and education systems.28,42 Collaboration between • Intersectoral collaboration different government departments requires political • Capacity building. direction, initiation and coordination. The workgroup therefore recommended that the Office of the Premier Lack of governance and leadership be the custodian of ECI services in the province. This According to the World Health Organization’s health systems recommendation has however not been actioned by the strengthening framework, leadership and governance form Office of the Premier. Intersectoral collaboration creates the first building block in ECI.33 Leadership needs to: ensure a framework to promote ECI.33,42 The ECI workgroup held that a policy framework is available, facilitate collaboration various stakeholder engagements with other government across sectors, provide an overall vision for an ECI service departments and ECI partners, namely the Department of model, and ensure effective leveraging of resources across Social Development, oral health practitioners, district clinic sectors.33-35 Those leading and managing health systems are specialists, obstetricians, paediatricians, nurses, universities, often not adequately prepared, and leadership efforts often advocacy groups and non-profit organisations. These do not produce the desired outcomes.36 engagements have mainly aimed to improve understanding of the role of various stakeholders in strengthening referrals The consultative process of the workgroup revealed lack and increasing utilisation of community-based resources. of clarity regarding custodianship of ECI in the province. There was also no guidance on ECI implementation. The Capacity building workgroup therefore identified the need for an ECI policy Healthcare workers are primarily trained in the treatment and a strategy to facilitate integration of ECI principles into of acute childhood illness, often with limited sensitisation daily practice in the public sector. Over the past 10 years, the or training in holistic child development or recognition of ECI workgroup has frequently discussed the development neurodevelopmental delays.37 This sentiment has been of a provincial ECI policy. The policy was first drafted in 2010 expressed by participants at workshops and conferences and underwent a number of revisions before submission to in the province. The field of ECI has long been recognised the Head of the GHD in 2018. The workgroup is still awaiting for its interdisciplinary service delivery to infants, young approval and finalisation. children and their families. However, there are no consistent standards or competencies to guide the different disciplines The urgent need expressed by therapists for assistance in to jointly implement common areas of ECI practice.43 The implementing ECI led to the development of an intervention workgroup conducted an email survey to determine the framework. A “Guide to getting started” document was services available at all levels of care, as well as the training developed in 2012. It focused on enabling ECI services needs of therapists in the public health sector. The lower- to empower parents and caregivers to be the primary than-desired response rate (57%) could be attributed to facilitators in their child’s development. The document also lack of internet access and poor communication structures provides key principles and recommendations on how to within facilities. Telephonic interviews were conducted establish and sustain ECI programmes within the public with therapists at sites that did not respond initially, health service. which allowed information to be obtained from 96% of the institutions. The results showed that services were Late identification and referrals fragmented, facility-based, and entrenched within a medical A global strategy is needed to narrow the gap between early model of service delivery. identification and the increasing population of children with delays and disabilities.37 It has been indicated that the best Specific problems reported included families attending time to prevent conditions that could cause developmental multiple appointments (e.g. up to five appointments with difficulties and impact brain development is during infancy different professionals within a short period of time), poor and early childhood.38-40 Early identification and referral coordination of care, conflicting information provided to
Early childhood intervention: the Gauteng experience 101 families, and significant cost implications that resulted ECI services, developing and working in ECI teams, sharing in poor attendance. It was also reported that healthcare best practice models of ECI, setting up developmental centres were developing profession-specific resources in screening services, sharing of resources, networking and isolation, and that there was limited networking between collaborating with other stakeholders, understanding policy, departments and with community organisations. and referral pathways. These identified needs may also inform improvements that need to be addressed at a pre- Collaborative and coordinated teamwork has been identified service curriculum level. as best practice in ECI as it facilitates pooling and exchange of information, knowledge and skills, and working together Capacity-building activities facilitated by the ECI workgroup cooperatively.44,45 Collaboration and teamwork are critical include hosting workshops and conferences and developing to ECI, especially when addressing the diverse needs of and sharing resources. children with disabilities or those at risk for developmental delays.46 An integrated team approach is recommended to Workshops improve the efficiency and effectiveness of ECI services.28 The content of the workshops was planned in alignment with the identified training needs and developments in The following areas were identified as training needs at all the province. Figure 1 indicates the topics covered at the levels of service delivery: how to implement and improve workshops.
Figure 1: Topics covered in the ECI workshops, Gauteng 2010-2020
• What is early childhood • Presentations on the role of intervention? different professions in ECI, • Guidance on service e.g. social work, oral health, development in ECI podiatry, etc. • Family-centred intervention • Community resource mapping • Teamwork • Presentations by community I Co organisations f EC an lla o d n bo s e r e tw a l t ip o i c r o k n n i i n r g P
E
a
r t l y s i e d b e e n g c in ti ti ar c fic Sh a • Profiling the child with or at pr • Presentations focusing on ECI for developmental delay or ion programmes at different levels disability of service delivery in Gauteng • Integrated Management of Childhood Illness • Road To Health Booklet • Screening tools within the South African context
102 South African Health Review 2020 The workgroup has developed task sheets that clearly perspectives, and reported an improved morale and define the roles of members in implementing the workshop. motivation to understand and implement the link between The number of attendees at each workshop is restricted by research and practice in ECI. The last conference, held in the size of the venue available and the number of staff who 2019, highlighted ‘Research to practice in ECI: A South African can be released for the day. The workgroup has facilitated perspective’. The presenters shared screening tools validated 13 workshops from 2011 to 2020, with an average of 105 in the South African context, discussed the traumatic realities attendees at each workshop. The format has evolved of children described as intersex, contextualised ECI in South into a more participatory approach since its inception. Africa, and highlighted a number of clinical research initiatives The design includes a welcome address, an introduction undertaken at different institutions. At all three conferences, to the theme, and multiple presentations related to the presenters and attendees included varied professional theme. The participants are divided into smaller groups for groups, parents, non-profit organisations and academics. interdisciplinary team discussions, facilitated by members of the workgroup. The discussions have focused on case Child development brochures studies, which integrate the theory covered and tools The ECI workgroup has developed a series of pamphlets shared. Over the past three years, the workshops have focusing on children from birth to six years of age. The included a presentation by a parent or recipient of ECI pamphlets cover developmental milestones, ideas on play services, with the aim of sensitising healthcare workers to and stimulation activities for families, and developmental family-centred intervention. Participants have reported this warning signs. The pamphlets were piloted at two clinics in to be a valuable contribution in helping to change their Gauteng where therapists and patients provided feedback attitudes towards working with families. on the content and graphics. The main changes after piloting related to the content, which was changed to more Evaluation and conclusion of the workshop includes patient-friendly language. The graphics were deemed verbal feedback on how participants would apply the appropriate for the context. The pamphlets are currently information gained to their work context. Evaluation forms only available in English and will be translated when funding are completed at the end of each workshop to improve the becomes available. They have been shared electronically content and processes of future workshops. Themes that with all service sites in Gauteng and are available on have emerged from participants regarding implementation request from the Gauteng Rehabilitation Sub-Directorate. have included improved teamwork at facility level, better The pamphlets are being used in conjunction with the understanding of the role of other professionals, increased RTHB at well-baby clinics, neonatal follow-up clinics, and understanding of family-centred intervention, and increased developmental care talks to parents. use of the RTHB Integrated Management of Childhood Illness and A Guide for Monitoring Child Development.13,47,48 Biannual newsletter The newsletter was started in 2014 and includes educational The workgroup had a workshop planned for September information, patient journeys, advertisements on upcoming 2020. Due to COVID-19, this workshop was hosted on courses, and motivational pieces. The newsletter is shared an online platform and explored the continuation of ECI electronically with healthcare professionals working in the services during the pandemic at different levels of service field. delivery. The presentations focused on strategies employed by therapists, including, among others, telehealth. Additional workgroup activity The workgroup has been involved in advocating for the Conferences implementation and sustainability of effective ECI services. The task team has hosted three ECI conferences in Gauteng. Various members of the group have presented papers The conferences have provided a platform for therapists, on the Gauteng ECI experience in Sweden, Turkey and other health workers, academics and researchers to Kenya. A chapter on child disability and the family in the showcase their work in ECI. The first conference, in 2015, book Children in South African Families: Lives and times49 themed ‘Early Childhood Intervention – The South African was also published by team members in 2016. Workgroup experience’, included presentations on ECI practices in members have been invited to present to the ECI sector, Gauteng, the Western Cape, the Northern Cape and Kwazulu- profession-specific forums, and other organisations, e.g. Natal. The feedback from 100% of attendees indicated a UNICEF, the Child Health Priorities Conference, and the positive learning experience. They specifically highlighted National Rehabilitation Forum. These invitations to share the the variety of presentations and the combination of research experience of the workgroup indicate the value of the work and practice. Most (90%) of the attendees agreed that they being done. would be able to apply the new skills that they had learnt. The second conference in 2017, focused on ‘Strengthening During the COVID-19 pandemic, workgroup members Early Childhood Intervention’, and presentations covered have been sharing information on webinars in the field of intervention in the neonatal population, strengthening ECI ECI as well as resources for children and their families. A services through stakeholder engagement, partnering with questionnaire has been distributed to institutions about the parents, patient-centred care, and ensuring the well-being type of services being offered to children and their families, of therapists. Attendees highlighted the value of multiple as most institutions have limited outpatient services.
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106 South African Health Review 2020 REVIEW 11 Communication vulnerability in South African health care: the role of augmentative and alternative communication
The term ‘communication vulnerability’ Authors Kirsty Bastablei covers long-term communication Shakila Dadai disabilities, temporary communication disabilities (e.g. while on ventilation), language disparities, cultural differences, and low literacy levels.
The right to health is enshrined in the South African A systematised review was done of the recent literature on Constitution, yet in the presence of communication use of AAC for persons with communication vulnerability in vulnerability, equal access to health care of acceptable the healthcare system. The review identified 24 studies, half quality is frequently not realised. Individuals with of which reported on the perceptions of AAC training, use, communication vulnerability are at risk for decreased or systems. Most studies included health professionals as participation in the healthcare system, leading to increased participants. The studies reported positive perceptions of risk of lack of treatment adherence and adverse events. AAC among healthcare professionals, and the effectiveness of both low- and high-technology AAC in intensive care, The term ‘communication vulnerability’ covers long-term general health care, and dental health care. The effectiveness communication disabilities, temporary communication of unaided and low-technology AAC is most promising for disabilities (e.g. while on ventilation), language disparities, South Africa. The results of the studies are considered in the cultural differences, and low literacy levels. A possible context of the South African healthcare system, and policy, mechanism to reduce the effect of communication management and practitioner-level recommendations are vulnerability in the healthcare context is the use of suggested for the implementation of AAC. augmentative and alternative communication (AAC). AAC uses a range of techniques to supplement language comprehension and replace speech, and may also assist persons with disabilities to express their healthcare needs.
i Centre for Augmentative and Alternative Communication, University of Pretoria
Click to navigate Communication vulnerability in South African health care: the role of augmentative and alternative communicationto Contents 107 In the absence of mutual communication, declines are seen Introduction in treatment adherence and outcomes,17 empowerment, and participation in health care.18 Health care is a fundamental right.1 This includes access to basic and preventive health care, rehabilitation, physical and Communication vulnerability in health care is not limited psychosocial support, and health care that is acceptable and to individuals with established disabilities such as speech, of good quality.2 language, hearing, cognitive or visual impairments. Temporary communication vulnerability also arises when In South Africa, individuals with disabilities face barriers a person is intubated or ventilated, such as during the 15,16 when accessing health care, for example, challenges COVID-19 pandemic, or when s/he has had a tracheostomy, with transport and access to buildings, and disparities a stroke, or traumatic brain injury (among other conditions). in the quality of services received compared with peers Although temporary communication vulnerability may without disabilities.3-8 In particular, these individuals face resolve, the person’s immediate communication needs 7,8,19,20 higher risks in relation to healthcare quality and safety,9-13 cannot be ignored. Disparities in language between with preventable adverse events reported three times the individual and the health professional may also result in 3,21-23 more frequently than for peers without communication communication vulnerability. Similarly, individuals with vulnerability.8,11,14,15 This chapter aims to identify strategies cultural, ethnic, gender, sexual or religious diversity (cultural that could facilitate communication participation among and linguistic diversity (CALD)), and individuals with low 24 individuals with communication vulnerability in the South literacy may experience communication vulnerability. For African healthcare system. these individuals, both understanding and expression may be impacted, particularly in relation to asking questions and 21,24 Where communication is difficult, the caring philosophy expression of concern and consent. of healthcare professionals can be eroded, and physical- based care can replace psychosocial and communication- Augmentative and alternative communication (AAC), based care.16 A physical care philosophy increases reliance however, provides a range of techniques and resources that 24,25 on objective assessments and decreases communication facilitate non-functional communication. AAC includes with the individual.16 However, best practice in health aided techniques (alphabet boards, picture communication management supports the sharing of information between boards, picture-supported text, and speech-generating providers and individuals, in a “process of mutual influence devices (SGDs) (Figure 1), as well as unaided techniques 26 among people, where information serves as the content”.16 (including gestures and signs from sign language).
Figure 1: Examples of AAC tools
Picture communication board27 Alphabet board
Eye gaze board Pain scale board
108 South African Health Review 2020 According to researchers in the field, use of AAC in This review included AAC interventions among individuals health care can decrease the need for sedation and time with communication vulnerability or their healthcare in intensive care28 (thus reducing strain on the health professionals, in healthcare settings. Perceptions of health system during times such as the COVID-19 pandemic), care not related to AAC intervention, and experiences improve treatment adherence,25 and increase patient independent of AAC intervention, were excluded. Search satisfaction15,24,25,28,29 and feelings of empowerment terms and databases were identified using the population, associated with increased participation in health care.29 intervention and outcomes methodology,31 followed by piloting. The reference lists of included articles were also In South Africa, a minimum of two and a half million people hand searched. Title and abstract screening, and full-text are at risk for communication vulnerability in the healthcare screening were conducted by both authors independently. system,6 and many additional individuals encounter Disagreements were discussed until consensus was language disparities, CALD, and literacy difficulties. Yet, reached. Reliability of 97% was found for the title and recent reviews on the use of visual communication aids abstract, and 100% at full-text level. Quality screening among individuals with low literacy levels found few studies of studies was conducted using the National Service from low-and middle-income countries.25,a Framework for long-term conditions;32 this was done by the first author and confirmed by the second author (100% This chapter aims to highlight evidence-based agreement). Studies of poor quality were excluded. recommendations for the health care of individuals with communication vulnerability, with a view to informing policy Twenty-four articles were identified for review: 20 from high- and practice in South Africa. A systematised review was income countries and four from middle-income countries done to identify the existing literature on AAC interventions (Botswana 1, India 2, and Brazil 1). Data were extracted and in health care. The results and recommendations are synthesised using thematic analysis.33 Themes relating to presented in relation to the South African context. where the intervention occurred (e.g. intensive care, dental care), or with whom (e.g. adults with amyotrophic lateral A systematised review has a narrow but detailed focus, sclerosis (ALS), children), and the type of AAC implemented, rather than the broad overview of a scoping review.30 It are reported in Table 1 below. Additional themes relating to has similar search and quality-evaluation processes to perceptions of AAC, and the effects and type of AAC, are a systematic review, but can be applied where a limited reported in key findings. number of studies preclude statistical synthesis and meta- analysis.30
Table 1: Type of AAC intervention and results
Type of AAC Intervention Results
Communication in the ICU
LT-AAC Training of ICU nurses in AAC.34,35 Nurses reported:
• Increased knowledge, skills and confidence. • A need for management support. • An appreciation of AAC. • Attitude changes. • The need for ongoing skill sharing.
HT-AAC Introduction of HT-AAC to patients in Patients reported that: the ICU and clinical staff.36-38 • HT-AAC was significantly better than no access. • Pre-programmed messages were most successful, but additional strategies were needed as time progressed. • The device was often placed out of reach.
Nurses reported that:
• The app was easy for nurses and patients to use. • The app facilitated patient communication.
a Mbanda N, Dada S, Bastable K, Gimbler-Berglund I, Schlosser RW. A scoping review of the use of visual aids in health education materials for persons with low-literacy levels. Manuscript submitted for publication.
Communication vulnerability in South African health care: the role of AAC 109 Type of AAC Intervention Results
LT-and HT-AAC Training of ICU nurses.39-41 Researchers reported an:
• Increase* in communication acts. • Increase* in clarification acts. • Increase* in successful communication of pain. • Increase* in the quality of positive communication from nurses.
Nurses reported that:
• Challenges were related to patient fatigue, cognitive impairment, reduced muscle strength, time constraints, and the limited number of staff trained. • AAC was not always necessary. • The best way to facilitate communication was through a systematic strategy initiated by the nurse. • Training was helpful for basic communication strategies, but advanced strategies were not always useful.
Communication in general healthcare settings
LT-AAC Training of nurses/EMS personnel.42,43 EMS personnel and nurses reported:
• Increased confidence communicating with individuals with communication vulnerability. • That the supports were helpful and needed.
HT-AAC Information videos and pictorial Patients reported: supports.44-46 • Increased knowledge, skills and satisfaction. • Concerns regarding information access and security on electronic devices. • That a visual application can provide fast, intuitive communication options in emergency situations.
Communication and compliance in dental health care
Unaided AAC Training of dentists in sign language.47 Researchers reported:
• An increase* in understanding after training.
LT-AAC PECS visual schedule provided to Researchers reported: children with ASD.48 • An increase in the number of steps, and speed of completion when PECS was used. • Lower levels of distress when PECS was used.
LT-and HT-AAC Pre-dental visit information provision Researchers reported: for children with special needs, HT- and LT-AAC.49 • Improvements* in behaviour and dental health care when either HT- or LT-AAC were used. A comparison of PECS and HT-AAC • Children using HT-AAC acquired skills faster. for visual schedule presentation to children with ASD.50
Communication for individuals with neurological impairments
Unaided AAC KWS training for caregivers.51 Researchers reported that:
• Direct training resulted in increased* use of keyword signing and was more accurate than secondary training. • Attitude did not correlate with KWS usage.
110 South African Health Review 2020 Type of AAC Intervention Results
HT-AAC HT-AAC implementation.52,53 Researchers reported that:
HT-AAC device training remotely for • Participants were able to use and enjoy the HT-AAC systems facilitators.54 in various situations. • Facilitators were successfully trained using the remote training programme.
Anxiety and behaviour management for children
LT-AAC Symbol-supported story intervention Nurses reported: prior to intervention to explain procedures.55-57 • Use of the LT-AAC as a positive distraction during procedures. • Anxiety reduction, behaviour calming and increased co- operation during assessments and procedures. • An objective measure of cortisol levels did not show differences with the use of the LT-AAC, but methodological challenges were reported.
* A significant difference was reported in the study. ASD = autism spectrum disorder; EMS = emergency medical services; HT-AAC = high-technology-aided AAC; ICU = intensive care unit; KWS = key word signing; LT-AAC = low-technology-aided AAC; PECS = picture-exchange communication system.
High- or low-technology AAC Key findings Studies comparing the efficacy of low-technology AAC (PECS, symbol-supported stories) and high-technology AAC (iPad apps, interactive videos), reported that high-tech AAC The interventions in this review were implemented in the was more effective than low-tech AAC in the ICU40 and ICU,34,35,37-41 general health care settings,55–57 and in pre- dental health clinics.49,60 However, the studies also reported hospital EMS.42 The studies primarily targeted nursing that low-tech AAC was more effective than no AAC.39,49 staff for training in the use of AAC.34,35,38-40,55,58,59 One study considered the efficacy of remote training for AAC facilitators.54 Other interventions focused on information sharing,43,46 and patient-provider communication44,45 with Discussion individuals with communication vulnerability. Communication also targeted individuals with amyotrophic lateral sclerosis52,53 AAC could improve communication in health care for or intellectual disabilities.51 Four studies concluded that AAC persons with communication vulnerability. However, for improved the compliance of and communication with children communication to be enhanced through AAC it is imperative who were deaf,47 or who had autism spectrum disorder,48,60 or that mutual sharing of information be facilitated.21 Studies in special needs,49 during dental health care. this review reported on the success of mutual information sharing across settings and types of AAC.36,43-45,47-49 The Perceptions of AAC results were primarily from high-income countries, and half of Perceptions of high-and low-technology AAC were positive the studies reported only on perceptions of AAC. Although in 12 studies. Nurses reported increased confidence in using perceptions of healthcare professionals and users can AAC to communicate with patients.34,35,38-43,55 Dependence influence the success or abandonment of an AAC system,61 on management support and lack of time were identified as further clarity on the efficacy of interventions is required. barriers to the use of AAC.41 Similarly, individual limitations were identified, including fatigue and low levels of This review highlighted the ongoing challenge of alertness.34,37,40,41 physical care taking precedence over psychosocial and communication care, as doctors and rehabilitation Effects of AAC professionals (who set the tone for patient care62,63) were Use of AAC increased compliance and decreased found to be largely excluded from AAC training and distress among children with special needs during dental studies. In South Africa, where systemic challenges also procedures,48,49,59 but was inconclusive in a day hospital include ineffective communication and financial and staff setting.55-57 Studies involving adults with communication shortages,64 the support of management is particularly vulnerability provided evidence of successful use of high- relevant, as the pressure exerted on the system drives technology AAC among participants.36,37,52,55 behaviour in the system. For example, limited staff reduces the time available for each patient and may lead to a physical care focus.16,34,37,40,41
Communication vulnerability in South African health care: the role of AAC 111 This review also highlighted successful training in basic sharing and understanding of information between communication skills36,39 using low- and high-tech AAC,34,35,42 individuals with communication vulnerability and healthcare but emphasised the need for ongoing training,35 supported professionals, leading to improved participation in health by communication professionals.41 care, better health outcomes, and increased empowerment. Nevertheless, this recommendation is made with the caveat In the South African setting, basic communication skills that communication varies across cultures, which may training could be conducted and supported by speech or impact the perception of symbols66 or the acceptability of occupational therapists who have received AAC training, an AAC system, hence a one-size-fits-all model cannot be and these interventions should include a range of unaided applied in South Africa. and low-tech AAC strategies.37,39-41 Unaided and low-tech AAC interventions have been found to be effective in improving patient-provider communication47-49 and require generic materials that are cost-effective and available in Recommendations on use of AAC most healthcare settings (e.g. pen and paper, a printer, photographs or real objects). in the South African healthcare setting Although resource-friendly unaided low-tech AAC may be preferred in South Africa, higher-efficacy high-tech AAC37,39,41 The following recommendations were developed in should not be overlooked. Specifically, the efficacy of alignment with the results of the systematised review and universal technology (e.g. commercially available tablets the mission of the National Department of Health, namely or phones) and downloadable applications has been to facilitate the development of a culture of communication highlighted.38,40,46 Approximately 51% of South African adults participation in health care.67 Management/leadership are reported to own a smart phone.65 Hence it may be recommendations are given in Table 2, and provider feasible to implement high-tech AAC with an individual’s education recommendations in Table 3. It is recommended personal phone/tablet, which s/he can then take home. that individuals with communication vulnerability be included Use of an individual’s personal device may be particularly in all stages of training and implementation. applicable for individuals with permanent communication vulnerability. Conversely, the suitability of applications needs to be considered, as most are in English and are developed Policy recommendations It is recommended that national policy be developed in high-income countries. on communication vulnerability and the facilitation of communication participation in health care. This should help In South Africa, training of professionals in the use of to guide budget and resource allocation. AAC and the provision of materials with AAC supports (e.g. picture communication) could increase the mutual
112 South African Health Review 2020 Management/leadership recommendations
Table 2: Management/ leadership recommendations – AAC implementation
Aims Personnel Intervention
Institutional level
Facilitate a Healthcare facility management: Training on communication vulnerability: culture of financial, medical, nursing, allied communication. health professional, communication, • Who has communication vulnerability? patient-care and support-service • Risk of adverse events, treatment adherence, participation. managers. Staff to drive the culture of communication.
Needs identification for AAC:
• Training • Materials • Support • Local languages and cultures • Specialised units (ICU,16 paediatric ICU (PICU),68 surgical,15 neurological24).
Allocation of budget.
Unit level
Provide training Unit management, healthcare Direct (in person) basic communication skills training with all staff and a support professionals and support services. (all shifts). system to grow the culture of All staff who come into contact with Identification of an individual to lead AAC implementation, communication. patients in the unit. Medical doctors encouraging others and ensuring availability of materials (liaise with should be trained with their unit. management).
Unit guidelines:
• Who determines communication vulnerability? • How will this be recorded? • Where will materials be stored? (in and out of use)
Identification of a clearly defined communication support and referral process.
Evaluation of training and future needs identification.
Practitioner recommendations Costello68 describe three phases of AAC need. An additional The aim of AAC is “to facilitate communication through ‘pre-need’ phase has been added here. The phases are a systematic communication strategy”.38 Santiago and described in Table 3.
Communication vulnerability in South African health care: the role of AAC 113 Table 3: Practitioner recommendations – AAC education
Phase 1: Pre-need identification of at-risk individuals, and communication needs assessment Communication needs: Training in AAC tools; AAC resources; recording tools for current preferences and needs.
Screen all individuals on entry to the units for communication vulnerability risks, including:
• Established communication vulnerability (e.g. ASD, ALS). • Acute-onset speechlessness (e.g. neurological conditions, pulmonary or airway disease, trauma, spinal injury). • At risk (e.g. postoperative intubation or tracheostomy, head and neck surgery). • Individuals with CALD (e.g. language disparities, low literacy). • Individuals receiving palliative care and end-of-life support.
Identify communication needs:
Current AAC user:
• What is the individual’s current communication system? How will the individual access his/her system in the healthcare setting? For example, direct access, partner-assisted scanning, eye gaze, switch access. • Ensure that this communication system is noted and available in the ward.
User at risk for short-term communication disability:
• Introduce individuals to AAC and train them in the use of the system that will be available when they are unable to speak. • Discuss communication preferences with individuals and their families. • Identify additional needs the individual might want to communicate, but that are not available on the standard board. • Adapt the communication board to meet those needs.
Phase 2: Emerging from sedation Communication needs: To gain attention. AAC for basic communication, and an option to indicate ‘what I want to say is not here’.
Ensure that individuals are able to communicate the following needs:
• Gain attention, e.g. a communication button or noisemaker. • Express yes/no answers to basic questions. • Express pain. • Express basic needs.
Phase 3: Increased wakefulness Communication needs: Extend communication boards, including mechanisms to format individual communication options or topics.
Provide for:
• More complex communication with healthcare providers using symbols and text. • Communication with family, expression of personality, including humour and non-medical communication.
Phase 4: Diverse and broad communication access Communication needs: A complex communication system including multiple modes of communication and the ability to create and use novel messages independently.
A broad communication system is able to support communication across multiple life situations and includes:
• Broad vocabulary. • Multiple pages. • A range of communication topics. • Individuals may have multiple systems for use across different settings. • Access methods may change across different environments and over time as a person becomes fatigued.
Limitations of the review A further limitation was use of studies from high-income Limitations of this review include use of a limited date countries to guide the development of recommendations range for the search, and restriction on chapter length. for South Africa.
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116 South African Health Review 2020 53. Lancioni GE, Simone IL, De Caro M, et al. Assisting 61. Moorcroft A, Scarinci N, Meyer C. A systematic review persons with advanced amyotrophic lateral sclerosis in of the barriers and facilitators to the provision and use of their leisure engagement and communication needs with low-tech and unaided AAC systems for people with complex a basic technology-aided program. NeuroRehabilitation. communication needs and their families. Disabil Rehabil 2015;36(3):355-65. Assist Technol. 2019;14(7):710-31. 54. Quinn E, Beukelman D, Thiessen A. Remote instruction 62. Agaronnik N, Campbell EG, Ressalam J, Iezzoni LI. of potential AAC support personnel. Perspect Augment Communicating with patients with disability: Perspectives of Altern Commun. 2011;20(3):97-101. practicing physicians. J Gen Intern Med. 2019;34(7):1139-45. 55. Drake J, Johnson N, Stoneck A V, Martinez DM, 63. Gilmore M, Sturgeon A, Thomson C, et al. Changing Massey M. Evaluation of a coping kit for children with medical students’ attitudes to and knowledge of deafness: a challenging behaviors in a pediatric hospital. Pediatr Nurs. mixed methods study. BMC Med Educ. 2019;19(1):227. 2012;38(4):215-21. 64. Abrahams N, Gilson L, Levitt NS, Dave JA. Factors that 56. Nilsson S, Buchholz M, Thunberg G. Assessing influence patient empowerment in inpatient chronic care: children’s anxiety using the Modified Short State-Trait Early thoughts on a diabetes care intervention in South Anxiety Inventory and talking mats: A pilot study. Nurs Res Africa. BMC Endocr Disord. 2019;19(1):1-11. Pract. 2012;2012:1-7. 65. Silver L, Johnson C. Majorities in sub-Saharan Africa 57. Thunberg G, Törnhage C-J, Nilsson S. Evaluating the own mobile phones, but smartphone adoption is modest. impact of AAC interventions in reducing hospitalization- Pew Research Center, Global Attitudes & Trends; 9 October related stress: Challenges and possibilities. Augment Altern 2018. URL: https://www.pewresearch.org/global/2018/10/09/ Commun. 2016;32(2):143-50. majorities-in-sub-saharan-africa-own-mobile-phones-but- smartphone-adoption-is-modest/. 58. Radtke JV, Baumann BM, Garrett KL, Happ MB. Listening to the voiceless patient: Case reports in assisted 66. Blake Huer M. Examining perceptions of graphic communication in the intensive care unit. J Palliat Med. symbols across cultures: Preliminary study of the impact of 2011;14(6):791-5. culture/ethnicity. Augment Altern Commun. 2004;16(3):180-5. 59. Holmqvist E, Thunberg G, Dahlstrand MP. Gaze- 67. South African National Department of Health. Vision controlled communication technology for children with and mission; 2020. URL: http://www.health.gov.za/index.php/ severe multiple disabilities: Parents and professionals’ shortcodes/vision-mission. perception of gains, obstacles, and prerequisites. Assist 68. Santiago R, Costello JM. AAC Assessment and Technol. 2018;30(4):201-8. intervention in pediatric ICU/acute care: From referral 60. Zink AG, Diniz MB, Rodrigues dos Santos MTB, through continuum of care. Perspect Augment Altern Guaré RO. Use of a picture exchange communication Commun. 2013;22(2):102-11. system for preventive procedures in individuals with autism spectrum disorder: pilot study. Spec Care Dent. 2016;36(5):254-9.
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Communication vulnerability in South African health care: the role of AAC 117 REVIEW 12 Assistive technology service delivery in South Africa: conceptualising a systems approach
Current evidence indicates that assistive Authors Surona Visagiei technology services are inequitable, Elsje Scheffleri Nikola Seymourii fragmented, and dependent on qualified Gubela Mjii individuals working in professional silos.
Assistive technology (AT) services and products are the core of AT services and explores the degree to which AT essential to many persons with impairments, as they enable services are guided by dedicated policy. Current practice is participation in life roles and community integration. In described for people, products, provision, personnel, policy, South Africa, AT services are mainly provided through procurement, partnerships, promotion, pace, and place. the healthcare system, which means that with the The chapter also identifies social, historical, economic, implementation of National Health Insurance, the National and geographical influencers; responses to emergent Department of Health will be responsible for providing AT behaviours; and strategies for sustainable, resilient, and cost- services to the people of this country. Current evidence effective service delivery. indicates that these services are inequitable, fragmented, and dependent on qualified individuals working in National Health Insurance may be the catalyst needed professional silos. The aim of this chapter is to review AT to harness South Africa’s unique opportunities, strengths service provision in South Africa using a systems-approach and challenges to develop equitable, person-centred AT lens and to provide recommendations for future AT services. Under guidance of the National Department of services that build on current best practice strategies and Health, overarching, integrated, intersectoral policy must international best practice guidelines. be established for accessible, equitable, person-centred AT services. Product development and manufacturing must A systems approach to AT service delivery can facilitate be stimulated. Furthermore, a new-look provider corps and seamless, equitable provision across time and place. This training programmes must be developed. chapter describes the extent to which users are placed at
i Centre for Disability and Rehabilitation Studies, Stellenbosch University ii Occupational therapist in private practice
Click to navigate Communication vulnerability in South African health care: the role of augmentative and alternative communicationto Contents 119 To explore AT services on the eve of NHI, using a systems Introduction perspective, could assist in identifying strategies and solutions to address the many challenges impacting on AT Assistive technology (AT) services and assistive products service delivery. (AP) enhance function, participation in life roles, and community integration of persons with impaired body function and/or structure, such as persons with disabilities, the elderly, and persons with chronic conditions like HIV Systems and systems thinking and AIDS. Without appropriate AP they cannot access opportunities on an equitable basis as required by the Systems can be open or closed. In closed systems, such 1 Sustainable Development Goals and the South African as the physiological systems in the body, specific cells and 2-6 National Development Plan (NDP). The Framework and organs work together with little environmental interaction. Strategy for Disability and Rehabilitation Services in South Open systems, such as healthcare systems, are entrenched 7 Africa supports the NDP and provides a practical guide in their environments and are simultaneously dependent on for rehabilitation service delivery in the country, including and responsive to them. They are designed to interact with the provision of AP, with a view to facilitating social and and respond to the environment, with porous boundaries economic inclusion of persons with disabilities. that allow an exchange of information. Open systems are fluid, with practices, objectives and outcomes that can Currently, both healthcare and AT service provision in change over time.20 South Africa are delivered through a two-tiered health system (public and private), which is set to change with Systems thinking is dynamic, collaborative, and transcends 8 implementation of the National Health Insurance (NHI) Bill. disciplinary, organisational, departmental, and societal NHI “aims to achieve sustainable and affordable universal boundaries. A zoom-out approach is used that appreciates access to quality healthcare services” through “serving as the bigger picture, and patterns are observed over time. a single purchaser and single payer of healthcare services Relationships, their context, and the impact of interventions in order to ensure equitable and fair distribution and use must be understood. Interventions have complex up- and of healthcare services … by pooling of funds and strategic downstream effects that form part of the collective whole. purchasing of healthcare services, medicines, health goods “Every intervention, from the simplest to the most complex, and health related products from accredited and contracted has an effect on the overall system, and the overall system 8 healthcare service providers”. has an effect on every intervention”.21 To effect change, interventions can be implemented at different points or On implementation of NHI, the National Department of levels within the system. All interventions are monitored Health (NDoH) will remain a key provider of AT services and assessed, and findings are fed back into the system to to South Africans across their lifespan. However, the facilitate continuous improvement.20,21 Department’s readiness for this role raises concerns given that the NDoH currently provides healthcare services to 80% of the population but only meets between 25% and 65% of the total AP need.9-11 In addition to financial Assistive technology and constraints, there is great variation in AT provision among different provinces, between levels of healthcare, and assistive technology systems across geographical areas, with rural settings experiencing 10,12-14 the greatest challenges. Barriers in procurement and Terminology in the AT field is often used interchangeably delivery systems, inadequate integration of AT services, and defined in different ways. This chapter uses the 2018 fragmented services, inadequate AP knowledge among World Health Organization (WHO) definitions for AT and AP 12-16 service providers, and insufficient numbers of service as presented by Smith et al. (Box 1).22 providers,12-19 all hamper AT services in South Africa.
120 South African Health Review 2020 Box 1: Definitions of AT and AP Assistive technology (AT): “…application of organized the primary purpose of which is to maintain or improve knowledge and skills related to assistive products, an individual’s functioning and independence, including systems and services”.22 and thereby promote their well-being. AP are also used to prevent impairments and secondary health Assistive products (AP): “…any external product[s] conditions”.22 (including devices, equipment, instruments or software), especially produced or generally available,
Source: Smith et al., 2018.22
Conceptual framework by the WHO Global Cooperation on Assistive Technology The “10 ‘P’s for systems thinking in AT”20 will be used as (GATE)23 in the middle circle (Policy, Products, Personnel and a conceptual framework to explore AT services in South Provision); and five contextual elements in the outer circle Africa. The framework (Figure 1) has AT users (people) at (Procurement, Place, Pace, Promotion and Partnership). the centre; the four main strategic drivers of AT as identified
Figure 1: Conceptual framework – the 10 ‘P’s of systems thinking in AT
P ENT RO M MO RE T U IO C P N O Y RO R IC D P L U O C P T S
PEOPLE
P L P E L A R E C C O N A E V N P IS IO SO N PER
P ARTNERSHIP
Source: MacLachlan and Scherer, 2018.20
Assistive technology service delivery in South Africa: conceptualising a systems approach 121 People (users) and adjustment options to configure the product to optimise Existing and potential AP users are the reason for AT fit, function, and personalisation.26,34 Products should be services, and as such they are central to AT systems. Users affordable, and cost-effectively maintained. should drive AT systems from policy through to individual AP selection. Users are unique, and are distinguished from each South African providers and consumers often do not other by their specific impairment, context, culture and social recognise the value and quality of locally manufactured roles, and each must be empowered through a person- products, preferring imported products over local ones. centred process to identify appropriate AP. The AT system Thus where government tender specifications do not should remain responsive and adaptable to different life support local production, local suppliers often choose stages and changing requirements over the lifespan.20,24,25 imported products. However, imported products are Failure to deliver person-centred services can be linked to developed in HICs, so cost is usually high and design dissatisfaction with and non-use of AP.25 features may be unsuited to environmental and/ or cultural requirements such as language.26,35 Local Emerging person-centred service provision in South Africa product manufacturing capacity is limited, but innovative seems to depend on individual service providers rather development is present, such as in the wheelchair industry. than standard practice requirements.12,14,26 Still entrenched Appropriate local technology and leading designs will in the medical model, many AP users do not yet perceive address a wide range of individual functional, posture AT services as a right, and are passive recipients who support, and environmental needs at affordable costs in line feel obliged to be grateful for and satisfied with what they with ethical service-provision guidelines.36 receive.8,12 Despite stringent international standards for most products, Policy including local standards for mobility devices, these Using systems thinking, an overarching AT national policy standards are not enforced by the local product regulatory should link with policies across all sectors to facilitate body with regard to import, local manufacture, and trade of participation, function, and well-being. Most existing AT products. As a result, low-quality, cheap products are widely policies are found in high-income countries (HICs) and available in South Africa and often widely distributed by are based on global-North research and thus not directly vendors and well-meaning donors without input from trained applicable to low- and middle-income countries (LMICs) personnel or partnering with existing AT services. These such as South Africa.27 However, international AT guideline challenges lead to inappropriate provision that follows a documents28-32 developed by the United Nations and WHO one-size-fits-all approach, frequent breakdowns, and poor specifically consider LMIC contexts, so despite their global maintenance and repair of products.37 approach, these documents could guide countries to develop national policy. Personnel (service providers) In a systems approach, countries plan AT services around Although South Africa has no overarching AT policy, national availability of professionals, supplemented with alternate guidelines on the provision of assistive devices in the public models such as capacity building, task shifting, skills mix, health sector circa 200633 are fairly comprehensive and and remote support via e-methods.3,20,38 largely aligned with key elements of international AP service steps and guidelines. However, the national guideline lacks In South Africa, AT services are mainly provided through an intersectoral, person-centred approach. Furthermore, highly trained professionals operating in narrow professional based on the limited evidence available, awareness domains.5,16,26 Professional scope of practice and boundaries, and implementation of these guidelines are poor. These together with service roles, stringently define and regulate guidelines were also not included in undergraduate curricula service delivery, inadvertently limiting access and an integrated of healthcare professionals, who are currently the key AP approach, to the detriment of the user.16 The proposed service providers in South Africa.5 Health Professions Council AT position statement will further perpetuate the current status and is counterproductive to One of eight goals in the NDoH7 strategic plan for the task-shifting model proposed by the WHO and current rehabilitation includes improving access to appropriate healthcare reform. Healthcare reform and task shifting promote assistive devices/technology and accessories, with revision the widespread inclusion of mid- and grassroots-level workers of the 2006 guidelines by March 2017, and implementation at primary care level. Their responsibility includes the provision of the revised guidelines by March 2020. No revised of certain categories of AP. documents have been published yet. Service providers remain a homogeneous group consisting Products mainly of white females, or males in the case of orthotics In systems thinking, product range and variety are needs- and prosthetics, the majority of whom practice privately based, aligned with supply-and-demand data, and costs. in the more urbanised provinces of Gauteng, the Western Product specification and standards should reflect the Cape and KwaZulu-Natal.17-19 In addition to a shortage of physical and functional needs of users relative to their providers, especially in rural areas and among the poor, environment and culture,20 and offer adequate technical cultural and language barriers may prevent user-centred
122 South African Health Review 2020 services from reaching many members of South Africa`s procurement in the NDoH is guided by multiple national diverse population.17-19,26,35 Service providers often also and provincial tender documents. Tenders facilitate access have limited AP knowledge and are ill-equipped to provide to a wide range of commonly needed AP to meet common appropriate AP within their scope of practice due to physical, lifestyle, and environmental requirements. Tenders limitations in their undergraduate training, little exposure specify product function and design features. Although and experience, and insufficient confidence in their product quality and durability standards should be specified, skills.5,12,26 they are currently only specified in national mobility device tenders. Companies are awarded tenders based on AT and AP are rapidly evolving through constant innovation manufacturing capacity, governance, and compliance with and technology. Smart phones and other ‘mainstream’ product standards. Prices, delivery time frames, warrantees products are increasingly replacing more specialised and guarantees are specified. Where there are no tenders, equipment like electronic communication devices.6,26 To or an existing tender does not include the required product, ensure appropriate provision, providers and provider public procurement mechanisms make provision for the education must stay abreast of these developments and the purchase of these products. Poor use of AP tenders and diversity of AP.6,26 However, apart from wheelchair service procurement processes reflects insufficient knowledge and training, few AP training options are available in South understanding among users, providers, and supply chain Africa, other than marketing training by manufacturers/ management. suppliers. The biggest challenges to AP provision in South Africa are Provision probably financial constraints and the absence of ring- A systems approach advocates for a variety of products to fenced budgets.12-15,26 Finances impact on the availability be provided in a sustainable manner close to the user,20,38 of products, and lead to long waiting times. Waiting such as through one-stop community-level services with times in excess of two years have been reported, with referral to specialist centres where needed.4 products no longer fitting or being appropriate as physical measurements, needs, environments, and life roles To improve access, AP provision in South Africa should change.12,14,15 have been decentralised to district level, supported by more central specialised service points.7 However, in practice, In certain instances, in order to be able to assist more users, AT services remain inequitable and often inaccessible, providers supply basic and cheaper products rather than with services mainly available at centralised service products that are more expensive but environmentally and/ points,12,14,15 and with dysfunctional and fragmented referral or functionally more appropriate and/or adjustable.12,14,15,26,40 pathways.15 Fragmented, siloed provision results in users However, this ‘one-size-fits-all’ approach impairs use, having to access multiple professionals and/or services.5,16 function, and satisfaction and can lead to complications and Training, follow-up, adjustments, repairs, maintenance, and abandonment of the product.14 replacements are often not provided or not responsive to users’ ongoing needs,10,15,39 with resultant suboptimal Place use, safety issues, and product dissatisfaction and Place refers to physical setting and societal infrastructure.20 abandonment.25,39 The interconnectedness of psychosocial, socio-political, and cultural factors must be considered in the design Resource allocation and AP availability in South Africa are of universally accessible AT service provision and take often guided by the knowledge and passion of individual historical factors into consideration. These services must service providers and advocacy groups,12 with certain focus first on the user and the context, rather than the products more frequently provided than others, despite user impairment and the product.20 For example, within the needs.9,10 Mobility devices (walking devices and wheelchairs) diversity of South Africa, cultural and language differences are most frequently provided,9,10 followed by visual aids.10 must be considered in augmentative and alternative Teaching on mobility devices is also most frequently communication systems.26,35 Varied environments and/or included at undergraduate level.5 Commonly needed life roles may also require that a user have two products of incontinence, self-care, and environmental-control devices the same type but with different characteristics that suit the are least often provided, and teaching on these products is differing environmental requirements.39 also seldom included in undergraduate curricula.5,9 AT service in South Africa is closely linked to healthcare Procurement reform and the quest for equitable healthcare access. Effective procurement secures timeous purchase of AP However, although access has improved for the general to meet the needs of the population, based on detailed population, it is still limited for marginalised and/or impairment data for specific settings such as districts.20 vulnerable groups, many of whom need AP. Furthermore, AT provision is poorly integrated in health services,12,13,15,41 AT will be included in NHI and procured according to and varies widely across the country and settings.10,12,14 a formulary, which will probably operate much like the Inaccessible public transport,42,43 further hampered by the current tender system in public health care. Currently, AP vastness of the country, poorly maintained road systems,
Assistive technology service delivery in South Africa: conceptualising a systems approach 123 and low population density in rural areas,43 challenge impact. Equitable access could also be extended by service delivery even when decentralised. linking with the existing extensive reach of the NDoE44 and the Department of Social Services at primary care level. Pace Remote specialist outreach and support through information According to the theory-of-change approach, pace refers technology strategies may also improve access. to the rate of systems change, with course of action determined by desired outcome.20 Due to the absence of A comprehensive, integrated, national AT service-delivery national, integrated policy driving change, very little reform strategy collaboratively developed by AT users and their has occurred to improve equitable access to AT services. families, professionals, government sectors, NGOs, DPOs, Pace has been mostly reactive, focused on disability, and donors, regulatory bodies, suppliers, manufacturers, and apart from reform in the National Department of Education universities should guide AT policy, integrated inclusive (NDoE), reform has remained mostly in the health sector, practice, and service development. Policy and AT services rather than constituting an integrated targeted multilevel must be driven by demand, supply, and funding needs, be approach. As alluded to above, pace of AT service reform based on equity principles, and have clear user-centred has lagged at primary care level, particularly in rural and implementation milestones. Policy should also provide remote areas. Reforming the pace of service provision to a clear guidelines on the demand and supply of AP during heterogeneous group more representative of the cultural pandemics, such as the current coronavirus pandemic, and and language groups in South Africa has been slow.17-19 human and natural disasters.
Promotion National registries should be developed of persons with In a systems approach, stigma and negative attitudes impairments (e.g. hearing or vision loss, amputation, spinal towards disability and APs are addressed and a positive cord injury, and cerebral palsy) that commonly require APs. image of AT is portrayed,20 with AT widely promoted in a This will enhance national census data on activity limitations. broad intersectoral strategy. In South Africa, with limited and Increased life expectancy,45 and the growing burden of fragmented AP provision within health care and absence non-communicable46 and communicable diseases47 in South of intersectoral promotion, there is limited awareness of AT Africa, drive the AP needs of older people and those with and the role it can play to mitigate impairments.38 Myths, chronic conditions. These users require AP to maintain stigma, and negative beliefs further limit interest in and functional ability and quality of life through ameliorating uptake of AP.12 memory, vision, hearing, and mobility impairments.
Partnership Response indicators to monitor and evaluate implementation In a systems approach, collaboration is proactively and frameworks must be based on AT use, functional outcomes, strategically developed, as opposed to no partnership and satisfaction of users. Incentives and steps to address or short-term reactive partnerships.20 Disabled people’s poor implementation must be included and enforced.20,22 organisations (DPOs), non-governmental organisations (NGOs), and donors play an important supplementary role in Collaborative, strategic partnerships and communication AP provision in South Africa; however, their efforts are not channels between the NDoH and other existing AT service synchronised with those of the NDoH. Similarly, there is little providers such as the NDoE, NGOs, DPOs, and donors, integration and coordination of AT services between major should be formalised and nurtured to ensure accessible, service providers such as the NDoH and NDoE.12 Although comprehensive, seamless service delivery to all, not just users the importance of collaboration between professional and with a specific diagnosis or belonging to a specific group. non-professional role players is recognised, collaboration often remains challenging.26 The current limited range of AP should be strategically expanded, using the WHO Priority Assistive Products List23 as a guideline, together with a needs analysis. Local manufacturing and innovative product design should be Remodelling AT services in South facilitated and developed by stakeholders utilising local skill, innovation, and resources, together with national Africa funding that supports the research and development of local AP. The snapshots of good practice in product design Looking through a systems lens, the slow pace of AT and manufacturing presented at the GATE GREAT summit service reform in the public health sector has perpetuated in 2018 could guide decisions on best practice. In addition fragmentation, poor access, and inequity. Decentralisation to formal, large-scale product development, persons with of AT services has not had the desired impact of equitable disabilities, their families and local communities must be access, and other models of delivery should be investigated. supported to make simple, basic AP such as grab rails, The theory-of-change method or a similar strategy could ramps, reachers, plate-guards, etc. themselves, using basic facilitate more user-centred, efficient, and effective AT tools and materials.22 service delivery by simultaneously targeting and addressing the ‘P’s38 that will have the biggest up- and downstream
124 South African Health Review 2020 The small number of professionals necessitates a move away from restrictive regulations and siloed service delivery, Conclusion such as narrow scope of practice, service boundaries, and 3,27,38 product provision certification, towards embracing of a The pending NHI may be the catalyst needed to use broader generalist approach supported by specialisation. a systems approach and harness our opportunities, Task shifting, staffing models, skills mix, and continuing strengths, and challenges to “craft a uniquely South education options in AT must be mapped simultaneously, African response”49 for person-centred AT service delivery included in national and provincial health and AT policy in all parts of the country, from city centres and urban documents, and supported by the NDoH, training facilities communities to deep rural settlements and farms. and providers. This implies training and awareness raising of service managers to understand and facilitate intersectoral responsive service delivery. Professional, mid-level, technical and community workers, including Recommendations those who do not traditionally provide AT services, should be trained in basic AT services according to a core set of basic competencies for priority APs.48 Teaching and The development of integrated, intersectoral policy for learning should be competency based, with clear teaching accessible, equitable, person-centred AT services is strategies, skills to be achieved, and milestones. Curricula recommended. This must be monitored and evaluated should be standardised. Basic training can be augmented by through assessing user outcomes, under guidance of the specialist training for provision of services to persons with NDoH. Important focus areas based on the 10 `P` conceptual more complex needs and to support personnel with basic framework include: AT training through e-strategies. The role of each level of • Stimulation of local product design and manufacture. provider must be clearly described, and minimum numbers • Specified ring-fenced budgets. of providers must be determined at each service level.3 • A heterogeneous appropriately trained provider corps that can provide a range of products at community or Existing well-established and well-functioning AT services, district level. local good-practice strategies, and training packages must • Communication and collaboration between different be identified, evaluated, and both scaled out and up if stakeholder groups. feasible for larger areas of the country.4,38 • Identification and upscaling of clinical good practice models. Budgets for AT service delivery must be based on projected • A collaborative research and dissemination agenda population needs, ring-fenced for exclusive use, and be implemented alongside recommendations. inclusive of a range of products. Budgets should make provision for replacement, servicing and repairs, including spare parts, as well as for any backlogs that might exist.12,39
More national tenders should be developed, in addition to the existing well-designed, comprehensive tenders on mobility, communication, and hearing, using the WHO guide for public procurement of assistive products, accessories, spare parts and related services.34 Successful national implementation and use of tenders will rely on education and information sharing among users, members of the public, service providers, and supply-chain management.
Finally, it is imperative that strategies should be studied while they are being implemented as part of monitoring and evaluation, and that findings should be used to strengthen policy and practice.3,22
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126 South African Health Review 2020 26. Dada S, Murphy Y, Tönsing K. Augmentative and 38. McPherson B. Hearing assistive technologies in alternative communication practices: A descriptive study developing countries: background, achievements and of the perceptions of South African speech-language challenges. Disabil Rehabil. 2014;9(5):360-4. therapists. Augment Altern Commun. 2017;33(4):189-200. 39. Shonaquip. 2015. Information booklet. Cape Town: 27. Matter R, Harniss M, Oderud T, Borg J, Eide AE. Shonaquip. www.shonaquip.co.za. Assistive technology in resource-limited environments: 40. Pienaar E, Visagie S. Prosthetic use by persons with a scoping review. Disabil Rehabil Assist Technol. unilateral transfemoral amputation in a South African setting. 2017;12(2):105-14. Prosthet Orthot Int. 2019;43(3):276-83. 28. United Nations. United Nations Convention on the 41. Mji G, Braathen SH, Vergunst R, et al. Exploring the Rights of Persons with Disabilities. New York: UN; 2006. interaction of activity limitations with context, systems, URL: https://www.un.org/disabilities/documents/convention/ community and personal factors in accessing public health convoptprot-e.pdf. care services: A presentation of South African case studies. 29. World Health Organization. Guidelines on the provision Afr J Prim Health Care Fam Med. 2017;9(1):a1166. of manual wheelchairs in less-resourced settings. Geneva: 42. Lister HE, Dhunpath R. The taxi industry and WHO; 2008. URL: https://www.who.int/publications-detail/ transportation for people with disabilities: implications guidelines-on-the-provision-of-manual-wheelchairs-in-less- for universal access in a metropolitan municipality. resourced-settings. Transformation: Critical Perspectives on Southern Africa. 30. World Health Organization. Community-based 2016; 90:28-48. rehabilitation: CBR guidelines. Health component. Geneva: 43. Vergunst R, Swartz L, Mji G, MacLachlan M, Mannan H. WHO; 2010. URL: https://www.ncbi.nlm.nih.gov/books/ “You must carry your wheelchair”: Barriers to accessing NBK310926/. healthcare in a South African rural area. Glob Health Action. 31. World Health Organization. Joint position paper on 2015;8. the provision of mobility devices in less-resourced settings: 44. Spangenberg K, Corten L, Van Rensburg W, et al. The a step towards implementation of the Convention on validation of an educational database for children with the Rights of Persons with Disabilities (CRPD) related to profound intellectual disabilities. Afr J Disabil. 2016;5(1):a237. personal mobility. Geneva: WHO; 2011. URL: http://www.who. int/disabilities/publications/technology/jpp_final.pdf. 45. Garcon L, Khasnabis C, Walker L, et al. Medical and assistive health technology: meeting the needs of aging 32. World Health Organization. WHO standards for populations. Gerontologist. 2016;56:S293-302. prosthetics and orthotics. Part 1 & 2. Geneva: WHO; 2017. URL: https://www.who.int/phi/implementation/assistive_ 46. Mayosi BM, Lawn JE, Van Niekerk A, et al. Health in technology/prosthetics_orthotics/en/. South Africa: changes and challenges since 2009. Lancet. 2012;380:2029-43. 33. South African National Department of Health. Standardisation of provision of assistive devices. A guideline 47. Hanass-Hancock J, Myezwa H, Nixon SA, Gibbs A. for use in the public sector. Pretoria: NDoH; 2006. URL: “When I was no longer able to see and walk, that is when I http://uhambofoundation.org.za/new_wp/wp-content/ was affected most”: experiences of disability in people living uploads/2016/06/standardisation_of_provision_of_ with HIV in South Africa. Disabil Rehabil. 2015;37(22):2051-60. assistive_devices_in_south_.pdf. 48. World Health Organization. Personnel training in 34. World Health Organization. Access to appropriate, priority assistive products (TAP). Geneva: WHO; 2018. URL: affordable, quality assistive technology: A guide for public https://www.who.int/news-room/feature-stories/detail/ procurement of assistive products, accessories, spare parts personnel-training-in-priority-assistive-products-(tap). and related services. Geneva: WHO; forthcoming. 49. Ramaphosa C. Extension of Coronavirus COVID-19 35. Tönsing KM, Van Niekerk K, Schlünz G, Wilken I. lockdown to the end of April. 9 April 2020. URL: https:// Multilingualism and augmentative and alternative www.gov.za/speeches/president-cyril-ramaphosa-extension- communication in South Africa – Exploring the views of coronavirus-covid-19-lockdown-end-april-9-apr-2020-0000 persons with complex communication needs. Afr J Disabil. 2019;8(0):507. 36. Health Professions Council of South Africa. Ethical guidelines for good practice in the health care professions. Booklet 2. Pretoria: HPCSA; 2008. URL: https://www.hpcsa. co.za/Uploads/Professional_Practice/Ethics_Booklet.pdf. 37. McSweeney E, Gowran R. Wheelchair service provision education and training in low and lower middle-income countries: a scoping review. Disabil Rehabil Assist Technol. 2019;14(1):33-45.
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Assistive technology service delivery in South Africa: conceptualising a systems approach 127 REVIEW 13 Health-system strengthening that matters to rural persons with disabilities: lessons from the Eastern Cape
Disability, poverty and poor access to Authors Kate Sherryi healthcare services occur in a mutually Steve Reidi Madeleine Duncanii reinforcing vicious cycle. Health system- strengthening measures are vital in interrupting this cycle.
People with disabilities are particularly vulnerable to health- impoverished rural community. Through understanding system weaknesses and failures. Disability, poverty and poor the healthcare experience from the perspective of people access to healthcare services occur in a mutually reinforcing with disabilities, important lessons emerged on how health vicious cycle, and health system-strengthening measures are systems can either exclude or engage this vulnerable vital in interrupting this cycle. Knowing which health system population. aspects need to be addressed requires an understanding of how people with disabilities currently engage (or do The study describes the often-hidden temporal and spatial not engage) with services. While much recent research dimensions of healthcare engagement, which pose serious addresses healthcare access for people with disabilities, barriers to people with chronic health conditions and people very little of this research has explored the interaction of this with disabilities. At the same time, it reveals the pivotal role vulnerable population with the health system over time, or of individual interaction between healthcare worker and their choices and experiences within this process. healthcare seeker, and the ways in which the health system can either constrain or enable this. While the findings point This chapter presents research into the engagement of to large-scale health system changes needed if people with people with disabilities with primary health care services disabilities are to fully realise their right to health care, the in a rural area of the Eastern Cape. A group of people findings also suggest the protective role of trust and positive with disabilities was followed over two years, providing relationships at individual level in strengthening healthcare qualitative longitudinal data on health system engagement, engagement. The recommendations offer hope not only for contextualised within the realities of daily life in an people with disabilities, but also for the broader population.
i Primary Healthcare Directorate, University of Cape Town ii School of Health and Rehabilitation Sciences, University of Cape Town
Click to navigate to Contents Participants were recruited through a local research Introduction assistant and community research advisory group, and were purposively sampled for maximum variation in age, gender A growing body of literature describes the challenges facing and type of disability. The small sample size and prolonged people with disabilities in accessing health care in low- and engagement allowed for considerable depth in each case. middle-income countries, including South Africa.1 People Data generation and analysis took place iteratively, using a with disabilities are known to experience marginalisation in combination of thematic and narrative analytical methods. both the health system and broader society, often for related Further methodological detail on the study has been 6 reasons, such as environmental barriers, increased risk of published elsewhere. poverty, and social exclusion. Clear trends are emerging across the data from different settings, including the barriers Ethical permission for the study was obtained from to access posed by transport costs, healthcare worker the University of Cape Town’s Health Research Ethics knowledge and attitudes, inaccessible environments, and Committee (HREC no. 569/2012) and from the Eastern Cape lack of specialised services.2,3 Department of Health.
Large-scale quantitative studies cannot account for the wide variation in individual healthcare-seeking choices and responses under the same set of constraints. Questions Key findings about this variation rose when the first author [KS] was working as an occupational therapist in a rural district The findings confirmed much already known about barriers hospital, and led to a doctoral study aimed at understanding and challenges faced by rural people with disabilities in how people with disabilities and their households made accessing health care. However, by exploring how different decisions about engaging with the health system, how they individuals responded to the same factors in the unfolding experienced this engagement, and how this process unfolded context of their lives, new dimensions to healthcare over time in the context of their everyday lives. The study engagement were uncovered. theorised that understanding different people’s choices would shed light on what they valued in health and health For participants experiencing chronic or long-term health care, and indicate possible health-system strengthening needs (both disability-related and otherwise), the temporal measures beyond simply removing barriers to access. dimension of healthcare engagement became especially important. Following the stories of individuals over time This chapter describes selected aspects of the research provided a view of the full cycle of healthcare seeking, from findings, using case studies to illustrate elements of the emergence of a health need through to the outcomes of healthcare engagement by people with disabilities. healthcare received. The following sections of this chapter unpack how participants made decisions about healthcare seeking, characteristics of their healthcare-seeking trajectories over time, and the pivotal role of individual Methodology interaction with healthcare workers in determining the perceived quality and effectiveness of health care. An embedded case study was done of 11 people with disabilities and their households living in a remote rural Deciding to seek care village in Alfred Nzo district, Eastern Cape. This area falls Viewing healthcare engagement from the perspective of under tribal leadership of the amaBhaca people, and people with disabilities and their families, it was clear that traditional practices remain strong. there was no simple pathway from experiencing a health need to seeking services. The decision to seek health care Like many former homeland areas, Alfred Nzo district is was a complex reasoning process, weighing up the health characterised by poor infrastructure, high unemployment need experienced against the costs of seeking health care, and deprivation levels, and considerable labour migration to and the perceived likelihood of receiving satisfactory help. the cities.4 In line with the Rural Health Advocacy Project’s In this cultural and socio-economic context, healthcare definition of rurality, healthcare access in this area is seeking is usually a decision taken by the household not complicated by large distances between different levels the individual, and was therefore influenced by family of healthcare facility, topographical barriers, and inherent relationships and values, competing demands on resources, health-system challenges.5 Participants’ engagement with and other contextual factors such as culture and income. healthcare services was studied over a two-year period, using ethnographic methods, including immersion in The costs of almost any healthcare visit were high, including context, participant observation, narrative interviewing, transport money, time, and social assistance. While the and key informant interviews. Each ‘case’ was built up nurse-run local clinic could provide basic primary care, a using additional data from family members and healthcare doctor could only be seen at the district hospital in town, workers, creating a multifaceted picture of engagement. and this was necessary for the majority of the health needs
130 South African Health Review 2020 reported by our participants (which included treatment The choice to disengage from the health system sometimes for pain, fatigue, epilepsy, respiratory infections, and meant missing out on real help. One young woman named neurological impairments, among others). Such a visit Nocawa had a hearing impairment that severely affected would take an entire day, with the participant and relative her schooling and relationships with her family and peers. catching the only taxi to town at 05h00, and returning after Her mother had given up seeking help for her some years 17h00. Fares for a person with a disability accompanied by before, and was unaware of new audiology services at the a relative could be up to 10% of the monthly disability grant district hospital. Nocawa was referred to them, and the (more if a wheelchair was also transported), before payment hearing aid she was given allowed her to learn and socialise of user fees and other expenses. No disability-specific fully for the first time. Her mother told us: services existed in the community itself, and although several rehabilitation professionals were employed at the Before I was worried, because I wanted to push her in district hospital, only two of the 11 participants had ever had school to finish Standard 10. Now she has a hearing aid contact with them. she wants to be a teacher, because she understands everything. Given these dynamics, not every health problem experienced by people with disabilities led to healthcare In weighing up health needs against costs of healthcare seeking. While acute or common health conditions (e.g. a seeking, the functional impact of a condition was often its fever) might lead to a straightforward visit to the clinic for most significant characteristic, especially where this affected curative care, disability-related health needs (e.g. treatment household livelihoods. Sibongile was a young man who for a psychiatric condition or access to assistive devices) walked with crutches due to a lower-limb impairment. He were more complex. supported his wife and two children by doing household repair work around the village. He explained a serious Not all participants had a diagnosis for the condition leading health problem he faced: to their impairment, or a clear idea of what kind of treatment or outcome could be hoped for. A large proportion of The problem is when you don't have enough [crutch] healthcare seeking was a search for unspecified help for rubbers. Because you walk a long distance, you see … and a disabling condition that general healthcare services had if [your crutch] doesn't have a rubber … this iron is causing been unable to address satisfactorily. Lack of information pains straight here. It pounds on you.… Now I was always about disability services contributed significantly to lying down with the pain.... I am worried how I am going to extending this process. While cure was ‘first prize’, the work for my children. participants also needed understanding of what had happened to them, and to be satisfied that they had done all Replacement crutch rubbers weren’t available at the clinic, they could to find help. and the only solution was a costly trip to the hospital. To the healthcare workers who saw him there, this was hardly a Hope of cure could drive massive expenditure and effort ‘serious’ need, but the cost of not seeking care, i.e. loss of on services of negligible benefit, including public and income, justified the expense for the family. private sector practitioners and traditional healers. One mother, whose adult son had been born with cerebral palsy, By contrast, the family of Nolufefe, a young girl with described how she had travelled the province for the first 10 intellectual disability, chose to discontinue her epilepsy years of his life, following up rumours of services for children treatment because the time cost of monthly clinic visits with disabilities. For a time, she had made a three-day round was not justified by any change in her level of function. trip every month to take him to physiotherapy in a city over Her mother was widowed and extremely poor, and the little 300 km away. Eventually, seeing no change in his condition, available money was spent on schooling for Nolufefe’s she had given up. She told us: brothers, who had the potential to earn income in future. This difficult choice brought judgement from local I have forgiven [those who did not help me]. I have community health workers and clinic nurses, who accused accepted that God has given it to me to stay with my son Nolufefe’s mother of “just eating the [disability] grant”. as he is. Healthcare seeking over time: protracted This acceptance was reflected by another participant, an trajectories elderly woman named Irisa who had become paralysed for People with disabilities are known to need complex unknown reasons. She told us she had not even been to packages of care, and to be especially vulnerable to the clinic since 1975, as healthcare workers had never been health system fragmentation.3 Following the participants’ able to help her with her problem. It became clear how each stories, it was clear how healthcare engagement could be healthcare-seeking episode built on past experiences, either unnecessarily protracted over time and space. Even more of success or failure. significant than the costs of transport or long waiting times were the factors (both within and outside the health system) a All participant names have been changed to preserve confidentiality. Pseudonyms are used for ease of reference.
Health-system strengthening that matters to rural persons with disabilities: lessons from the Eastern Cape 131 that multiplied these economic, personal and social costs product meant that this ordeal had to be repeated every two across a healthcare-seeking cycle. to three months.
The first ‘multiplication factor’ was the entry point into the Rehabilitation interventions, including assistive devices, system: all healthcare seeking had to begin at the local almost always require a series of visits within a reasonable clinic, even when the need for a doctor or other health time period to be effective, and this was unaffordable for professional was clear. At the time of the study, doctors and residents in the study site. Nocawa, the young woman rehabilitation professionals did not conduct outreach to this who benefitted so greatly from a hearing aid, lost use of area, and there was little communication between hospital this device after several months because she was unable and clinic staff. For logistical reasons, the clinic and hospital to return to the hospital for new batteries. The hospital could not be visited on the same day, and even reaching manager did not allow the rehabilitation team to do the clinic could take considerable time and effort, especially outreach, and nobody had thought to make such items for people with mobility impairments. The clinic nurses available at clinic level. In Sibongile’s case, the clinic nurse were helpful in adapting some procedures to accommodate arranged at his request for some rubbers to be delivered them, e.g. allowing chronic medication to be collected by to the clinic with medication stocks. This was a huge family members, but their influence was constrained by their improvement, but the supply was quickly depleted and not limited clinical scope. replaced.
The second multiplication factor was the frequent need for Such organisation of health services considerably amplified follow-up visits to complete an intervention, for example the costs of health care for people with disabilities in this returning to the hospital for test results. While some such area, especially those living rurally. Unfortunately, these visits were unavoidable, healthcare workers seemed realities were largely invisible to healthcare workers, who unaware of the costs for the participants, and therefore did expressed frustration at families’ lack of engagement. One not factor this into their decision-making or expectations. doctor told us: For example, when Phindile, a young man with mental illness, was admitted to hospital, the nurse required his Some of the challenges we face: the relative brings a sister to bring him clean clothes the next day, and the doctor patient, and never comes to visit them, ever … I have to expected the family to visit him daily. In reality, they could see 35 patients, I can’t sit with them, you know, one on barely afford to fetch him on discharge. one, and want to hear what their concerns are….
The difficulty of affording a second healthcare visit within a Such perceptions had a significant impact on the short time period often resulted in follow-up appointments relationship between healthcare workers and people being missed, and families would then need to begin again with disabilities, which in turn affected the quality of care from clinic level, with the added disadvantage of being received. labelled ‘non-compliant’ by healthcare workers. Clinical encounters: two modes of engagement The third multiplication factor was the centralisation of The high costs, complex decisions and lengthy disability services. A rehabilitation service, including engagements described above often came down to an physiotherapy, occupational therapy and audiology, was encounter with a healthcare worker that might not last located at the district hospital and therefore only accessible more than 10 minutes. As previously stated, the doctor at via clinic referral. The clinic nurses did not seem to know the district hospital played a pivotal role, being responsible about these services, and doctor referrals were limited. for diagnosis, treatment prescription, and/or referral. There were no peer supporters or mid-level rehabilitation Unfortunately, many of the consultations described to workers in this community, and local capacity to address us were characterised by a sense of ‘going through the health-related disability needs was therefore low. motions’ rather than a serious attempt to understand and Community health workers did visit the homes of the study meet a health need. We came to call this mode of (dis) participants, but their limited training had not yet included engagement ‘futile reproduction’. disability or mental health skills. Futile reproduction Further, some rehabilitation services required visits This approach was reductive, with simplistic explanations elsewhere too, because certain equipment was not available or ‘diagnoses’ applied to the complex situations of people at the district hospital. For example, the audiologist did not with disabilities. These responses were heavily based have a testing booth, and Nocawa and her mother had to on assumptions about people with disabilities and their visit a second hospital to complete her assessment. More families, and were particularly evident in relation to people unreasonably, the physiotherapist did not have stock of the with mental illness. Psychiatric assessment was observed rubbers needed by Sibongile, and he was referred to the to be very limited, with nurses and doctors seeming to tertiary hospital 100 km away for these. Policy allowed only judge mental state largely by appearance. Speaking about one pair to be issued at a time, and the poor quality of the Phindile, a clinic nurse told us:
132 South African Health Review 2020 My assessment was, he is defaulting from treatment. When The ambulance will not come for the psychiatric client, he came back from [the hospital], he was very neat, but they say it is a police case. after he defaulted for three months, he was very dirty.… He is very clean when he is taking treatment. At the same time, the police would not come unless a crime had been committed. While this was obviously paradoxical, When Phindile visited the hospital, his brother would none of the service providers involved seemed to see or be first wash him, by force if necessary. This could mean an able to address this. underestimation of his illness, as happened when he was assessed for renewal of his disability grant. His brother told us: The pattern of ‘futile reproduction’ could result in many wasted visits, the costs of which were hidden from the He was once getting [the grant] and it stopped, because healthcare workers concerned. While it was tempting the doctor said he is fine. He received for nine or ten to blame healthcare workers for acting in this way, their months and when he went for its reactivation, the doctor behaviour needed to be seen in the context of the health said he is fine. system of which they were part. High caseload and chronic shortage of staff made it necessary to ration the time and At the same time, if Phindile was seen to be dirty, another energy they spent on each patient, and ‘priority conditions’ assumption came into play. The clinic nurse explained: such as HIV, tuberculosis and maternal and child health were placed first. Not only did these workers often lack the The families, they are neglecting [the people with knowledge of disability to offer constructive help, they were disabilities]. They care for them one day in the month, also situated within a system that by its very structure and when they take them to pension point.... After that the values, tended to obscure and minimise the needs of people family just leave them in the house, not washing them, not with disabilities. Isolated in the hospital from the life context changing their clothes…. of their patients, and situated within a medical value system focused on curing disease and saving lives, healthcare While certainly true in some cases, this assumption placed workers simply weren’t positioned to perceive or respond to suspicion on every family, and healthcare workers were the realities of disability in the communities they served. quick to judge them for ‘not caring’. A key feature of the health service that perpetuated ‘futile Such cursory summing-up was coupled with active silencing reproduction’ was lack of continuity in the relationship of the healthcare seeker and family members during the between healthcare worker and seeker. People were encounter, or at least failure to listen to what they had to say. expected to see whomever was available, and this often Phindile’s sister-in law told us: meant needing to tell their story anew with each visit. It also meant that clinicians seldom saw the results of their When I was trying to answer the doctor, he was saying interventions, and had little opportunity to learn from to me, ‘Please close your mouth, I am asking Phindile not experience. They also had little incentive to address a you’. After that, the doctor didn’t ask me anything. problem effectively, compared with simply seeing the patient (and the rest of the day’s queue) as quickly as possible. Another feature of ‘futile reproduction’ was the application of formulaic interventions to the perceived ‘diagnosis’. One Collaborating to heal participant, Nozukile, had repeatedly sought help for a non- In spite of all of these challenges, participants did specific list of symptoms, including fatigue and generalised sometimes experience positive and satisfactory encounters body pain. Healthcare workers had repeatedly prescribed with healthcare workers. While uncommon, their accounts “Panado, B-Co and Brufen”, without fully examining her, of these occasions provided crucial insight into what they clearly convinced that nothing significant was wrong. She valued and considered to be quality in health care. told us: Overwhelmingly, these positive experiences were What I think is, maybe when the doctor looks at the card characterised by the interpersonal engagement initiated and sees that the nurses have given me these pills, he by the healthcare worker. A kind and respectful manner thinks he must also do the same. And when the nurses seemed to be considered inseparable from being a good look at the card and see that the doctor has given me clinician: these pills, they think they must do the same … [but] no one has ever asked whether they are helping me or not. If I see [the doctor] in [the supermarket] I can greet him with his name, and he is going to smile. Some of them tell Sometimes formulaic interventions involved shunting a themselves they are the best people in our lives – I won’t person with disability from one service to the next. In the greet that one. The good doctor is the one who is humble, case of people with mental illness in this area, it was almost willing to greet. impossible to get transport to the hospital in case of an emergency. According to the clinic nurse: It was also clear that community members took note of individual healthcare workers, and this could strongly
Health-system strengthening that matters to rural persons with disabilities: lessons from the Eastern Cape 133 influence their future healthcare-seeking choices. The same Like her colleagues before her, this doctor had found key informant said: nothing clearly wrong with Nozukile, but how she was seen to reach this conclusion made all the difference: Before you examine me, I want to know your name and your surname, so that whatever can happen, I can know This time I was satisfied. I think the doctor I got did her who I was dealing with, know whether to go back to that best. I am fine ever since I saw her. doctor, if he was good. I can follow him to [another town] if he was transferred. A final component of these positive encounters was a sense of collaboration, and value placed on the participant’s own By contrast, another participant explained her response to a knowledge of his/her body. One parent explained: negative interaction with a doctor: You are going to help each other, patient and nurse, I don’t want to go again to the hospital, because the doctor because you are asking a question, and the other is I met there last time was so rough.… I can go back there answering, so you are helping each other, both of you. when I hear that that doctor is not there anymore. Together, these features added up to an approach Another feature of positive engagement with healthcare we termed ‘collaborating to heal’, which bore a strong workers was what Mamthuli, the mother of the young man resemblance to person-centred care, as described in the with cerebral palsy, described as “their will to help”. Among literature.7 While uncommon, it was seen to occur under all her fruitless attempts to find treatment for her son, she the same constraints and pressures as ‘futile reproduction’, expressed strong satisfaction with one hospital: indicating that healthcare workers had some choice in their mode of engagement. While they might be unaware of the I think at [that hospital], I was treated so well and the significance of their behaviour, it was clear how this could treatment was super. The nurses were so kind.… In all the make the difference for our participants between restored places I went to, they were the only ones who thought capability and peace of mind, and further weeks or months about performing an operation to make [my son] walk. of costly healthcare seeking. What I liked is their will to help, even though it did not help at the end.
The staff concerned had identified with this mother’s real-life Conclusions goals for her son (which again connected health outcomes with function). By contrast, she reflected thus on the poor- This research uncovered how apparently minor features quality therapy her son had received in his early years: of health system organisation could have dramatic and expensive consequences for people with disabilities and They just stretched him.… I did not see any help in it. their families. At the same time, it showed the primary importance they placed on positive relational engagement Although neither intervention had achieved its goal, she with healthcare workers, and how a person-centred judged them very differently. This was a strong reminder that approach seemed to outweigh the many negatives. Trust in clinical outcome was far from the only criterion for quality known individual healthcare workers also seemed to make health care, and that where ‘cure’ might not be possible, further engagement with healthcare services more likely. good relational engagement might be even more important. While the literature primarily addresses trust at a system level and within healthcare organisations,8,9 the findings It was clear that the participants carefully observed demonstrated how personal trust might be protective in healthcare workers and critically evaluated their practice. A the presence of serious health system challenges. Health proper assessment was considered vital, and the opinion of system interventions that support and facilitate such a doctor who did not pay attention to referral letters, listen relationships are discussed below. to their stories or conduct a physical examination, was often disregarded. This was especially significant when no clear Viewing healthcare engagement from the perspective of diagnosis might be forthcoming, as in the case of Nozukile. people with disabilities highlighted human complexities After several years of experiencing ‘futile reproduction’, she in the healthcare interface, which go unacknowledged was seen one day by a doctor who listened carefully and by health systems thinking based on ‘delivery’ of set conducted a full examination. Nozukile explained: interventions for defined diagnoses.10 Our participants’ experiences were a reminder that health needs do not [I was helped] because of the care that I got from the always arise in straightforward biomedical categories, and doctor. Other doctors would not even examine me. They that a curative focus on ‘priority conditions’ can marginalise would ask me questions, write down and prescribe some of the most vulnerable members of society. pills according to what I say, not according to what he spotted. But this one doctor prescribed according to her examination.
134 South African Health Review 2020 Although small in size, the study demonstrates the value Health system measures of a person-centred, contextualised understanding of how While emphasis is placed on healthcare workers’ behaviour people engage with the healthcare system. Statistical change, it is vital that health systems are organised to generalisability was not attempted, but the findings may support the kind of practice recommended. be reasonably expected to reflect the situations of people with disabilities living under similar conditions of poverty, Outreach by health professionals based at district hospitals rurality and constrained access to health care (theoretical should be promoted and resourced, both to make services generalisability).11 While more research is needed to confirm more accessible to people with disabilities and to build the these findings at scale, what emerged was sufficient to understanding of context described above. inform recommendations at the level of healthcare workers, the health system, and future research. Disability services in particular need to be brought as close as possible to where people live; this includes provision of assistive devices, repair of devices, and the availability of spares. In planning services, the full care pathway needs Recommendations to be understood and the full ‘package’ made accessible and affordable. For rural people with disabilities, this means 15,16 Healthcare workers rehabilitation being integrated into primary health care. Disability knowledge and skills should be available at To be effective, healthcare workers need a strongly community level through trained community health workers, contextualised understanding of health, illness and peer supporters and mid-level rehabilitation workers, disability in the communities they serve. This understanding supported by rehabilitation professionals at district or should be embedded in disability training across health district hospital level. Active follow-up with households of professions12 but also in ongoing learning built into clinical people with disabilities would overcome many barriers to practice. Outreach to clinic and community settings helps accessing care, and prevent ‘falling out’ of the system. Good bring services closer to people, but is even more valuable relationships between the levels of care, and the use of in giving healthcare workers insight into their patients’ life communication technology (e.g. telephone follow-ups) should context. reduce fragmentation and some of the need for hospital visits. Where facility visits are necessary, accessible planned As the prevalence of chronic illness grows, health workers patient transport, fee waivers, and prioritised queueing for need to understand health differently: not as “a complete people with disabilities will further reduce costs. state of physical, mental and social wellbeing”,13 but more realistically, as people’s capability to do the things they Secondly, healthcare provision should promote need and want to do.14 This perspective allows a move longitudinality in the relationship between healthcare users beyond attempting to cure (which may fail) to possibilities and an allocated individual healthcare worker.17 Longitudinal of promoting healthy function and participation despite care has been shown to improve satisfaction with health impairment or illness. While the skills to achieve this may care (including for health professionals themselves), and belong particularly with rehabilitation professionals, sharing to increase healthcare effectiveness and efficiency.18 this perspective across the team is essential for effective This is of particular importance for people with long-term multidisciplinary (or transdisciplinary) health care. and complex health needs, including many people with disabilities, and could be instrumental in overcoming the Every healthcare worker needs to understand the service fragmentation and barriers to entry illustrated in the practicalities of access to health care for their patients, as participants’ stories. well as their own responsibility to ensure that care pathways are as direct and affordable as possible. Advocacy and Finally, the priorities and goals set by health officials and problem-solving by healthcare workers at local level can be policy-makers need to move beyond targeting ‘priority powerful in overcoming minor barriers with significant cost conditions’ and biomedical solutions to encompass the implications, but this relies on healthcare workers paying health needs and goals of people with disabilities and attention to the story of healthcare seeking over time, rather chronic health conditions. This means adopting a genuinely than simply the moment of a patient presenting to them. people-centred approach to health systems and health care.19 Finally, healthcare workers will benefit from insight into how they are perceived by healthcare seekers, and the potential impact of relationship quality on the effectiveness of their Further research interventions. The study presented here was one attempt to This study was based on a small sample in a single village, gain such insight. and more research is needed to confirm its applicability in other settings. It did, however, demonstrate the value of in-depth, contextualised research over a period of time to understand better how people with disabilities engage with the healthcare system (or choose not to do so).
Health-system strengthening that matters to rural persons with disabilities: lessons from the Eastern Cape 135 11. Yin RK. Case study research: Design and methods. In: References Bickman L, Rog DJ, editors. Essential guide to qualitative methods in organizational research. Thousand Oaks, CA: Sage Publications; 2009. 1. Bright T, Kuper H. A systematic review of access to general healthcare services for people with disabilities in 12. World Health Organization. WHO Global Disability low and middle income countries. Int J Environ Res Public Action Plan 2014-2021. Geneva: WHO; 2015. Health. 2018;15(9):1879. URL: https://www.who.int/disabilities/actionplan/en/. 2. Kuper H, Heydt P. The Missing Billion: Access to health 13. World Health Organization. Declaration of Alma- services for 1 billion people with disabilities. London; 2019. Ata. Geneva: WHO; 1978. URL: www.who.int/publications/ URL: www.lshtm.ac.uk/missingbillion. almaata_declaration_en.pdf. 3. World Health Organization. World Report on Disability. 14. Stucki G, Bickenbach J, Gutenbrunner C, Melvin J. Geneva: WHO; 2011. URL: http://www.who.int/disabilities/ Rehabilitation: The health strategy of the 21st century. world_report/2011/en/. J Rehabil Med. 2018;50(4):309-16. 4. Alfred Nzo District Municipality. Integrated 15. Sherry K. Disability and rehabilitation: essential development plan (IDP) 2015/16. ANDM; 2015. considerations for equitable, accessible and poverty- URL: http://www.andm.gov.za/wp-content/uploads/2020/10/ reducing health care in South Africa. In: Padarath A, King J, Alfred-Nzo-District-Municipality-IDP-2019-2020-4.pdf. English R, editors. South African Health Review 2014/15. Durban: Health Systems Trust; 2015. 5. Rural Health Advocacy Project. Defining rural: What do we mean by rurality? Johannesburg: RHAP; 2018. URL: 16. World Health Organization. Rehabilitation in Health http://rhap.org.za/our-projects/defining-rural/. Systems. Geneva: WHO; 2017. URL: https://www.who.int/ rehabilitation/rehabilitation_health_systems/en/. 6. Sherry K, Dabula X, Duncan EM, Reid S. Decolonizing qualitative research with rural people with disabilities: 17. World Health Organization. Primary care: putting Lessons from a cross-cultural health systems study. people first. In: Primary Health Care: Now more than ever. Int J Qual Methods. 2020;19:1-11. Geneva: WHO; 2008. pp. 41-60. URL: http://www.who.int/ whr/2008/chapter3/en/. 7. Epperly T, Roberts R, Rawaf S, et al. Person-centered primary health care: now more than ever. Int J Pers Cent 18. Ferrer APS, Brentani AVM, Sucupira ACSL, Navega Med. 2015;5(2):53-9. ACB, Cerqueira ES, Grisi SJFE. The effects of a people- centred model on longitudinality of care and utilization 8. Gilson L. Editorial: Building trust and value in health pattern of healthcare services – Brazilian evidence. Health systems in low- and middle-income countries. Soc Sci Med. Policy Plan. 2014;29(Suppl 2):ii107-13. 2005;61(7):1381-4. 19. World Health Organization. WHO global strategy on 9. Erasmus E, Gilson L, Govender V, Nkosi M. people-centred and integrated health services. Geneva: Organisational culture and trust as influences over WHO; 2015. URL: http://www.who.int/servicedeliverysafety/ the implementation of equity-oriented policy in two areas/people-centred-care/global-strategy/en/. South African case study hospitals. Int J Equity Health. 2017;16(1):164. 10. Sheikh K, Ranson MK, Gilson L. Explorations on people centredness in health systems. Health Policy Plan. 2014;29:ii1-5.
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136 South African Health Review 2020 REVIEW 14 The role of social workers in addressing caregiver burden in families of persons with disabilities
Family caregivers often experience caregiver Authors Noreth Muller-Kluitsi burden, which includes physical health Ilze Slabberti issues, personal isolation, lack of respite services, employment concerns, financial concerns, poor emotional health, and giving up on personal aspirations.
Disability impacts not only the person with the disability, but were identified by referring to the literature, with particular also his or her support network, namely friends and family. reference to a Cape Town study on the subject. The When a family member has a disability, it is generally the caregiver burdens that emerged included physical family that provides care. Informal care by a family caregiver health issues, personal isolation, lack of respite services, is usually seen as a cost-effective way of caring for persons employment concerns, financial concerns, poor emotional with disabilities. However, this can have critical consequences health and giving up on personal aspirations. for caregivers, including post-traumatic stress disorder, emotional distress, caregiver burden, depression, and anxiety. Recommendations are made in terms of the role that social workers can play in addressing caregiver burden The aim of this chapter is to explore the burdens among family caregivers, and how they can help to address experienced by family caregivers in the rehabilitation of the caregivers’ physical, emotional, financial, and social persons with disabilities, and to discuss the role of social concerns. The social work roles highlighted in the chapter workers in this process. Family-caregiver experiences include those of educator, broker and enabler.
i Department of Social Work, Stellenbosch University
Click to navigate to Contents for fundamental dignity and individual autonomy; non- Introduction discrimination; full and effective participation and inclusion in society; respect for difference and acceptance of persons 6 Parents usually have high aspirations and dreams for their with disabilities; equal opportunity; and accessibility. children, but when they discover some anomalies in their new-born child, other emotional experiences can arise,1 In 2015, The United Nations adopted 17 SDGs based on such as guilt based on the belief that they caused the child’s the principle of ‘leaving no one behind’. This principle disability through genetics, alcohol misuse, or stress. When emphasises a holistic approach to achieving sustainable 9,10 a person acquires a disability later in life, the adjustment development for all. In contrast to the Millennium must be made by both the individual and the family.2 This Development Goals (MDGs), which did not mention persons adjustment is ongoing, with feelings of sorrow alternating with disabilities, the SDGs emphasise that people who are with despair and acceptance. Persons with an acquired vulnerable must be empowered, including persons with 9 disability alternate between acknowledging their ‘pre- disabilities, of whom more than 80% live in poverty. disability’ and ‘new disability’ identity.3 In 2016, the Department of Social Development launched Family caregivers often play a central role in the care of the White Paper on the Rights of Persons with Disabilities 5 persons with disabilities, and the latter depend greatly on (WPRPD), which modernises South Africa’s Integrated National 11 the willingness and ability of their families to adopt the Disability Strategy White Paper and integrates the obligations 6 unanticipated role of informal caregiving. At the same time, of the UN CRPD and the Continental Plan of Action for the 12 family members experience their own challenges, and need African Decade of Persons with Disabilities, along with to make their own adjustments, which can impact on the South Africa’s legislation, policy frameworks and the National 13 person with disabilities’ ability to cope with psychological Development Plan (NDP) 2030. The 2016 WPRPD supports and physical adaptations.4 Social workers play an important mainstreaming of the rights of persons with disabilities and role in addressing caregiver burden, and in service provides clear guidance on policy development. Norms and delivery to persons with disabilities in alignment with the standards are stipulated for removing discriminatory barriers goals of policies such as the White Paper on the Rights of for persons with disabilities and a framework is provided Persons with Disabilities (WPRPD)5 and the United Nations’ for the responsibilities and accountabilities of the different Convention on the Rights of Persons with Disabilities stakeholders. Once the WPRPD is implemented, persons with (UN CRPD).6 They do this by facilitating access to necessary disabilities should be given the opportunity to enjoy their full resources through interventions such as advice, referral, political, human, social and economic rights to participate fully and advocacy that assist both the person with disability and and equally in mainstream social and economic life. In addition, his/her family7 with the rehabilitation process. In so doing, they should be given the right to live and work in safe and social workers can also relieve the caregiver burden often accessible environments free from discrimination, harassment 5 experienced by family members as informal caregivers. and persecution.
In 2017, the Rehabilitation 2030: A Call for Action meeting noted that rehabilitation is a vital objective in the World Policies guiding service delivery Health Organization (WHO) Global Disability Action Plan 2021. However, under the sustainable development agenda, to persons with disabilities in rehabilitation services need to be brought into a broader South Africa context to achieve SDG goal 3, namely to “[e]nsure healthy lives and promote well-being for all at all ages”.14
Several international and national policies have worked to establish service delivery for persons with disabilities. Disability inclusion based on the UN CRPD, in conjunction Social work and disability with the 2015 Sustainable Development Goals (SDGs), should now be considered an overarching priority by organisations and individuals committed to improving the Most people will experience a form of impairment or 15 quality of life of persons with disabilities.8 disability in their lifetime – either temporary or permanent. Various forms of impairment can occur at any given moment, South Africa ratified the UN CRPD, indicating the examples being a baby born with Down Syndrome, a government’s commitment to protecting the rights soldier losing his leg at war, or a person suffering a stroke of persons with disabilities. The UN CRPD is the first resulting in paralysis on one side of the body. A need for legally binding international convention providing a clear rehabilitation will occur, regardless of the condition. The 15 understanding of government responsibilities in addressing World Report on Disability defines rehabilitation as “a set of the right of people with disabilities to live independently measures that assist individuals who experience ... disability and to be able to participate fully in all aspects of life. The to achieve and maintain optimal functioning in interaction principles of the UN CRPD include, among others, respect with their environments”.
138 South African Health Review 2020 In South Africa, most stroke survivors and other persons with overwhelmed by the task of caregiver. The social worker disabilities will receive rehabilitation within the government can provide the family with the relevant knowledge of sector;16 however, rehabilitation is not always prioritised services available in the community context to assist within the sector.17 Non-governmental organisations (NGOs) them with this. have frequently stepped in where government services have • As a broker, the social worker mediates, defends, failed to provide for communities’ unique needs. They have and advocates on behalf of the client and serves as a the potential to innovate and specialise, while still partnering case manager within a multi-disciplinary rehabilitation with governments to deliver services,18 delivering services team.28-30 Interdisciplinary teams that include social for a small or no fee. In communities where resources are workers have been reported to pay increased attention limited, the only access that persons with disabilities may to patients’ wishes31 and to improve patient and family have to services such as schooling and employment may be involvement in ethical decision-making processes in through NGOs.19,20 their healthcare situations.32 Further, social workers can assist with caregiver burden by acting as mediators Social work support to persons with disabilities can refer between the family, the person with disability, and to the reconstruction and aftercare services of social work other health professionals in the rehabilitation process, intervention, focused on reintegration and support services ensuring that the concerns of families are also heard, to enhance self-reliance and optimal social functioning.21 understood and acknowledged. This is aligned with WPRPD5 pillars 3 and 4, i.e. ‘Supporting • As an enabler, the social worker facilitates client Sustainable Integrated Community Life’ and ‘Promoting systems to be more independent. This promotes and Supporting Empowerment of Persons with Disabilities’. interaction between individuals and the environment as Collaboration between social workers and persons with clients are empowered to make use of resources in the disabilities (and their families) can assist in promoting social community.33 Relieving caregiver burden refers not only inclusion and community living,22 which is what the WPRPD to supporting the family in the rehabilitation process, aims to work towards, aligned with NDP 2030 and the but also to empowering them to be able to continue UN CRPD. the role as self-sufficiently as possible. This can also be done by empowering the person with disability to be a Social work: understanding disability in context participant within the community, potentially minimising Social workers have worked in the disability sector at micro his or her dependence on family for caregiving. This in and macro levels since the beginning of their profession. turn will require advocating for the rights of persons with Further, they are responsible for promoting client/consumer disabilities in the community. participation at case level, agency level, and policy level, and for incorporating persons with disabilities as a critical Social workers and family caregivers often work together part of the profession.23 in the rehabilitation of persons with disabilities, and it is therefore important to look at the family caregivers’ role and A study of adults with acquired physical disability in South experience. Africa24 found that they experienced the stages of grief identified by Ross and Deverell,25 including shock/disbelief, relief, denial, bargaining, guilt, depression, anger, anxiety and acceptance. These stages correlate with the stages Families as caregivers of persons of grief identified by Kübler-Ross.26 This correlation should with disabilities in South Africa be noted, because when a disability occurs in a family, an adjustment needs to be made, and often the pre-disability life is grieved. Social workers play an important role in Most people with intellectual and developmental disabilities assisting persons with disabilities and their families in live with their families.34 Family caregivers often provide working through these feelings in the different stages. ongoing care, which often requires exceptional resources of Dorsett7 noted that social workers play a further role within a physical, emotional, social, and financial nature.35 the rehabilitation team in that they provide information and reassurance, help to explore meaning and appraisals, and The shift of rehabilitation services from being institutionalised assist with the development of problem-solving skills. to being provided at home has made the role of family caregivers pivotal in providing social and emotional support Pivotal roles of the social worker in the delivery of services for persons with a physical disability.36 Besides physical care to persons with disabilities and their families include (but are of the person with a disability, family caregivers must also not limited to) the roles of educator, broker, and enabler. coordinate multifaceted interventions while still balancing the • As an educator, the social worker provides information, needs of other family members.35 These interventions include education, and preventive care.27, 28 Besides educating helping their dependent family members with daily tasks, the community on how to prevent certain disabilities, making appointments, managing finances and medication, the social worker can assist families as an educator organising socialisation and recreational activities, and when the latter have to take on the role of caregiver. As supervising and assisting their family member with bathing, discussed in this chapter, many family caregivers feel meal preparation, and feeding.37
The role of social workers in addressing caregiver burden in families of persons with disabilities 139 Services used by family caregivers Family caregiver experiences According to Bronfenbrenner’s ecological perspective,38 A Cape Town study of family caregivers of persons family caregivers make use of different services on different with physical disabilities41,49 found that family caregivers levels. In his model, the microsystem is the immediate, experience various degrees of caregiver burden, including most intimate and closest system to an individual.39 The physical, emotional, financial, and social. The study included mesosystem refers to interconnections with two or more 20 family caregivers of persons with different physical influences outside the immediate environment, such disabilities (both congenital and acquired) and included as school and peer influences. The exosystem is the mothers, fathers and siblings as caregivers. A contributing community context, which may not be directly experienced factor to the caregiver burden experienced was long-term by the individual but that may influence the elements of the care for the person with disability, which led to other issues microsystem, while the macrosystem refers to the wider such as worrying about the future of the person with a social, cultural, and legal context that encompasses all the disability, and limitations on the family caregiver in terms of other systems.40 finding employment opportunities. Long-term care led to greater financial strain and affected the family caregiver’s In terms of this perspective, family caregivers make use physical and emotional health. of familial support, e.g. parents, spouses, life partners and their children (the microsystem).41 Support at this Physical health issues level helps family caregivers cope and enables them to Taking responsibility for lifelong caregiving of a person take better care of the family member with a physical with a disability may increase stress and impact the mental disability.41 Family caregivers also get a form of support and physical health of family caregivers.50 Caregivers from extended family members, friends, professionals, and tend to neglect their own health needs as they focus on other community members (the mesosystem).41,42 Further, it the needs of the person with a disability.35 Many reported was found that family caregivers of persons with physical chronic fatigue, sleep deprivation, chronic physical ailments, disabilities make use of community services (exosystem) shoulder pain, and lower back pain.35,41 Specifically, as to assist them with their caregiver role. These services the person with disabilities got older and gained weight, include social work organisations, disability organisations, the process of physically assisting them was heavy on public health clinics, public hospitals, rehabilitation centres, caregivers’ backs.41 tertiary hospitals, private hospitals, churches, special needs schools, mainstream schools with special aids, language Personal isolation centres, after-school training institutions, financial aid Isolation and loneliness indicate a need for social trusts, community transport services, horse-riding centres, connection.51 The added responsibility of taking care of a and guide-dog services.41 At a macrosystem level, family person with disability means that family caregivers are not caregivers make use of the South African healthcare able to go out as much as before. This can put them at risk system (both public and private), the education system, and of feeling personal isolation if they do not have other means disability benefits such as social grants.41 of support.41 In this context, a feeling of isolation is two-fold: feeling alone in not being able to socialise, and feeling ‘alone’ Caregiver burden among family caregivers in one’s circumstance, meaning without adequate support. A person’s disability is a triadic experience, which includes the person who has the disability, the family that is affected Lack of respite services by it, and the external environment affecting the disability. Caregivers of people with physical disabilities often feel that Informal care by a family caregiver is usually seen as a they need more time for themselves.41,52 A family caregiver cost-effective way of caring for persons with disabilities. stated: “It’s difficult. The thing is you don’t have your time. However, it can have difficult consequences for caregivers, I don’t have ‘my time’ ... I can never just go out and have including post-traumatic stress disorder, emotional coffee somewhere. Even if I go somewhere, I feel rushed”.45 distress, caregiver burden, depression, and anxiety.43,44 It is also common for caregivers to use respite hours These caregivers require services to support them in their to care for other family members rather than to restore caregiver role. themselves.35
Caregiver burden is an umbrella term used to describe the Employment concerns physical, emotional and financial experiences of a caregiver Due to the time-consuming responsibility of taking care in response to the challenges and demands of providing of a family member with a disability, family caregivers may help for a person with a disability.45,46 Their experience often have to reduce or completely resign from paid employment, manifests in feelings of responsibility, uncertainty about the leading to financial challenges.15 In a Cape Town study of person with disability’s needs, constant worries, restrictions family caregivers of persons with physical disabilities, half on the caregivers' social life, and the perception that of the participants were not employed at all. Some of them patients rely exclusively on their care,47 which often leads to were unemployed due to the caregiver responsibility they negative outcomes. It is important to analyse the effects of had to take on, as they were unable to make any other caregiving as disability affects the entire family, not just the provisions in caring for the person with disability due to person who is disabled.48 the lack of long-term care, recreational activities/groups, or
140 South African Health Review 2020 disability-friendly employment, which would have allowed but can also arise from long-term caring for a family for respite time and/or employment for the caregiver. This member with a (physical) disability. In many cases, initial situation could lead to financial challenges such as a loss family-caregiver reactions are negative and related to of salary and benefits, loss of promotional and training grief. Grief refers to the process whereby a person can opportunities, and a reduction in retirement savings.41 In the separate him or herself from someone or something words of one mother of a person with spinal cord injury: that has been lost.25 The five stages of grief identified by “I had to give up my job to take care of him. It was a big Kübler-Ross26 have been adapted to nine phases, namely sacrifice because it was an extra income that fell away”.41 shock/disbelief, relief, denial, bargaining, guilt, depression, anger, anxiety and acceptance.25 A mother of two children Financial concerns with disabilities (deaf and blind respectively), said: “When As discussed, lack of employment for both the caregiver my child went to school, I actually had like a part-time and the person with a disability can put extra financial strain depression. I had a breakdown. And for the first time in on the family. Caring for a person with a physical disability my life I had to go onto tranquilisers. And I am not one of sometimes requires additional spending, which may continue those people”.41 over a lifetime. In such cases, the need could arise for money to be put aside in a trust fund to ensure care of the person Giving up on personal dreams (caregiver) with a disability should the family caregiver pass away.2 Some (sibling) family caregivers have indicated how their Family caregivers have indicated that some of the financial caregiving role meant that they had to give up on their issues they face include medical service and equipment own dreams and aspirations. They expressed how they expenses, school-related expenses, and specialised transport still struggled to come to terms with the situation,45 as expenses.2,41 Financial struggles can lead to the additional evident in the following words: “It put a responsibility on my issue of not being able to access certain services. Parents shoulders for the rest of my life. I will never do what I really from a lower socio-economic background who might not be want to do”.41 The act of giving up on personal dreams and able to pay for private (special) education, will need to make aspirations can lead to family caregivers feeling ‘inward use of public medical facilities and public transport, and will anger’ and depression about their circumstances.25 most likely not be able to put money away in a trust fund for the child.2 The sister of a person with cerebral palsy, who had Correlation between caregiver experience and to take over the caregiver role after her parents passed away, emotional health expressed her situation this way: “My sister was in a school but In examining the findings of the Cape Town study of family only for two months ... financially we could not keep it up”.41 caregivers,41 a few recurring scenarios were observed. There was a clear correlation between lack of services or support Poor emotional health and negative emotional health. The different scenarios are Emotional health issues can start with the initial reaction illustrated in Figure 1 below: that family caregivers have to their new caregiving role,
Figure 1: Experiences leading to poor emotional health among family caregivers of persons with physical disabilities Lack of recreational services for persons with disabilities
LACK OF EMPLOYMENT Lack of access to services FOR CAREGIVER for persons with disabilities Lack of long-term care
LACK OF RESPITE TIME CONCERNS FOR FUTURE FOR CAREGIVER
Negative feelings
Feelings of isolation Lack of information
NO INFORMAL SUPPORT POOR EMOTIONAL LACK OF ACCESS TO HEALTH SERVICES
Source: Muller-Kluits, 2017.41
The role of social workers in addressing caregiver burden in families of persons with disabilities 141 In contrast, the study41 found that in cases with significant via pillars 3 and 4, which focus on integrating persons support, the outcome was positive. The study also found with disabilities back into the community. that once family caregivers have more respite time, they • Advocacy on the specific role of social work in the have more opportunity to find employment. Employment disability sector would also increase awareness of opportunities for family caregivers assist with financial support available to family caregivers to relieve some of concerns, which can reduce poor emotional health and the caregiver burden. potentially support positive experiences and acceptance of • As mentioned earlier, social workers have a vital role to the caregiver role. play in the multi-disciplinary team of service providers. Their holistic consideration of the individual in context, Addressing family caregiver burden: the social along with the role they play within the community, worker’s role are just some aspects that could be advocated and Social workers are important role players in delivering strengthened in the disability sector. services to people with disabilities. For instance, a South • Finally, when planning service delivery or policy African study on disability and poverty53 found that 31% development for persons with disabilities and their of persons with disabilities (and their families) identified a families in order to address caregiver burden through social worker as one of the main sources of social support social integration, it is important to use a bottom-up available to them. They also indicated that they were more approach in which the service users are consulted on aware of social workers than of other service providers such their specific needs. This approach could extend further, as home-based carers, community rehabilitation workers with service users serving as lay experts and peer and rehabilitation therapists.54 support for others.
According to the WPRPD, four pillars inform and guide the mainstream agenda for persons with disabilities, namely rights, empowerment, equality, and results.5 Social workers Conclusion have an obligation to assist persons with disabilities and their families with full integration into society, as aligned with As mentioned earlier, persons with disabilities depend policies such as the WPRPD. This involves assistance with greatly on the willingness and ability of their families to respite services and employment opportunities which will, in adopt unexpected informal caregiving roles. Cohen and turn, relieve the caregiver burden of family caregivers. Napolitano56 claim that a family’s response to disability has a powerful influence on the individual; they refer to the Social workers play a vital role in the multidisciplinary care actor, Christopher Reeve, who was paralysed after a horse- model of rehabilitation. They do psychosocial assessments, riding accident and who noted the importance of family psychosocial counselling, discharge planning, case support during his rehabilitation. However, many family 55 management, and psychosocial health education, using caregivers do experience caregiver burden as a result of the their knowledge of theories such as the social model, challenges they face in their new, often unanticipated, role the biopsychosocial perspective, and the ecological as an informal rehabilitation worker to their family member perspective in understanding how the individual interacts with a disability. Social workers’ understanding of the social with his/her environment. Specifically, the pivotal social- environment and their triple role as educators, brokers work roles of broker, enabler and educator in service and enablers can assist with the rehabilitation process. delivery to persons with disabilities (discussed earlier), can Collaboration between social workers and persons with assist with caregiver burden. disabilities (and their families) can help to promote social inclusion and community living,22 which is what the WPRPD aims to work towards, aligned with NDP 2030 and the UN CRPD. Social workers, therefore, play an important role Recommendations in assisting family caregivers in the rehabilitation of persons with disabilities. • Lack of respite time or lack of employment opportunities for family caregivers due to their strenuous caregiver role, can be minimised directly with increased integration of persons with disabilities into society. This could be done through recreational activities and disability-friendly employment for persons with disabilities. • Familiarisation with the WPRPD should be a key component in addressing caregiver burden. In fulfilling their triple role (educator, broker, enabler), social workers can utilise the WPRPD to plan service delivery to persons with disabilities and their families, specifically
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The role of social workers in addressing caregiver burden in families of persons with disabilities 145 REVIEW 15 Disability inclusion in the Northern Cape: a community-based wheelchair service project
Although a wheelchair provides a person Authors Ronique Waltersi with physical disability with the means Maria Britzi Erna van der Westhuizeni to access his or her basic needs, it is still necessary that the environment be prepared in order to facilitate the inclusion process. Without this, the ecosystem remains dysfunctional.
Approximately 70 million people globally require assistive government therapists to improve access to quality wheelchair device technology. Many of these people live in low-resource services and initiate sustainable systems change; and creating settings, where appropriate wheelchair service provision is awareness of barriers in the community leading to sustainable poor. Persons with long-term physical impairments require a systems change, namely identification and actioning of local mobility device to access resources within their communities referral pathways, in order to receive services. and to become active members of society. The wheelchair, therefore, serves as a tool facilitating the inclusion of persons Recommendations for future projects include: training with disability into their communities. local rehabilitation therapists on the WHO guidelines for wheelchair service provision, plus mentored support to Many projects have been implemented globally to reduce facilitate practical skills development in order for therapists the waiting period for wheelchairs and assistive devices to deliver quality wheelchair services; establishing a required by persons with physical impairments. This chapter standardised mechanism for referral pathways to local explores the effects of a three-year capacity-building services, with the roles and responsibilities of each individual intervention undertaken in local rehabilitation departments in clearly identified to ensure fluidity of referrals and processes the Northern Cape to improve wheelchair service provision from one level of service to the next; and training for parents, and quality, increase access to services for persons with community healthcare workers and other healthcare, social disabilities, and promote social inclusion. and education professionals in order to establish a network of individuals capacitated to identify and support persons Project objectives included demonstrating positive outcomes with disabilities. Community-based outreach-seating clinics of public-private partnership in addressing the need for are more effective if offered at venues that are central and appropriate mobility devices; building the capacity of local accessible to community members.
i Shonaquip Social Enterprise
Click to navigate Framing the debate on how to achieve equitable health care for people with disabilities in Southto Contents Africa 147 This case study describes the process and outcomes of a Introduction three-year cross-sectional, blended-funding, public-private partnership that was formed to improve access to appropriate Wheelchairs improve the health and quality of life of the mobility devices for children in the Northern Cape (NC). The wheelchair user, as well as the quality of life of the family. partnership between Shonaquip Social Enterprise (SSE) (a a A wheelchair facilitates inclusion, and is a basic human subsidiary of Shonaquip, a non-governmental organisation right.1 Appropriate wheelchair service provision programmes (NGO)), Sishen Iron Ore Company-Community Development support the social model of disability, wherein physical Trust (SIOC-cdt), and the Northern Cape Department of barriers in the environment are addressed to facilitate Health (NCDoH), arose from a longstanding relationship improved social cohesion of persons with disabilities and among the key role players and operated in two clusters (17 their families, and to promote improved quality of life for all.1 towns) in the NC. Some of the issues that the partnership set out to address were the need for assistive device Once mobile, the individual is able to attend medical technology, upskilling of professionals, and the non-functional appointments, seek employment, attend school, and perform government systems preventing the inclusion of persons with daily activities. It also allows the person to participate in disabilities. The focus of intervention extended to include social activities with friends and family, which ultimately builds those elements in the ecosystem of the child, such as the stronger connections, and thereby lessens the marginalisation family, community, support services (health, education and and isolation faced by many persons with disabilities.2 social) and policies, which contribute to the inclusion of a person with disability.2 “Thus an ecosystem that is functional The purpose of the World Health Organization (WHO) will facilitate the inclusion of a person with disability, while a guidelines for wheelchair service provision in less-resourced dysfunctional ecosystem will undermine their ability to access settings3 is to promote personal mobility with the greatest much-needed services, and result in continued isolation, possible independence for persons with disabilities; to community stigma, health risks, lack of education, poverty 2 enhance the quality of life of users in less-resourced and violations of human rights”. settings through improved access to wheelchairs; and to assist member states in developing a system for wheelchair “This ecosystem approach [is] informed by the community- provision.3 The WHO also recommends the following based rehabilitation (CBR) matrix, which identifies guidelines3 to ensure effective wheelchair service provision five components needed in order to reach inclusion: in low- and lower-middle-income countries (LLMIC): health, education, social connection, livelihood, and 5 • Referral and appointment: Best practice would be to start empowerment”. a new client file, and to train the referral network staff, i.e. the staff members involved in identifying the client. The service offered by SSE extended beyond wheelchair • Assessments: These should be completed by trained provision to capacity building among local service providers, personnel, and include a holistic view of client needs, family, and community members to remove barriers and 6 i.e. their physical condition, lifestyle, age, environment enable children to access support services. In this way, and culture. wheelchair users were able to use their mobility device as • Prescription: Trained personnel and the client should a tool for personal development, and benefit from social choose the final device, as well as the necessary inclusion and meaningful community participation. features required. Ideally, the wheelchair user should be able to test different device options. A needs assessment identified the following challenges: • Funding and ordering: There should be established confusion about the number of children on the NCDoH ordering and procurement systems and clear assistive device waiting lists; lack of trained therapists able agreements with suppliers on ordering and delivery. to provide wheelchair provision services; lack of knowledge • Product preparation: Prior to fitting the device, trained on the part of families of children with disabilities regarding personnel should do a mock set-up of the device to which services they needed to access, and/or that they ensure that the fitting process goes smoothly. could and should access certain services in order for • Fitting: This should be done by a trained seating the child to be included; and parents and caregivers not practitioner who discusses the fitting with the user/ understanding the child’s condition or how to stimulate parent/carer. and support the child. Additionally, the needs assessment • User training: The wheelchair user and/or caregiver highlighted the presence of systemic barriers in accessing should be trained in mobility, safety, usability, transfers, and actioning referral pathways. and basic repair and maintenance. • Follow-up, maintenance and repair: Regular clinical and technical reviews of client and device should be scheduled, especially in the case of children who may develop secondary complications.4 a Shonaquip is an NGO working to provide well-fitted, appropriate wheelchairs to children with mobility impairments. The NGO was established 10 years ago, and subsequently expanded to form a hybrid social enterprise known as Shonaquip Social Enterprise (SSE).
148 South African Health Review 2020 Impact tools and results Key findings Impact tools developed by the SSE generated pre- and post- intervention data collected from participating occupational This section reports on the findings of a three-year therapists and physiotherapists. Primary data-collection intervention in two clusters in the Northern Cape. tools for the study included: • A competence and confidence questionnaire to assess Community-based outreach seating model how confident therapists felt after being supported and A community-based outreach (CBO) seating model was mentored to plan and execute outreach seating clinics. adopted. Trained wheelchair seating professionals from • An appropriateness-of-device questionnaire, indicating SSE provided mentoring1,b and training support to National appropriateness of devices prior to and post mentored Department of Health (NDoH) and NCDoH rehabilitation support from the SSE. staff. A one-day centralised training workshop was held to • A training feedback form giving feedback on training 2 upskill local therapists on local tender products, and how experienced post SSE intervention. to complete a specification sheet and place orders through the government tender. This was followed by a two-day Therapists applying the WHO wheelchair service provision mentored seating clinic. During this time, the NCDoH guidelines were issued with a questionnaire to assess therapists were able to assess existing clients on their own and measure their competence and confidence on each assistive-device waiting list, and with the mentored support guideline (the guidelines being: assessment, prescription, of the SSE clinical team, make prescriptions for appropriate product preparation, fitting, user training, follow-up, and assistive devices. Mentored seating clinics were conducted maintenance and repair). In each instance, therapists at six-monthly intervals, and included therapists from all indicated their assumed level of competence and the major hospitals and community healthcare centres confidence by rating themselves on a scale from one to five, (CHCs) in both clusters. On completion of the assessments, with one meaning that they had a low level/least amount of another site visit was scheduled six months later to host competence and confidence, and five meaning that they felt outreach-seating clinics (ORCs). The purpose of the ORCs fully competent and confident to perform an assessment. was to mentor rehabilitation therapists on the remaining The highest achievable score was 35, if the therapist rated WHO guidelines, i.e. product preparation, fitting, user him-/herself five on each of the guidelines. training, follow up, maintenance and repair. The two-day onsite training was adapted to include a module on repair, The SSE team also completed the confidence and refurbishment and technical training, and to optimise used competence questionnaire in order to rate each therapist equipment to assist more clients awaiting assistive devices. based on the skills they demonstrated during the outreach As most therapists do not have regular access to technical seating clinic. The results indicated that the DoH therapists support, they found this to be useful. rated themselves much higher than the SSE team members after the second site visit to both clusters. Prior to the intervention, 150 children required assistive devices across the two clusters, and 40 therapists were After the second site visit to both clusters, the SSE team trained on wheelchair service provision. Inclusion criteria members recommended continued mentoring support, for the beneficiaries (children receiving assistive devices) although there had been a vast improvement in the skills were that they had to have been assessed previously, and of the therapists post intervention. It was also clear to the be awaiting an assistive device. Some cases were flagged therapists themselves that they required ongoing mentored 6 as critical because of the risk of developing secondary training and support after the first training. complications. During the initial assessments, beneficiaries may have All devices were funded through blended funding arrived in an existing device or may have been placed on streams from the SIOC-cdt, the SSE, and the NCDoH. a waiting list for a device prescribed prior to the training Written consent for the study was obtained from the workshop. The results indicate an increased ability on the physiotherapists and occupational therapists who part of the therapists to prescribe an appropriate wheelchair. participated in the workshops, as well as from all In cases where the device was partially appropriate, it was beneficiaries or their guardians. At the end of the first year, because the children who were originally assessed, had not the intervention had cleared the waiting list, having assisted arrived to receive their wheelchair on the day of the fitting. 159c beneficiaries, and trained 40 therapists using the New children, who had been identified and assessed in the community-based outreach seating model. time between SSE team visits, were issued with the devices prescribed for the original group of children. This resulted in children receiving a partially appropriate device, and alterations were required to ensure that the devices would become fully appropriate. It was agreed that the children b Mentoring = a process or relationship in which a more experienced person guides and advises a less experienced person. c A further nine children were subsequently identified.
Disability inclusion in the Northern Cape: a community-based wheelchair service project 149 assessed originally would be issued with a device at the As many therapists were in their community-service year, next seating clinic. In addition, different therapists attended this was their first engagement with wheelchair training different seating clinics. This situation led sometimes to the and it contributed to an increase in both knowledge prescribing therapist selecting a particular device, and the and confidence. Clients previously at risk of developing device later being found to be inappropriate by the SSE secondary complications, and marginalised through not team on the day of the fitting.6 receiving basic health care and support, were identified in order for them to access the next level of care. Comments from rehabilitation therapists post training were as follows: Addressing the environment Although a wheelchair provides a person with physical I liked being teamed up with experienced therapists to learn disability with the means to access his or her basic needs, from them, and to be in a small group where I could ask it is still necessary that the environment be prepared in questions about the patient being assessed and seated. order to facilitate the inclusion process. Without this, the (RML) ecosystem remains dysfunctional.
I learnt a lot. I feel better about assessing, although there Therefore, in parallel with the outreach seating clinics, and are still some issues for me with prescribing and confidence acknowledging that persons with disabilities experience in proper fitting.(CL) barriers in their communities, additional training was provided in the form of ‘Let’s Talk Disability’ (LTD) workshops.
The twins from Gamorana village Young identical twin boys live with their mother in a hitching a ride on the back of a truck. No rehabilitation remote rural village in a mining area in the Northern therapists ever service this remote area. If children are Cape. The nearest small town, Kuruman, is almost two able to get to one of the larger towns they may be seen hours’ drive away along sandy, potholed roads. The once off, but there is no regular outreach programme village is deep in the bush, and the families have no or three-monthly reviews. There is a government- local clinic. A mobile van visits the village for social funded multi-disciplinary education support team, which grants. A local community worker brings the outreach supports rehabilitation in the broader region, but true team to the family’s simple, one-roomed shelter, hand- transdisciplinary services are in their infancy. built with clay. Like other families in the village, the twins’ mother has little reason to trust service providers. Once fitted correctly, there was a noticeable change “Everyone promises to come back, few ever come in the twins’ ability to interact with their surroundings. again”. This is a close-knit community and families Their mother noted that they were able to eat, breathe, are an integral source of support to each other. Few play and communicate with greater ease. She also comprehend the nature of their child’s disability, what noted that with her sons now comfortable in their their rights are, or how their child’s future might look. devices, she would be able to find a day care centre for them, so that she could return to work. The physical To the surprise of the outreach team, both twins have burden of caretaking was also lessened, as she did not Madiba buggies, very rare in a village like this where have to physically carry each child while performing children with mobility disabilities are typically carried household activities. around on their mothers’ backs. Available wheelchairs are unsuited to the terrain, so tyres wear out, wheels The SSE team trained the twins’ mother on how to break, and brakes soon become faulty. Repairs may take manage their positioning outside of their wheelchairs over a year, during which time the growing child is at as well. At a later follow-up visit, the SSE team was able risk of developing spinal deformities or pressure sores. to issue the twins with side lying devices, in order to Children sometimes wait as long as four years to receive ensure that they were able to sleep comfortably and a mobility device, by which time the device prescribed safely at night, and the family no longer have to share is often no longer suitable. Few therapists have the a bed. The family is now able to interact socially with necessary expertise to provide the appropriate postural others in their community and the twins are no longer support for a developing child with advanced needs forced to live within the confines of their home. complicated by secondary deformities. The outreach team notes that the twins’ devices have not been fitted The team members will never forget the mother’s correctly. The nearest basic services are about two hours words: “You have built up my trust in the healthcare away and can only be reached by donkey cart or by system again. Thank you”.
150 South African Health Review 2020 These were offered to parents of persons with disabilities, as technical maintenance, for every client seen or issued with a well as disability stakeholders in the community. new device. The purpose of the LTD workshops was to open a dialogue between departments of Health, Education, Social Previously, the ongoing costs were not accounted for or Development and other local stakeholders on disability, reflected in the way in which the waiting list data were and explore how to identify and reduce barriers. Through reported. Initially, once a client received a device s/he was connecting stakeholders and establishing functioning removed from the hospital database, effectively indicating referral pathways, SSE aimed to rebuild the ecosystem and that no further intervention was needed. As a result of this, drive sustainable change from within. the budget allocated to the hospital for assistive device technology stagnated, and was insufficient to provide for or Key breakthroughs arising from the LTD workshops were reflect the true needs of the community. that the participants experienced increased awareness of: • The need to formalise local referral pathways and how The study found that building the capacity of local to action them. government therapists led to improved access to quality • Essential services that could support them (the wheelchair services for communities, and sustainable therapists) and/or the children within the community. systems change. Further, the implementation of outreach • The social model of disability, and how this led to a seating clinics proved to be crucial in influencing the quality lessened feeling of shame and exclusion among the of wheelchair service provision and sustainable systems children with disability and their families. change in both clusters. • Barriers within the community and how to address them. In training existing professionals on the WHO guidelines for wheelchair service provision within the NCDoH, therapists were able to provide quality and sustainable services to Conclusion clients in need of assistive device technology, as the skills and knowledge required for implementation became embedded within the capacity of local government providers. This project demonstrated the positive outcomes of a public- private partnership in addressing the need for appropriate As training was provided with the goal of influencing the mobility devices. Through blended funding streams system (by aligning service delivery with WHO standards), and a public-private partnership, the SSE, SIOC-cdt and as opposed to providing clinical training in isolation, local NCDoH were able to address the need for assistive device therapists were able to utilise a holistic approach when technology, upskilling of professionals, and identification of delivering wheelchair services. In addition to this, all non-functional government systems preventing the inclusion outreach seating clinics were hosted at venues within the of persons with disabilities. community, which allowed for improved access to services for the community. Implementation of the community-based outreach model proved to be a crucial factor in beginning to identify and Creating awareness of barriers in the community among address gaps in the system, and in introducing functional local government, the community, and local disability waiting lists. Appropriate costing should be done to stakeholders, led to sustainable systems change in terms of address the mobility device needs of all persons with identifying and actioning local referral pathways. disabilities in a community. As a person with a physical impairment will not use the same device over the full In hosting the LTD workshops, the SSE and NCDoH were course of his or her life, it is imperative that the budget able to further align their practice with the community- be allocated to reflect these ongoing needs. For this, a based rehabilitation matrix in the community, promoting functional waiting list is required, reflecting the assistive inclusion through self-advocacy, awareness-raising, and device needs of every client over the full course of each empowerment. Key outcomes included: financial year and beyond. After a client receives an • Increased awareness in the community as to which appropriate device, that client should: services were available to them, and how to action • Be allocated funding for the time spent on the next referral pathways. seating review in 4 - 6 months’ time (human resources). • Identification of barriers to inclusion within the • Be allocated funding for the technical spares/covers/ community, in order to start addressing these. foam components that will be required at the next • Empowering the community with knowledge and review (financial and physical resources). creating open dialogue between local government and • Be allocated to a waiting list for a new device in roughly the community, in order for the community to drive the 3 - 5 years (financial, physical and human resources). change needed from within. Budgets should be continuously updated to account for new devices, spare covers and foam components, as well as
Disability inclusion in the Northern Cape: a community-based wheelchair service project 151 Fresh thinking on how to deliver sustainable services, Adaptations in light of Covid-19 improved support systems with increased awareness and service access, and fluid processes between service levels, “South African parents struggle to access health and will help persons with disabilities to become productive, educational services for CWD [children with disabilities], and contributing members of society. many are reliant on state-funded facilities. Continuity of care becomes possible where professionals or trained caregivers For change to happen, the SSE recommends the following: transfer skills to family members, to mitigate factors that • Establish disability forums for all communities, including hinder continuity of care of CWD, by providing home-based all disability stakeholders in the community. This will visits”.7 Shifting toward remote clinical support was also allow open dialogues to be held on disability-specific found to be of benefit. challenges in order to identify barriers (relevant to the community) and seek out possible solutions using local Programmes that directly involve parents and carers of resources. persons with disabilities are currently much needed and • Establish a standardised mechanism for referral overlooked. The Covid pandemic has left many families pathways to local services, with the roles and underserviced, and parents can be isolated in meeting the responsibilities of each individual clearly identified, to daily needs of their children. For this to change, parents ensure fluidity of referrals and processes from one level must be empowered to ensure the health of their children. of service to the next. • Introduce training for parents, community healthcare In light of the Covid-19 pandemic, the study and inputs into workers, other healthcare professionals, and social and the project have been adapted. The SSE has undertaken education professionals, in order to establish a network training of NCDoH staff remotely via social media platforms, of individuals who are capacitated to identify and using the community-based outreach model, as well support persons with disabilities. as community-based play and learning. Therapists and • Ensure regular community-based outreach seating supporting referral professionals (community healthcare clinics to address the need for appropriate assistive workers, community leaders, speech therapists and device technology and wheelchair-related services. dieticians) have received training on the principles of Clinics should be delivered at venues that are central 24-hour positioning in the home, defining disability, the and accessible to community members. rights of persons with disabilities, and adaptive techniques • Introduce in-depth wheelchair service provision to facilitate play and learning in the home. In training the training at undergraduate level for physiotherapy and professionals, these skills can be transferred to parents, in occupational therapy students, in order to prepare order for parents to continue to provide the necessary care future therapists for the realities of wheelchair to their children while adhering to lockdown regulations service provision before they enter their community- and preventing a rise in Covid-19 infection by not attending service year. This will provide students with a base their regular therapy sessions. The training also aids in of knowledge to start or continue services in their capacitating professionals who are not usually involved respective community-service placements. in rehabilitation, to identify clients in the community, and • Ensure training for local rehabilitation therapists using act as a resource and referral pathway to families in their the WHO guidelines on wheelchair service provision, community. as well as mentored and remote support to facilitate practical skills development. • Ensure accurate record keeping and handover to ensure that clients are not lost to follow-up. Recommendations • Ensure adequate data capturing to establish a functional waiting list that reflects the needs of clients for assistive device technology throughout their lifespan in order to The underlying thread in all dysfunctional health ecosystems allocate sufficient budget to address and reflect the true is lack of awareness, absence of training, siloed service needs of the community. delivery, and lack of formal systems. In order to address the needs of a community, understanding and immersion are necessary in the context of that community.
152 South African Health Review 2020 Study limitations References
Therapists who attended the community-based outreach 1. McSweeney E, Gowran RJ. Wheelchair service clinics managed their time between the training and their provision education and training in low and lower middle daily work commitments. Different therapists attended income countries: a scoping review. Disabil Rehabil Assist different training days, and only 35 of the 40 therapists Technol. 2019;14(1):33-45. trained received the full training, and completed all the 2. Van der Westhuizen E, Murray J. An advocacy project: impact tools. The primary data sources were compiled using A cost analysis of the disability-related costs borne by data from the therapists who attended all the sessions. families of children with mobility disabilities. 22 October Although the primary data collected reflect the perceptions 2020. URL: https://shonaquip.co.za/wp/wp-content/ of 87.5% of the participants, results may have reflected a uploads/2020/10/Cost-Analysis_Article.pdf. degree of variation had all therapists completed the impact tools. Therapists are currently participating in training 3. World Health Organization. Guidelines on the provision remotely (via Zoom and WhatsApp), and it has been agreed of manual wheelchairs in less resourced settings. Geneva: that clients will be attended to before and after the sessions, WHO; 2008. URL: https://www.who.int/publications/i/item/ in order for therapists to complete the course in its entirety. guidelines-on-the-provision-of-manual-wheelchairs-in-less- resourced-settings. The WHO wheelchair service provision guidelines state that 4. Visagie S, Scheffler E, Schneider M. Policy a significant step in the process includes that appropriate implementation in wheelchair service delivery in a rural funding and ordering processes be in place. The standard South African setting. Afr J Disabil. 2013;2(1):63. procedure in all South African government settings is that therapists place orders for assistive devices with the 5. Understanding Community Based Rehabilitation in procurement department of their institutions. This step South Africa: Report on a case study conducted by CREATE. needs to be strengthened. If the procurement department Scottsville, KwaZulu-Natal: CREATE; 2015. URL: http://www. requests alternative quotes from tender suppliers in order to create-cbr.co.za/wp-content/uploads/2019/02/CBR-Study- source the most cost-effective solution, the clinical needs of Report.pdf. the client may be overlooked. 6. Van der Westhuizen E. Shonaquip Social Enterprise, Impact Report; 2019. URL: https://shonaquip.co.za/2019- It is therefore imperative to train all procurement impact-report/. departments in the clinical relevance of equipment. At the same time therapists should be trained in the process of 7. Khan G, Isaacs D, Makoae M, Fluks L, Mokhele T, motivating for specialised equipment. This will ensure that Mokomane Z. Service providers' perceptions of families clients do not receive devices that are inappropriate in caring for children with disabilities in resource-poor settings terms of their physical needs and functioning. in South Africa. Child Fam Soc Work. 2020;25(4):823-31.
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Disability inclusion in the Northern Cape: a community-based wheelchair service project 153 REVIEW 16 Toward ‘Rehab 2030': building on the contribution of mid-level community- based rehabilitation workers in South Africa
Achievement of the Rehab 2030 vision Authors Susan Philpotti is only possible if stakeholders in the Pam McLarenii Sarah Ruleiii rehabilitation sector unite, particularly in resolving the acute need for human resources.
This chapter discusses community-based rehabilitation CBR be included in a strategy for health care and that (CBR), with a particular focus on mid-level community advocacy and dissemination of information on CBR be rehabilitation workers (MLCRWs). The case for CBR was considered essential. It is recommended that persons supported by the founding and co-operation of two key with disabilities and their organisations be included in stakeholder groups, viz. the Rural Disability Action Group, planning, implementing, and evaluating CBR programmes. and Disabled People South Africa. This collaboration has Additional recommendations made are for the re-activation been important in training MLCRWs in varied contexts of MLCRW training, and the improvement of multi-sectoral over the past 40 years. The chapter recommends that collaboration for CBR.
i School of Education, University of KwaZulu-Natal ii Disability Action Research Team iii Liminability
Click to navigate to Contents individuals with health conditions, in interaction with their Introduction environment”.1 The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) (Article 26) ‘Rehabilitation 2030: a call for action’1 was launched by the on habilitation and rehabilitation emphasises that these World Health Organization (WHO) in 2017, to strengthen interventions should begin early and be available as close provision of rehabilitation services globally. The call provides as possible to where persons with disabilities live, including 6 an opportunity for South Africa to revisit its history with in rural areas. regard to rehabilitation, to identify factors that have assisted or hindered the provision of appropriate services to date, Community-based rehabilitation (CBR) has been defined and to make recommendations regarding the training and as “a strategy within community development for the deployment of a rehabilitation workforce. This chapter rehabilitation, equalization of opportunities, poverty 7 focuses particularly on the contribution that mid-level reduction and social inclusion of persons with disabilities”. community rehabilitation workers (MLCRWs) can make to The WHO has developed a set of CBR guidelines that rehabilitation that is accessible and appropriate, in order identify different components on a CBR matrix, including 7 to ensure universal health coverage and ‘rehabilitation for empowerment and a social component. Rehab 2030 all’ under National Health Insurance (NHI). The term ‘mid- envisages CBR as a means “to realize human rights and level community rehabilitation worker’ refers to a multi- development objectives at the community level, based on a skilled worker trained to identify persons with disabilities comprehensive multi-sectoral approach, which can empower 8 at community level and facilitate intervention in the health persons with disabilities and their families”. CBR is seen to sector.2 A major component of the MLCRW role has been be of particular value in resource-constrained settings, where to promote the empowerment and participation of persons services can be provided by MLCRWs, with the measure with disabilities and their families. MLCRWs have been (indicator) of success being the proportion of the population 3 referred to by different titles in different areas. covered by CBR or other community services.
Disability is not only a global public health and human rights issue, but also a development priority3 that disproportionately affects women, older people, and Shift in approach to disability people living in poverty. Globally, it is estimated that 74% of the total number of years lived with disability are due A major shift has taken place since the 1970s/80s with to health conditions that cause limitations in functioning regard to understanding disability. Historically, disability has 1 and that can benefit from rehabilitation. Rehabilitation been associated with illness and incapacity, with the focus benefits the individual and family as it improves a person’s on the ‘defect’ or ‘inability’ of a person to perform certain independence, supports his or her ability to return to work tasks, such as being unable to hear or walk. The ‘medical and/or other social roles, and reduces costs related to care model’ of disability is understood as the approach in which and support. At societal level, rehabilitation reduces the medical personnel (surgeons, therapists, etc.) are believed length of stay in hospital, decreases re-admission rates, and to have sole expertise and therefore to be best placed to 3,4 prevents expensive complications. take decisions on behalf of persons with disabilities who are seen to be passive and dependent on the expert to provide Globally, however, the need for rehabilitation is greater a cure or care for them. than the services provided; in particular, people in lower- and middle-income countries (including South Africa) In the 1970s, an alternative approach was advocated, based 5 tend to have poor access to rehabilitation services. In on the premise that disability arises not so much from the many countries, health systems do not have the capacity impairment of the individual, as from barriers in society that 1 to provide the necessary services. Challenges include serve to exclude him or her from participation. Removal insufficient numbers of appropriately trained professionals, of these barriers is the prime focus of the social model of ineffective service models, and lack of integration and disability, in which disabled persons are recognised as 3 decentralisation of services. This is compounded by being the agents of their own development.9 It follows, then, under-utilisation of rehabilitation, which could be attributed that empowerment of persons with disabilities is crucial, to lack of access due to transport challenges and costs of both in overcoming oppression and powerlessness and the service (particularly in rural areas), as well as lack of in supporting their participation in decision-making. This 1 awareness of the importance of rehabilitation. empowering role has been played by CBR workers.10
There has also been growing affirmation of disability as a human rights issue, with discrimination on the grounds of Rehabilitation and CBR disability being prohibited in the South African Constitution of 199611 and confirmed by South Africa’s ratification of the Rehabilitation has been defined as“ a set of interventions UN CRPD. Key international documents affirm that disability 7,12 designed to reduce disability and optimise functioning in is a human rights issue.
156 South African Health Review 2020 The inclusion of Article 26 “Habilitation and rehabilitation” negative impact on CBR and its realisation in South Africa. in the UN CRPD6 provides the foundation for a rights- Nonetheless, there were pockets of innovation. Examples based approach to rehabilitation. The WHO recommends include the Prozesky and Draper model, which prioritised that state parties address barriers to rehabilitation by inter the promotion of community involvement through project alia increasing human resources, including training and committees and training of lay community health workers.20 retention of rehabilitation personnel, and expanding and This subsequently became known as a potential model for decentralising service provision.12 future healthcare delivery as part of a wider project of total community development.20 Unfortunately, the subsequent priority given to a curative, hospital-based approach20 and selective PHC20 was also negative for CBR. Global disability priorities CBR was dealt another blow when community health was incorporated into the wider field of public health. In The 2030 Agenda for Sustainable Development and the particular, the challenge of measuring the impact of CBR in associated 17 Sustainable Development Goals (SDGs) (to terms of cost-benefit analysis became a major barrier. This which South Africa is a signatory) provide a framework for created challenges when attempts were made to measure countries to take action on development priorities.13 The disability, even though two international classifications of Agenda undertakes to leave no one behind, including disability were formulated over time.21,22 It was only in 2015 persons with disabilities. Although limited progress has been that a CBR indicator manual was published.23 Another factor made, persons with disabilities still encounter numerous contributing to the loss of valuable experience of rural PHC barriers to full inclusion and participation in the life of their doctors and therapists in implementing community-based communities. Barriers include lack of access to essential health approaches was the amalgamation of the previously services, rehabilitation, and support for independent living separate KwaZulu and Natal health departments. Many – all of which are essential to the full and equal participation changes took place during this amalgamation, including a of persons with disabilities as beneficiaries of development moratorium on the training of community health workers, and agents of change.14 which diminished the human resources available for CBR.24 SDG 3 aims to “Ensure healthy lives and promote well-being for all at all ages”. The WHO Global Disability Action Plan Policy developments The White Paper on the Transformation of the Health 2014-2021 envisages rehabilitation as a key health strategy System in South Africa25 was issued in 1997, however for achieving SDG 3, as it aims “to optimize functioning and there was little recognition of CBR and rehabilitation in this support those with health conditions to be as independent document. Overall, health-service planning and provisioning as possible and to actively participate in the society.…”8 overlooked rehabilitation as a component of PHC, putting persons with disabilities and their families at greater risk of Identification of CBR as a key health strategy for achieving experiencing the quadruple burden of disease.26 The link healthy lives and well-being seems to be at odds with between PHC and CBR was weakened. It was only when the definition (above), which describes acommunity- the initial burden of disease studies for South Africa were development strategy. CBR is about collective action in published in 200027 and linked with the global studies partnership with persons with disabilities and their families exploring disability adjusted life years (DALYs) that the link to address matters of health, education, livelihood, social with rehabilitation was re-established,28 and measurement engagement, and empowerment.7 The challenge with CBR of disability was seen to embrace both quantitative and is to ensure that key sectors work collaboratively and on an qualitative elements. equal footing together with persons with disabilities using a developmental approach. The National Rehabilitation Policy29 was adopted in 2000 and referred to CBR as a ‘philosophy’ rather than a strategy. This meant that the opportunity to prioritise CBR in a Overview of CBR in South Africa national rehabilitation policy failed because no resources could be allocated to a philosophy. In 2016, the Framework and Strategy for Disability and Rehabilitation Services (FSDR) The development of CBR in South Africa has been was launched, stating that rehabilitation services at each influenced by a range of social, economic and political level of care were to be comprehensive and based on the issues, including the alliance of the disability rights strategy of CBR.30 The description of services to be provided movement with the anti-apartheid movement. At international at home and at community level included the following: level, the Alma Ata Declaration, the WHO guidelines and “Utilise community rehabilitation workers and peer support the publication of Disabled Village Children represented counsellors within homes and communities wherever emerging support for CBR.15-17 The subsequent shift from a possible”.30 To date, there has been no provisioning for CBR comprehensive approach to primary health care (PHC), to services across the lifespan, and the FSDR lacks provincial selective PHC, which focused on prevention and treatment implementation guidelines. of a few diseases in ways that could be measured,18,19 had a
Toward ‘Rehab 2030': building on the contribution of mid-level community-based rehabilitation workers in South Africa 157 The White Paper on NHI31 acknowledges rehabilitative and therapists (RuReSA).37 This alliance took advocacy to a care as part of the PHC continuum. However, one of the new level. Representation with the National Department of shortcomings of the White Paper is its lack of alignment with Health (NDoH) became possible, and resulted in compilation the FSDR31 and with the provisions for rehabilitation within of the FSDR to which many RuReSA members gave input. the UN CRPD. Further, review of progress in implementing However, the alliance did not include representation by the NHI reveals that although indicators should relate to the disability sector. span of services in universal health coverage,32,33 there are currently no indicators relating to comprehensive The alignment between RuDASA and RHAP, and the rehabilitation services.26 formation of RuReSA in 2011, assisted in ensuring a unified voice for rural health providers with regard to appropriate South Africa has domesticated the UN CRPD through the services. The creation and fostering of these powerful White Paper on the Rights of Persons with Disabilities partnerships has enabled re-engagement with and (WPRPD).34 As articulated in the WPRPD and UN CRPD, advocacy for the training of MLCRWs, to provide human- CBR is not confined to the health sector, but speaks to the resource capacity for disability and rehabilitation under NHI. range of rights of persons with disabilities. The work of To date, this has not progressed further towards a formal CBR Education and Training for Empowerment (CREATE) proposal and implementation. illustrates that CBR can be seen as a means by which to realise the rights of persons with disabilities.35 From 2014, the RUDASA conferences have included therapists, clinical associates and rural nurses. These rural Advocacy alliances health conferences have provided a platform to promote During the period 1984-2020, two key advocacy partnerships the importance of MLCRWs, especially from 2016. A keynote shaped the development of CBR in South Africa. speaker at the 2019 conference was a staff member of CREATE, herself a person with a disability and parent of a 1984-1995 disabled child. At the conclusion of the 2019 conference, The first partnership was the alliance between persons with RuReSA drew up a resolution to advocate for the re- disabilities, represented by Disabled People South Africa instatement of training of MLCRWs. (DPSA) and rural therapists through the Rural Disability Action Group (RURACT). Other key role-players were Understanding CBR civil society and government officials of rural ‘homeland’ Historically, there have been various factors affecting governments. RURACT was launched in 1987, later hosting a how CBR was understood. For example, in Mpumalanga, series of CBR conferences and seminars bringing together the programme of Disabled People South Africa (DPSA) (for the first time in South Africa) persons with disabilities chose to focus on development, advocacy and activism, and rehabilitation therapists around the country. Not only thereby shifting from rehabilitation to development and did this partnership promote the extension of the disability self-representation. In 2014/15, CREATE conducted national rights movement to rural areas,36 it also helped to mobilise research into knowledge of CBR in South Africa, to ascertain support for persons with disabilities and their families to be whether there had been a shift in conceptualisation of intimately involved in shaping and providing rehabilitation CBR in line with international developments. Respondents services together with rehabilitation professionals. For included persons with disabilities, CBR facilitators, and example, it enabled the development of the Mpumalanga government officials, although the majority described CBR Disability Support Project, which commenced in 1998. themselves as therapists. While 96.5% of respondents claimed to have been exposed to the concept of CBR, Despite complex power dynamics, RURACT challenged the less than 20% indicated that they were up to date with three professional rehabilitation associations (Occupational developments in CBR.38 This study found a general lack Therapy Association of South Africa, Physiotherapy of understanding (including in government departments) Association of South Africa, and South African Speech- regarding the scope of CBR and its potential as a strategy to Language-Hearing Association) on the importance of achieve realisation of the rights of persons with disabilities. developing CBR in rural areas. Although additional pressure to act against Apartheid was exerted on these associations Training of mid-level community rehabilitation by their world federations, this did little to effect a shift to workers more equitable access to rehabilitation. Various CBR training programmes for MLCRWs were initiated in South Africa from the early 1980s. While most The strong partnership forged between RURACT and DPSA of them focused on participation and empowerment of in 1987 held until 1995 when RURACT was disbanded. persons with disabilities in directing their own development, the programmes differed with regard to duration and 2011 and ongoing structure, as well as with regard to how MLCRW roles were A second important advocacy partnership was facilitated conceptualised. For example, in some cases community by the Rural Health Advocacy Project (RHAP), which rehabilitation facilitators (CRFs) were equipped to provide brought together key rural health providers, harnessing basic rehabilitation services, while in other cases, CBR the collective bargaining power of rural doctors (RUDASA)
158 South African Health Review 2020 consultants were trained to refer clients to services and decade substantial research has been done on the unmet resources rather than to provide services themselves. needs of persons with disabilities, especially in rural areas of South Africa.41 Underpinning the training was recognition of the value of a community-level cadre of workers deployed to focus Research has also been conducted into the efficacy of specifically on disability issues from the perspective of CBR, documenting the fact that MLCRWs have the potential development. Gamiet and Rowe found that rehabilitation to improve access to health and rehabilitation services care workers (MLCRWs) trained in the Western Cape have for persons with disabilities, thereby improving their strengthened PHC and CBR and contributed to promoting independence and quality of life.42 Binken and colleagues participation of persons with disabilities in inclusive found that MLCRWs were able to provide a range of services development.39 This differs from a community health worker for persons with disabilities at community level, including whose primary focus is on acute conditions and treatment referrals, screening and assessment, and provision of compliance. assistive devices.43 Their interventions contributed towards improved access to resources for persons with disabilities Training was accompanied by advocacy for provisioning of and increased interaction in communities. MLCRWs have posts. Indeed, some training programmes only accepted also served to promote social participation of persons candidates on condition that they were guaranteed a post with disabilities, and contributed towards improved health on completion of their qualification. and educational opportunities and the ability to access livelihoods. Further, MLCRWs have been documented as Recent literature indicates that MLCRWs require clinical, playing a leading role as catalysts for disability-inclusive social, management, communication and cultural youth development.44 competency skills across the spectrum of the CBR matrix, especially in empowering persons with disabilities and facilitating community development. There has also been recognition of the need for development of critical Recommendations reasoning, creativity and compassion.40 Exploration of the history of CBR and MLCRWs in South One of the greatest challenges with regard to the training Africa highlights the value of institutional memory and of MLCRWs, however, was professional registration for this identifies lessons to strengthen CBR in response to the cadre of worker, mainly because they did not align with WHO’s ‘Rehabilitation 2030: A call for action’. These a single rehabilitation discipline. Further, there was little recommendations recognise the need to address systemic representation of rural disability issues by professional and political dynamics as well as the complexities of board representatives, and lack of understanding of CBR implementing global guidelines and national policies. The as the ‘anchor’ of a decentralised service aimed at reaching recommendations require engagement, monitoring, and underserved areas. In 2006, the Health Professions Council reciprocal capacity development, which are essential to of South Africa (HPCSA) ruled that the training could not ensure equity and equal opportunities for and by persons continue. Instead, candidates were (re)directed to training with disabilities and to realise the vision of Rehab 2030. and careers as Occupational Therapy Assistants (OTAs) or Occupational Therapy Technicians (OTTs), under the Occupational Therapy professional board. This training Inclusion of CBR in a strategy for health care It is recommended that rehabilitation in general and CBR restricted their scope of community work as they were given in particular be foregrounded within PHC as a strategy hospital-based posts, with limited focus on community- to achieve the health rights of persons with disabilities. based activities and no resources to support persons with This requires consistency across policies, both within disabilities at home. the Department of Health (national and provincial) and in relation to other government departments. Implementation Despite the 2006 ruling by the HPCSA, training for a should be overseen by an intersectoral structure such as community-level cadre of rehabilitation workers has the Office of the Rights of Persons with Disabilities in the continued. However, this has occurred in areas where Presidency. The NDoH needs to allocate resources not only funding has been available and leaders have emerged for the development of rehabilitation services as part of its with a personal interest and commitment to furthering mandate under the SDGs, but also to invest in the training the agenda of CBR. Training is therefore fragmented and and deployment of MLCRWs within the workforce and only happening in pockets, and there is still no agreement referral chain of the health sector. regarding the umbrella under which MLCRWs are to be registered. Advocacy for CBR Research done on CBR Given the challenges encountered to date, there is an urgent need for advocacy regarding the nature of CBR and An important advocacy element for CBR has been research its value as a means of achieving improved health and rights into the situation of persons with disabilities (especially of persons with disabilities. Attention needs to be given to in rural and resource-poor environments). Over the past
Toward ‘Rehab 2030': building on the contribution of mid-level community-based rehabilitation workers in South Africa 159 extending the evidence base of CBR and opportunities for Multi-sectoral partnerships and collaboration disseminating information and experience. Participation By its nature, CBR is multi-sectoral and requires an of government, academic institutions and civil society approach that enables different sectors to collaborate to structures in shared platforms and (national and continental) realise the rights of persons with disabilities. In working CBR networks is important for the development of CBR towards resolving the critical lack of human resources within the country and the African context. for rehabilitation arising from the quadruple burden of disease in South Africa, it is recommended that networks of It is encouraging to see a growing focus on advocacy in stakeholders involved in CBR – including disabled persons’ training of occupational therapists45 and this should be organisations (DPOs), non-governmental organisations extended to other rehabilitation professionals, together with (NGOs), institutions of higher learning, and various practical opportunities for them to collaborate with persons government departments – be strengthened towards with disabilities, their families, and community structures. sharing of available resources, research and expertise.
Inclusion of persons with disabilities in CBR The restrictions imposed by the COVID-19 pandemic have Based on the maxim of the disability rights movement, led to a focus on social media and Facebook, spawning namely “Nothing about us without us”, it is critical innovative ways of networking, including the Disability and that persons with disabilities be involved in planning, Rehabilitation WhatsApp group. With over 80 members, the implementing, and evaluating CBR programmes. Structures group includes persons with disabilities, service providers, and mechanisms to ensure their participation need to be government officials, and academics. This has been an in place from national to local level. For example, disability extremely useful mechanism to exchange information and and rehabilitation forums at provincial level and disability channel resources (particularly in the vernacular and for those forums at municipal level can serve this purpose. This is an in rural areas), including assistive devices, social relief, and urgent issue and it is recommended that it be resolved in an psychosocial support. There is no hierarchy, no management intersectoral round table forum, with the NDoH taking the structures, no meeting venue, and no personnel other than lead in this process. the person (one of the authors) who set it up.
Re-activation of MLCRW training In conclusion, achievement of the Rehab 2030 vision is only It is recommended that training of MLCRWs be re-instituted possible if stakeholders in the rehabilitation sector unite, at national level, towards realising the vision of Rehab 2030 particularly in resolving the acute need for human resources. for the most vulnerable people in South Africa. The National Qualifications Framework (NQF) level and accreditation of “Inaction will perpetuate an untenable status quo: first an training should be determined nationally so that there is a increasing unmet need for rehabilitation … and second, a consistent approach across training institutions. The NDoH fragmented field that – despite its potential to address those needs to take the lead in resolving the issue of registration needs – stops short of fulfilling that potential”.3 and designation of appropriate and sufficient posts for MLCRWs and their supervisors, together with career pathing and provision of continuing professional development.
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162 South African Health Review 2020 REVIEW 17 Reimagining rehabilitation outcomes in South Africa
Planning, monitoring and evaluation of Authors Adèle Ebrahimi service delivery for persons with disabilities Michelle Bothai Dominique Brandi must be designed to focus on long- Karina Fischer Mogenseni term, holistic well-being and not merely ‘impairment management’.
Health and rehabilitation outcomes are not only affected by and concludes that planning, monitoring and evaluation health care or access to services but by a set of complex of service delivery for persons with disabilities must be and multifarious factors linked to the social determinants of designed to focus on long-term, holistic well-being and not health. These include a range of social, political, economic, merely ‘impairment management’. environmental, and cultural factors. Additionally, economic variability or instability impacts on the ability of persons Three recommendations are made for the reimagining of with disabilities to achieve better health and rehabilitative rehabilitation outcomes: recognising and including persons outcomes, which in turn impacts negatively on their ability to with disabilities as key stakeholders in the rehabilitation enter or re-enter education and, ultimately, to transition into process; critically evaluating the curriculum for the training livelihood development. of new rehabilitation workers; and contextualising the design and implementation of rehabilitation services by shifting from This chapter argues that the accountability frameworks a resource-centred to a person-centred approach. governing the provision of rehabilitation and development services designed to increase disability inclusion require While designing indicators that measure both tangible critical re-thinking in order to meet the complex needs of and intangible outcomes is certainly challenging, this is persons with disabilities. The chapter discusses the ways in essential if rehabilitation interventions are to facilitate which rehabilitation and development programmes shape the development of holistic well-being and greater socio- societal attitudes towards persons with disabilities and economic inclusion of persons with disabilities. entrench beliefs about their capabilities, value and status,
i Division of Disability Studies, University of Cape Town
Click to navigate Reducing psychosocial disability for persons with severe mental illness in toSouth Contents Africa 163 in which disability is socially positioned.7-9 Negative attitudes Introduction towards disability are “a product not only of individual beliefs but also of societal and organisational practices”.6 Article 26 of the United Nations Convention on the Rights of Persons with Disabilitiesa (UN CRPD) identifies the central This chapter considers the interplay between negative role of rehabilitation programmes and services in promoting attitudes towards persons with disabilities, the accountability and facilitating the inclusion of persons with disabilities frameworks that govern the provision of rehabilitation and in education, health and employment, as well as their disability inclusion, and the real-world circumstances of participation in all spheres of social life.1 The Convention persons with disabilities in South Africa. Discussion focuses defines rehabilitation in broad terms, recognising a complex on the ways in which rehabilitation and development network of multi-disciplinary interventions designed to programmes shape societal attitudes towards persons with support persons with disabilities to “attain and maintain disabilities and entrench beliefs about their capabilities, maximum independence, full physical, mental and vocational value, and status. It is suggested here that planning, ability, and full inclusion and participation in all aspects of monitoring and evaluation of service delivery for persons life”.1 Rehabilitation interventions should not merely focus on with disabilities must be designed to focus on long-term, the attainment of physical or mental health, but should also holistic well-being and not merely ‘impairment management’. be involved in strengthening independence and opportunities This chapter offers three suggestions for shifting for participation. The Convention supports the development perspectives in rehabilitation, namely including persons with of community-based rehabilitation, viewing this as key in disabilities as valued stakeholders; critically evaluating the ensuring access to appropriate services for persons with training curriculum for rehabilitation workers; and moving b disabilities living in rural and impoverished communities.2 from a ‘resource-centred’ approach to a ‘person-centred’ approachc in the design, implementation and evaluation of It is recognised that health and rehabilitation outcomes are rehabilitation and development services. not only affected by health care or access to services.3 These outcomes are affected by complex and multifarious factors The authors have a wealth of experience in the disability linked to the social determinants of health, which include sector ranging from direct involvement in the delivery of a range of social, political, economic, environmental, and rehabilitation services, programme design, monitoring and cultural factors. Economic variability or instability impacts on evaluation, and personal experience of accessing rehabilitation the ability of persons with disabilities to achieve better health and development services. This chapter suggests that a and rehabilitative outcomes. In turn, this impacts negatively medicalised and resource-centred approach in rehabilitation on their ability to enter or re-enter education and, ultimately, does a disservice to persons with disabilities in their pursuit d to transition into livelihood development.4 of well-being as such an approach does not promote the full socio-economic participation of persons with disabilities. Inter-sectoral action requiring the inclusion of sectors in addition to the health sector is required when designing and implementing public policies and programmes to improve quality of life and well-being.3 Insufficient inter-sectoral Health and socio-economic collaboration when designing rehabilitation programmes context for persons with and services in South Africa continues to disproportionately affect persons with disabilities. They continue to experience disabilities “high rates of poverty and poor health, low educational 5 achievement and few employment opportunities”. Societal Legislative framework attitudes, beliefs and misconceptions are some of the largest The South African government has developed legislation 6 challenges facing persons with disabilities; negative social and policies in the spheres of health, education, and attitudes tend to view persons with disabilities as lacking employment that emphasise consideration, participation and 7 8 agency and, consequently, as socially invalid. Several inclusion of persons with disabilities. Key pieces of disability- scholars recognise a correlation between the difficult related legislation and policy include the White Paper on circumstances faced by persons with disabilities and the ways the Rights of Persons with Disabilities,13 the Employment a Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and efficient participation in society on an equal basis with others.1 b ‘Resource-centred’ approach refers to planning based on available resources, rather than on research into the real needs of potential service users. c A person-centred approach takes the position that people’s desires, values, family situations, social circumstances and lifestyles need to be considered when planning interventions. Overall, persons or beneficiaries of services need to be consulted and included alongside professionals in the development of appropriate services and solutions. There is an emphasis not just on the activities but also the relationship between the professional and the beneficiary. Historically, beneficiaries were expected to be silent recipients who fitted in with the routines and practices that health and social services deemed most appropriate, but the person-centred approach advocates for flexibility to meet people’s needs in a manner that is best for them and that endeavours to seek holistic wellness.10,11 d Sen12 defines well-being as having the freedom to make choices from available resources, having actual opportunities, and acting effectively. The process of converting available resources into well-being is dependent on individual, social, and environmental features.
164 South African Health Review 2020 Equity Act,14 and the related Code of Good Practice for the of solutions.24 This suggests collective engagement Employment of Persons with Disabilities.15 These policies and networking to facilitate the re-imagination of labour and pieces of legislation identify the need for the fuller practices. For this to happen, the application of international integration of persons with disabilities, and acknowledge labour standards and other human rights instruments is their right to education, employment and health care.16 The essential, in particular application of the UN CRPD.24 definitions of disability found in these policies recognise the role of society in creating disabling environments. Despite this progressive legislative framework, the vast majority of South Africans with disabilities, and particularly those who Rehabilitation and approaches to are historically disadvantaged, face significant challenges in accessing employment or opportunities for livelihood disability development.4,17,18 Organisations providing rehabilitation and development Employment services play a key role in supporting persons with The 2016 Community Survey by Statistics South Africa disabilities as they navigate challenges related to socio- shows that 41% of persons with disabilities are illiterate economic participation and inclusion.25,26 Current practices compared to 18% among persons without disabilities.19 that support the drive towards socio-economic inclusion for This high level of functional illiteracy among persons with persons with disabilities in South Africa include increased disabilities is the consequence of a lack of educational training and skills development opportunities, regulatory opportunities for children with disabilities.19 Youth with and obligatory legislative and employment mandates, and disabilities who do achieve basic education often face monitoring and evaluating how persons with disabilities challenges in completing their high school education and in participate, particularly in the economy. However, these entering tertiary education.4,20 approaches tend not to be participative or empathetic to persons with disabilities, and they often do not consider the Unemployment rates for persons with disabilities in the complex intersection of employment, health and well-being.e formal sector are still considerably higher than rates for Persons with disabilities are often treated or targeted as non-disabled persons in South Africa.17,18 Currently, 1.1% of passive recipients of health and/or social services, which the employed workforce in South Africa are persons with negatively impacts the way in which persons with disabilities disabilities, despite the 2% target set by the government.21 are viewed in society, their access to equal opportunities, as Factors influencing the employment or underemployment of well as their sense of self and social belonging.f persons with disabilities in South Africa start with and include the education they have received, the age of onset of their In South Africa, rehabilitation programmes and services, in disability, severity of impairment, negative attitudes towards particular those focused on vocational training, soft skills, disability, and the complex intertwining of race, gender, and social work support, are largely offered by non-profit geographical location, poverty and disability, which impact organisations reliant on public and private funding streams on factors such as access to assistive devices and tertiary in order to provide these interventions at no cost. Many of education.22 In addition, recruitment processes are often these organisations have existed for decades and have their difficult for persons with disabilities to navigate, reasonable origins in traditional welfare approaches to service delivery, accommodation is lacking, and programmes focused on a colonial legacy that in many ways continues to influence integrating people with disabilities into the workplace and their operations.4 A connection between rehabilitation retaining employees with disabilities are inadequate.18 services and welfare persists in South Africa. Many rehabilitation organisations include a mixture of paradoxical COVID-19 and inequality elements as the residue of traditional welfare mingles with a Evaluating South Africa’s burden of disease is important growing recognition of disability as a human rights issue. when considering the effect of disparate access to health care23 on the acquisition of employment or economic This situation is not unique to the South African context, empowerment. Presently, the global COVID-19 pandemic has and its impact on how persons with disabilities are viewed added to and exacerbated South Africa’s quadruple burden in society has been widely critiqued by scholars.27-29 These of disease and is exposing and deepening inequality. scholars assert that the links binding disability, rehabilitation, and welfare are maintained by understanding disability At the core of the disability rights and labour rights as a problem of the individual body and as a ‘personal movements is social dialogue and participation.24 During tragedy’.26-29 In a strong critique of the role of traditional a crisis such as the COVID-19 pandemic, a range of views charitable organisations, Drake27 asserts that where these from governments, worker and employer organisations, and organisations refer to ‘empowerment’, they are usually organisations of persons with disabilities, bring a multiplicity referring to the overcoming of an individual deficit and e Ebrahim A. Traversing disability: Considering social capital in disability inclusive practices. Unpublished thesis, University of Cape Town, 2020. f Botha M. Blindness, rehabilitation and identity: A critical investigation of discourses of rehabilitation in South African non-profit organisations for visually impaired persons. Unpublished thesis, University of Cape Town, 2020.
Reimagining rehabilitation outcomes in South Africa 165 not to a process whereby persons with disabilities enter those who turn to these services for support tend to be roles of power in society. Scholars suggest that ‘need’ is positioned. It is important to consider how the positioning often narrowly defined within rehabilitation, framed by an of persons with disabilities as ‘receivers of welfare’ rather understanding of impairment as individual bodily deficits than valued stakeholders may influence whether they are that must be managed, with little consideration for either viewed as capable of exercising agency and being active socially engendered discrimination or the psycho-emotional in the economy, as well as whether the development of impact of encountering such discrimination.27,28 In addition, self-determination is viewed as an important outcome in several scholars have argued that a connection between rehabilitation. These are important aspects for strengthening rehabilitation services and charity influences the public persons with disabilities in being able to exercise self- perception of persons with disabilities, presenting an advocacy as they navigate a largely inaccessible world and image of persons with disabilities as passive recipients of negative social attitudes that may impede their access to professional and public goodwill.8,28 Charitable appeals for equal opportunities.e,f donations tend to position persons with disabilities as lacking capability. This positioning has serious consequences for In a recent study, which included in-depth interviews with whether persons with disabilities are recognised as able to visually impaired service users, Bothaf found that while be active agents in their own lives, and may also impact their rehabilitation interventions provide invaluable techniques personal sense of self, value and capability.e,8 for adjustment to sight loss, individuals feel that they are not recognised as stakeholders in their own processes of The acquisition of various skills and techniques, and access development. This impacts on the kinds of services and to assistive devices and other support, are essential for support that individuals receive. In a study involving persons strengthening the capability of persons with disabilities. with physical impairments, Ebrahim found that reduced However, critics suggest that these services and the autonomy and agency are prevalent in those seeking rehabilitation professionals who provide them are largely employment or economic inclusion. We must consider divorced from disability politics, including discussions how an overwhelming focus on managing impairment in concerning identity, inequality and self-representation, rehabilitation might overlook the development of other and as such may unintentionally strengthen narrow social key, albeit less easily measured, attributes such as self- attitudes towards persons with disabilities and hinder their determination, resilience and personal networks. recognition as full and equal citizens.27,29 Recognising and including persons with disabilities as stakeholders in rehabilitation services must involve openness on the part of rehabilitation organisations and Re-imagining rehabilitation professionals to critically interrogate and disrupt present power dynamics in rehabilitation. In practical terms, this outcomes should involve: creating spaces where the voices of those undergoing rehabilitation interventions can be heard; In order to promote greater disability inclusion, it is including persons with disabilities on management boards suggested that three focus areas be used to shift from a and in organisational strategic planning; and having medical, health and welfare perspective in rehabilitation, collaborative discussions about individual intervention to a holistic approach that considers the complexity and plans that include beneficiaries (and their families) and that intersection of economic empowerment, health and acknowledge them as experts in their own lives. Given overall well-being of persons with disabilities. These focus that experiences of rehabilitation have been found to be areas include recognising and including persons with significant in shaping the self-perception of persons with disabilities as key stakeholders in the rehabilitation process; disabilities,e,8,31,32 the implications of being viewed and critically evaluating the curriculum for the training of new treated as either a welfare recipient or an active participant rehabilitation workers; and contextualising the design and are potentially far-reaching. implementation of rehabilitation services by shifting from a resource-centred approached to a person-centred approach Curriculum and training of new rehabilitation and thereby redefining the outcomes of rehabilitation workers services to include qualitative indicators.g,h,30 The Framework and Strategy for Disability and Rehabilitation Services in South Africa 2015-202033 clearly acknowledges Including persons with disabilities as key that health and rehabilitation providers lack awareness, stakeholders in the rehabilitation process knowledge and training with respect to the challenges, There is a disjuncture between the stated purpose of needs and rights of persons with disabilities. The Framework rehabilitation services (to empower persons with disabilities highlights that negative attitudes towards persons with for economic and social inclusion) and the ways in which disabilities obstruct their participation in health and g Brand D. Inconvenient participation: Persons with disabilities explain the psycho-emotional impact of sport participation in the Western Cape, South Africa. Unpublished thesis, University of Cape Town, 2020. h Fischer Mogensen K. Employment support services: Facilitating formal employment of persons with disabilities in South Africa. Unpublished thesis, University of Cape Town, 2020.
166 South African Health Review 2020 rehabilitation services. This clear critique of rehabilitation contrast, aspects such as the development of social capital, professionals is followed by a recommendation that self-determination and personal fulfilment are qualitative healthcare providers be trained. Chapter 4 of the World indicators of change over time, but often these do not Health Organization Report on Disabilities34 suggests that receive attention when interventions are measured or training of rehabilitation providers (such as occupational evaluated.e To reach a state of complete physical, mental therapists, physiotherapists, speech and language therapists and social well-being, an individual or group must be and community rehabilitation workers) should include an able to identify and realise aspirations, satisfy needs, and overview of relevant national and international legislation, change or cope with their environment. These qualitative including the UN CRPD, which promotes client-centred indicators are, therefore, crucial for understanding what approaches and shared decision-making between persons rehabilitation services do (and perhaps neglect to do) in the with disabilities and professionals. It is suggested that lives of persons with disabilities in terms of whether they curricula be made more relevant to the needs of persons strengthen individuals to access economic empowerment, with disabilities by including content on community needs, social inclusion, and equal access to health care and other using appropriate technologies, and using progressive services. Monitoring rehabilitation services should be education methods, including content on the social, understood not only as a means to ensure accountability for political, cultural, and economic factors affecting the health resources, but as essential for ensuring that programmes and quality of life of persons with disabilities. In South are accountable for actual positive changes in the well- Africa, authors such as Amosun et al.35 and De Jongh36 being of persons with disabilities and their ability to advocate for curriculum review and change that considers participate in all spheres of life.g,h,30 political engagement and issues such as marginalisation, exploitation and powerlessness that limit equitable access When designing rehabilitation programmes we must of persons with disabilities to opportunities and resources. consider how disability is being viewed. This also becomes Recent demands for the decolonisation of health and pivotal in terms of how programme impact will be evaluated. rehabilitation curricula in South Africa present challenges to One important critique made of the monitoring process in students, academics and professionals. The call for curricula the UN CRPD is: "who gets to define the factors or statistical change, however, also offers an opportunity to deepen indicators for collecting data" and who decides on how shared understandings and development of knowledge disability is defined?37 Accuracy of monitoring outcomes and practices that are participative and inclusive. Amosun for persons with disabilities is sensitive to how disability is et al.35 suggest that using this opportunity for change and positioned within any rehabilitation intervention. Regular transformation will strengthen the South African healthcare evaluations of interventions aimed at reintegrating persons system by ensuring that rehabilitation professionals with disabilities into active citizenship should share a core are prepared to provide services that acknowledge the goal, namely of working towards persons with disabilities uniqueness of South African persons with disabilities, and by enjoying equal access to all aspects deemed essential to a creating programmes that are transformative. state of well-being. As such, well-being should be defined by persons with disabilities themselves and what it means to Shifting from resource-centred to person- the individual in his or her context.12 centred approaches A central challenge in terms of the impact that disability- related programmes and services have in South Africa is that planning, monitoring and evaluation are pivoted The need for qualitative and towards tracking indicators related to the expenditure of holistic evaluation resources rather than to whether services are achieving any long-term change in people’s lives. Rehabilitation and vocational programmes are key in terms of how persons The critique around current rehabilitation services has with disabilities move forward in the pursuit of economic identified that the approach and planning of programmes stability. However, the current revolving door, which sees and interventions tends to stem from a medicalised persons with disabilities remain in a cycle of training perspective, which views disability as a problem of the and short-term employment, stifle the goal of achieving individual impaired body.29 The suggestion made in this gainful and long-term employment. The revolving door chapter is that while ‘impairment management’ remains a perpetuates the idea of reliance on these programmes, core function of rehabilitation,7,32 the medicalised focus of while not encouraging persons with disabilities to make self- these rehabilitation services must be disrupted. A person- determined choices in terms of their economic inclusion. centred approach that draws on the lived experience of persons with disabilities will provide a more nuanced While measuring resource-related indicators is important, a perspective in order to ensure that the complexity of the ‘resource-centred’ approach to planning, implementation, lived experience of persons with disabilities (including monitoring and evaluation of rehabilitation services does impairment-related difficulties and socially engendered not consider or provide information on the well-being of discrimination) are understood.7,37 the beneficiaries. Instead, it focuses on quantitative output and short-term outcomes of impairment management. In
Reimagining rehabilitation outcomes in South Africa 167 This holistic approach needs to consider the basic needs and impairment management of persons with disabilities, References but it must also set the tone for social and economic inclusion into the community. The idea of disrupting the status quo of rehabilitation services also involves the 1. United Nations. Convention on the Rights of Persons discussion of stakeholder roles. It is necessary to talk about with Disabilities, A/RES/61/106; 13 December 2006. issues of power and privilege within these organisations. URL: https://www.un.org/development/desa/disabilities/ Currently a power imbalance still exists between non- convention-on-the-rights-of-persons-with-disabilities.html. impaired persons and persons with impairments. This calls 2. World Health Organization. World Health Report for a participatory approach to this suggested disruption 2010. Geneva: WHO; 2010. URL: https://www.who. in the design of rehabilitation services. Within these int/healthsystems/topics/financing/healthreport/whr_ service organisations, issues of systemic oppression have background/en. played an immense role in the experience of persons with disabilities and their belief in their own value and sense of 3. Ataguba J, Day C, McIntyre D. Explaining the role of the belonging. Understanding how persons with disabilities social determinants of health on health inequality in South experience the rehabilitative process should be a core part Africa. Glob Health Act. 2015;8:28865. of how we monitor, measure and value public sponsored 4. Lorenzo T, Motau J, van der Merwe T, Janse van interventions for economic and social inclusion of persons Rensberg E, Murray Cram J. Community based rehabilitation with disabilities. workers as catalysts for disability inclusive development through service learning. Dev Pract. 2015;25(1):19-28. 5. Meekosha M, Soldatic K. Human rights and the Global Conclusion South: the case of disability. Third World Q. 2011;32(8):1383-98. 6. Amosun SL, Volmink L, Rosin R. Perceived images Taking a position on a more expanded view of disability of disability: the reflections of two undergraduate and its core aspects is important as we advocate for medical students in a university in South Africa on life in a the expansion of accountability frameworks governing wheelchair. Disabil Rehabil. 2005;27(16):961-6. rehabilitation and development interventions and the impact 7. Shakespeare T. Disability rights and wrongs revisited. focus of such interventions. While designing indicators that London: Routledge; 2014. measure both tangible and intangible outcomes is certainly 8. Hughes B. A historical sociology of disability: Human challenging, this is essential if rehabilitation interventions validity and invalidity from antiquity to early modernity. are to take responsibility for facilitating the development London: Routledge; 2019. of holistic well-being and greater socio-economic inclusion for persons with disabilities, rather than merely presenting 9. Garland-Thomson R. Misfits: a feminist materialist short-term indicators related to the management of disability concept. Hypatia. 2011;26(3):591-609. impairments alone. 10. Sepucha K, Uzogarra B, O'Connor M. Developing instruments to measure the quality of decisions: early results for a set of symptom-driven decisions. Patient Educ Counsel. 2008;73(3):504-10. 11. Gill PS. Patient engagement: An investigation at a primary care clinic. Int J Gen Med. 2013;6:85-98. 12. Sen AK. Development as freedom. New York: Alfred A Knopf; 1999. 13. South African Department of Social Development. White Paper on the Rights of Persons with Disabilities; 2016. URL: https://www.gov.za/sites/default/files/gcis_ document/201603/39792gon230.pdf. 14. Republic of South Africa. Employment Equity Act (No. 55 of 1998). URL: https://www.gov.za/sites/default/files/ gcis_document/201409/a55-980.pdf. 15. Republic of South Africa. Code of Good Practice on Employment of People with Disabilities; 2002. URL: https://www.gov.za/sites/default/files/gcis_ document/201511/39383gon1085.pdf.
168 South African Health Review 2020 16. Howell C, Chalklen S, Alberts T. A history of the 27. Drake R. A critique of the role of the traditional disability rights movement in South Africa. In: Watermeyer charities. In: Barton L, editor. Disability and society: emerging B, Swartz L, Lorenzo T, Schneider M, Priestley M, editors. issues and insights. London: Longman; 1996. p. 148-63. Disability and social change: A South African agenda. Cape 28. Longmore PK. Conspicuous contribution and American Town: HSRC Press; 2006. p. 46-84. cultural dilemmas: telethon rituals of cleansing and renewal. 17. Bam A, Ronnie L. Inclusion at the workplace: An In: Mitchell DT, Snyder SL, editors. The body and physical exploratory study of people with disabilities in South Africa. difference: discourses of disability. Ann Arbor: University of International Journal of Disability Management. 2020;15. Michigan Press; 1997. p. 134-58. 18. McKinney EL, Swartz L. Employment integration 29. Oliver M. The social model in action: if I had a hammer. barriers: experiences of people with disabilities. International In: Barnes C, Mercer G, editors. Implementing the social Journal of Human Resource Management. 2019;1(23). model: theory and research. University of Leeds: The Disability Press; 2004. p. 18-31. 19. Statistics South Africa. Education series volume III: Educational enrolment and achievement; 2016. URL: http:// 30. Brand D, Mogensen Fischer K. Capacity building www.statssa.gov.za/publications/Report%2092-01-03/ towards participation in continuous and regular civil society Education_Series_iii.pdf. monitoring of disability inclusion. In: Lorenzo T, editor. Monitoring disability inclusion and social change. Disability 20. Lourens H, Swartz L. “Every now and then you slip Catalyst Africa Series 5. Cape Town: Disability Innovations up and then you are in trouble”: the responsibility on Africa; 2016. p. 92-104. students with visual impairments to access reasonable accommodations in South Africa. International Journal of 31. Michalko R. The mystery of the eye and the shadow of Disability Development and Education. 2019;67(3):320-35. blindness. Toronto: University of Toronto Press; 1998. 21. Commission for Employment Equity. 20th Commission 32. Sullivan M. Subjected bodies: paraplegia, rehabilitation, for Employment Equity Annual Report 2019-2020. URL: and the politics of movement. In: Tremain SL, editor. Foucault http://www.labour.gov.za/DocumentCenter/Reports/ and the government of disability. Ann Arbor: University of Annual%20Reports/Employment%20Equity/2019%20 Michigan Press; 2005. p. 27-44. -2020/20thCEE_Report_.pdf. 33. South African National Department of Health. 22. Emmett T. Disability, poverty, gender and race. In: Framework and Strategy for Disability and Rehabilitation Watermeyer B, Swartz L, Lorenzo T, Schneider M, Priestley Services in South Africa, 2015-2020. URL: https://www.gov. M, editors. Disability and social change: A South African za/sites/default/files/gcis_document/201409/dsd-strategic- agenda. Cape Town: HSRC Press; 2006. p. 207-33. plan-2010-20150.pdf. 23. Econex. NHI Note 2, South Africa’s burden of disease; 34. World Health Organization. World Report on Disability October 2009. URL: https://www.hasa.co.za/wp-content/ 2011. Geneva: WHO; 2011. URL: https://www.who.int/ uploads/2017/05/ECONEX_NHInote_2.pdf. disabilities/world_report/2011/report.pdf. 24. International Labour Organization. COVID-19 and the 35. Amosun D, Maart S, Naidoo N. Addressing change in world of work. Sixth edition; 2020. URL: https://www.ilo.org/ physiotherapy education in South Africa. S Afr J Physiother. wcmsp5/groups/public/---dgreports/---dcomm/documents/ 2018;74. briefingnote/wcms_755910.pdf. 36. De Jongh J. An innovative curriculum change to 25. Ned L, Lorenzo T. Enhancing the public sectors’ enhance occupational therapy student practice. South capacity for inclusive economic participation of disabled African Journal of Occupational Therapy. 2009;39:31-8. youth in rural communities. Afr J Disabil. 2016;5(1). 37. Philpott S. Too little, too late? The CRPD as a standard 26. Rule S, Roberts A, McLaren P, Philpott S. South African to evaluate South African legislation and policies for early stakeholders’ knowledge of community based rehabilitation. childhood development. African Disability Rights Yearbook; Afr J Disabil. 2019;8(1). 2014. URL: http://www.saflii.org/za/journals/ADRY/2014/3.pdf.
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Reimagining rehabilitation outcomes in South Africa 169 REVIEW 18 The intersection between Health and Education: meeting the intervention needs of children and youth with disabilities
Intersectoral collaboration between Authors Alecia Samuelsi the health and education sectors can Unati Stemelaii Mpilo Booiiii strengthen intervention services for CYWD and facilitate improvement of their health and developmental outcomes.
Improving developmental outcomes for children and is a disjuncture in how these policies are implemented at youth with disabilities (CYWD) in low- and middle- provincial, district, hospital, and school level when children income countries requires the removal of access barriers transition between these sectors. perpetuating the patterns of exclusion of persons with disabilities in general. In South Africa, an upper middle- Drawing on bioecological systems theory, the chapter income country with stark characteristics of inequality, explores how intersectoral collaboration in the health intervention and support are hampered by inadequate and education sectors is affected by poor coordination coordination, and confusion regarding roles and and integration at various levels of the system for responsibilities between key stakeholders in the health and CYWD. The chapter further proposes how rehabilitation education sectors. The World Disability Report highlights professionals working in these two sectors and delivering poor coordination of services, inadequate staffing, and intervention services at grassroots level, can start to use poor staff competencies as critical in determining the a biopsychosocial approach, such as the International quality, accessibility, and adequacy of services for persons Classification for Functioning, Disability and Health, to with disabilities. The South African National Departments transform their practices and improve coordination of roles of Health and Basic Education both have individual as and responsibilities. This would allow CYWD to transition well as coordinated policies that should facilitate the more seamlessly between these sectors, mitigating participation of CYWD in environments important to their the systemic barriers that lead to inadequate health, health, development and academic abilities. However, there development and academic outcomes for disabled children.
i Centre for Augmentative and Alternative Communication, University of Pretoria ii Department of Rehabilitative Sciences, Fort Hare University iii Department of Speech Language Pathology and Audiology, University of Pretoria
Click to navigate The intersection between Health and Education: meeting the intervention needs of children and youth withto disabilities Contents 171 should be those we hold for all children, namely that they Introduction have the functional capabilities to participate meaningfully in all aspects of their lives and in all aspects of society.12 The The Alma-Ata declaration1 defines health as a “state of goal of meaningful participation for CYWD is encapsulated complete physical, social and mental wellbeing and not only in the World Health Organisation’s (WHO) International 13 the absence of disease or infirmity”. This definition supports Classification of Functioning, Disability and Health (ICF). a shift from a curative to a comprehensive model, inclusive of The literature to date is consistent in showing that CYWD the psychosocial aspects of care within a primary health care participate less frequently in home, social, and educational 14 (PHC) approach. More recently, the Global Conference on activities than their peers without disabilities. Primary Health Care in Astana,2 developed a new declaration that refocuses the Alma-Ata commitment to PHC, with The ICF defines health not as an absence of disease, but as additional emphasis on Universal Health Coverage (UHC) and "the complete physical, mental, and social functioning of a 13 the health-related Sustainable Development Goals (SDGs). person”. Within this biopsychosocial framework, disability is For South Africa, this renewed commitment has particular seen as a function of the interaction between a person’s health relevance for children and youth with disability (CYWD) since condition (i.e. biomedical condition or impairment) in terms international3 as well as local reports4,5 have indicated that of body functions and structures, together with contextual they still have many unmet health and rehabilitation needs factors in the environment and in the person, all of which can 15 and consequently poor health and development outcomes. either hinder or facilitate development. By taking into account contextual factors that can affect health, the ICF acknowledges 16 The health and development of CYWD cannot be achieved the social determinants of health. This is particularly relevant in isolation. This links and depends on core principles in a country like South Africa, an upper middle-income country outlined in the United Nations Convention of the Rights with stark characteristics of inequality (Gini coefficient 0.67), 16 of People with Disabilities (UN CRPD), such as non- which contribute to the country’s high burden of disease. discrimination, autonomy, participation and social inclusion, Participation for CYWD can be limited, especially in resource- respect for difference, accessibility, equality of opportunity, constrained environments and where impairment limitations and respect for the evolving capacities of children.6 are exacerbated rather than ameliorated by environments that are unsupportive and inaccessible.13
Participation challenges for CYWD Childhood disability in South While ratifying many of the social-model approaches, such as the UN CRPD, South Africa still largely follows an impairment Africa or medical model in many of its planning and intervention services for CYWD.17,18 There is often overt reliance on Disabled persons, including children and youth, make up a a diagnosis, resulting in restrictive eligibility criteria for significant section of society. Although there are no recent accessing services and support, which is not always or reliable disability statistics available for CYWD in South consistent with the ethos of policies based on a social model. 19 Africa, some reports suggest the prevalence rate to be in South Africa’s White Paper 6, an education policy that the region of 11%.7 The poor availability of data may be due promotes an inclusive approach for children with disabilities, to discrepancies in results obtained from different questions is one such example that has not resulted in significant gains 20 and methods used in various population-based surveys.8 for CYWD participation in an inclusive education system. Many CYWD are still not attending an educational facility, and Children in South Africa are affected by a triple burden of when they are, the education system reflects a segregated, disease that includes maternal and neonatal healthcare parallel approach where CYWD are placed mainly in special 20 challenges, high prevalence of HIV and TB, and high schools for specific types of disabilities. This is a major levels of community violence and trauma.9 In addition, the obstacle to their inclusion in mainstream education. There majority of children in South Africa (63%) grow up in poor is also a growing concern about the increasing calls to and 21 households.10 Together, these factors increase their risk of plans from Government to expand such schools, despite acquiring a disability.11 this being against stated policy.
Meaningful participation: the Intersections between Health long-term goal for CYWD and Education
An important component in the right to health is access Intersectoral collaboration between the health and to interventions that are promotive, preventive, and education sectors can strengthen intervention services rehabilitative. The goals of these interventions for CYWD for CYWD and facilitate improvement of their health and developmental outcomes. Intersectoral collaboration
172 South African Health Review 2020 refers to the promotion and coordination of the activities of different sectors.22 Health planners have often identified Children with disability: education, agriculture, water and sanitation as sectors that traversing multiple systems can, and should, collaborate in helping to reduce inequities in health.22 Since the major determinants of health (i.e. the socioeconomic environment, the physical environment, Over the course of the first two decades of their lives, and individual characteristics and behaviours) lie outside CYWD are required to access interventions to accomplish the healthcare system,16 it stands to reason that efforts to promotive, preventive and rehabilitative goals. This requires address inequities in health must incorporate sectors whose traversing the healthcare and education sectors. Specifically, activities have a bearing (both directly or indirectly) on the it requires CYWD to access services from a range of health and well-being of CYWD. One of the most important rehabilitation professionals (e.g. occupational therapists, sectors is education. The reported fragmentation and lack of speech therapists, physiotherapists) within the same sector collaboration between health and education can represent and across sectors, including support such as assistive a failure to recognise the intersection of probably the two technology. Traditionally, intervention services for CYWD most important sustainable development goals (SDGs) for who move between the health and education sectors have 18 children and youth, namely SDG 3 (Good Health and Well been planned in isolation. This typically reflects a siloed Being) and SDG 4 (Quality Education).23 approach, starting from the higher levels of isolated policy development for each of these sectors, down to sector- There is a well-established body of evidence to show specific isolated interventions for children, with few links or 18 that educational attainment is one of the most important collaborative practices between the two systems. social determinants of health, with access to high-quality educational programmes having a significant influence Bioecological systems theory: understanding on health and developmental outcomes for vulnerable intersectoral linkages children,24 especially those with disabilities in low- and Bioecological systems theory28 (Figure 1) is used to explore middle-income countries.25 The research is clear that the linkages between the education and health sectors education outcomes achieved from early childhood at various levels of the system surrounding CYWD, and to education, through to primary school, high school and understand the systemic challenges between the health and higher education are essential to good health outcomes. education sectors. For the purposes of this chapter, the focus is on CYWD of school-going age (between 6 and 18 years old) This relationship between health and education has been as they are more likely to come in contact with these sectors. further explained by Hahn and Truman.24 Firstly, health is seen as a prerequisite for education. Children who do Systems theory seeks to explain the behaviour of complex, not have adequate nutrition, for example, face significant organised and interconnected systems and is a relevant obstacles to their learning. In South Africa, malnutrition is method to understand the intersectoral operations of the one of the leading health issues facing children and youth.26 health and education sectors.28 In terms of the bioecological For this reason, South Africa’s National School Nutrition framework (Figure 1), policies that deal with CYWD fall at Programme (NSNP) provides one daily meal to over nine the macro level of the system. Macro policy inconsistencies million learners.26 When children are not able to access may result in a lack of clarity in the exosystem, i.e. in terms school it has a significant and debilitating impact on their of provincial departments that are required to effect these health status. CYWD in LMICs are particularly vulnerable policies in guidelines and implementation strategies. This to food insecurity as they tend to come from some of the confusion is often reported anecdotally, as highlighted by poorest households27 and often have difficulty feeding an example reported in the less-resourced Eastern Cape themselves due to an impairment. A second principle province (Box 1). An example such as this is not new or connecting health and education is that education on health unique to the Eastern Cape but is common in almost all and the provision of health services in schools is seen as an provinces in South Africa.29 important public health intervention.24
The intersection between Health and Education: meeting the intervention needs of children and youth with disabilities 173 Figure 1: Bioecological systems theory applied to intersectoral collaboration between the health and education sectors
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Box 1: Example of poor intersectoral collaboration In many schools in the Eastern Cape, School-based health institution. In this back-and-forth referral, with no Support Teams refer learners to the Department of services being provided to CYWD, their health conditions Health (DoH) for intervention services and assistive are further compromised and they end up suffering, with devices. The Department of Basic Education (DBE) their rights being violated by these systems. There is sees its role as supporting the educational needs of thus poor intersectoral collaboration between the two disabled learners by identifying them, placing them micro-systems, with no strategic guidelines defining in suitable educational settings, and supporting their the roles of rehabilitation professionals in each of these learning. When the learner reaches the DoH facility, he departments. Each institution makes its own decisions or she is often sent back to the DBE facility, as the DoH on how to handle the CYWD referred to them, with believes that the DBE has the available rehabilitation ‘gentlemen's agreements’ and no written roles for professionals to manage the intervention needs of who does what or who procures or is responsible for children with disabilities rather than sending them to the maintenance of assistive device equipment.
174 South African Health Review 2020 Recently, Van Niekerk and colleagues29 undertook focus a public health intervention.32 For example, a lack of proper groups with rehabilitation professionals involved in assistive roads, transport, and staffing, means that healthcare teams technology (AT) implementation for children with disabilities. would find it difficult to visit schools, especially in rural Lack of prescriptive guidelines from the National and areas.33 Pertinent to CYWD, identification and support of Provincial Departments of Health (DoH) and the Department children with chronic health conditions is a required part of of Basic Education (DBE), as well as fragmentation in AT services in the IHSP.32 Of concern is that there are already procurement, were mentioned by professionals as being a indications that implementation of this policy is failing, challenge when children transition between hospital and due largely to poor communication, lack of collaboration, school-based intervention services. Moreover, professionals absence of consultation and involvement, inadequate reported that it was standard practice for children resources, unrealistic workloads, and lack of training and with disabilities to be discharged from hospital-based development.34 Lack of collaboration and coordination intervention services after they turned six years of age, on at an exosystem level between provincial Departments the assumption that services and AT supports would be of Education and Health, infiltrate to levels lower down provided by the DBE. between school-based intervention and hospital-based intervention teams providing services and supports to The study by Van Niekerk and colleagues highlights how CYWD.35 the connections between the two important intervention microsystems within health and education for CYWD The DBE’s SIAS, governing the support to CYWD of in South Africa, i.e. the mesosystem, can be weakened compulsory school-going age, is more detailed in terms of by policy and legislation barriers at higher levels of the its links with the health sector. For example, it specifies how system. A mesosystem is a functional component involving rehabilitation professionals working in health can facilitate a connections between two or more microsystems of a child seamless transition for children with disabilities entering the (Figure 1).28 education system by formally documenting assessment and support information. It is also much more aware of its links to Mesosystems that are weak or that have limited connections the ISHP in terms of promotion of health and development often result from a lack of coordination and collaboration of CYWD. at higher levels of the system, usually from isolated policy planning and development, or because the people who are It is clear that promotive laws and policies notwithstanding, tasked with effecting policy at lower levels do not have the ground-level implementation of macro policies at an capabilities to implement it.30 exosystem level (i.e. provincial Department guidelines and strategies) and microsystem level (hospital and school intervention teams) continues to plague services and support for children with disabilities (Box 1). One way to Policies relevant to CYWD address this would be to strengthen the links between the microsystems, i.e. the mesosystem (Figure 2) in terms transitioning between Health and of a bottom-up approach. One of the important drivers in Education Departments strengthening mesosystems would be to support the people in these systems, specifically the rehabilitation professionals tasked with providing support and intervention to CYWD. The vision of the DoH Framework for Disability and Rehabilitative Services 2015-2020,22 is to provide quality disability services across the life course. In its mission statement, the Framework acknowledges the importance of intersectoral collaboration with other government sectors, Training of rehabilitation including education. However, it is largely silent on how this professionals should take place in practice, and it hardly discusses the importance of children with disabilities moving between Rehabilitation professionals in South Africa (speech two sectors over the life course. It also does not specify therapists/audiologists, occupational therapists and how this policy framework links to relevant policies in physiotherapists) who are primarily tasked with providing the DBE, such as the policy on Screening Identification, intervention services to children with disabilities within the Assessment and Support (SIAS).31 Nor does it discuss health and education sectors, still largely offer their services an important intersectoral policy between health and within a medical model with a focus on ‘fixing’ impairments.18 education, such as the Integrated School Health Policy This occurs despite wide recognition that a biopsychosocial (ISHP).32 The ISHP is one of the few coordinated policies model is a more effective approach as it acknowledges that developed between the DoH and DBE that recognises disability is largely an interaction between an impairment, the intersectoral nature of health.32 It seeks to address the and contextual and personal factors.13 Within the professions multiple health needs over the 12-year educational span for of speech therapy and audiology in South Africa,35 as well school-aged children and youth, and requires integrated as in occupational therapy,36 there have been increasing collaboration across multiple sectors for it to be effective as calls for the rehabilitation professions to transform from
The intersection between Health and Education: meeting the intervention needs of children and youth with disabilities 175 their colonial roots in which the medical model has been that works from the basis of common or shared goals and grounded. The medical model conflicts with the multi- that acknowledges the role that the environment plays in sectoral and cross-disciplinary collaborative approach facilitating or hindering development. required when working with disabled populations.37 Furthermore, the medical model perpetuates inequalities within service delivery in South Africa,38 with the population most in need of services, namely poor, black, African- The ICF as a framework to assist language speakers, unable to access or afford these services.35 collaboration within and across sectors Professionals trained in the medical model often struggle to be responsive to the demands placed by the environment,36 SDGs 3 and 4 mandate governments to promote the demands that either facilitate or hinder the ability of CYWD development of school-aged children and youth as to participate meaningfully in important developing and healthy and educated citizens. While governments often enhancing contexts in the home, school and community. develop separate departments to manage these services, Medical-model training has thus resulted in rehabilitation CYWD frequently receive overlapping support from these professionals trained to fix developmental impairments, but sectors, making the separation of health and education a not having sufficient knowledge and skills to support the false dichotomy.40 Publication of the WHO’s ICF in 2001, inclusion and participation of CYWD in the South African reflected a paradigm shift from the medical model to a education curriculum.38 Currently, most public-service biopsychosocial model in terms of how disability is viewed. rehabilitation professionals in South Africa are employed at The ICF offers a common language for rehabilitation a tertiary level in the provincial DoH, while those in the DBE professionals in health and education to describe the are based mainly at district level where they are required to functioning of CYWD across sectors, settings and individual support school clusters or certain special schools.39 disciplines.15 The ICF has traditionally been viewed in the context of the healthcare system. However, as a framework Training of rehabilitation professionals at pre-service and a taxonomy it has the capacity to comprehensively level and within continuing education needs to transform document and describe the learning and performance radically if children with disabilities are to be supported needs of CYWD and to establish whether the school seamlessly between their rehabilitative microsystems in environment is able to meet those needs.41 health and education. A collaborative approach is needed
Figure 2: WHO International Classification of Functioning, Disability and Health (ICF)13
Health condition (disorder or disease)
Body functions Activities Participation and structures
Environmental Personal factors factors
Source: World Health Organization.13
176 South African Health Review 2020 Within the framework of the ICF (Figure 2), disability is participation in life situations. When children and youth the extent to which impairments in body structures and receive their main form of intervention in the healthcare functions arising from a health condition create challenges setting, rehabilitation professionals from various disciplines for an individual’s participation or involvement in important need to come together and develop shared or common life situations such as the home, school or community.13 goals for current as well as future interventions. These Participation can be influenced by factors such as child goals should aim to facilitate children’s participation in life characteristics (health conditions, body functions, and situations that the family/child/youth deem important for structures) and context (facilitators or barriers) of the development. physical or social environment. The following approach is recommended for rehabilitation Participation in everyday activities is therefore seen as professionals to develop and monitor long-term and short- the main driver of development that is vital to health and term participation-related goals.43,44 well-being and also the ultimate goal of intervention, i.e. a means and an end.42 The traditional medical model, where • Use data from discipline-specific assessments and map intervention focuses on remediating discrete discipline- the results onto the components of the ICF (Table 1). specific physiological or psychological skills at the level However, many traditional assessments are still quite of body functions and structures, has shown very little impairment focused and tend to map mainly onto the empirical evidence of improved functioning in everyday body structure and function components of the ICF. For activities and increased participation in life situations.42 this reason, an increasing number of more authentic tests are being developed that can be mapped on Within both health and education intervention services, the the activity, participation, and environmental factor rehabilitation goal for CYWD should be to increase their components of the ICF.41
Table 1: Assessment data mapped onto components of the ICF
Health condition: language disorder
Assessment Body functions and Activity and Environmental and data structures participation personal factors
Cognitive functioning (FOCUS child and caregiver • Johnny is 4 years old • Average (KBIT-2). interviews) and attends Head Start Language skills • Johnny has difficulty making preschool. • Morphology (word form) friends and being included • He enjoys preschool, and syntax (sentence in other children's games. where he interacts more structure) - below average • He also has difficulty joining often with teachers than (CELF-P2). in conversation with his with peers. • Narrative skills - below peers. • Johnny has access to average (language sample). • Johnny has dificulty speech and language • Receptive vocabulary - communicating services. average (PPVT-4). independently with • He lives with his mother, • Expressive vocabulary - unfamiliar adults. who has a learning average (EVT-2). • He also has difficulty telling disability, and his Speech adults about past events. grandmother, who has a • Articulation - within normal • Johnny enjoys having family hearing impairment. limits (GFTA-3). members read to him. • Johny and his family live • Phonological errors (cluster in a low socioeconomic reduction; fronting; HAPP-3). neighbourhood. Voice, fluency, hearing • English is the only • Within normal limits. language spoken in the home. Pre-literacy skills • Rhyming - below average (PIPA).
Source: American Speech Language Hearing Association. Functional goal writing using the ICF.43
The intersection between Health and Education: meeting the intervention needs of children and youth with disabilities 177 Table 2: Clinical reasoning questions and ICF components
Body functions and structures Activity and participation Environmental or personal factors
What impairments most affect function What activities are the most important What environmental/personal in the current setting or at discharge to the family/child/youth in their characteristics help or hinder (if in hospital), based on clinician current or discharge setting? participation in activities or situations assessment and the family/child/youth in the current or discharge setting? self-report?
Source: American Speech Language Hearing Association. Functional goal writing using the ICF.43
Table 3: Writing impairment/skill-based intervention goals versus participation-based goals
Impairment vs participation-based goal/outcome
Impairment/skill-based Participation-based
• Bongani will use gestures to communicate with his mom. • Bongani will participate in outside play with his mom by pointing to indicate what he wants to do.
• Jaydon will name body parts and favourite toys. • Jaydon will participate in bath time by using words to request bath toys for play and will follow directions to wash hands, toes, and other body parts.
• Ask specific clinical-reasoning questions (Table 2) caregivers or relevant people in the participatory in relation to the ‘Body Functions and Structures’, context of the child whether they are participating in a ‘Activity and Participation’ and the ‘Environmental way that meets their expectations.44 or Personal Factors’ components in the ICF. ‘Activity and Participation’ clinical-reasoning questions allow Similarly, for CYWD in educational contexts who are required the intervention team to come up with long-term to participate in curricular and extracurricular activities, the participation-related goals for the child or youth intervention team consisting of rehabilitation professionals and with disability. Clinical reason questions in the ‘Body educators can develop shared education-specific Individual Functions and Structures’ and ‘Environmental or Support Plan goals or curriculum-related participatory goals. Personal Factors’ components, allow intervention teams to develop short-term goals that may affect the ability to Since the ICF includes more than 1 600 codes, accomplish long-term participation-related goals. professionals trained in use of the ICF often perceive the • Write the long-term and short-term functional, classification and coding system to be quite complex. participation-related goals. The key difference A more pragmatic and practical approach as described between traditional impairment-focused goals and above, or use of predetermined core and code sets could participation-related goals are that the latter are written increase its utility and accessibility.41 An ICF core set is a and documented with regard to participation, and shortlist of selected ICF codes considered most relevant discipline-specific skills are monitored in the contexts in to describe the functioning of a person with a specific which they are used, i.e. within routines and activities.44 health condition or disability, e.g. autism spectrum disorder. The examples in Table 3 show how each discipline A code set is a set of selected categories or codes for can shape its discipline-specific goals in relation to a specific purposes in different service settings, e.g. a code common participation-related goal. While the example set for children attending special schools or even particular given is written from the perspective of children who age groups.41 have speech/language impairments, occupational therapy or physiotherapy-related goals would focus The ICF can therefore provide a comprehensive view of on discipline-specific skills needed for participation in functioning and a universal language for interdisciplinary the shared or common goal to improve participation in intervention for CYWD. It offers a common framework to outside play or bath time. structure information on child functioning from a medical, • Monitor and evaluate participation-based goals. In psychological, social, educational and environmental order to know whether a participatory goal has been perspective.41 Given that the knowledge and language achieved, it is important to ask parents, teachers, used in public health, education, and rehabilitation
178 South African Health Review 2020 professions are diverse, the need for a common language to explain the functioning of children in various intervention References environments is paramount.
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Early childhood Pretoria: DoE; 2014. URL: https://www.naptosa.org.za/doc- intervention in South Africa in relation to the developmental manager/367-sias-final-19-december-2014. systems model. Infants and Young Children. 2012;25(4):334-45. 32. Shung-King M, Orgill M, Slemming W. School health 19. South African Department of Basic Education. in South Africa: Reflections on the past and prospects for Education White Paper 6. Special Needs Education: Building the future. In: Padarath A, English R, editors. South African an inclusive education and training system. Pretoria. DBE; Health Review 2014/14. Durban: Health Systems Trust; 2014. 2001. URL: https://www.gov.za/sites/default/files/gcis_ p. 59-71. document/201409/educ61.pdf. 33. Mohlabi DR, Van Aswegen EJ, Mokoena JD. Barriers to 20. Donohue D, Bornman J. The challenges of realising the successful implementation of school health services in inclusive education in South Africa. 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The intersection between Health and Education: meeting the intervention needs of children and youth with disabilities 181 REVIEW 19 Ensuring equal access to health services for the Deaf in South Africa
Provision of adequate interpretation Authors Leslie Londoni,ii services should be complemented by Virginia Zweigenthali Marion Heapi,ii programmes that boost agency of the Deaf in challenging the historical but persisting discrimination they experience.
In South Africa, up to 80% of healthcare consultations are to expand healthcare access for deaf patients, allowing conducted across language barriers. Access to quality them to realise their right to health. The role of research health care is enshrined in our Constitution, and more informing advocacy is carefully explored, as are the economic recently promised by National Health Insurance. However, arguments for addressing Deaf patients’ needs in health care. for persons born Deaf who rely on South African Sign Language (SASL) for communication, this access is thwarted To meet Sustainable Development Goal commitments, by language barriers. Barriers include providers who cannot ensuring “no one will be left behind” and “endeavour[ing] communicate in the patient’s language, and an absence to reach the furthest behind first”, the health system must of SASL interpreter services. The consequences are find ways to ensure that Deaf patients reliant on SASL have particularly disadvantageous for Deaf healthcare users, who their health needs met. The Western Cape provincial health experience multiple axes of discrimination both in health department adopted a province-wide interpreter service, care and in broader society, limiting their capacity to manage including SASL and other languages, enabling marginalised miscommunication in health care. groups to access meaningful health care. This development is partly the result of consistent evidence-generation and This chapter assembles research evidence in South Africa advocacy done in partnership with researchers, activists from the past 20 years. The research explores opportunities and the deaf community. It provides lessons not only for for health-system innovations that provide SASL interpreter enhancing access for persons with disability, but also signals services to improve quality of care and the health care the benefits of improved communication for all healthcare experience of both Deaf users and providers. The chapter users marginalised by language exclusion. examines how a pilot of novel services can be upscaled
i Division of Public Health Medicine, School of Public Health and Family Medicine, University of Cape Town ii Equal Health for the Deaf, Cape Town
Click to navigate Ensuring equal access to health services for the Deaf in toSouth Contents Africa 183 audiometric loss of hearing. Anything more than slight Introduction impairment (able to hear and repeat words spoken in a normal voice at a distance of 1 m) is classified as ‘disabling I also need respect and dignity. And I get that when the hearing impairment’. Global estimates of disabling hearing interpreter is available. With an interpreter it is clear loss suggest that 6.1% of the world's population are 5 communication; without … I am confused and do not affected, while estimates from recent South African studies 6-8 understand what is happening…. (Deaf respondent cited in range from 4.6% to 8.9%. A population survey using Haricharan et al., 2013).1 the World Health Organization (WHO) Ear and Hearing Disorders Survey Protocol in the Cape Metro in 2013 found In South Africa, up to 80% of healthcare consultations are the prevalence of disabling hearing impairment to be 4.6% 6 conducted across language barriers.2 Access to quality among individuals aged four years or older. A similar survey health care is enshrined in our Constitution, and more conducted in a rural municipality in Limpopo in 2018, and recently promised by National Health Insurance. However, using the same WHO tool, found disabling hearing loss 7 for persons born Deaf, who rely on South African Sign prevalence to be 8.9%, a difference not clearly attributable Language (SASL) for communication, this access is thwarted to age or gender distributions, which were broadly similar by language barriers. Providers cannot communicate in in the two studies. Lastly, a 2018 facility-based study found the patient’s language, and there is a dire absence of a disabling hearing loss prevalence of 6.3% among patients 8 SASL interpreter services provided by qualified, trained screened at two primary care clinics in Gauteng. professionals nationally. The consequences are particularly disadvantageous for healthcare users who are Deaf, who Thus, while the estimates show much variability, they are experience multiple axes of discrimination both in health broadly consistent with global findings and suggest that a care and in broader society,3 limiting their capacity to sizeable proportion of the South African population have manage miscommunication in health care. Yet this situation significant hearing loss, affecting their ability to negotiate persists, despite South Africa having one of the most health care and secure resources needed for health. progressive constitutions in the world, affording everyone the right of access to health care. South Africa was one of This review concerns itself primarily with persons who are the first countries to ratify the United Nations Convention on completely Deaf, particularly those who are born Deaf or who the Rights of Persons with Disabilities (UN CRPD) in 2007.4 become Deaf as children and whose first language is SASL, and for whom the descriptor ‘Deaf’ refers and who identify as This review assembles evidence from South Africa over the members of the Deaf culture and community. The numbers past 20 years. The research explores opportunities for health- in this category are difficult to ascertain. In 2006, Heap and system innovations providing patients who are Deaf with Morgans suggested that between 500 000 and 1.5 million 9 SASL interpreter services to improve the quality of their care South Africans are Deaf users of SASL. Census statistics 10 and the healthcare experience of both users and providers. have suggested lower numbers (around 288 000 in 2011), The chapter starts by describing the context, including but rather simplistic measurement instruments were used efforts to characterise the prevalence and understand the that may have underestimated prevalence. Nevertheless, the social construction of Deafness in this country. The second Deaf constitute a sizeable population in South Africa, and section reviews the impact of communication and other their access to health care and to the social determinants of barriers on the health of the Deaf, with particular attention health should be high on the policy agenda. to overlapping vulnerabilities experienced by women and children who are Deaf. Piloting of novel interventions is A striking characteristic of the Deaf community is the role examined, and potential upscaling to expand healthcare of signing, which creates networks of social relationships access for Deaf patients is explored, allowing them to realise between Deaf persons, and sign-deaf spaces that their right to health. The economic arguments for addressing sustain shared communication, “familiarity, sociability and 11 Deaf patients’ needs in health care are carefully assessed, communality in an often-hostile hearing world”. Thus, sign as is the role of research informing advocacy. The chapter language is not simply a means of communication but a concludes by highlighting the resulting policy and human marker of identity and “a common denominator of Deaf rights implications, and providing recommendations for how people, irrespective of background or social standing”. healthcare access may be improved for a marginalised group Proficiency in SASL “automatically allows membership of such as persons who are Deaf. the Deaf community and in cultural events that occur in communities where Deaf people live”.12 Through signing, Deaf persons “make life meaningful for themselves and hearing people with whom they interact”.9 As a key mediator Prevalence and context in bonding and building social capital, which can itself generate emotional, personal and health-related benefits,13 SASL is both a means to access health care and also a key Estimates of the prevalence of deafness in South Africa social determinant of health. Dense networks within the must account for a spectrum of severity, ranging from Deaf community, sustained through shared use of SASL, slight to profound impairment, based on the degree of offer important opportunities to share health knowledge,
184 South African Health Review 2020 information and empowerment. Such networks and standard methods of communication with health workers, messaging could be further strengthened should the health such as written communication, lip reading, and “trying system invest in health-promoting strategies that map and to talk while gesturing”.3 Many healthcare professionals mobilise social capital for healthy outcomes. assume that communication with their Deaf patients can be conducted through written notes,1,17,18 believing Currently, the dominant approach in educating Deaf that sign language is a translation of written languages. children recognises SASL as their primary language.12 This However, SASL is a unique language, with grammar was not always true in South Africa, and in the 1980s and and syntax dissimilar to oral languages, and therefore 90s, schooling of children who were Deaf focused on the difficult to communicate in writing. Moreover, educational simultaneous use of spoken language and signing. While disadvantage has left many Deaf persons unable to write this is no longer the case, it implies that some Deaf adults easily, whether in English or other languages.1 As a result, today may not be fully fluent in SASL. Many were forced to not only will the clinician fail to understand the patient, but rely on less effective methods of communication at school, the patient will be unlikely to understand what the health involving degraded language forms such as haphazard and worker has written. simplistic signing and exaggerated spoken languages that required lip reading.14 Written communication also limits how well complex problems can be explained and makes it difficult to ask Furthermore, notwithstanding the way in which Deafness questions or receive helpful answers. Writing notes serves as the basis for common identification and belonging, is cumbersome, takes time, and health professionals it is also important to recognise the social stratification are unlikely to give up precious time in busy clinics to within the Deaf population, given that known intersections communicate effectively through written means, especially with class, race, gender and gender identity are likely to when having to communicate complex terminology. influence Deaf persons’ experiences and access to care. This is exacerbated by illegible handwriting, and health Moreover, the foundations of the South African health professionals not understanding what the Deaf write, system, rooted in colonisation and apartheid, have left deep either because the grammatical construction is different or imprints on how power is exercised within the health system because a Deaf person has not mastered written language. to marginalise those who have previously been without voice. Discriminatory care for black people under apartheid As cited in Haricharan et al.,1 one Deaf patient recounted: reflected and reinforced a wider malaise of authoritarian and unequal treatment of other vulnerable groups with particular The thing is: I try to ask a question again if I don’t health needs. understand, but the doctors get angry and maybe they start bringing other patients in. Then I am asked to wait. Doctors get fed up, they just write something down. They don’t have patience. They are too busy to write everything. That is why The impact of communication I don’t like written notes. It does not help because I can’t and other barriers understand them. Another frequently utilised approach is to expect Deaf Communication barriers based on language mismatch patients to bring their own interpreters, often family between patient and provider in the South African members or friends able to communicate both in Sign healthcare system are well recognised,15 with a severe language and verbally. However, using lay interpreters lack of trained interpreters resulting in serious adverse has numerous drawbacks. Friends or family members may consequences for health.16 This situation is compounded for not have sufficient skills to understand and/or convey the Deaf patients, who already suffer multiple disadvantages meaning of technical information accurately. Relatives who in accessing care. Deafness reduces their employability translate may instinctively talk on behalf of the person. and income; consequently, they have fewer resources Additionally, waiting for their availability to attend an for navigating an ableist society. For example, they must appointment increases dependence, and to have a friend or negotiate public spaces where oral language renders it family member interpret imposes a breach of confidentiality. easier to hail a taxi, and they must struggle with a lack of information to get the service they need. Akach has Kritzinger and colleagues17 argue that in addition to argued that the Deaf suffer a “double linguistic imperialism” communication obstacles, interpersonal factors also play a because whereas indigenous languages have, with the role through pervasive disempowerment, passive attitudes, overturning of colonialism, been forefronted as official family over-protectiveness, feelings of alienation, and shame, languages in the developing world, sign languages have all of which combine to create a sense of exclusion. More than remained marginalised.12 just providing professional interpreters, health services need to empower Deaf patients to be assertive and “expect and The hegemony of oral language communication in wider demand the same access to health care that others enjoy”. society is reflected in the health system, where Deaf patients commonly report having to make do with sub-
Ensuring equal access to health services for the Deaf in South Africa 185 The consequences of poor communication are varied. Moreover, the quality of provider-patient interactions was These include delayed diagnoses, misdiagnosis, incorrect found to be problematic in certain instances, reflecting many or delayed treatments, poor-quality care, poor adherence obstacles posed in other healthcare settings. Interpreters to medication resulting in poorer health outcomes, patients were present in only 28% of antenatal visits and 33% during not understanding their diagnosis and treatment, or patients labour and delivery. Interpreters were typically family being unable to convey information to the provider.1,3,17,19,20 members, which as previously stated, is problematic for Patients may exit the consultation with no idea of the confidentiality and ethical practice.22 Written communication diagnosis or treatment.17 during labour and delivery is clearly impractical and ineffective, in addition to being disrespectful. On a psychosocial level, the absence of equal and authentic communication impacts on the quality of interaction. This Deaf children can include situations such as patients finding themselves The challenges for Deaf children are amplified, as early left in the waiting room at the end of a long and busy day life experiences of the health system that are traumatic in a state healthcare facility because they could not 'hear' or unwelcoming impact on their later expectations or lip-read when their names were called; patients feeling and willingness to seek care.23,24 Heap and colleagues that they are a burden because they are using valuable have shown that mental health was the main reason for clinician time, therefore hurrying the consultation and requesting interpreter services at a Deaf school in the further diminishing the quality of communication; if a parent Western Cape between 2013 and 2016.20 Needs included is translating, reluctance to question him or her; anxiety; general psychological support, drug rehabilitation, and infantilisation when the doctor speaks to the interpreter; trauma counselling. Qualitative interviews with 13 children inability to follow instructions or know where services are revealed patterns of feeling excluded in consultations, available, resulting in shame, frustration, despondence, disengagement, and withdrawal as a result of doctors giving up on seeking care or skipping visits (sending family speaking to the adult present, usually a parent. One members to pick up medications); and humiliation at being learner described consultations as “boring”, best managed mocked.17,20 In many senses, it is the healthcare environment by “ignoring them and chatting on my phone”. Learners that is the disabling factor, because Deaf patients are not typically reported these exclusionary interactions as being provided with adequate or sufficient communication support ‘just normal’. to ensure adequate access to health care. In terms of children’s agency, unequal power in the Importantly, Deafness is largely invisible to the healthcare consultation renders Deaf children particularly passive. This system. It is one of a number of disabilities poorly is reflected in the words of one learner: “I just look away and understood by both providers and other users, since there give him the arm” (for an injection). Parents or accompanying is no visible evidence of disability, such as a wheelchair or adults become particularly important as gatekeepers of cane. For example, a study of health committees linked to information, depending on what the adult believes. Given primary care facilities dealing with disability21 found that other findings17 suggesting that feeling over-protected the committees were restricted in their understanding of by accompanying adults is an equally disempowering disability to physical disabilities, most commonly associated experience, Deaf children face difficulties beyond those of with the visible signifier of a wheelchair. hearing children in the healthcare setting. While children in this study strongly favoured the use of interpreters, developing agency through increased understanding of their health care and rights is additionally important.20 Multiple and overlapping vulnerabilities These findings are replicated in studies of Deaf adults and children from the United Kingdom,25 the USA,26 Brazil,27 Nigeria,28 New Zealand29 and Spain.30 Deaf women and pregnancy It has been shown that pregnant women are particularly vulnerable to poor communication practices in South Africa, and that this affects their health and that of their infants. Interventions can and do work A study involving a purposive sample of Deaf, pregnant women in Cape Town found similar patterns of overall Underlying the challenges facing Deaf patients is the antenatal usage to that of the general female population, problem of poor or absent communication. Local and but a significant proportion delayed seeking care until international research points to the importance of sign after the first trimester, thus increasing the risk for adverse language interpretation in the consultation as critical in pregnancy outcomes.22 While late antenatal booking is establishing trustful and clinically effective relationships1,19,25 not uncommon in South African obstetric services, the and ensuring access to information and appropriate evidence of poor communication and the prospect of an services.31 Between 1995 and 2019, the Health and Human unhelpful and alienating service17 may be responsible for Rights Programme at the University of Cape Town, under Deaf women’s avoidance of early contact with the services.
186 South African Health Review 2020 the leadership of Dr Marion Heap, developed a free SASL Concurrently, providers reported highly positive experiences interpreter service for Deaf patients needing health care. with interpreters. For example, one family physician noted: A pilot service32 was established with the support of organisations of the Deaf, and funded through research This was the first time that she had brought an interpreter grants. This enabled patients to text a request and be with her.... The interpreter stood facing the patient accompanied or met by a professional SASL interpreter at square on, signing every little thing that I said, however the health service. Initiation of this service was specifically insignificant, even if I was addressing her and not the framed as a human rights initiative to afford the Deaf patient.... the patient was not left out of anything.... Previous entitlement to equal treatment under the Constitution.11 consultations must have just happened in a world of silence and inexplicable facial movements, signifying nothing.… Deaf staff were later trained to manage the service, She did not know that this was “blood sugar” that we were representing the ethos of the Disability movement which measuring, but through the miracle of sign language, it insists that those most affected by discrimination be at the became clear to her, and I could literally see that clarity centre of action to address their disadvantage. When the appearing on her face as the interpreter explained project first started, it handled four or five requests per everything I was saying, and as she was having her many month. Towards the end of the pilot, numbers exceeded questions properly asked, understood, and answered.a 30 per month.33 This reflected both a substantial unmet need and the increasing ease of Deaf patients when Affording the Deaf opportunities to express themselves using services that would normally be experienced as in their first language facilitates wider engagement. For unwelcoming. The pilot enabled healthcare utilisation rates example, members of the Deaf community expressed their among the Deaf to approximate the national target of 3.5 views through a video using SASL-interpreted narration to a visits per annum per capita.34 South African Human Rights Commission (SAHRC) Hearing on Access to Health Care in 2007,36 a first in the history of By 2018, the Western Cape government had extended its SAHRC public hearings. sub-contracted interpreter service to include SASL,35 partly as a result of repeated lobbying efforts and presentations to Yet, while necessary, providing SASL interpreter services is various policy platforms and officials. To access this service, insufficient to overcome the other obstacles experienced Deaf children and adults send a text-based message to a by Deaf patients negotiating an alien and often hostile private language and translation service, which in turn clears healthcare system.17 Strategies must empower the Deaf the request with the Department of Health and books an to assert their rights,17,19 and remove barriers such as accredited SASL interpreter for the patient’s appointment.20 by providing adequate signage, creating safe spaces,3 Until this point in the public sector, SASL translation services educating service providers,3,35 and engaging Deaf users so were only available in the judicial sector and parliament. that they can expect more and not “silence themselves”.17 The successful mainstreaming of SASL interpreter services demonstrates the feasibility of upscaling pilot initiatives. Nonetheless, given that language is instrumental in so many other human rights (such as the right to information, One unique result of this pilot, born of difficulty accessing dignity and equality), the provision of SASL interpreting is eye care, was an ophthalmology outpatient service fundamental to meeting the healthcare needs of the Deaf. offering fast-track access for Deaf patients; intact vision is In the words of one Deaf participant, SASL interpretation is particularly important for these patients given their reliance “feeling freedom”.37 on signing for communication. Using bulk SMSs, up to five Deaf patients could attend an outpatient clinic on a For that reason, expanding the pool of professional designated appointment day, supported by a professional interpreters trained for healthcare settings is key to reduce SASL interpreter. The willingness of healthcare providers to human resource constraints. Together with DEAFSA, the accommodate Deaf patients was also reported in a primary University of the Free State (UFS) developed the first care setting18 to ensure equitable treatment of patients with accredited SASL interpreter courses some two decades ago, greater need. but it was only in 2012 that the first professional medical SASL interpreter training course38 was created. This two- The effectiveness of interpreter services was captured in year accredited programme emerged as a collaboration with qualitative research undertaken to evaluate the service.1,20 the UFS, and the non-governmental organisations (NGOs) For example, one patient reported that with the SASL SLED (Sign Language Education and Development) and interpreter service, “I understood everything 100%. I did not DCCT (Deaf Community of Cape Town). struggle. [With a professional interpreter] everything is much better and quicker. You need to be able to ask complex Van Pinxteren39 noted that for Deaf persons, the cell phone questions.… I also need respect and dignity. And I get that is a means to “negotiate their marginalised position as when the interpreter is available”. people living with a hearing impairment”. It enables them to both “extend and intensify their social relationships” a Neal David. Comment in Michael Mapongwana Community Health Centre Newsletter; 14 November 2013.
Ensuring equal access to health services for the Deaf in South Africa 187 and to “negotiate barriers of existing Deaf and hearing Provision of SASL interpreter services will not be cheap. It communities”. It is thus an important contributor to both is suggested that the costs of upscaling the Western Cape bonding and bridging social capital. Given extensive interest pilot will be between 1% and 5% of the Provincial health in the use of mobile technology as a way to deliver health- budget.34 However, different modes of delivery (e.g. remote promoting messages and effect behaviour change,40 and interpreting45) and careful organisation of services may given that high levels of social capital can influence health substantially reduce this cost. Additionally, such a service through the rapid spread of healthy norms in a community, will promote equity, serving a population that has previously it is clear that mobile technology is important for health not benefitted from health services to the same extent as promotion and disease prevention among the Deaf. Early the hearing population.34 Savings from avoiding missed evidence suggests that this is the case among South African or late diagnoses or inappropriate treatment remain to be Deaf patients. For example, an SMS-based information estimated, although a UK study has suggested that the campaign with Deaf adults improved knowledge about National Health Service might save £30 million annually hypertension and healthy living. SMSs were a motivation to through provision of British Sign Language.46 change behaviour, a reminder of the change required, and a sign of care, as the receiver felt that she or he was being looked after. The researchers also noted the importance of ensuring that interventions recognised the unique needs Conclusion and communication preferences of the Deaf, including use of images, signed SMSs, and drama enacted using sign The Sustainable Development Goals commit to ensuring language that enabled questions to be answered.41 The that “no one will be left behind” and to reaching those potential for upscaling these interventions is therefore high. “furthest behind first”. The South African health system must therefore ensure that Deaf patients reliant on SASL can be active citizens in the system rather than passive recipients of second-rate care. Equitable access to health care for the Deaf Policy and human rights community therefore requires provision of SASL interpreter services that can simultaneously address autonomy, Writing almost three decades ago, Penn and colleagues42 confidentiality, empowerment and information sharing. bemoaned the observation that the Deaf had “themselves accepted the hearing world’s valuation of hearing as The Western Cape has adopted a province-wide interpreter the norm and deafness as a deficit to be masked or service, including SASL and other languages, enabling remediated if at all possible”. However, all that has now marginalised groups to access health care meaningfully. changed due to strong advocacy led by the Deaf and their This development is partly the result of consistent organisations.43 It is anticipated that SASL will be adopted evidence-generation and advocacy done in partnership as an official language, which would open the way for much with researchers, activists and the Deaf community. Such wider institutional recognition of and support for SASL. In advocacy uses a human rights lens to provide lessons not September 2020, the Pan South African Language Board only to enhance access to care for persons with disability, (PANSALB) launched the South African Sign Language but also to signal the importance of improved communication Charter44 (SASLC). Of the nine pledges, three speak directly for all healthcare users who are marginalised by language to the need to ensure that Deaf persons have access exclusion. The benefits of an inclusive approach to to SASL interpreter services. These include guaranteed communication, bridging obstacles experienced by other access to services and information through SASL, minimum healthcare users not conversant in the dominant language, standards of competency in SASL for those working may resonate across the health system and strengthen directly with Deaf persons, and making professional SASL system responsiveness to users more generally. interpreting and translation services readily available. Moreover, this knock-on benefit may also heighten South Africa’s Constitutional guarantees and international awareness within the health system of disability as a human commitments under the UN CRPD provide strong human right and encourage more inclusive and rights-based health- rights imperatives obliging the state to provide SASL system responses.47 Providing a SASL interpreter service is interpreter services for Deaf patients. This is salient given a rights-based approach focused on reducing social barriers that it was advocacy by disabled South Africans and their rather than on individual impairment. The service addresses organisations that was key to adoption of the disability the wider South African social context, similar to accessible provisions in the Constitution. In fact, these provisions public transport for disabled persons and wheelchair access presaged the adoption of the CRPD at a global level, to health facilities. reflecting the importance of indigenous voices from the South in shaping policy for those with disability. A similar While access to interpretation is essential, on its own recognition of user agency and voice should be present in interpretation is insufficient to ensure adequate access to health-system responsiveness to the needs of the Deaf. quality health care. Many barriers faced by the Deaf are also faced by other disabled and marginalised users. For that
188 South African Health Review 2020 reason, provision of adequate SASL interpretation services should be complemented by programmes that boost agency References of the Deaf in challenging the historical but persisting discrimination they experience. 1. Haricharan HJ, Heap M, Coomans F, London L. Can The words below, from a participant in Tshegofatso Senne’s we talk about the right to healthcare without language? A study,3 capture both the challenges of a health system critique of key international human rights law, drawing on seeking to be responsive to Deaf patients, and the agency the experiences of a Deaf woman in Cape Town, South needed by the Deaf to make their constitutional rights real: Africa. Disabil Soc. 2013;28:54-66. 2. Penn C. Factors affecting the success of mediated You need to know that you have your rights and you must medical interviews in South Africa. Current Allergy & Clinical fight for them. I have the right to go to the police station or Immunology. 2007;20:66-72. to the clinic. Tell them you’re Deaf and you have a problem and that you need SASL. I have the right to be treated as a 3. Senne T. Deaf women’s lived experiences of their normal person.... We have a right to be recognised in South constitutional rights in South Africa. Agenda. 2016;30:65-75. Africa as a whole. If people know about accessibility and 4. United Nations General Assembly. Convention on understand this, then we just need to make SASL an official the Rights of Persons with Disabilities. New York: UN; language. There’s no other way to solve it. 24 January 2007. A/RES/61/106. URL: https://www.refworld. org/docid/45f973632.html. Acknowledgements 5. Davis AC, Hoffman HJ. Hearing loss: rising prevalence This chapter would not have been written without a and impact. Bull World Health Organ. 2019;97:646-646A. lifetime of dedication on the part of Dr Marion Heap, who empowered the Deaf to challenge their vulnerability. 6. Ramma L, Sebothoma B. The prevalence of hearing The chapter was written as a tribute to Marion, who died impairment within the Cape Town Metropolitan area. S Afr J prematurely in August 2019. Much of the work cited here is Commun Disord. 2016;63:a105. the product of her singular, focused and ground-breaking 7. Joubert K, Botha D. Contributing factors to high research, particularly addressing efforts to improve prevalence of hearing impairment in the Elias Motsoaledi equitable access to SASL interpreter services in the health Local Municipal area, South Africa: A rural perspective. S Afr sector. The research reflects her commitment to ensuring J Commun Disord. 2019;66:a611. that the Deaf are able to assert their human rights to health, information and dignity in our healthcare system. 8. Louw C, Swanepoel D-W, Eikelboom RH, Hugo J. Prevalence of hearing loss at primary health care clinics in Funding for her work and for her collaborators cited in this South Africa. Afr Health Sci. 2018;18:313-20. chapter includes grants from the South African Medical 9. Heap M, Morgans H. Language policy and SASL: Research Council, the National Research Foundation, the interpreters in the public service. In: Watermeyer B, Swartz L, Human Sciences Research Council, the Universities of Cape Lorenzo T, Schneider M, Priestly M, editors. Disability and and Stellenbosch, and a grant MD 001452 from the National social change: A South African agenda. Cape Town: Human Center on Minority Health and Health Disparities of the Sciences Research Council; 2006. National Institutes of Health in the USA. 10. Statistics South Africa. Census 2011: Profile of persons Our grateful thanks go to the Deaf community of Cape Town with disabilities in South Africa. URL: http://www.statssa.gov. for their participation in a number of Dr Heap’s research za/publications/Report-03-01-59/Report-03-01-592011.pdf. projects, and to the Deaf research assistants and SASL 11. Heap M. Sign-deaf spaces The Deaf in Cape Town interpreters for their enthusiasm and for making much of the creating community crossing boundaries constructing research cited here possible. identity. Anthropology Southern Africa. 2006;29:35-44. 12. Akach PAO. Application of South African Sign Language (SASL) in a bilingual-bicultural approach in education of the deaf. PhD thesis, University of the Free State; 2010. URL: https://scholar.ufs.ac.za/handle/11660/663. 13. Ferlander S. The importance of different forms of social capital for health. Acta Sociologica. 2007;50:115-28. 14. Glaser M, Van Pletzen E. Inclusive education for deaf students: literacy practices and South African sign language. Southern African Linguistics and Applied Language Studies. 2012;30:25-37.
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Ensuring equal access to health services for the Deaf in South Africa 191 REVIEW 20 Health and Related Indicators
Routine health information systems are Authors Candy Dayi poorly organised to allow for fine monitoring Andy Grayii Thesandree Padayacheei of the access that people with disabilities Annibale Coisi have to the services they need.
This chapter aims to provide a repository of data, at a to allow for fine monitoring of the access that people with national and provincial level, particularly focused on routine disabilities have to the services they need, and how that data sources but also capturing major surveys and global access impacts on their health status. reports. The key theme in 2020 is equitable access to healthcare for person with disabilities. Carefully planned disaggregation of routine and survey data can reveal the extent to which persons with disabilities enjoy This chapter has shown that routine health information equitable access to healthcare services, or are denied this systems, bolstered by representative national surveys, can right. However, this requires designation of disability status allow for the state of health of the nation to be described as a dichotomous variable. As progress is made towards and tracked over time. Some of these measures are implementing National Health Insurance, routine data sensitive enough to already detect the profound impacts systems will need to reflect both public and private sector that COVID-19 has wrought. Some are indicative of provision of services. COVID-19 has revealed how important challenges that are still to be faced, as health services have timeous access to accurate, comprehensive multi-sectoral been disrupted. Some are yet to reveal the lessons of an health data is to effective and agile planning and execution extraordinary year. Perhaps as could have been predicted, of health interventions. routine health information systems are poorly organised
i Health Systems Trust ii Division of Pharmacology, Discipline of Pharmaceutical Sciences, University of KwaZulu-Natal
Click to navigate to Contents Contents
Introduction 195
Data sources 195
Disability indicators 196
Universal Health Coverage Service Coverage Index 214
Demographic indicators 219
Socio-economic and environmental risk factor indicators 230
Health status indicators 231
Mortality 231 Infectious disease 238 Tuberculosis 238 HIV and AIDS 240 Reproductive health 247 Child health 249 Non-communicable diseases 252 Injuries and risk behaviours 254
Health services indicators 256
Health facilities 256 Health personnel 259 Health financing 263
Conclusion and recommendations 269
Acknowledgements 269
References 269
194 South African Health Review 2020 most of the key international and national data sources and Introduction literature on a range of health indicators, it cannot claim to be exhaustive. The data provided in this chapter are The Health and Related Indicators chapter of the Review only a sub-set of those available. More data, particularly always serves two distinct purposes – as a repository those showing trends over time, can be accessed on the of data and as a means of focusing on the theme of the redesigned Health Systems Trust (HST) website (www.hst. Review. The repository covers data at a national and org.za). In addition, a substantial set of district-level data provincial level, particularly focused on routine data sources are presented in the District Health Barometer reports, but also capturing major surveys and global reports. While a which are also accessible from the HST website. Although longer-term focus on the progress towards universal health attention is drawn to known data quality or interpretation coverage remains in the background, the key theme in 2020 issues, it is not possible to verify, adjust and correct every is equitable access to healthcare for person with disabilities. data source in detail. Caution is therefore advised with Within the focus areas, some data are shown down to regard to which types of indicators are presented and 4 district level. whether their use is suitable for the intended purpose.
According to Article 31 of the United Nations Convention Data sources for the Rights of Persons with Disabilities (UNCRPD), routine For some indicators reported in this chapter, data are health information systems should allow for disaggregation provided for several years. That data are shown for specific of data to track the health status of persons with disabilities, years should not be interpreted as meaning that no data the extent to which they receive the services they need, are available for the years that are not depicted. However, and the extent to which budgets, human resource planning as data may be drawn from multiple sources, care should and plans enable such service coverage.1 The World be taken in assessing trends and changes over time. Report on Disability specifies that data on disability should Differences in methodology and data presentation may be collected to estimate the prevalence of disability, make comparisons challenging. The current indicator plan appropriate services and to monitor equalisation of definitions are provided after each of the data tables in opportunities for people with disabilities.2 That South African the chapter. Data from regular surveys may also not be health information systems do not meet this expectation is comparable over time. In some cases, revised data for a clear, despite the country being a signatory to UN CRPD. historical time series may be released, for example with the Aggregate data systems are poorly positioned to document General Household Surveys. This may result in different the individual experiences of particular patients, or groups values being published compared to previous editions of of patients. Disability is also not a dichotomous variable, but the Review. The mid-year population estimates used by represents a range of degrees of difficulty across a number the National Department of Health in the District Health of functional domains. The International Classification of Information System (DHIS-NDoH) have been updated and Functioning, Disability and Health (ICF) is an additional projected for the period 2000-2030. When using time series framework for describing and organising information on data, the most recent revisions should be obtained from the functioning and disability and creates a standard language online database and not from previous printed editions of for the definition and measurement of health and disability.3 this chapter.
This chapter presents national data, disaggregated to Box 1 lists key new or updated sources, at both an provincial level where possible, and in some cases by age international and national level. Specific references are and sex. As before, while this chapter attempts to identify provided in the data tables in the chapter.
Health and Related Indicators 195 Box 1: Key new or updated sources
International South African
• Global Burden of Disease Study 2017-2019 papers • Council for Medical Schemes Annual Report 2018/19 • Global COVID-19 data repositories and dashboards • District Health Information System (DHIS) (multiple) • DHIS-NDoH Population Estimates 2000-2030 • Global Tuberculosis Report 2020 • Tier.Net, now incorporating the Electronic TB Register • Levels and Trends in Child Mortality Report 2020 • Electronic Drug Resistant TB Register (EDRWeb) • Naomi model for district-level HIV estimates (UNAIDS) • Stats SA General Household Survey (GHS) 2018 • UNAIDS Data 2020 • Labour Force Surveys up to 2020 • World Health Statistics 2020 • South African sub-national COVID-19 data repositories (multiple) • Mortality and causes of death in South Africa, 2017 • National Treasury health expenditure data • Personnel Administration System (PERSAL) • Rapid Mortality Surveillance Report 2018 • Recorded live births 2019 • Road Traffic report 2019 • SDG SA Report 2019 • Stats SA Mid-year population estimates 2020 • Surveillance data, surveillance bulletins and other reports issued by the National Institute for Communicable Diseases (NICD), including a new set focussing on COVID-19 • Thembisa v4.3 HIV and AIDS model
non-disabled counterparts is a key principle of the 2030 Disability indicators Agenda for Sustainable Development Goals (SDGs), which calls for the global eradication of disadvantage through the improvement of situations for all peoples. A key focus of this issue of the Review is equitable access to healthcare for persons with disabilities. It has been argued The challenge is how to define disability, and measure its that universal health coverage (UHC) cannot be attained prevalence in a consistent manner. Globally, measures of without a focus on disability.5 The numbers of persons with disability prevalence vary, but the definitions and survey disabilities are rising globally and the increased prevalence questions developed by the Washington Group on Disability is particularly notable in places where national populations Statistics (accessible at https://www.washingtongroup- are growing older at unprecedented rates, leading to a disability.com) are most widely used and endorsed. The higher incidence of diabetes, cardiovascular diseases, and Washington Group Short Set on Functioning (WG-SS) is a set mental disorders.2 The promotion of disability-inclusive of six questions intended to be used in national censuses strategies can therefore not only serve to address the needs and surveys. The WG-SS is aligned with the International of persons with disabilities but may also advance equity by Classification of Functioning, Disability, and Health (ICF), benefitting older people, for example. which characterises disability in a bio-psychosocial sense as the “interaction between a person’s capabilities (limitation Although South Africa is signatory to the UNCRPD, the in functioning) and environmental barriers (physical, social, realisation of these commitments will not be achieved cultural or legislative) that may limit their participation without sound data with which to monitor progress. Globally in society”. Rather than measuring disability in simple comparable data is therefore essential to: dichotomous terms, the WG-SS allows for a dynamic 1) Measure prevalence as a means of understanding the response. For each question, a range of responses is possible: scale of potential policy needs and impacts. Patterns of no difficulty; some difficulty; a lot of difficulty; cannot do at all; prevalence disaggregated by age, gender, geographical refused; don’t know. Four levels of difficulty are described. region, ethnicity, and other important socioeconomic The six domains and the questions posed in each are: factors are critical in directing policy interventions and • Vision: [Do/Does] [you/he/she] have difficulty seeing, resource allocations. even if wearing glasses? 2) Measure the extent of exclusion of persons with • Hearing: [Do/Does] [you/he/she] have difficulty hearing, disabilities, which aligns with the international call to even if using a hearing aid(s)? “leave no one behind”. Statistical data that is able to • Mobility: [Do/Does] [you/he/she] have difficulty walking measure and highlight the extent of the difference in the or climbing steps? lived experiences of persons with disabilities and their
196 South African Health Review 2020 Disability exists along a spectrum
DISABILITY REPRESENTS A RANGE OF DEGREES The Washington Group on Disability Statistics developed six domains and OF DIFFICULTY ACROSS A NUMBER OF questions to measure disability FUNCTIONAL DOMAINS prevalence:
VISION COGNITION Do you have difficulty Do you have difficulty seeing, even if remembering or wearing glasses? concentrating?
HEARING SELF-CARE Do you have difficulty Do you have difficulty with hearing, even if using a self-care, such as washing hearing aid(s)? all over or dressing?
MOBILITY COMMUNICATION Do you have difficulty Do you have difficulty walking or climbing steps? communicating, for example understanding or being understood?
• Cognition (Remembering): [Do/does] [you/he/she] have • a restrictive (or severe) measure, which includes difficulty remembering or concentrating? persons who reported “a lot of difficulty” or “unable to • Self-care: [Do/does] [you/he/she] have difficulty with self- do” in any of the six domains. care, such as washing all over or dressing? • Communication: Using [your/his/her] usual language, The mobility question was posed as: “Does (name) have [do/does] [you/he/she] have difficulty communicating, for difficulty in walking a kilometre (length of 10 soccer fields) or example understanding or being understood? climbing a flight of stairs?”. All three measures only include household members aged 5 years or older, so no data on The Washington Group has also developed enhanced and disability in younger children are accessible. Conversely, extended question sets as well as a module for labour force increasing frailty may lead to over-estimation of disability surveys. A child-functioning module for ages 2-4 years has in those of advanced age. Representing disability in a also been developed with UNICEF. simple dichotomous fashion is therefore difficult, and may vary between settings, surveys, and reports. Based on the It is critical to interpret any reported disability statistics in UN measure a national disability prevalence of 7.4% was relation to the specific questions posed and how they have reported in Census 2011, and 7.7% in the Community Survey been combined. Statistics South Africa has applied three 2016. Table 1 shows the prevalence of each degree of measures in reporting the data from the Community Survey difficulty, for each of the six domains, by sex based on the 2016:6 Community Survey 2016. Table 2 shows the prevalence per • a broad measure, which includes every person who population group, for the broad, UN and severe measures, reported “some difficulty”, “a lot of difficulty” or “unable from a range of sources. Figure 1 shows how the broad, UN to do” in any of the six domains; and severe prevalence values differ for South Africa. • a United Nations (UN) measure, which includes persons with at least “some difficulty” in any two of the six domains, and persons who reported “a lot of difficulty” or “unable to do” in any of the six domains; and
Health and Related Indicators 197 Table 1: Population 5 years and older by sex, type of difficulty in functioning and degree of difficulty
Type of No Some A lot of Cannot do No Some A lot of Cannot Sex Total disability difficulty difficulty difficulty at all difficulty difficulty difficulty do at all
Seeing Male 22 160 981 1 693 307 318 058 32 797 24 205 143 91.6 7.0 1.3 0.1
Female 22 354 152 2 520 855 509 492 36 807 25 421 306 87.9 9.9 2.0 0.1
Total 44 515 133 4 214 162 827 550 69 604 49 626 449 89.7 8.5 1.7 0.1
Hearing Male 23 390 517 647 954 136 563 29 589 24 204 623 96.6 2.7 0.6 0.1
Female 24 349 640 867 260 171 223 33 064 25 421 187 95.8 3.4 0.7 0.1
Total 47 740 157 1 515 214 307 786 62 653 49 625 810 96.2 3.1 0.6 0.1
Communicating Male 23 777 777 298 084 84 596 45 988 24 206 445 98.2 1.2 0.3 0.2
Female 24 949 060 352 131 79 707 41 178 25 422 076 98.1 1.4 0.3 0.2
Total 48 726 837 650 215 164 303 87 166 49 628 521 98.2 1.3 0.3 0.2
Walking Male 23 216 214 648 454 262 872 76 546 24 204 086 95.9 2.7 1.1 0.3
Female 23 733 093 1 125 607 464 656 96 101 25 419 457 93.4 4.4 1.8 0.4
Total 46 949 307 1 774 061 727 528 172 647 49 623 543 94.6 3.6 1.5 0.3
Remembering Male 23 330 844 652 645 184 047 31 955 24 199 491 96.4 2.7 0.8 0.1
Female 24 149 844 979 711 258 018 29 564 25 417 137 95.0 3.9 1.0 0.1
Total 47 480 688 1 632 356 442 065 61 519 49 616 628 95.7 3.3 0.9 0.1
Self-care Male 23 584 934 417 749 133 340 71 456 24 207 479 97.4 1.7 0.6 0.3
Female 24 690 596 514 688 146 911 70 658 25 422 853 97.1 2.0 0.6 0.3
Total 48 275 530 932 437 280 251 142 114 49 630 332 97.3 1.9 0.6 0.3
Reference notes UN disability measure: a CS 2016 Disability6 Two or Any area(s) more areas with a lot of OR with some difficulty or difficulty cannot do at all
Table 2: Disability indicators by population group
African/ Indian/ Indicator Period Sex|Age|Series|Cat Coloured White Ref Black Asian
Prevalence of disability 2016 both sexes 5+ years CS broad measure 15.5 16.9 17.5 19.9 a
both sexes 5+ years CS severe 4.4 4.4 4.3 4.4 b
both sexes 5+ years CS UN measure 7.6 7.5 8.4 9.2 c
both sexes all ages CS 7.6 7.5 8.4 9.2 d
Prevalence of hearing 2012 15+ years SANHANES 9.2 7.2 13.5 12.7 e disability 2016 both sexes 5+ years CS broad measure 3.6 3.3 3.9 5.7 f
Prevalence of sight disability 2016 both sexes 5+ years CS broad measure 9.7 11.8 12.4 13.9 f
Reference notes a CS 2016 Disability.6 Broad disability measure includes all c CS 2016 Disability.6 Disability prevalence computed is based persons aged 5 years and older that reported 'some difficulty' on UN recommended disability measure. in any of the domains of functioning, 'a lot of difficulty' and d Community Survey 2016.20 'cannot do at all' to any of six domains of functioning. e SANHANES-1.21 b CS 2016 Disability.6 Refers to the severe disability measure f CS 2016 Disability.6 Broad disability measure which includes which includes all persons age 5 years and older that reported all persons aged 5 years and older that reported 'some 'a lot of difficulty' and 'unable to do at all' to any of six domains difficulty', 'a lot of difficulty' or 'cannot do at all' in the domain of of functioning. functioning.
198 South African Health Review 2020 Figure 1: Disability prevalence (5 years and older) by measure type, South Africa, 2016
Broad measure 16.1 UN measure 7.7 Severe 4.4
0 2 4 6 8 10 12 14 16 18 Percentage
Source: CS 2016 Disability.6
South African disability data is incomplete
DISABILITY PREVALENCE DATA HAS NOT BEEN REPORTED SINCE 2016 THE SOUTH AFRICAN HEALTH INFORMATION SYSTEMS CURRENTLY DO NOT MEET EXPECTATIONS OF THE SYSTEMS TO TRACK:
The next time persons with disabilities data will be reported is the extent to which they receive in the 2021 the services they need census. the extent to which budgets and plans enable such service coverage.
2016 COMMUNITY SURVEY
2011 CENSUS
2007 COMMUNITY SURVEY
Health and Related Indicators 199 The sample size of any survey also needs to be considered. lower middle-income countries, and also in the poorest A Census allows for fine disaggregation, whereas the than the richest wealth quintiles.8 In South Africa, a survey modest sample (30 000 households) used in annual General conducted in two under-resourced settings in the Western Household Surveys means that disaggregation by more Cape (an urban informal settlement and a semi-rural town) than two dimensions (such as age, sex and geolocation) showed differences in the prevalence and patterns of is less reliable. This makes any attempt to stratify other disability, but also higher prevalence than the national figure indicators by disability status challenging, and means that reported in the Census.9 Figure 2 shows national prevalence identifying those potentially “left behind” is difficult. A case- figures, based on the Community Survey 2016, by 5-year control method, nested with a national survey, has been age bands, by province, by sex and by population group. At applied to compare health status, access to health services the national level, the prevalence of people with disabilities and rehabilitation, and socioeconomic status between in the age group 85 years and older was 73.1%. The those living with disabilities and those without difficulties prevalence of disability was highest in Free State (11.0%) and in functioning.7 Globally, it has been shown that the age- Northern Cape (10.7%) and lowest in Western Cape (6.3%) standardised prevalence of disability is higher in low- and and Limpopo (6.4%).
Figure 2: Disability prevalence (UN measure) by ethnic group, province, sex and age group, 2016
Ethnic GEO Sex Agegroup GEO All EC both sexes all ages 8.5 EC FS both sexes all ages 11.0 FS GP both sexes all ages 6.7 GP KZ both sexes all ages 8.6 KZ LP both sexes all ages 6.4 LP MP both sexes all ages 7.5 MP NC both sexes all ages 10.7 NC NW both sexes all ages 8.7 NW WC both sexes all ages 6.3 WC SA both sexes 5-9 years 4.2 SA 10-14 years 3.0 15-19 years 2.6 20-24 years 2.4 25-29 years 2.7 30-34 years 3.4 35-39 years 3.9 40-44 years 5.7 45-49 years 9.0 50-54 years 13.7 55-59 years 18.3 60-64 years 24.2 65-69 years 31.5 70-74 years 40.9 75-79 years 49.9 80-84 years 61.1 85+ years 73.1 all ages 7.7 female all ages 8.9 male all ages 6.5 African SA both sexes all ages 7.6 Coloured SA both sexes all ages 7.5 Indian/Asian SA both sexes all ages 8.4 White SA both sexes all ages 9.2
0 10 20 30 40 50 60 70 80 Percentage
Source: CS 2016 Disability.6
200 South African Health Review 2020 ) Disability prevalence increases dramatically with age in South Africa
% FOCUSING ON DISABILITY-INCLUSIVE STRATEGIES CAN 67.1 ADVANCE EQUITY BY BENEFITTING OLDER PEOPLE
Prevalence of disability (%) is up to 16 x higher among the elderly than among people in younger age groups
% 29.75
% % % 4.2 2.8 4.5
5-9 YRS 10-19 YRS 20-49 YRS 50-79 YRS 80-85+ YRS
Aggregated routine data cannot easily be examined to from primary to tertiary and specialised health care identify differences in health utilisation or outcomes in those levels as guided by the document on Integrated living with disability, compared to the population as a whole Disability Management and Rehabilitation Pathways of since disability is not included as a dichotomous stratifier for Care. any data elements. More finely focusing on particular age • Develop an appropriate, effective and efficient groups with disability, be those children or the elderly, is also referral system between all levels of care including challenging as it would markedly increase the number of the expansion of services to improve access to data elements to be captured. One additional factor needs rehabilitation units and specialised rehabilitation to be considered – measures of utilisation of services (such centres. as the provision of assistive devices) might not be suitable • Foster inter-sectoral collaboration to address social indicators of effective coverage, as they might not reflect determinants. actual need. People with disabilities are expected to have • Implement accessibility standards for infra-structure, higher healthcare needs on average. For the same level of communication, signage and information. utilisation, they would therefore have lower coverage than • Increase awareness and knowledge of health care others in the population. The indicators included in DHIS workers to change their attitudes toward children and (cataract surgery rate; hearing aids issued rate; spectacles adults with disabilities and their families. issued rate, wheelchairs issued rate, and school learner • Improve monitoring and evaluation of disability and referred for eye care, hearing problem and speech problems rehabilitation services. rates) all suffer from this potential drawback. • Improve human resources for disability and rehabilitation services. The current national policy document – the Framework and • Improve access to appropriate assistive/technology Strategy for Disability and Rehabilitation Services in South and accessories. Africa 2015-2020 (FSDR) – has set the following goals:10 • Integrate comprehensive disability and rehabilitation services including within priority health programmes
Health and Related Indicators 201 Provision of assistive devices is inadequate
ISSUE RATES (%) OF ASSISTIVE DEVICES FOR PERSONS WITH VISION, HEARING, SPEECH AND LANGUAGE, AND PHYSICAL DIFFICULTIES ARE LOW
HEARING AIDS WHEEL CHAIRS 2019/20 ISSUE RATE (%) The Integrated School Health Programme > 60% screens learners for 30-60% these difficulties. < 30%
SPECTACLES Screening, assessment and treatment of these difficulties should be part of Primary Health Care services.
Routine collection of data related to disability and of disability related indicators.11 The review was, however, rehabilitation are crucial to informing disability-inclusive conducted in only five health facilities in one province in South health programming. The final three goals set by the Africa. Nonetheless, the review noted poor adherence to FSDR are amenable to tracking by means of routine and the District Health Management Information System (DHMIS) survey data. Measuring the degree of integration, the policy and the Health Facility DHMIS standard operating performance of the referral system, and inter-sectoral procedures with incomplete and incorrect data recording.12,13 collaboration is more difficult, especially with routine data. Poor systems and protocols to collect rehabilitation data Periodic surveys can address infrastructure issues and within health facilities were observed and some rehabilitation staff awareness, knowledge and attitudes. The Integrated facilities were not registered as facilities on DHIS, resulting in School Health Programme is expected to screen learners their data remaining uncaptured. The review recommended for vision, hearing speech and language and physical the implementation of a minimum data set that would (gross and fine motor) difficulties. Screening, assessment enable managers to monitor and evaluate rehabilitation and treatment for people with physical, emotional, speech, services. Further recommendations included the need for hearing, communication and visual difficulties should form standardisation of data collection tools, the implementation part of Primary Health Care services. The FSDR identified of data quality processes at all levels of the health system, the following as the core professional rehabilitation service registering all health facilities providing rehabilitation services providers: audiologists, medical orthotists and prosthetists, on the DHIS, and training all health facility staff responsible for occupational therapists, physiotherapists and speech- the collection and reporting of rehabilitation data. language therapists. Table 3 shows the routine DHIS reported values for the For many reasons, little progress has been made in disability indicators by province. Figure 3 shows how those institutionalising routine collection of disability and indicators have varied, nationally and per province, over the rehabilitation-related data through the DHIS. An assessment of last three financial years. The national cataract surgery rate the quality of rehabilitation data conducted in 2017, revealed per million uninsured population increased annually from 861 significant challenges to achieving accurate monitoring per million in 2017/18 to 1 022 per million in 2019/20. Free
202 South African Health Review 2020 State had the highest rate at 2 628 per million in 2019/20 as the number of spectacles issued as a percentage of the and Mpumalanga the lowest at 381 per million. The national number of applications received. The rate varied considerably school learner referred for hearing problem rate in 2019/20 between provinces, from 18.2% in Limpopo to 68.3% in the was highest in Limpopo (1.7%) and lowest in the Northern Western Cape in 2019/20. However, the rate cannot account Cape and Free State (0.1%). The national rate and rates in the for the number of people who might need correction for provinces remained relatively stable between 2017/18 and visual defects, but are not offered such a service. Figure 4 2019/20. The issue of demand versus service coverage is shows the difference between apparent need and service well illustrated with the spectacles issued rate. This is defined provision for the assistive devices tracked in DHIS.
Table 3: Disability indicators by province, routine data
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Cataract 2017/18 both sexes all ages DHIS 49 383 4 527 6 200 12 693 10 262 3 670 1 373 804 2 411 7 443 a surgery – total 2018/19 both sexes all ages DHIS 55 398 4 112 7 714 13 626 14 714 3 435 1 500 571 2 135 7 591 a
2019/20 both sexes all ages DHIS 58 808 2 971 7 592 12 454 19 781 3 483 1 730 776 2 440 7 581 a
Cataract 2017/18 both sexes DHIS 861 632 2 140 908 905 619 310 668 620 1 160 a surgery rate 2018/19 both sexes DHIS 959 565 2 654 957 1 289 575 336 470 545 1 157 a
2019/20 both sexes DHIS 1 022 405 2 628 879 1 754 587 381 631 606 1 133 a
School learner 2017/18 both sexes DHIS 36 434 3 505 1 320 9 287 3 472 4 856 1 134 241 3 036 9 583 a referred for eye care 2018/19 both sexes DHIS 32 063 1 978 1 223 9 344 3 841 2 958 1 300 414 2 728 8 277 a 2019/20 both sexes DHIS 34 423 2 424 1 311 10 098 3 461 3 191 983 324 2 503 10 128 a
School learner 2017/18 both sexes DHIS 3.6 2.1 2.7 4.1 1.8 3.5 3.0 3.3 3.3 9.7 a referred for eye care rate 2018/19 both sexes DHIS 3.5 1.7 2.4 4.1 1.9 2.5 2.1 3.6 3.5 20.6 a 2019/20 both sexes DHIS 3.6 2.1 2.4 4.8 1.5 3.0 1.8 3.2 3.1 11.4 a
School learner 2017/18 both sexes DHIS 9 548 1 393 94 2 077 1 100 3 385 290 28 707 474 a referred for hearing 2018/19 both sexes DHIS 8 131 1 620 61 1 889 1 153 2 192 281 43 564 328 a problem 2019/20 both sexes DHIS 7 787 1 255 62 1 202 1 533 1 779 665 13 760 518 a
School learner 2017/18 both sexes DHIS 0.9 0.8 0.2 0.9 0.6 2.4 0.8 0.4 0.8 0.5 a referred for hearing 2018/19 both sexes DHIS 0.9 1.4 0.1 0.8 0.6 1.8 0.5 0.4 0.7 0.8 a problem rate 2019/20 both sexes DHIS 0.8 1.1 0.1 0.6 0.7 1.7 1.2 0.1 1.0 0.6 a
School learner 2017/18 both sexes DHIS 2 502 229 93 292 212 748 54 42 175 657 a referred for speech 2018/19 both sexes DHIS 1 544 51 29 395 170 208 143 16 156 376 a problem 2019/20 both sexes DHIS 1 502 144 301 265 168 145 30 5 107 337 a
School learner 2017/18 both sexes DHIS 0.3 0.1 0.2 0.1 0.1 0.5 0.1 0.6 0.2 0.7 a referred for speech 2018/19 both sexes DHIS 0.2 0.0 0.1 0.2 0.1 0.2 0.2 0.1 0.2 0.9 a problems rate 2019/20 both sexes DHIS 0.2 0.1 0.5 0.1 0.1 0.1 0.1 0.1 0.1 0.4 a
School 2017/18 both sexes DHIS 1 011 390 167 273 49 727 225 019 193 413 139 629 37 265 7 376 93 149 98 539 a learners screened – 2018/19 both sexes DHIS 916 198 119 343 51 077 227 399 207 472 119 564 62 456 11 478 77 183 40 226 a sum 2019/20 both sexes DHIS 953 329 116 505 55 320 210 299 230 098 107 017 54 939 10 108 79 923 89 120 a
Hearing aid 2017/18 both sexes all ages DHIS 17 403 1 529 1 519 5 108 2 942 962 1 780 304 896 2 363 a issued – total 2018/19 both sexes all ages DHIS 16 889 1 934 709 4 821 3 553 878 1 229 268 857 2 640 a
2019/20 both sexes all ages DHIS 19 890 2 223 680 6 418 3 663 641 1 630 430 1 314 2 891 a
Health and Related Indicators 203 Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Hearing aid 2017/18 both sexes all ages DHIS 41 086 2 563 5 307 7 975 9 969 4 740 6 538 464 784 2 746 a required – total 2018/19 both sexes all ages DHIS 41 424 2 951 5 214 10 550 9 075 3 091 5 583 408 1 567 2 985 a 2019/20 both sexes all ages DHIS 30 943 3 754 730 7 988 6 827 2 884 3 301 432 1 715 3 312 a
Hearing aids 2017/18 both sexes all ages DHIS 42.4 59.7 28.6 64.1 29.5 20.3 27.2 65.5 114.3 86 a issued rate 2018/19 both sexes all ages DHIS 40.8 65.5 13.6 45.7 39.2 28.4 22.0 65.7 54.7 88 a
2019/20 both sexes all ages DHIS 64.3 59.2 93.2 80.3 53.7 22.2 49.4 99.5 76.6 87 a
Spectacles 2017/18 both sexes all ages DHIS 82 771 4 856 205 20 622 26 471 1 084 1 925 348 1 664 25 596 a issued – total 2018/19 both sexes all ages DHIS 88 815 6 395 2 160 22 732 24 309 1 953 3 370 927 2 275 24 694 a
2019/20 both sexes all ages DHIS 93 086 8 964 727 20 818 25 229 3 179 3 247 1 852 2 077 26 993 a
Spectacles 2017/18 both sexes all ages DHIS 147 439 11 490 6 792 27 261 43 648 16 648 3 688 497 2 117 35 298 a required – total 2018/19 both sexes all ages DHIS 158 427 11 131 2 963 34 139 44 264 22 021 4 766 1 350 2 979 34 814 a 2019/20 both sexes all ages DHIS 166 220 15 637 1 641 33 068 45 567 17 467 5 101 2 823 5 379 39 537 a
Spectacles 2017/18 both sexes all ages DHIS 56.1 42.3 3.0 75.6 60.6 6.5 52.2 70.0 78.6 72.5 a issued rate 2018/19 both sexes all ages DHIS 56.1 57.5 72.9 66.6 54.9 8.9 70.7 68.7 76.4 70.9 a
2019/20 both sexes all ages DHIS 56.0 57.3 44.3 63.0 55.4 18.2 63.7 65.6 38.6 68.3 a
Wheelchair 2017/18 both sexes all ages DHIS 23 545 2 232 1 030 4 103 3 880 3 104 1 852 761 1 047 5 536 a issued – total 2018/19 both sexes all ages DHIS 22 929 1 771 1 205 4 109 3 859 2 615 1 743 319 1 180 6 128 a
2019/20 both sexes all ages DHIS 23 611 1 792 1 271 4 643 4 155 2 614 1 720 241 1 183 5 992 a
Wheelchair 2017/18 both sexes all ages DHIS 39 448 6 321 2 965 4 228 6 679 4 991 5 977 1 644 950 5 693 a required – total 2018/19 both sexes all ages DHIS 39 645 9 605 1 973 4 756 6 265 3 985 4 270 718 1 700 6 373 a 2019/20 both sexes all ages DHIS 38 898 7 725 1 763 5 288 7 777 3 945 3 590 626 1 855 6 329 a
Wheelchairs 2017/18 both sexes all ages DHIS 59.7 35.3 34.7 97.0 58.1 62.2 31.0 46.3 110.2 97.2 a issued rate 2018/19 both sexes all ages DHIS 57.8 18.4 61.1 86.4 61.6 65.6 40.8 44.4 69.4 96.2 a
2019/20 both sexes all ages DHIS 60.7 23.2 72.1 87.8 53.4 66.3 47.9 38.5 63.8 94.7 a
Reference notes a DHIS
Definitions • Cataract surgery – total [Number]: Number of eyes on which • School learner referred for speech problem [Number]: A cataract surgery was performed. learner referred for Speech problems. • Cataract surgery rate [per 1 million]: Clients who had cataract • School learner referred for speech problems rate [Percentage]: surgery per 1 million uninsured population. Proportion of learners screened by a nurse in line with the • Hearing aid issued – total [Number]: All hearing aid issued to ISHP service package and referred for Speech problems. patients. • School learners screened – sum [Number]: Number of learners • Hearing aid required – total [Number]: All hearing aids screened by a nurse in line with the ISHP service package. required. • Spectacles issued – total [Number]: Number of spectacles • Hearing aids issued rate [Percentage]: Hearing aids issued as a issued to patients. proportion of the applications for hearing aids received. • Spectacles issued rate [Percentage]: Spectacles issued as a % • School learner referred for eye care [Number]: A learner of the applications received. referred for Eye Care. • Spectacles required – total [Number]: Number of new • School learner referred for eye care rate [Percentage]: spectacles (ordered) required for clients. Proportion of learners screened by a nurse in line with the • Wheelchair issued – total [Number]: All wheelchair issued to a ISHP service package and referred for Eye Care. client in need of a wheelchair. • School learner referred for hearing problem [Number]: A • Wheelchair required – total [Number]: All wheelchair requests learner referred for Hearing problems. received at the facility. • School learner referred for hearing problem rate [Percentage]: • Wheelchairs issued rate [Percentage]: Wheelchairs issued as a Proportion of learners screened by a nurse in line with the proportion of the applications for wheelchairs received. ISHP service package and referred for Hearing problems.
204 South African Health Review 2020 Figure 3: Disability-specific service usage trends by province, routine health services data, 2017/18 - 2019/20
SA EC FS GP KZ LP MP NC NW WC
2K Cataract surgery rate per1mil 1K
0K
2 School learner referred
for hearing problem % rate 1
0
100 Hearing aids issued % rate 50
0 1.0 School learner referred
for speech problems % 0.5 rate
0.0 20
School learner referred % for eye care rate 10
0 80 60
Spectacles issued rate % 40 20 0
100
Wheelchairs issued % rate 50
0 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20 2017/18 2018/19 2019/20
Source: DHIS
Health and Related Indicators 205 Figure 4: Disability assistive devices, numbers required and issued by province, 2017/18-2019/20
Indicator Period GEO Hearing aid required - total 2017/18 KZ GP EC 2018/19 KZ GP FS 2019/20 KZ GP GP Hearing aid issued - total 2017/18 KZ 2018/19 LP 2019/20 MP Spectacles required - total 2017/18 WC LP KZ GP FS EC NC 2018/19 WC LP KZ GP EC NW 2019/20 WC LP KZ GP EC WC Spectacles issued - total 2017/18 WC KZ GP 2018/19 WC KZ GP EC 2019/20 WC KZ GP EC Wheelchair required - total 2017/18 KZ EC 2018/19 KZ EC 2019/20 KZ EC Wheelchair issued - total 2017/18 2018/19 2019/20
0K 20K 40K 60K 80K 100K 120K 140K 160K Data Value Source: DHIS
Coverage does not meet service demands by persons with disabilities
SPECTACLE ISSUE RATE IS THE NUMBER OF SPECTACLES ISSUED AS A % OF THE NUMBER LIMPOPO % OF APPLICATIONS RECEIVED 18.2
THE RATE VARIED CONSIDERABLY BETWEEN PROVINCES IN 2019/20 The rate cannot account for the number of people who need visual correction, but are not ? offered such a service. % WESTERN ? 68.2 CAPE
206 South African Health Review 2020 Figure 5 shows how the number of public sector Lack of equipment may further limit the utility of public occupational therapists, optometrists, physiotherapists, and sector optometrists.14,15 Provinces such as the Western speech therapists and audiologists, has varied between Cape may provide access to optometry services through 2001 and 2020, expressed per 100 000 uninsured contracting arrangements, rather than by direct employment population. Table 4 shows the numbers of these health of optometrists in the public sector.a The provincial professional registered and employed in the public sector. differences for the four professional groups in 2020 are However, the true disparities in access are particularly shown in Figure 6 to Figure 9. An analysis of interprovincial evident in Table 5, which shows the ratios per 100 000 differences in the provision of three key cadres uninsured population per district in 2009, 2016 and (occupational therapists, speech therapists & audiologists 2020. Optometrists are notable for not being present at and physiotherapists) has highlighted what would need to all in many districts, sometimes in all 3 years depicted. be done to attain horizontal equity by 2030.16
Figure 5: Trends in disability-related HRH density by province
Indicator SA EC FS GP KZ LP MP NC NW WC
6 Occupational therapists 4 per 100 000 population 2
0
2 Optometrists per 100 000 1 population
0
6 Physiotherapists per 100 000 4 population
2
0
Speech 3 therapists and 2 audiologists per 100 000 1 population 0 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020 2001 2005 2008 2011 2014 2017 2020
Source: PERSAL, with DHIS 2000-2030 population time series and modelled estimates of medical schemes coverage to calculate uninsured population denominator, as described in DHB 2019/20.22
a https://www.westerncape.gov.za/service/eye-careprevention-blindness-programme
Health and Related Indicators 207 Table 4: Number of disability-related human resource cadres at national and provincial level, registered and working in the public sector
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Number of CS 2016 Mar both sexes public sector 301 42 18 81 49 28 28 20 20 15 a occupational therapists 2020 Mar both sexes public sector 289 36 25 74 65 13 26 22 14 14 a
Number of CS 2009 Mar both sexes public sector 15 14 1 a optometrists 2016 Mar both sexes public sector 1 1 a
Number of CS 2016 Mar both sexes public sector 345 41 18 92 64 24 34 24 21 27 a physiotherapists 2020 Mar both sexes public sector 352 35 29 94 73 8 36 24 29 24 a
Number of CS speech 2016 Mar both sexes public sector 218 15 7 57 62 15 19 17 15 11 a therapists 2020 Mar both sexes public sector 247 18 8 61 70 12 40 10 20 8 a
Number of 2010 Mar public sector 838 80 71 171 119 113 55 40 38 151 a occupational therapists 2016 Mar both sexes public sector 972 90 54 197 170 188 75 35 34 129 a 2020 Mar both sexes public sector 1 003 117 50 205 126 207 68 32 48 150 a
Number of 2010 both sexes HPCSA 3 508 141 232 1 085 347 86 221 49 49 829 b occupational therapists registered 2016 both sexes HPCSA 4 792 226 313 1 679 569 220 239 95 142 1 278 b female HPCSA 4 547 217 308 1 603 543 168 214 93 125 1 256 b
male HPCSA 245 9 5 76 26 52 25 2 17 32 b
Number of 2009 Mar both sexes public sector 91 1 7 10 14 55 4 0 a optometrists and opticians 2016 Mar both sexes public sector 269 7 6 43 71 126 7 2 5 2 a 2020 Mar both sexes public sector 255 8 5 55 60 111 7 2 5 2 a
Number of 2010 Mar public sector 1 009 110 75 199 231 115 60 56 34 129 a physiotherapists 2016 Mar both sexes public sector 1 020 107 43 173 265 167 57 36 44 128 a
2020 Mar both sexes public sector 1 110 147 48 194 244 158 76 31 71 141 a
Number of 2010 both sexes HPCSA 5 777 240 267 1 831 732 137 311 72 85 1 355 b physiotherapists registered 2016 both sexes HPCSA 7 183 381 385 2 512 1 018 285 293 119 204 1 879 b female HPCSA 5 972 318 321 2 151 823 182 227 102 144 1 604 b
male HPCSA 1 211 63 64 361 195 103 66 17 60 275 b
Number of speech 2009 Mar both sexes public sector 324 26 16 82 83 31 29 18 6 33 a therapists and audiologists 2016 Mar both sexes public sector 494 37 7 123 116 79 45 16 13 58 a 2020 Mar both sexes public sector 502 47 9 131 92 69 39 15 27 73 a
Reference notes a PERSAL, with DHIS 2000-2030 population time series and modelled estimates of medical schemes coverage to calculate uninsured population denominator, as described in DHB 2019/20.22 b HPCSA23
208 South African Health Review 2020 Table 5: Disability-related human resource cadres per 100 000 uninsured population at national, provincial and district level, 2009, 2016 and 2020
Occupational Speech therapists Optometrists per Physiotherapists per therapists per 100 000 and audiologists per 100 000 population 100 000 population population 100 000 population
2009 2016 2020 2009 2016 2020 2009 2016 2020 2009 2016 2020 Geo Level Geo area Mar Mar Mar Mar Mar Mar Mar Mar Mar Mar Mar Mar
Country ZA: South Africa 1.90 2.70 2.60 0.25 0.56 0.50 2.20 2.90 2.90 0.82 1.50 1.50
Province EC: Eastern Cape 1.40 2.20 2.50 0.02 0.12 0.13 1.70 2.50 3.00 0.44 0.87 1.10
FS: Free State 2.60 2.90 3.00 0.29 0.24 0.20 3.10 2.50 3.10 0.67 0.57 0.68
GP: Gauteng 1.70 2.60 2.40 0.11 0.41 0.47 1.90 2.50 2.40 0.92 1.70 1.60
KZ: KwaZulu-Natal 1.40 2.30 1.90 0.16 0.73 0.59 2.60 3.40 3.10 0.92 1.80 1.60
LP: Limpopo 2.00 4.00 3.90 1.40 2.30 2.00 2.00 3.50 3.00 0.87 1.70 1.40
MP: Mpumalanga 2.10 2.70 2.30 0.15 0.18 0.17 1.70 2.40 2.70 1.20 1.70 1.90
NC: Northern Cape 2.90 5.30 5.00 0.00 0.19 0.18 5.20 5.80 5.00 1.90 3.20 2.30
NW: North West 1.10 1.60 1.70 0.15 0.14 1.20 1.90 2.80 0.33 0.83 1.30
WC: Western Cape 3.30 2.80 2.90 0.04 0.04 2.70 3.00 3.00 0.73 1.30 1.40
District BUF: Buffalo City MM 1.80 2.90 3.40 0.00 0.16 0.32 2.00 4.50 4.70 0.99 1.80 2.60
CPT: Cape Town MM 4.20 3.40 3.60 0.06 0.06 3.20 3.50 3.50 0.99 1.50 1.60
DC1: West Coast DM 1.60 1.70 1.60 1.30 2.00 2.10 0.00 0.84 1.30
DC2: Cape Winelands DM 1.40 1.90 1.60 1.70 2.00 2.00 0.63 0.95 1.10
DC3: Overberg DM 1.50 0.86 1.20 1.50 1.30 1.20 0.50 0.86 1.20
DC4: Garden Route DM 2.20 1.40 1.90 2.20 2.60 2.30 0.00 0.40 0.39
DC5: Central Karoo DM 4.80 1.50 3.10 0.00 1.50 3.10 0.00 3.10 3.10
DC6: Namakwa DM 5.30 6.40 8.50 0.00 12.70 7.50 9.60 0.00 4.30 2.10
DC7: Pixley Ka Seme DM 1.90 3.50 2.80 0.00 0.00 4.40 4.70 2.80 0.63 2.30 0.56
DC8: ZF Mgcawu DM 2.00 4.10 4.70 0.00 0.46 0.43 3.60 5.90 4.30 1.00 1.80 2.60
DC9: Frances Baard DM 4.10 9.80 8.00 0.00 0.30 0.29 6.10 8.40 7.70 4.10 5.10 4.00
DC10: Sarah Baartman DM 3.50 4.90 4.30 0.00 0.23 0.23 2.30 5.40 3.90 1.00 1.60 0.91
DC12: Amathole DM 0.48 1.30 2.20 0.12 1.40 1.30 2.80 0.00 0.13 0.79
DC13: C Hani DM 0.90 1.70 2.70 0.00 0.14 1.00 2.60 2.90 0.26 0.55 1.10
DC14: Joe Gqabi DM 0.30 2.10 2.80 0.00 0.90 0.92 2.20 0.00 0.61 0.61
DC15: OR Tambo DM 1.10 1.20 1.80 0.00 0.22 0.21 1.20 1.30 2.20 0.38 0.79 1.00
DC16: Xhariep DM 3.60 4.40 3.50 0.00 0.88 1.80 0.00
DC18: Lejweleputswa DM 0.36 1.20 1.10 0.18 1.30 0.89 0.71 0.36 0.00 0.18
DC19: T Mofutsanyana DM 0.89 1.00 1.00 0.00 0.15 0.14 1.20 1.80 1.50 0.30 0.15
DC20: Fezile Dabi DM 0.94 1.10 0.91 0.24 0.00 0.94 0.23 0.91 0.47 0.00 0.23
DC21: Ugu DM 1.50 2.20 1.70 0.00 0.84 0.53 1.80 3.10 2.60 1.40 3.10 2.60
DC22: uMgungundlovu DM 2.60 5.70 4.20 0.00 0.73 0.49 4.20 4.60 4.10 1.50 2.30 2.30
DC23: uThukela DM 0.95 1.50 1.50 0.16 0.92 0.76 0.95 3.40 2.90 0.95 2.30 2.10
DC24: uMzinyathi DM 1.30 1.60 1.30 0.21 0.78 0.94 1.50 1.40 2.30 0.63 2.40 1.50
Health and Related Indicators 209 Occupational Speech therapists Optometrists per Physiotherapists per therapists per 100 000 and audiologists per 100 000 population 100 000 population population 100 000 population
2009 2016 2020 2009 2016 2020 2009 2016 2020 2009 2016 2020 Geo Level Geo area Mar Mar Mar Mar Mar Mar Mar Mar Mar Mar Mar Mar
District DC25: Amajuba DM 1.30 2.20 2.50 0.44 1.60 1.30 1.50 4.20 3.60 0.44 2.20 0.95
DC26: Zululand DM 0.26 0.63 0.73 0.00 0.38 0.37 2.00 2.00 2.10 0.26 1.30 1.20
DC27: uMkhanyakude DM 1.40 3.50 3.10 0.17 1.80 1.20 2.70 3.70 3.10 1.20 2.60 1.90
DC28: King Cetshwayo DM 0.73 1.00 1.40 0.24 1.00 0.79 1.60 1.90 1.90 0.73 1.40 1.80
DC29: iLembe DM 1.10 1.70 1.40 0.55 1.00 0.80 1.80 4.00 2.90 1.30 1.90 0.96
DC30: G Sibande DM 2.30 2.60 2.40 0.00 1.70 2.50 2.60 0.80 1.80 1.50
DC31: Nkangala DM 1.50 1.70 1.70 0.24 0.22 1.50 1.90 2.20 1.10 1.20 1.80
DC32: Ehlanzeni DM 2.50 3.50 2.70 0.14 0.25 0.24 1.80 2.70 3.30 1.60 2.00 2.30
DC33: Mopani DM 1.30 2.60 3.30 1.10 1.80 1.60 1.50 2.80 2.20 0.88 1.50 1.30
DC34: Vhembe DM 1.60 3.50 4.00 1.20 1.80 1.60 1.70 2.80 2.80 0.74 1.80 1.30
DC35: Capricorn DM 2.30 5.80 5.40 1.10 2.80 2.30 2.80 5.10 4.00 0.60 2.20 1.60
DC36: Waterberg DM 3.10 5.10 4.40 2.40 3.70 2.90 2.60 4.50 3.70 1.60 2.10 2.00
DC37: Bojanala Platinum DM 0.88 1.30 1.10 0.07 0.06 0.88 1.40 1.70 0.32 0.80 0.96
DC38: NM Molema DM 1.10 1.10 1.30 0.25 0.24 0.67 1.90 3.20 0.13 0.13 0.49
DC39: RS Mompati DM 0.71 0.70 1.80 0.23 0.23 0.71 2.10 4.10 0.47 0.23 1.80
DC40: Dr K Kaunda DM 2.00 3.50 3.60 0.15 0.14 2.90 2.90 3.90 0.51 2.10 2.70
DC42: Sedibeng DM 1.40 2.10 1.80 0.14 0.40 0.66 1.10 1.50 1.40 0.55 1.10 1.60
DC43: Harry Gwala DM 2.30 1.70 2.10 0.00 0.65 0.42 2.00 1.90 2.90 0.00 0.43 0.21
DC44: A Nzo DM 0.26 0.38 0.75 0.00 0.00 0.25 1.00 0.64 1.80 0.26 0.13 0.25
DC45: JT Gaetsewe DM 1.10 0.46 0.86 2.60 1.90 1.70 0.53 1.90 0.86
DC47: Sekhukhune DM 2.30 3.30 2.50 1.50 2.10 2.00 1.70 2.80 2.40 0.88 1.40 1.20
DC48: West Rand DM 3.00 3.40 2.90 0.16 1.00 1.10 1.60 2.50 2.60 0.66 1.20 0.83
EKU: City of Ekurhuleni MM 0.99 2.00 1.80 0.13 0.43 0.49 1.10 1.90 2.00 0.56 1.40 1.40
ETH: eThekwini MM 1.60 2.20 1.50 0.14 0.26 0.28 3.80 4.10 3.70 1.00 1.50 1.50
JHB: Johannesburg MM 1.00 2.10 1.90 0.03 0.24 0.32 1.50 2.40 2.20 0.73 1.80 1.70
MAN: Mangaung MM 4.40 4.20 3.60 0.81 0.75 0.57 4.90 3.60 4.00 0.97 0.90 1.00
NMA: N Mandela Bay MM 3.20 4.70 3.70 0.11 3.30 4.40 4.40 0.78 1.60 1.20
TSH: Tshwane MM 3.00 4.00 3.70 0.21 0.51 0.46 4.00 3.50 3.60 1.90 2.00 1.90
Scale 0 13
Reference notes a PERSAL, with DHIS 2000-2030 population time series and modelled estimates of medical schemes coverage to calculate uninsured population denominator, as described in DHB 2019/20.22
210 South African Health Review 2020 Figure 6: Occupational therapists per 100 000 population by province, 2020 Mar
NC 5.0 Provinces EC LP 3.9 FS FS 3.0 GP WC 2.9 KZ EC 2.5 LP GP 2.4 MP MP 2.3 NC SA: 2.6 KZ 1.9 NW NW 1.7 WC
0 2 4 6 8 per 100 000 population [Source: PERSAL] Strat: both sexes | public sector
Source: PERSAL, with DHIS 2000-2030 population time series and modelled estimates of medical schemes coverage to calculate uninsured population denominator, as described in DHB 2019/20.22
Figure 7: Optometrists per 100 000 population by province, 2020 Mar
LP 2.0 Provinces EC KZ 0.6 FS GP 0.5 GP FS 0.2 KZ NC 0.2 LP MP 0.2 MP NW 0.1 NC SA: 0.5 EC 0.1 NW WC 0.0 WC
0 0.5 1.0 1.5 2.0 2.5 3.0 per 100 000 [Source: PERSAL] Strat: both sexes | public sector
Source: PERSAL, with DHIS 2000-2030 population time series and modelled estimates of medical schemes coverage to calculate uninsured population denominator, as described in DHB 2019/20.22
Figure 8: Physiotherapists per 100 000 population by province, 2020 Mar
NC 5.0 Provinces EC KZ 3.1 FS FS 3.1 GP EC 3.0 KZ LP 3.0 LP WC 3.0 MP NW 2.8 NC SA: 2.9 MP 2.7 NW GP 2.4 WC
0 2 4 6 8 per 100 000 population [Source: PERSAL] Strat: both sexes | public sector Source: PERSAL, with DHIS 2000-2030 population time series and modelled estimates of medical schemes coverage to calculate uninsured population denominator, as described in DHB 2019/20.22
Health and Related Indicators 211 Figure 9: Speech therapists and audiologists per 100 000 population by province, 2020 Mar
NC 2.3 Provinces EC MP 1.9 FS GP 1.6 GP KZ 1.6 KZ WC 1.4 LP LP 1.4 MP NW 1.3 NC SA: 1.5 EC 1.1 NW FS 0.7 WC
0 1 2 3 4 per 100 000 population [Source: PERSAL] Strat: both sexes | public sector
Source: PERSAL, with DHIS 2000-2030 population time series and modelled estimates of medical schemes coverage to calculate uninsured population denominator, as described in DHB 2019/20.22
Human resources for disability-related health have increased
IN THE PUBLIC HEALTH SECTOR, THE FOLLOWING HUMAN RESOURCES FOR DISABILITY HAVE INCREASED SINCE 2009… PHYSIOTHERAPIST 20 HRH 20
OCCUPATIONAL THERAPIST HRH 2009
OPTOMETRIST ...Although there has been little change in recent years.
Optometrists are not present at all in SPEECH THERAPIST/ public sector facilities in many districts. AUDIOLOGIST This may be due to different contracting mechanisms for this cadre of HR.
212 South African Health Review 2020 A different measure of access to support for persons with disabilities can be gleaned from the annual report of the Table 6: Trends in number of disability social South African Social Security Agency (SASSA). The most grants, 2006/07 to 2018/19 recent annual report, for 2018/19, provides historical data on the number of persons who have accessed a disability Financial year Number of disability social grants Annual change (%) grant.17 A disability grant can only be accessed by South African citizens, permanent residents or refugees, who 2006/07 1 422 808 are actually resident in the country, are between 18 and 2007/08 1 408 456 -1.0 59 years of age, and who are able to provide a medical or 2008/09 1 286 883 -8.6 assessment report confirming that they have a permanent, severe disability. This requirement is not simply mapped 2009/10 1 264 477 -1.7 to the restrictive definition (severe) of disability, as per the 2010/11 1 200 898 -5.0 Washington Group questions, which suggests approximately 2.3 million people five years and older with severe disability 2011/12 1 198 131 -0.2 b in 2018/19. Comparing the number of disability grant 2012/13 1 164 192 -2.8 recipients to the prevalence reported in the 2016 Community Survey is therefore not simple. Between 2006/07 and 2013/14 1 120 419 -3.8 2018/19, the number of disability grant recipients has 2014/15 1 112 663 -0.7 declined steadily from 1 422 808 to 1 048 255. Table 6 2015/16 1 085 541 -2.4 shows the number of grants made from 2006/07 to 2018/19, with the percentage change, year-on-year. Although the 2016/17 1 067 176 -1.7 decline in the number of disability grants was noted in the 2017/18 1 061 866 -0.5 Annual Report, no reasons were provided for this trend. In 2018/19, marked disparities in the number of disability 2018/19 1 048 255 -1.3 grants per province were also evident, which did not match Overall change -26.3 overall population distributions (Table 7). The highest number of disability grants were made in KwaZulu-Natal (21.8% of Source: SASSA 2018/1917 the total number). The most populous province, Gauteng, accounted for 11.1% of disability grants. In 2018/19, the amount disbursed for disability grants (R22.02 billion) represented Table 7: Number of disability social grants by 13.5% of the total SASSA disbursements (R162.71 billion). province, 2018/19
An international stakeholder group has highlighted the impact of the COVID-19 pandemic on people with Number of disability social grants 18 disabilities. Both the lockdown and re-opening phases EC 182 393 have posed additional barriers, including to information, employment opportunities and access to support. The FS 74 047 group noted a “lack of disability inclusion in COVID-19 GP 116 710 response efforts at all governmental levels”. The South KZ 228 743 African Presidential Working Group on Disability met virtually on the International Day of Persons with Disabilities (IDPD, LP 96 729 held every year on 3 December), and emphasised that, MP 78 308 in achieving the recovery of the economy and society in the wake of COVID-19, it is essential that “all South Africans NC 48 572 19 are included and that all benefit”. Government reiterated its NW 67 149 commitment to the White Paper on the Rights of Persons with WC 155 604 Disabilities, and also to meeting South Africa’s international obligations in terms of the UNCRPD. The express priority is SA 1 048 255 “to mainstream the rights of persons with disabilities across government planning, and to ensure all departments are held Source: SASSA 2018/1917 to strict targets when it comes to inclusion and empowerment”.
b Authors’ calculations using CS 2016 prevalence of severe disability and NDoH-DHIS population estimates 5 years and older in 2018/19.
Health and Related Indicators 213 estimates were modelled from previously available survey Universal Health Coverage data in order to refine the methods used as well as Service Coverage Index forecast data beyond the last survey measurements. This process enabled the UHC SCI to be updated across all 15 of the component indicators for 2017, 2018 and 2019. One of the key health-related Sustainable Development Table 8 shows the index values for each indicator, for the Goals (SDG 3.8) is the delivery of universal health coverage four categories, and for the resultant UHC SCI at a national (UHC). Monitoring of progress towards the attainment of level, for 2017, 2018 and 2019. Table 9 shows the most SDG 3.8 relies on two indicators. Indicator 3.8.1 measures recent (2019) values, disaggregated by province. Figure coverage of essential health services, focused on tracer 10 shows how the index values varied between 2017 and elements of reproductive, maternal, newborn and child 2019, per province and per district. While improvement health (RMNCH), infectious diseases, non-communicable and a narrowing of differences between provinces and diseases (NCDs), and service capacity and access. districts is evident for some categories (such as the Indicator 3.8.2 tracks the proportion of the population with RMNCH coverage index), wider dispersion is evident for large household expenditure on health as a share of total others (such as the capacity coverage index). Figure 11 household expenditure or income. depicts the variation at district level, for 2017 and 2019, disaggregated by socio-economic quintile of each district. Indicator 3.8.1 is the basis for the UHC service coverage A consistent trend is evident, with more deprived districts 24 index (SCI) developed by Hogan et al. The UHC SCI fairing worse across the categories, with the exception of combines 16 tracer measures to deliver a single numerical the NCD coverage index. With some outliers, this trend is value depicting the extent of coverage of essential health also evident for the UHC SCI in both 2017 and 2019. and health-related services. Where possible, these tracers are measures of effective service coverage, defined as More extensive data at provincial and district levels have the proportion of people in need of services who receive been reported in the most recent District Health Barometer.27 services of sufficient quality to obtain potential health gains. Detailed spreadsheets and data visualisations for each of the The 2019 editions of the Review and the District Health indicators are available online at the HST web site. Barometer described the adaptation of the UHC SCI to the 25,26 South African context. The South African UHC SCI is There is intense interest at a global level in measures based on only 15 indicators, as the malaria service coverage of UHC effective coverage. An alternative measure has indicator (UHC7) is excluded. UHC7 is based on the recently been reported, which combined 23 effective provision of insecticide-impregnated bed-nets, which are not coverage indicators, weighted by their potential health part of the South African malaria programme. The geometric gains.28 Based on this measure, a value of 60 was reported mean of the indicators is calculated for each of the four for South Africa in 2019. Replicating this measure, using categories (RMNCH, infectious diseases, NCDs, service existing routine data sources, and disaggregating to district capacity and access). The final UHC SCI is the geometric level, would be challenging since a substantial part of the mean of the values for each category score. Each indicator information needed is not available sub-nationally and and the resulting index is presented on a scale of 0-100, with disaggregated by age group. Completeness and reliability of 100 being the optimal value. burden of disease data at sub-national level is an additional hurdle. Relying on the South African UHC SCI reported Building on the formative work done in 2019, the database here, based on that proposed by Hogan et al., will allow for of indicators used to generate the South African UHC progress to be monitored over time, at national, provincial SCI was updated from multiple sources, primarily routine and district levels. health facility data from DHIS. Although no major surveys were updated in the time period, new time series
214 South African Health Review 2020 Table 8: UHC service coverage index, South Africa, 2017-2019
UHC Year UHC Index Tracer_type Indicator Category 2017 2018 2019
RMNCH UHC1 proxy Couple year protection rate (index) 59.2 61.0 54.5
UHC2 eff_coverage Antenatal 1st visit coverage before 20 weeks (index) 51.4 55.0 57.9
UHC3 coverage Immunisation under 1 year coverage (index) 76.9 81.9 83.5
UHC4 proxy Pneumonia case survival under 5 years rate 97.8 97.8 97.7
Infectious UHC5 eff_coverage Tuberculosis effective treatment coverage 55.6 57.2 60.2
UHC6 eff_coverage Antiretroviral effective coverage 31.9 40.6 42.5
UHC8 coverage Percentage of households with access to improved sanitation (index) 74.7 75.7 76.7
NCDs UHC9 proxy Age-standardised prevalence of non-raised blood pressure (index) 79.8 80.5 81.3
UHC10 coverage Diabetes treatment coverage 38.9 38.4 37.9
UHC11 coverage Cervical cancer screening coverage (index) 42.4 45.8 46.8
UHC12 proxy Tobacco non-smoking prevalence (index) 81.5 81.5 81.5
Capacity UHC13 proxy Hospital beds per 10 000 target population (rescaled) 100.0 97.2 96.3
UHC14 proxy Health worker density (rescaled) 14.7 14.8 15.2
UHC15 proxy Proportion of health facilities with essential medicines 74.6 62.6 66.0
UHC16 proxy Environmental health services compliance rate 63.0 62.3 62.3
Index UHC17_1 index UHC: RMNCH coverage index 69.2 72.0 71.2
UHC17_2 index UHC: Infectious coverage index 49.0 53.8 55.8
UHC17_3 index UHC: NCDs coverage index 57.2 58.3 58.6
UHC17_4 index UHC: Capacity coverage index 51.3 48.6 49.5
UHC17 index Universal health coverage: service coverage index 56.2 57.6 58.3
Scale 0 100
Reference notes UHC1: DHIS UHC10: NiDS modelled, 15+ years, both sexes UHC2: DHIS (calculated) UHC11: DHIS UHC3: DHIS UHC12: NiDS modelled, 15+ years, both sexes UHC4: Derived from DHIS, smoothed UHC13: DHIS 2000-2030, public sector UHC5: ETR/Tier.Net UHC14: PERSAL, public sector, both sexes UHC6: DHIS-Tier, all ages UHC15: DHIS (calculated) UHC8: Stats SA surveys, modelled UHC16: NDoH UHC9: NiDS modelled, 15+ years, both sexes
Health and Related Indicators 215 Definitions • Couple year protection rate (index): Values capped at 100. self-reported data, and treatment coverage was calculated Values of zero or missing set to 1. Women protected against as the ratio between the population proportion of treated pregnancy by using modern contraceptive methods, including cases and diabetes prevalence. A smooth variation over time sterilisations, as proportion of female population 15-49 year. was assumed for both prevalence of diabetes and treatment Couple year protection is the total of (Oral pill cycles / 15) + coverage within each district, and final yearly estimates were (Medroxyprogesterone injection / 4) + (Norethisterone generated by fitting a series of generalised linear models. enanthate injection / 6) + (IUCD x 4.5) + ) + (Sub dermal • Cervical cancer screening coverage (index): Cervical smears implant x 2.5) + Male condoms distributed / 120) + (Female in women 30 years and older as a proportion of the female condoms distributed / 120) + (Male sterilisation x 10) + (Female population 30 years and older. 80% of these women should sterilisation x 10). be screened for cervical cancer every 10 years and 20% • Antenatal 1st visit coverage before 20 weeks (index): must be screened every 3 years which should be included Calculated as the product of 2 DHIS indicators 'ANC 1st visit in the denominator because it is estimated that 20% of coverage' and 'ANC 1st visit before 20 weeks rate' to estimate women 30 years and older are HIV positive. Any implausible the proportion of pregnant women who attend ANC clinics values (>100) capped at 100, missing values set to 1. before 20 weeks gestation. • Tobacco non-smoking prevalence (index): Percentage of • Immunisation under 1 year coverage (index): The proportion adults 15+ years who are non-smokers, or who have not of all children in the target area under one year who complete smoked tobacco in the previous 30 days. Calculated as (100 - their primary course of immunisation. Any implausible values smoking prevalence). A linear model with the logit-transformed (>100) capped at 100, missing or zero values set to 1. estimates from the individual surveys as outcome and year of • Pneumonia case survival under 5 years rate: After removing data collection as predictor was then fitted to obtain a smooth major outlier values, a smoothed estimate of the pneumonia time series for the index and to project the values beyond the case fatality rate (CFR) under 5-years from DHIS was computed last available data point (2017). over the entire time series available, using a generalised • Hospital beds per 10 000 target population (rescaled): Number additive model with thin-plate splines. The reciprocal of the of inpatient beds per 10 000 target population. For public smoothed CFR (the case survival rate) was then rescaled to sector beds, the uninsured population is used as the target. range from 0 to 100: Index = (maximum CFR – CFR)/(100 - Rescaled as x/18*100, >18 per 10 000=100. minimum CFR)*100. • Health worker density (rescaled): An indicator based on SDG • Tuberculosis effective treatment coverage: The percentage of indicator 3.c.1 with a modified scaling approach as described by incident TB cases that are detected and successfully treated Lozano et al. 2018. Medical practitioners, professional nurses in a year. Combination of the case notification rate and the and pharmacists per uninsured population were rescaled from successful treatment rate. Currently calculated using drug- 0-100 against thresholds of 30, 100 and 5 per 10 000. The sensitive TB outcomes. DR TB should ideally also be included index was calculated as the geometric mean of the 3 scaled in the calculation. scores. • Antiretroviral effective coverage: Proportion of HIV-positive • Proportion of health facilities with essential medicines: people on ART and virally suppressed. Any implausible values Proportion of health facilities with availability of the WHO- (>100) capped at 100, zero or missing values set to 1. recommended core list of essential medicines. Calculated as • Percentage of households with access to improved sanitation (100 - tracer items stock-out rate) after implausible values (>100) (index): Percentage of households using improved sanitation capped at 100, zero or missing values set to 1. facilities (including flush to piped sewer system, flush to septic • Environmental health services compliance rate: The tank, flush/pour flush to pit, flush/pour flush to elsewhere). compliance of a municipality with National Environmental Modelled (smoothed) to get a time series and projection from health norms and standards in rendering Environmental Health Census, Community Survey and General Household Survey. Services. The compliance is determined by assessing the A linear model with the logit-transformed estimates from the municipality against elements in the audit tool and providing a individual surveys as outcome and year of data collection as subsequent score. predictor was fitted to obtain a smooth time series for the index • UHC: RMNCH coverage index: Geometric mean of the and to project the values beyond the last available data point component indicators of this category of the Universal Health (2016). Coverage index. • Age-standardised prevalence of non-raised blood pressure • UHC: Infectious coverage index: Geometric mean of the (index): Percentage of population 15 years and older with component indicators of this category of the Universal Health non-raised blood pressure, regardless of treatment status, age- Coverage index. standardised (Census 2011 population). • UHC: NCDs coverage index: Geometric mean of the • Diabetes treatment coverage: Percentage of people with component indicators of this category of the Universal Health diabetes receiving treatment. Coverage index. Estimates were generated using a machine learning model • UHC: Capacity coverage index: Geometric mean of the that was trained with SADHS 2016 data to predict individual component indicators of this category of the Universal Health probability of being diabetic using demographic data (age, Coverage index. gender, race), bio-behavioural characteristics (body mass • Universal health coverage: service coverage index: Coverage index, waist circumference, current smoking), self-reported of essential health services (defined as the average coverage previous diagnosis, and use of medication. The model was of essential services based on tracer interventions that include then applied to data from each NiDS ‘wave’ to estimate the reproductive, maternal, newborn and child health, infectious prevalence at sub-national level by averaging the predicted diseases, noncommunicable diseases and service capacity probabilities of being diabetic for the individuals in each district and access, among the general and the most disadvantaged and adjusting for the imperfect sensitivity and specificity of population). the predictive model. The sampling design of the survey was Calculated as the geometric mean of the index score for each taken into account in the procedure. The proportion of patients of the 4 categories of the index. with diabetes receiving treatment was directly estimated from
216 South African Health Review 2020 Table 9: UHC service coverage index, by province, 2019
2019
Nat. Province
UHC UHC Indicator SA EC FS GP KZ LP MP NC NW WC Category Index
RMNCH UHC1 Couple year protection rate (index) 54.5 55.2 78.9 43.7 56.5 55.3 48.2 56.6 62.4 64.5
UHC2 Antenatal 1st visit coverage before 20 weeks 57.9 42.9 52.8 60.0 55.9 62.6 71.7 65.0 55.1 65.5 (index)
UHC3 Immunisation under 1 year coverage (index) 83.5 76.0 77.4 86.9 91.4 73.6 96.6 89.0 63.0 84.9
UHC4 Pneumonia case survival under 5 years rate 97.7 96.7 97.8 97.4 97.9 96.3 97.7 98.1 98.4 99.7
Infectious UHC5 Tuberculosis effective treatment coverage 60.2 59.5 59.4 62.3 60.8 60.7 61.6 58.1 58.9 58.6
UHC6 Antiretroviral effective coverage 42.5 37.2 45.4 40.4 47.8 52.2 48.4 26.2 37.1 24.0
UHC8 Percentage of households with access to 76.7 79.0 83.5 90.2 66.7 52.8 61.6 80.2 66.9 93.9 improved sanitation (index)
NCDs UHC9 Age-standardised prevalence of non-raised blood 81.3 79.6 78.6 82.7 79.8 84.2 86.0 76.1 82.4 77.9 pressure (index)
UHC10 Diabetes treatment coverage 37.9 31.7 36.5 45.6 31.9 36.4 48.4 35.1 39.8 31.6
UHC11 Cervical cancer screening coverage (index) 46.8 50.0 46.0 42.2 55.9 33.3 57.9 32.0 55.9 41.8
UHC12 Tobacco non-smoking prevalence (index) 81.5 81.8 79.6 79.8 87.8 88.8 84.4 69.5 80.7 70.0
Capacity UHC13 Hospital beds per 10 000 target population 96.3 100.0 100.0 85.8 100.0 78.3 65.4 91.7 72.7 100.0 (rescaled)
UHC14 Health worker density (rescaled) 15.2 18.0 13.4 14.1 15.5 14.4 12.4 18.5 12.5 16.5
UHC15 Proportion of health facilities with essential 66.0 77.9 40.7 81.7 72.8 33.4 56.7 70.0 55.5 93.6 medicines
UHC16 Environmental health services compliance rate 62.3 66.9 59.4 68.8 56.4 64.2 58.0 75.2 40.5 68.3
Index UHC17_1 UHC: RMNCH coverage index 71.2 64.6 74.9 68.6 72.9 70.4 75.6 75.3 67.9 77.3
UHC17_2 UHC: Infectious coverage index 55.8 53.7 58.4 58.6 55.6 52.9 54.6 47.7 50.6 49.0
UHC17_3 UHC: NCDs coverage index 58.6 56.7 56.9 59.7 59.4 54.9 67.1 49.4 62.0 51.8
UHC17_4 UHC: Capacity coverage index 49.5 55.4 42.4 51.1 50.2 39.4 40.4 54.7 37.8 57.0
UHC17 Universal health coverage: service coverage index 58.3 57.5 57.0 59.2 59.0 53.3 57.8 55.8 53.3 57.8
Scale 0 100
Reference notes and definitions as for Table 8.
Health and Related Indicators 217 Figure 10: UHC SCI range by geographic level, 2017 and 2019
Indicator Country Province District
UHC: RMNCH coverage index
UHC: Infectious coverage index
UHC: NCDs coverage index 2017
UHC: Capacity coverage index Universal health coverage: service coverage index
UHC: RMNCH coverage index
UHC: Infectious coverage index
UHC: NCDs coverage index 2019
UHC: Capacity coverage index Universal health coverage: service coverage index
0 20 40 60 80 0 20 40 60 80 0 20 40 60 80 Scale (0-100) Scale (0-100) Scale (0-100)
Geo Level Geo Level Scale (0-100) Country Country 0 100 Province Province District District
Figure 11: UHC SCI district range by socio-economic quintile, 2017 and 2019
Indicator Socio-economic quint.. 2017 2019 UHC: RMNCH coverage index SEQ1 (most deprived) SEQ2 SEQ3 SEQ4 SEQ5 (least deprived) UHC: Infectious coverage SEQ1 (most deprived) index SEQ2 SEQ3 SEQ4 SEQ5 (least deprived) UHC: NCDs coverage index SEQ1 (most deprived) SEQ2 SEQ3 SEQ4 SEQ5 (least deprived) UHC: Capacity coverage index SEQ1 (most deprived) SEQ2 SEQ3 SEQ4 SEQ5 (least deprived) Universal health coverage: SEQ1 (most deprived) service coverage index SEQ2 SEQ3 SEQ4 SEQ5 (least deprived)
0 20 40 60 80 0 20 40 60 80 Geo Level Scale (0-100) District 0 100
218 South African Health Review 2020 Universal Health Coverage indicators are variable in South Africa
SOME OF THIS IS DUE TO THE LIMITATIONS OF THE INDICATOR CONSTRUCTION, THRESHOLDS OR DATA AVAILABILITY
100 In 2019, variability was particularly high among Capacity indicators in 80 South Africa
60 UHC INDEX
40 PERCENTAGE COVID-19 ALERT!
20 There is an urgent need in future to watch for COVID 0 disruptions and how those can be seen in Capacity Infectious diseases NCDS RMNCH routine data. UHC INDICATORS
population that is covered by a medical scheme varies from Demographic indicators a low of 7.2% in Limpopo to a high of 24.6% in Gauteng. At a district level, that proportion is estimated to vary from 3.8% The mid-year population estimate is a key denominator (Alfred Nzo district, Eastern Cape) to 30.6% (Tshwane metro, relied upon for the calculation of a number of indicators. For Gauteng). Not taking this wide variation into account could the 2020/21 financial year, the total South African population skew the interpretation of data gathered in the public sector. used from the DHIS-NDoH 2000-2030 time series was Human resources and bed density data are examples in just under 60 million (59 797 656).29 Gauteng is the most this regard. In the short term, loss of employment resulting populous province (15 635 579), followed by KwaZulu-Natal from economic contraction linked to the COVID-19 pandemic (11 441 785). Where public sector-only data are described, may be accompanied by a reduction in the number of South a more appropriate denominator is the estimate of the Africans who are beneficiaries of medical schemes, with uninsured population, as shown in Table 10. Provincial a concomitant increase in those dependent on the public estimates of medical schemes coverage are reported in sector. More fundamentally, the separation between the the General Household Survey by Statistics South Africa, public and private sectors is expected to be altered by the from which the uninsured population can be calculated. introduction of National Health Insurance. Accounting for Modelled estimates per province and per district have the population registered with the National Health Insurance been produced by Insight Actuaries, and are also shown Fund, and for all service providers contracted by the Fund, in the table. Expressed another way, the proportion of the across sectors, will be necessary.
Health and Related Indicators 219 c a a a a a a a a a a a a e e e d b Ref WC 27.7 99 965 99 890 129 462 7 005 741 6 875 130 6 752 051 6 997 465 6 879 229 6 750 840 NW 20.1 56 762 58 038 104 882 4 108 816 4 041 010 4 107 283 3 978 839 3 972 440 4 043 350 NC 24.2 23 638 24 395 372 889 1 261 475 1 267 621 1 282 813 1 277 266 1 292 786 1 252 486 MP 18.0 79 782 79 726 76 495 4 680 103 4 535 772 4 679 786 4 538 262 4 609 223 4 609 880 LP 18.7 122 947 125 754 127 420 5 814 697 5 769 667 5 993 527 5 945 275 5 852 553 6 039 032 KZ 17.0 94 359 197 913 200 374 11 193 611 11 319 610 11 441 785 11 531 628 11 394 984 11 248 330 GP 22.8 18 178 239 457 209 690 15 132 215 15 488 137 14 770 705 15 635 579 15 268 630 14 902 655 FS 23.5 50 130 47 604 129 825 2 913 990 2 897 063 2 878 655 2 900 278 2 928 903 2 890 007 EC 24.7 115 893 109 247 168 965 6 713 318 6 711 899 6 734 001 6 718 500 6 705 472 6 730 662 1.4 SA 8.7 0.7 0.3 3.0 2.0 21.3 989 318 954 532 1 220 809 57 924 791 58 147 306 29 128 875 58 793 276 30 493 475 59 797 656 58 979 654 59 622 350 Sex|Age|Series|Cat vital registration total vital registration total all ages both sexes mid-year all ages DHIS both sexes total 2000-2030 FinYr all ages both sexes mid-year all ages DHIS both sexes total 2000-2030 FinYr all ages both sexes mid-year female all ages mid-year male all ages mid-year all ages DHIS both sexes total 2000-2030 FinYr both sexes 0-14 years both sexes mid-year 15-24 years both sexes mid-year 25-59 years both sexes mid-year 60+ years both sexes mid-year all ages both sexes mid-year 2016 boundaries all ages both sexes mid-year both sexes mid-year both sexes 2017 2018 2019 2019 2016 2020 2020 2020 Period 2018/19 2020/21 2019/20 2019-2020
Indicator Live birth occurrences registered Population Annual population growth rate Area (square km) Crude death rate (deaths per 1 000 population) Ageing index province by indicators 10: Demographic Table
220 South African Health Review 2020 f f a a h g Ref WC 54.1 5 314 165 5 126 360 4 895 746 5 000 996 NW 39.2 3 457 711 3 316 809 3 483 493 3 258 489
3.5 NC 1 016 118 1 060 391 1 044 246 1 029 338
MP 61.2 ]: The number of people per square kilometre. 2 4 013 571 3 894 676 3 959 472 3 826 456 LP 46.5 5 434 186 5 492 012 5 367 894 5 307 963 KZ 122.2 9 802 101 9 679 375 9 889 239 9 955 624 Population [Number]: Total number of people. [Number]: Total Population Projected population figures are based on various projection models attempting to quantify effects of HIV and AIDS on population growth. the expected density [people per km Population Public sector dependent (uninsured) population [Number]: This is an adjustment of the total population to the number assumed be dependent on services in public health sector based on medical scheme (health insurance) coverage. It is calculated by subtracting the number of people with medical scheme cover (determined from medical scheme membership reports, or surveys indicating percentage of population on medical schemes) from the total population. fertility rate [Number]: The average number of children that a woman gives birth to in her Total assuming that the prevailing rates remain unchanged. lifetime, • • • • GP 852.0 11 549 024 11 052 005 10 709 025 10 995 558
FS 22.6 2 419 696 2 501 035 2 439 562 2 460 452 EC 39.9 6 041 048 5 863 832 5 855 329 5 868 952 36 SA 2.3 48.8 47 747 441 49 135 918 48 587 394 46 969 699 as described in DHB 2018/19 Sex|Age|Series|Cat 35 32 33 mid-year all ages GHS both sexes all ages GHS both sexes all ages GHS both sexes model all ages GHS both sexes mid-year 29 ]: Land area covered by geographic entity. ]: Land 2 31 37 34 2017 2018 2019 2020 2020 Period
Stats SA MYE 2020 SA Stats Demarcation Board Live Births 2017 SA Stats Live Births 2019 SA Stats Est 2000-30 DHIS Pop GHS 2017 SA Stats Insight med schemes 2019 GHS 2018 SA Stats Ageing index [Number]: Ratio of the number people 65+ to under 15 years. [Number]: Ratio Ageing index a value of 16 means there are people aged 65 and over for every 100 under 15 years i.e. age. Calculated as ([65+/0-14]*100) The rate at which the population is increasing Annual population growth rate [Percentage]: It as a percentage of the base population size. or decreasing in a given year expressed into consideration all the components of population growth, namely births, deaths and takes migration. Area (square km) [km Crude death rate (deaths per 1 000 population) [per population]: Number of deaths in a year per 1 000 population. Live birth occurrences registered [Number]: The number of live registered. Indicator Population Population density Public sector dependent (uninsured) population fertility Total rate Reference notes Reference a b c d e f g h Definitions • • • • •
Health and Related Indicators 221 Some measures rely on particular age bands. Table 11 declining. At any point in time, the population reflects the shows the provincial estimates per 5-year age band for net effects of fertility, migration and mortality. The Global 2020/21. The population under 1 year of age is key to Burden of Disease Study has projected population counts estimates of immunisation coverage, and the distribution for 195 countries to 2100.30 Projections were provided for per district is shown in Table 12. In 2019, the number of life a reference scenario and for a scenario in which the SDG birth occurrences registered in South Africa was 954 532, targets for education and contraceptive need were met. representing a birth cohort of just under 1 million. South Africa’s population was projected to peak at 77.97 million in 2073, before declining to 74.6 million in 2100. If the In 2020, South Africa’s estimated total fertility rate (TFR) SDG targets were met, the 2100 population was projected was 2.3. The TFR is defined as “the average number of as only 60.36 million. The South African TFRs were children that a woman gives birth to in her lifetime, assuming projected at 1.70 and 1.57 in 2100, under the reference and that the prevailing rates remain unchanged”. South Africa’s SDG attainment scenarios, respectively. TFR is still above the replacement value of 2.1, but is
Table 11: National and provincial population estimates by age group, 2020/21
Age groups SA EC FS GP KZ LP MP NC NW WC
00-04 years 5 727 127 701 989 263 644 1 298 353 1 242 008 659 763 470 894 125 806 401 080 563 590
05-09 years 5 732 068 756 775 281 368 1 242 799 1 195 993 686 770 463 255 121 561 403 511 580 036
10-14 years 5 586 549 756 208 285 886 1 167 174 1 165 258 657 527 461 942 121 012 401 166 570 376
15-19 years 4 793 213 617 552 248 870 1 050 108 1 001 743 536 411 395 433 106 691 331 903 504 502
20-24 years 4 824 133 463 924 230 996 1 356 440 977 767 461 864 386 664 95 724 305 420 545 334
25-29 years 5 459 941 491 507 244 555 1 678 660 1 042 729 487 839 425 699 105 548 348 491 634 913
30-34 years 5 664 937 519 768 259 787 1 726 879 1 029 640 504 972 447 433 115 911 380 951 679 596
35-39 years 4 819 219 447 970 223 508 1 430 985 853 497 435 854 383 599 102 324 334 026 607 456
40-44 years 3 718 226 350 365 174 247 1 103 422 632 532 343 692 288 287 79 576 265 879 480 226
45-49 years 3 149 495 310 821 153 108 907 572 536 595 287 140 237 156 68 353 224 621 424 129
50-54 years 2 578 062 267 526 131 374 721 861 426 504 229 849 189 151 57 878 184 134 369 785
55-59 years 2 239 207 250 021 114 716 608 643 382 477 201 482 159 824 49 144 158 546 314 354
60-64 years 1 831 479 226 724 95 260 491 524 312 125 162 934 122 069 41 609 128 289 250 945
65-69 years 1 421 329 182 077 76 840 367 388 248 244 135 140 96 639 33 856 93 813 187 332
70-74 years 999 089 132 592 53 264 246 971 185 777 95 969 63 665 24 036 62 691 134 124
75-79 years 626 996 96 962 33 415 142 366 110 410 61 469 39 809 16 469 43 015 83 081
80+ years 626 586 140 537 29 440 94 434 98 486 90 357 48 584 17 315 39 747 67 686
Total 59 797 656 6 713 318 2 900 278 15 635 579 11 441 785 6 039 032 4 680 103 1 282 813 4 107 283 6 997 465
Reference notes DHIS Pop Est 2000-3029
222 South African Health Review 2020 Table 12: Population estimates under 1 year of age by district, 2020/21
Province District Female under 1 year Male under 1 year Population under 1 year
EC BUF: Buffalo City MM 5 650 5 808 11 458
DC10: Sarah Baartman DM 3 600 3 630 7 230
DC12: Amathole DM 7 595 7 831 15 426
DC13: C Hani DM 7 106 7 302 14 408
DC14: Joe Gqabi DM 3 272 3 334 6 606
DC15: OR Tambo DM 19 832 20 369 40 201
DC44: A Nzo DM 11 035 11 216 22 251
NMA: N Mandela Bay MM 8 324 8 346 16 670
FS DC16: Xhariep DM 1 262 1 278 2 540
DC18: Lejweleputswa DM 5 444 5 442 10 886
DC19: T Mofutsanyana DM 7 374 7 474 14 848
DC20: Fezile Dabi DM 4 100 4 156 8 256
MAN: Mangaung MM 7 191 7 476 14 667
GP DC42: Sedibeng DM 7 484 7 740 15 224
DC48: West Rand DM 7 358 7 656 15 014
EKU: City of Ekurhuleni MM 33 645 34 402 68 047
JHB: Johannesburg MM 48 823 49 800 98 623
TSH: Tshwane MM 32 175 33 066 65 241
KZ DC21: Ugu DM 9 285 9 393 18 678
DC22: uMgungundlovu DM 11 219 11 443 22 662
DC23: uThukela DM 8 324 8 626 16 950
DC24: uMzinyathi DM 7 671 7 999 15 670
DC25: Amajuba DM 6 647 6 858 13 505
DC26: Zululand DM 10 920 11 301 22 221
DC27: uMkhanyakude DM 8 982 9 123 18 105
DC28: King Cetshwayo DM 11 150 11 496 22 646
DC29: iLembe DM 7 920 8 089 16 009
DC43: Harry Gwala DM 6 204 6 330 12 534
ETH: eThekwini MM 37 152 38 552 75 704
LP DC33: Mopani DM 12 535 13 102 25 637
DC34: Vhembe DM 15 073 15 697 30 770
DC35: Capricorn DM 13 601 14 155 27 756
DC36: Waterberg DM 6 985 7 239 14 224
DC47: Sekhukhune DM 14 005 14 546 28 551
MP DC30: G Sibande DM 12 622 12 854 25 476
DC31: Nkangala DM 14 531 14 974 29 505
DC32: Ehlanzeni DM 20 524 21 028 41 552
Health and Related Indicators 223 Province District Female under 1 year Male under 1 year Population under 1 year
NC DC6: Namakwa DM 951 937 1 888
DC7: Pixley Ka Seme DM 2 129 2 182 4 311
DC8: ZF Mgcawu DM 2 628 2 603 5 231
DC9: Frances Baard DM 4 042 4 162 8 204
DC45: JT Gaetsewe DM 3 041 3 077 6 118
NW DC37: Bojanala Platinum DM 17 962 18 209 36 171
DC38: NM Molema DM 8 470 8 505 16 975
DC39: RS Mompati DM 5 974 6 134 12 108
DC40: Dr K Kaunda DM 7 881 7 940 15 821
WC CPT: Cape Town MM 34 060 35 634 69 694
DC1: West Coast DM 3 840 3 920 7 760
DC2: Cape Winelands DM 7 855 8 181 16 036
DC3: Overberg DM 2 553 2 718 5 271
DC4: Garden Route DM 5 041 5 235 10 276
DC5: Central Karoo DM 573 586 1 159
Total 563 620 579 154 1 142 774
Reference notes DHIS Pop Est 2000-3029
South Africa’s progress through the demographic transition Continued urbanisation will alter the denominators, but also is also evident from the DHIS-NDoH population projections require timely changes to equitable share formulae relied on to 2030, and can be seen in the population pyramids shown for the division of revenue. in Figure 12. Each series shows the provincial population pyramids for 2000/01, 2010/11, 2020/21 and 2030/31, A Census is intended to be performed in South Africa contrasted with the national values. The growing elderly once in every decade, and the next in the series should be population is evident, as is the ‘nipping’ of the base, as the completed in 2021. A Census allows for the recalibration of percentage of younger children declines. In many of the adult many measures which have relied on annual estimates in age bands, the percentage of both males and females in the the intercensal period. Of these, none will be more telling Western Cape and Gauteng exceeds the national values. that the provincial populations, which serve as denominators By contrast, the Eastern Cape and Limpopo have younger for many indicators, but also inform the division of public populations than the national average. The impact of the revenue. The Census will also provide an opportunity to revised DHIS-NDoH population projections at a provincial estimate the prevalence of disability, and to describe that level is shown in Figure 13, which depicts the changes in prevalence at provincial level. Cross-tabulation of other provincial population estimates from 2000 to 2020, based measures, such as educational attainment and access to on the previous (2002-2021) and updated (2000-2030) time water, electricity and sanitation, by disability status is also series. The most dramatic impacts are evident for the Eastern theoretically possible. However, that does require that Cape and Gauteng, and to some extent the Western Cape. disability status be reported in dichotomous terms.
224 South African Health Review 2020 2021 94 114 65 055 352 181 801 221 180 897 440 518 618 285 255 150 237 749 1 101 182 389 553 520 636 5 688 111 4 154 975 2 517 262 3 646 120 3 672 972 5 646 385 6 056 740 51 271 057 10 268 106 12 062 348 2020 94 079 65 049 179 297 234 164 516 827 349 162 619 549 787 706 383 224 438 499 250 603 3 618 516 1 089 108 6 055 413 3 577 853 11 789 227 2 508 740 5 590 975 5 604 222 4 095 090 10 160 305 50 588 817 2019 93 998 65 009 774 135 177 528 246 016 512 802 376 844 436 345 230 439 345 826 620 576 3 562 191 1 076 210 6 054 133 3 509 361 5 561 993 11 512 547 10 051 814 4 033 645 5 493 229 2 499 856 49 896 787 Uninsured (Calculated) 2018 93 939 64 903 370 317 175 769 342 451 760 541 241 465 621 027 508 631 433 868 226 794 5 517 215 1 063 361 3 440 613 3 970 979 3 505 357 9 939 927 2 490 037 6 048 336 5 394 889 49 192 621 11 236 602 2017 64 709 93 809 173 879 236 861 431 008 746 673 338 796 363 486 223 064 620 832 504 069 1 049 812 3 907 071 3 447 083 3 370 396 2 478 405 5 293 979 6 037 259 5 469 309 9 825 204 10 958 124 48 467 334 7.2 9.8 13.1 8.8 15.1 11.2 11.9 17.3 17.5 15.7 20.1 13.5 15.4 16.4 16.4 15.8 12.5 12.5 16.5 22.4 24.6 22.2 Year 2018 Med schemes Actuaries model) coverage (Insight 2021 74 348 417 771 114 077 471 043 208 167 623 516 796 759 483 024 958 398 282 362 305 203 7 119 038 2 910 130 6 714 789 1 297 034 4 169 094 4 748 543 11 563 182 6 084 467 4 686 530 15 997 809 60 604 086 2020 74 342 114 035 414 190 278 104 618 954 480 810 798 388 299 764 463 390 942 232 206 326 6 713 318 1 282 813 4 107 283 11 441 785 4 680 103 4 598 783 6 997 465 2 900 278 6 039 032 15 635 579 59 797 656 2019 74 296 799 711 113 937 614 134 273 681 410 232 478 448 294 278 455 676 925 999 204 290 6 711 899 1 267 621 4 510 747 11 319 610 6 875 130 5 993 527 4 043 350 2 890 007 4 609 880 15 268 630 58 979 654 2018 74 175 Total Population (DHIS Pop Est 2000-30) (DHIS Pop Population Total 113 865 609 139 447 783 475 732 288 834 909 738 269 352 406 229 800 293 202 266 11 193 611 6 752 051 1 252 486 6 705 472 3 978 839 4 422 382 5 945 275 2 878 655 4 538 262 58 147 306 14 902 655 2017 73 953 113 708 893 149 401 893 800 041 200 091 472 596 439 524 603 675 283 326 264 922 4 332 129 3 912 693 1 236 528 6 693 192 11 064 419 4 465 224 6 625 756 14 533 321 5 893 652 2 865 208 57 289 993 Data Geo Id ZA EC FS GP KZ LP MP NC NW WC BUF CPT DC1 DC2 DC3 DC4 DC5 DC6 DC7 DC8 DC9 DC10 Geo Level Country Province District Table 13: Population estimates, modelled estimates for medical schemes coverage and uninsured population, national, provincial population, national, provincial and uninsured medical schemes coverage for modelled estimates estimates, 13: Population Table and district, 2017-2021
Health and Related Indicators 225 2021 113 772 822 141 439 103 323 651 663 618 885 374 538 703 753 558 768 640 529 679 705 540 629 709 566 283 646 622 686 084 686 808 1 241 476 1 143 507 1 097 210 1 476 355 1 023 754 1 652 574 1 389 942 1 402 092 2020 113 729 533 135 761 562 325 451 661 538 818 229 621 850 1 135 191 758 245 438 389 565 878 523 648 699 796 642 265 880 888 686 305 695 258 1 011 950 1 374 451 1 078 120 1 376 758 1 237 229 1 639 976 1 460 923 2019 327 181 685 711 113 655 517 357 704 781 814 273 614 067 565 514 747 838 437 607 527 633 876 539 637 809 693 848 659 349 769 809 999 963 1 363 719 1 445 619 1 126 900 1 346 482 1 232 963 1 626 295 1 058 862 Uninsured (Calculated) 2018 113 530 521 931 737 186 871 973 510 773 713 584 777 430 606 516 1 118 419 987 563 684 760 564 993 436 699 687 509 632 855 328 569 656 694 809 623 1 611 267 1 318 455 1 429 739 1 227 846 1 349 848 1 039 755 2017 113 277 721 686 503 931 564 104 653 591 516 096 974 725 784 435 726 345 627 436 683 233 867 225 435 589 329 593 599 324 680 752 804 425 1 221 763 1 413 008 1 109 640 1 020 801 1 334 906 1 594 936 1 290 304 7.1 9.1 7.4 8.7 4.3 8.3 4.2 9.2 5.4 4.9 6.4 13.1 8.6 6.8 5.2 6.6 5.0 5.0 11.0 14.8 13.2 10.2 10.5 12.0 Year 2018 Med schemes Actuaries model) coverage (Insight 2021 127 119 787 417 776 172 721 434 867 237 827 384 969 742 756 396 708 994 643 503 569 454 505 879 340 685 572 008 688 960 680 655 1 488 161 1 262 612 1 541 080 1 150 285 1 353 845 1 645 648 1 840 283 1 226 939 2020 863 111 127 071 731 081 816 195 706 771 795 781 680 361 755 842 769 853 643 043 676 068 342 580 964 828 563 568 505 057 565 495 1 218 016 1 137 023 1 349 214 1 613 205 1 474 045 1 524 972 1 240 644 1 826 254 2019 671 378 671 846 344 401 755 188 741 095 558 701 504 155 126 989 704 433 557 752 1 811 019 763 309 804 398 858 938 804 993 642 629 960 065 1 218 483 1 123 554 1 209 120 1 580 378 1 344 562 1 508 997 1 460 085 2018 Total Population (DHIS Pop Est 2000-30) (DHIS Pop Population Total 754 141 551 591 503 110 551 724 750 351 701 596 812 362 126 849 666 163 756 335 642 037 793 526 854 033 345 862 663 584 955 063 1 109 621 1 492 421 1 196 496 1 547 482 1 794 284 1 445 233 1 338 982 1 200 020 2017 501 831 819 681 758 871 781 857 641 027 655 716 698 281 126 566 752 459 748 902 346 940 949 863 544 202 545 556 848 550 660 459 1 514 441 1 190 601 1 174 685 1 095 197 1 332 348 1 474 956 1 776 098 1 429 236 Data Geo Id DC12 DC13 DC14 DC15 DC16 DC18 DC19 DC20 DC21 DC22 DC23 DC24 DC25 DC26 DC27 DC28 DC29 DC30 DC31 DC32 DC33 DC34 DC35 DC36 Geo Level District
226 South African Health Review 2020 2021 481 547 701 786 439 016 966 601 707 844 735 885 798 524 765 254 822 489 236 480 1 169 946 3 109 493 1 696 709 4 762 389 2 678 849 3 258 882 2020 818 661 437 461 478 521 697 351 964 351 695 412 796 738 1 159 141 763 338 726 282 232 606 3 212 742 2 614 485 1 658 989 3 045 354 4 629 938 2019 814 171 716 143 795 177 961 777 475 414 435 770 688 837 228 579 760 658 686 550 1 148 330 3 166 415 4 497 837 1 620 504 2 979 836 2 548 952 Uninsured (Calculated) 2018 471 815 434 138 958 194 682 014 705 473 675 738 757 525 793 352 224 526 808 860 3 119 841 1 137 242 2 914 037 2 484 106 1 582 260 4 366 999 2017 791 071 753 574 432 479 467 790 664 726 953 439 674 660 802 436 220 342 693 962 1 125 781 2 419 319 2 847 127 4 236 281 1 543 892 3 073 040 7.3 9.7 3.8 5.6 5.6 24.1 13.9 12.8 14.0 18.9 23.8 20.4 30.6 20.8 22.2 20.0 Year 2018 Med schemes Actuaries model) coverage (Insight 2021 510 113 811 748 910 841 877 233 274 657 473 588 830 067 969 545 966 230 1 972 917 1 214 323 6 121 322 1 239 350 4 018 350 3 860 013 4 080 699 2020 471 910 963 811 799 715 270 158 828 210 906 601 956 893 869 265 506 908 1 211 496 3 961 457 5 951 077 1 227 904 1 929 057 3 767 270 3 996 528 2019 265 481 861 046 503 616 901 629 787 328 943 535 826 587 960 427 470 086 1 216 451 5 781 281 3 672 841 1 884 307 3 910 546 1 208 262 3 904 334 35 2018 Total Population (DHIS Pop Est 2000-30) (DHIS Pop Population Total 956 471 852 518 895 747 774 929 929 477 260 774 468 326 499 804 824 690 1 203 761 5 613 109 1 839 837 3 824 195 1 204 705 3 579 403 3 846 906 2017 914 311 762 301 822 319 951 482 255 914 843 325 888 633 466 536 495 540 1 197 788 1 192 565 3 789 198 1 795 223 5 445 091 3 736 387 3 486 050 and Insight med schemes 2019 29 32 Data Geo Id DC37 DC38 DC39 DC40 DC42 DC43 DC44 DC45 DC47 DC48 EKU ETH JHB MAN NMA TSH Geo Level District Scale 0 notes Reference Est 2000-30 DHIS Pop
Health and Related Indicators 227 Figure 12: Trends in provincial population compared to national population, % by age-sex group
2000/01 2010/11 2020/21 2030/31 SA % of population [Male | Female] - lines SA % of population [Male | Female] - lines SA % of population [Male | Female] - lines SA % of population [Male | Female] - lines Prov AgeGrp 5% 0% 5% 5% 0% 5% 5% 0% 5% 5% 0% 5% EC 65+ 2.2% 3.8% 2.4% 4.3% 2.7% 5.5% 2.8% 6.7% 60-64 years 1.3% 1.8% 1.1% 1.7% 1.2% 2.2% 1.2% 2.1% 55-59 years 1.2%1.7% 1.4% 2.2% 1.4% 2.4% 1.6% 2.3% 50-54 years 1.5% 2.1 % 1.6% 2.6% 1.6% 2.4% 2.1% 2.5% 45-49 years 1.9% 2.6% 1.8% 2.8% 2.0% 2.6% 2.9% 3.2% 40-44 years 2.1% 3.1% 2.0% 2.8% 2.5% 2.7% 3.6% 3.7% 35-39 years 2.3% 3.3% 2.4% 3.0% 3.3% 3.4% 3.5% 3.5% 30-34 years 2.4% 3.2% 2.9% 3.1% 3.9% 3.9% 2.8% 2.8% 25-29 years 2.8% 3.4% 3.7% 3.7% 3.7% 3.6% 2.8% 2.8% 20-24 years 3.4% 3.8% 4.8% 4.8% 3.5% 3.4% 3.8% 3.8% 15-19 years 5.8% 5.7% 5.9% 5.7% 4.7% 4.5% 5.1% 4.9% 10-14 years 7.2% 7.0% 5.5% 5.2% 5.7% 5.6% 5.2% 5.1% 05-09 years 6.9% 6.7% 5.3% 5.2% 5.7% 5.6% 5.0% 4.8% 00-04 years 5.4% 5.2% 6.1% 6.0% 5.3% 5.2% 4.8% 4.7% FS 65+ 1.8% 3.0% 2.1% 3.4% 2.4% 4.2% 2.7% 5.0% 60-64 years 1.1% 1.2% 1.3% 1.7% 1.4% 1.9% 1.3% 2.0% 55-59 years 1.4% 1.7% 1.7% 2.2% 1.7% 2.3% 1.7% 2.3% 50-54 years 1.9% 2.2% 2.0% 2.5% 2.0% 2.6% 2.2% 2.6% 45-49 years 2.5% 2.9% 2.4% 2.9% 2.4% 2.9% 3.2% 3.3% 40-44 years 2.9% 3.2% 2.7% 3.2% 2.9% 3.1% 4.0% 4.0% 35-39 years 3.4% 3.8% 3.2% 3.5% 3.9% 3.8% 4.0% 3.9% 30-34 years 3.6% 4.1% 3.5% 3.7% 4.6% 4.4% 3.8% 3.7% 25-29 years 3.9% 4.3% 4.4% 4.4% 4.3% 4.2% 3.8% 3.7% 20-24 years 4.1% 4.4% 5.1% 5.1% 4.0% 4.0% 4.4% 4.3% 15-19 years 5.4% 5.3% 5.0% 4.9% 4.3% 4.3% 4.6% 4.5% 10-14 years 6.0% 5.9% 4.6% 4.5% 5.0% 4.9% 4.4% 4.3% 05-09 years 5.4% 5.3% 4.7% 4.7% 4.9% 4.8% 4.2% 4.1% 00-04 years 4.8% 4.6% 5.4% 5.3% 4.6% 4.5% 4.2% 4.2% GP 65+ 1.6% 2.5% 1.8% 2.6% 2.3% 3.1% 3.0% 3.9% 60-64 years 1.0%1.0% 1.3%1.4% 1.5% 1.7% 1.5% 1.6% 55-59 years 1.5% 1.6% 1.8% 1.9% 1.9% 2.0% 2.1 % 2.0% 50-54 years 2.1% 2.3% 2.3% 2.5% 2.3% 2.3% 2.6% 2.5% 45-49 years 2.8% 3.0% 2.9% 2.9% 3.1% 2.7% 3.5% 3.3% 40-44 years 3.6% 3.7% 3.4% 3.2% 3.6% 3.4% 4.3% 4.2% 35-39 years 4.4% 4.3% 4.4% 3.8% 4.7% 4.5% 4.6% 4.5% 30-34 years 4.9% 4.6% 5.1 % 4.5% 5.6% 5.4% 4.6% 4.5% 25-29 years 6.1 % 5.2% 6.0% 5.7% 5.4% 5.4% 4.7% 4.6% 20-24 years 5.5% 4.9% 5.8% 5.6% 4.3% 4.3% 4.7% 4.6% 15-19 years 4.3% 4.3% 4.0% 4.1% 3.3% 3.4% 3.7% 3.7% 10-14 years 4.3% 4.3% 3.3% 3.3% 3.8% 3.7% 3.5% 3.4% 05-09 years 4.0% 4.0% 3.7% 3.6% 4.0% 3.9% 3.5% 3.4% 00-04 years 4.1% 4.1% 4.7% 4.5% 4.2% 4.1% 3.8% 3.7% KZ 65+ 1.6% 3.1% 1.7% 3.3% 1.9% 3.7% 2.0% 4.5% 60-64 years 1.0% 1.3% 1.0%1.6% 1.0% 1.7% 1.0% 1.7% 55-59 years 1.1% 1.6% 1.3% 1.9% 1.3% 2.1% 1.5% 2.1% 50-54 years 1 .6% 2.2% 1.5% 2.3% 1 .5% 2.2% 2.0% 2.4% 45-49 years 1 .9% 2.5% 1.8% 2.7% 2.1% 2.6% 2.9% 3.1% 40-44 years 2.2% 3.0% 2.1% 2.8% 2.6% 3.0% 3.8% 3.9% 35-39 years 2.7% 3.6% 2.8% 3.2% 3.7% 3.8% 3.9% 4.0% 30-34 years 2.9% 3.6% 3.3% 3.6% 4.5% 4.5% 3.7% 3.7% 25-29 years 3.7% 4.2% 4.4% 4.5% 4.6% 4.5% 3.6% 3.6% 20-24 years 4.0% 4.4% 5.4% 5.4% 4.3% 4.3% 4.3% 4.3% 15-19 years 5.6% 5.7% 5.6% 5.5% 4.4% 4.3% 4.7% 4.6% 10-14 years 6.4% 6.3% 5.2% 5.1% 5.1% 5.0% 4.9% 4.7% 05-09 years 6.3% 6.2% 5.1% 5.0% 5.3% 5.1 % 4.9% 4.7% 00-04 years 5.6% 5.6% 5.8% 5.7% 5.5% 5.3% 4.9% 4.7% LP 65+ 1.7% 3.7% 1.7% 3.6% 1.9% 4.4% 1.9% 5.3% 60-64 years 0.9% 1.3% 0.9% 1.5% 0.9%1.7% 1.1% 1.8% 55-59 years 0.9% 1.4% 1.2% 1.9% 1.2% 2.1% 1.6% 2.2% 50-54 years 1.3% 1.9% 1.3% 2.2% 1.5% 2.3% 2.2% 2.5% 45-49 years 1.6% 2.4% 1.6% 2.6% 2.0% 2.7% 3.1% 3.2% 40-44 years 1.7% 2.6% 1 .9% 2.8% 2.6% 3.1% 3.8% 3.9% 35-39 years 2.1% 3.2% 2.4% 3.3% 3.5% 3.7% 3.8% 3.9% 30-34 years 2.3% 3.2% 2.9% 3.6% 4.1% 4.2% 3.2% 3.3% 25-29 years 2.7% 3.8% 3.9% 4.1% 4.1% 4.0% 3.1% 3.0% 20-24 years 3.5% 4.3% 5.1% 5.1% 3.9% 3.8% 3.9% 3.7% 15-19 years 6.1% 6.1% 6.1% 6.0% 4.6% 4.3% 5.1 % 4.8% 10-14 years 7.4% 7.4% 5.8% 5.7% 5.6% 5.3% 5.2% 5.0% 05-09 years 7.3% 7.2% 5.4% 5.3% 5.8% 5.6% 5.0% 4.9% 00-04 years 6.1% 6.0% 6.2% 5.9% 5.5% 5.4% 4.8% 4.6% MP 65+ 1.6% 2.7% 1.7% 2.8% 2.0% 3.3% 2.4% 4.0% 60-64 years 0.9% 1.1% 1.0%1.2% 1.1%1.5% 1.2%1.7% 55-59 years 1.1% 1.3% 1.4% 1.7% 1.5% 2.0% 1.7% 2.1% 50-54 years 1.5% 1.8% 1.7% 2.0% 1.8% 2.3% 2.4% 2.4% 45-49 years 2.1% 2.4% 2.1 % 2.5% 2.4% 2.7% 3.5% 3.2% 40-44 years 2.3% 2.7% 2.4% 2.9% 3.1% 3.1% 4.3% 3.9% 35-39 years 2.9% 3.5% 3.1% 3.4% 4.3% 3.9% 4.4% 4.0% 30-34 years 3.1% 3.7% 3.8% 3.8% 5.0% 4.5% 4.1 % 3.8% 25-29 years 3.6% 4.3% 4.9% 4.6% 4.7% 4.3% 3.9% 3.6% 20-24 years 3.9% 4.4% 5.5% 5.2% 4.2% 4.1% 4.2% 4.1% 15-19 years 5.8% 5.7% 5.3% 5.3% 4.2% 4.2% 4.4% 4.3% 10-14 years 6.7% 6.6% 5.1% 5.1% 5.0% 4.9% 4.5% 4.5% 05-09 years 6.3% 6.3% 5.1% 5.1% 5.0% 4.9% 4.4% 4.4% 00-04 years 5.8% 5.8% 5.8% 5.7% 5.1% 5.0% 4.5% 4.3%
5% 0% 5% 5% 0% 5% 5% 0% 5% 5% 0% 5% Province % of population Province % of population Province % of population Province % of population [ Male | Female] - bars [ Male | Female] - bars [ Male | Female] - bars [ Male | Female] - bars
Geographic level Sex Sex (ZA) Prov%_M_F female female (ZA) ZA%_M_F male male (ZA)
228 South African Health Review 2020 2000/01 2010/11 2020/21 2030/31 SA % of population [Male | Female] - lines SA % of population [Male | Female] - lines SA % of population [Male | Female] - lines SA % of population [Male | Female] - lines Prov AgeGrp 6% 4% 2% 0% 2% 4% 6% 6% 4% 2% 0% 2% 4% 6% 6% 4% 2% 0% 2% 4% 6% 6% 4% 2% 0% 2% 4% 6% NC 65+ 2.2% 3.2% 2.3% 3.5% 2.7% 4.5% 3.0% 5.3% 60-64 years 1.3% 1.3% 1.3% 1.7% 1.4% 1.8% 1.4% 1.8% 55-59 years 1.6% 1.9% 1.8% 2.1% 1.7% 2.1% 1.9% 2.0% 50-54 years 2.0% 2.4% 2.1% 2.5% 2.1% 2.4% 2.5% 2.3% 45-49 years 2.5% 3.0% 2.4% 2.8% 2.7% 2.6% 3.6% 3.0% 40-44 years 2.9% 3.3% 2.8% 3.0% 3.3% 2.9% 4.3% 3.7% 35-39 years 3.2% 3.6% 3.4% 3.3% 4.3% 3.7% 4.3% 3.7% 30-34 years 3.5% 3.8% 3.8% 3.5% 4.8% 4.3% 3.9% 3.5% 25-29 years 3.7% 3.9% 4.6% 4.1% 4.2% 4.0% 3.8% 3.6% 20-24 years 3.7% 3.9% 4.8% 4.7% 3.7% 3.8% 3.9% 3.9% 15-19 years 5.2% 4.9% 4.6% 4.7% 4.1% 4.2% 4.1% 4.1% 10-14 years 5.9% 5.8% 4.6% 4.5% 4.7% 4.7% 4.4% 4.3% 05-09 years 5.6% 5.5% 5.0% 4.9% 4.8% 4.7% 4.5% 4.3% 00-04 years 5.2% 5.1% 5.7% 5.5% 5.0% 4.8% 4.5% 4.3% NW 65+ 2.1% 3.1% 2.1% 3.1% 2.2% 3.6% 2.7% 4.1% 60-64 years 1.2%1.2% 1.2% 1.4% 1.5% 1.6% 1.5% 1.7% 55-59 years 1.6% 1.7% 1.7% 1.8% 1.9% 2.0% 2.0% 2.0% 50-54 years 1.9% 2.0% 2.3% 2.2% 2.2% 2.3% 2.6% 2.4% 45-49 years 2.5% 2.6% 2.7% 2.6% 2.8% 2.7% 3.6% 3.1% 40-44 years 3.3% 3.0% 3.0% 2.9% 3.5% 3.0% 4.4% 3.8% 35-39 years 3.8% 3.5% 3.6% 3.4% 4.4% 3.7% 4.4% 3.8% 30-34 years 3.9% 3.7% 4.2% 3.7% 5.0% 4.3% 4.1% 3.5% 25-29 years 4.1% 4.1% 4.9% 4.2% 4.5% 4.0% 3.9% 3.6% 20-24 years 4.3% 4.1% 5.0% 4.7% 3.8% 3.6% 4.2% 4.1% 15-19 years 5.2% 4.9% 4.7% 4.6% 4.1% 4.0% 4.3% 4.2% 10-14 years 5.9% 5.8% 4.4% 4.3% 4.9% 4.9% 4.4% 4.3% 05-09 years 5.5% 5.3% 4.8% 4.8% 5.0% 4.9% 4.4% 4.3% 00-04 years 5.0% 4.8% 5.8% 5.8% 4.9% 4.8% 4.4% 4.3% WC 65+ 2.2% 3.1% 2.3% 3.2% 2.7% 4.0% 3.5% 5.2% 60-64 years 1.3% 1.3% 1.4% 1.7% 1.6% 2.0% 1.8% 2.2% 55-59 years 1.6% 1.8% 1.8% 2.1% 2.0% 2.5% 2.3% 2.4% 50-54 years 2.1% 2.4% 2.2% 2.7% 2.5% 2.8% 2.7% 2.7% 45-49 years 2.5% 2.9% 2.8% 3.2% 3.0% 3.0% 3.7% 3.5% 40-44 years 3.1% 3.6% 3.3% 3.6% 3.5% 3.4% 4.3% 4.1% 35-39 years 3.8% 4.1% 3.9% 3.8% 4.5% 4.2% 4.3% 4.1% 30-34 years 4.2% 4.5% 4.2% 4.1% 5.0% 4.7% 4.1 % 3.9% 25-29 years 4.6% 4.5% 5.0% 4.9% 4.6% 4.4% 4.0% 3.9% 20-24 years 4.3% 4.4% 5.1% 5.0% 3.9% 3.9% 4.1% 4.1% 15-19 years 4.8% 4.8% 4.2% 4.2% 3.6% 3.6% 3.8% 3.8% 10-14 years 5.0% 5.0% 3.9% 3.8% 4.1% 4.0% 3.6% 3.5% 05-09 years 4.7% 4.6% 4.1% 4.0% 4.2% 4.1% 3.6% 3.5% 00-04 years 4.6% 4.4% 4.9% 4.7% 4.1% 4.0% 3.7% 3.6% 6% 4% 2% 0% 2% 4% 6% 6% 4% 2% 0% 2% 4% 6% 6% 4% 2% 0% 2% 4% 6% 6% 4% 2% 0% 2% 4% 6% Province % of population Province % of population Province % of population Province % of population [ Male | Female] - bars [ Male | Female] - bars [ Male | Female] - bars [ Male | Female] - bars
Geographic level Sex Sex (ZA) Prov%_M_F female female (ZA) ZA%_M_F male male (ZA)
Source: DHIS-NDoH 2000-2030 population time series. Received August 2020.29
Figure 13: Comparison of DHIS-NDoH population time series by province
EC FS GP KZ LP MP NC NW WC
16M
14M
12M
10M
8M Population 6M
4M
2M
0M 2002 2005 2008 2011 2014 2017 2020 2002 2005 2008 2011 2014 2017 2020 2002 2005 2008 2011 2014 2017 2020 2002 2005 2008 2011 2014 2017 2020 2002 2005 2008 2011 2014 2017 2020 2002 2005 2008 2011 2014 2017 2020 2002 2005 2008 2011 2014 2017 2020 2002 2005 2008 2011 2014 2017 2020 2002 2005 2008 2011 2014 2017 2020
DHIS Pop Est 2000-30 DHIS 2000-2030 DHIS Pop Est 2002-21 DHIS 2002-2021
Health and Related Indicators 229 areas (EAs).39 Transmission potential was depicted as the Socio-economic and environmental combined effect of informality (the number of informal dwellings risk factor indicators per EA), population density (number of people per hectare) and lack of access to basic services (number of households without basic access to running water and sanitation). Susceptibility was The World Health Statistics includes measures not only expressed as a function of the age distribution per EA, disease of health status and health service provision, but also the burden (HIV prevalence) and poverty (household income below socio-economic factors that have implications for population R76 400 per annum). The Gauteng City-Region Observatory health.38 The 2020 report includes the following indicators (GCRO) has also identified factors at ward level which constitute (with the South African values in brackets): risks to maintaining social distancing and preventative hygiene, • proportion of population using safely-managed drinking- and which increase health and social vulnerability, specifically water services (not reported) during an outbreak or shutdown.40 Two elements in the latter • proportion of population using safely-managed list were access to medical scheme cover and the ability to sanitation services (not reported) save money. Both would be expected to be impacted by a loss • proportion of population using a hand washing facility of formal employment. Table 14 also shows the most recent with soap and water (44%) unemployment figures, as reported in the Statistics South • proportion of population with primary reliance on clean Africa Quarterly Labour Force Survey (P0211).41 For quarter 2, a fuels and technology (85%) counter-intuitive year-on-year decrease in the unemployment • annual mean concentrations of fine particulate matter rate was shown between 2019 and 2020. However, the report (PM2.5) in urban areas (24.3 μg/m3). also showed the largest quarter 1 to quarter 2 decline in the number of employed persons (by 2.2 million) in 2020 since Table 14 shows the recent reported values for the percentage the survey began in 2008. The difference is attributed to the of South African households with access to improved large increase in those who are considered economically sanitation, at national and provincial levels. The persistent inactive, and therefore not unemployed according to the differences between the figures for Limpopo, Mpumalanga, official definition. More than half of those who were employed and to some extent North West, and other provinces are in quarter 2 (58.1%) were expected to work during the national striking. Access to hand washing facilities has been highlighted lockdown, but mainly off-site (such as from home). Although during the COVID-19 pandemic, as this was one of the core the majority (81.3%) reported continuing to receive payment or non-pharmaceutical interventions (NPIs) promoted as a simple a salary during the lockdown, almost one in five experienced means to limit spread of the novel coronavirus (SARS-CoV-2). a reduction in earnings. The quarter 3 report saw a significant Another key NPI was social distancing. The Council for increase in the unemployment rate, to 30.8% nationally.42 This is Scientific and Industrial Research (CSIR) has proposed a COVID the highest rate recorded since 2008. The unemployment rate vulnerability index, which reflects both transmission potential varied from 21.6% in the Western Cape to 45.8% in the Eastern and susceptibility, and applied it at the level of enumeration Cape in quarter 3 of 2020.
Table 14: Socio-economic indicators by province
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Percentage of 2016 CS 75.6 74.4 79.0 88.5 65.1 51.5 60.4 78.6 64.6 93.5 a households with GHS 2018 81.0 85.1 83.2 90.5 77.2 57.1 67.5 82.6 69.0 94.3 b access to improved sanitation 2017 GHS 2018 82.4 85.8 85.2 90.7 81.1 59.3 67.8 88.1 71.7 94.2 b
2018 GHS 2018 83.0 88.0 85.5 91.8 81.4 58.9 68.1 90.0 70.6 93.8 b
Unemployment rate 2017 Q1 both sexes 15-64 years LFS 27.7 32.2 35.5 29.2 25.8 21.6 31.5 30.7 26.5 21.5 c (official definition) 2017 Q4 both sexes 15-64 years LFS 26.7 35.1 32.6 29.1 24.1 19.6 28.9 27.1 23.9 19.5 d
2018 Q4 both sexes 15-64 years LFS 27.1 36.1 32.9 29.0 25.6 16.5 32.0 25.0 26.6 19.3 e
2019 Q1 both sexes 15-64 years LFS 27.6 37.4 34.9 28.9 25.1 18.5 34.2 26.0 26.4 19.5 f
2019 Q2 both sexes 15-64 years LFS 29.0 35.4 34.9 31.1 26.1 20.3 34.7 29.4 33.0 20.4 g
2020 Q2 both sexes 15-64 years LFS 23.3 36.9 25.3 26.4 18.9 21.9 13.3 25.1 21.6 16.6 h
2020 Q3 both sexes 15-64 years LFS 30.8 45.8 35.5 33.7 26.4 26.3 27.8 23.1 28.3 21.6 i
Reference notes a CS 2016 Provincial48 e Labour Force Survey Q4 201851 b Stats SA GHS 201837 f Labour Force Survey Q1 201952 c Labour Force Survey Q1 201749 g Labour Force Survey Q2 201953 d Labour Force Survey Q4 201750 h Labour Force Survey Q2 202041
230 South African Health Review 2020 Definitions • Percentage of households with access to improved sanitation (b) want to work and are available to work within two weeks of [Percentage]: Percentage of households using improved the interview, and sanitation facilities (including flush to piped sewer system, flush to (c) have taken active steps to look for work or to start some septic tank, flush/pour flush to pit, flush/pour flush to elsewhere). form of self-employment in the 4 weeks prior to the interview. • Unemployment rate (official definition) [Percentage]: The official Note that the census produces lower estimates of labour definition of the unemployed is that they are those people force participation because there are less prompts to identify within the economically active population (aged 15-65) who employed people, and the Labour Force Survey provides the (a) did not have a job or business during the 7 days prior to the official labour market statistics. interview,
A unique nationally-representative panel survey, the Coronavirus Rapid Mobile (CRAM) Survey of South Africa Health status indicators 2020, has been created to track the health, economic and social outcomes of the COVID-19 pandemic.43 Multiple working papers have been produced from the first wave, as Mortality COVID-19 has focused attention on the recording and well as an overview of the findings.44 The first wave was a analysis of mortality data, and how rapidly such data can be follow-up of the nationally-representative panel developed used to track the impact of a novel disease. In January 2020, for the 2008 to 2017 National Income Dynamics Study the Medical Research Council published the most recent (NiDS), which included more than 28 000 individuals in report in the Rapid Mortality Surveillance (RMS) series, for 7 300 households. The study is therefore referred to as 2018.54 The sources of data relied upon are important to NiDS-CRAM. Although caution is needed in interpreting distinguish: the data, since the sample is far smaller than the QLFS, • the main data source is the National Population Register NiDS-CRAM showed an 18% decline in employment kept by the Department of Home Affairs, where death between February and April 2020. The working paper that registrations are recorded; focused on the labour market and poverty impacts of the • cause of death data, produced by Statistics South Africa, pandemic showed that job losses had disproportionately are relied upon for calculating the maternal mortality affected those in lower income groups, manual labourers ratio (MMR) and NCD premature mortality rates; and women.45 Wave 2 showed that the jobs lost between • the neonatal mortality rate is based on adjusted data February and April had not been recovered by June 2020.46 from the DHIS. From a risk factor perspective, the reduction in industrial The completeness of death registration data is therefore activity and traffic volumes that occurred during the earlier critical, and delays in releasing data on the cause of death stages of the national lockdown might be expected to have a major impact on the ability to report some indicators. have a positive impact on air quality. However, in the The MMR and NCD premature mortality rates had not been South African context, the impact of continued reliance on updated, as cause of death data had not at that time been coal-powered power stations and on energy sources other released beyond 2016. Statistics South Africa released the than electricity for cooking might blunt the effect of the 2017 cause of death data (P0309.3) in March 2020.55 A total lockdown. The World Health Statistics value reported for of 446 544 deaths were registered in 2017, continuing the South Africa for PM2.5 levels does not, however, include decline from the peak in 2005. Of these, 42.6% occurred new data on this indicator. An accessible explanation of air in hospitals and 23.4% at home. As in 2016, the leading quality measures is at https://www.visualcapitalist.com/how- main cause of death in 2017 was an NCD (cardiovascular air-quality-index-works/. disease). NCDs were responsible for 57.8% of deaths in 2017. Reported mortality data are not disaggregated by Based on the Community Survey 2016, Statistics South disability status. Efficient civil registration and vital statistics Africa reported on some selected measures of access (CRVS) systems are essential to monitoring health systems. to education and basic services.47 Disabled persons’ The SAMRC Burden of Disease Research Unit has described households had, on average, poorer access to water (81.8% South Africa as facing “protracted transitions driven by versus 83.8% for all households), improved sanitation social pathologies”, and underscored the need to “sustain (73.5% versus 75.6%), refuse or waste removal by the local and enhance the country’s capacity to collect, analyse and authority (58.2% versus 63.9%). More disabled households utilise cause of death data”.56 relied on solid fuels for cooking (17.0% versus 13.7%). Paradoxically, slightly more disabled households has access The RMS Report 2018 noted that life expectancy at birth to mains electricity (89.8% versus 87.6%). The definition of is now 64.8 years, with women expected to live longer disability used here was the UN measure, on the basis of (67.9 years) than men (61.9 years). This represents a gain which 7.7% of the population was described as disabled. of over 10 years since 2005, when life expectancy had
Health and Related Indicators 231 dropped to 53.7 years. The increase is attributed to a basis is challenging, due to delays in reporting deaths. decrease in child mortality as well as young adult mortality. A specific report on excess deaths was published by the In that regard the slight increases in Infant mortality (25 SAMRC and the UCT Centre for Actuarial Research in per 1000 live births) and under-five mortality (34 per August 2020, which explains their approach to reporting.58 1000 live births) rates between 2017 and 2018 need to Two measures re possible – the p-score and the count be watched carefully. The UN Inter-agency Group for of excess deaths. The p-score is calculated as (observed Child Mortality Estimation released the 2020 edition mortality – expected mortality)/expected mortality. A of its Levels and Trends in Child Mortality series, which p-score of 1 (or 100%) would therefore show that observed highlighted the risk to global gains in child mortality from mortality is twice that expected. Comparing p-scores the COVID-19 pandemic.57 Although children and the youth between countries is challenging. Firstly, sub-national have experienced lower mortality rates from COVID-19, the differences might skew national figures, and secondly, age disruption to health systems performance across the globe distributions may be very different. In South Africa, a total is expected to be severe. The same can be said for maternal of 49 251 excess deaths were recorded between 6 May health. The extent to which persons with disabilities have and 3 November 2020.59 While noting that more data on been more or less affected by COVID-19, or suffered causes of death are needed, the SAMRC concluded that disruption in access to needed healthcare and other “a significant proportion of the current excess mortality services, is at present unknown. being observed in South Africa is likely to be attributable to COVID-19”. Figure 14 shows the weekly estimates of During the COVID-19 pandemic, the concept of excess excess mortality, contrasted with the reported COVID-19 mortality has also gained currency. Excess deaths are those deaths. Figure 15 also illustrates the marked sub-national that are occurring during a crisis (such as a pandemic), over differences, based on the Eastern Cape and Western and above the number that would be expected had the Cape data. Based on the first 99 days of the pandemic in crisis not occurred. In the case of the COVID-9 pandemic, South Africa, diabetes and hypertension were identified excess deaths would be attributable to SARS-CoV-2 itself, as the most common co-morbidities in those who died as well as to changes in access to healthcare services from COVID-19.60 A modestly increased risk of COVID-19 (e.g. delayed diagnosis or medical procedures, poor access mortality in people living with HIV was reported in the to medicines). Trying to track excess mortality on a weekly Western Cape.61
Figure 14: South Africa (natural) excess deaths and reported COVID-19 deaths, 2020
7500 Excess Deaths Reported Covid Deaths 5000
2500 South Africa
0
-2500 01 Jul 15 Jul 29 Jul 01 Jan 15 Jan 29 Jan 12 Feb 26 Feb 08 Apr 22 Apr 03 Jun 17 Jun 11 Mar 25 Mar 07 Oct 21 Oct 09 Sep 23 Sep 12 Aug 26 Aug 04 Nov 06 May 20 May
Week beginning
Source: South African Medical Research Council Report on Weekly Deaths in South Africa web site https://www.samrc.ac.za/reports/report- weekly-deaths-south-africa [Accessed: 12 Nov 2020]
232 South African Health Review 2020 Figure 15: Eastern Cape and Western Cape (natural) excess deaths and reported COVID-19 deaths, 2020
600 Excess Deaths Reported Covid Deaths 400
200 Western Cape Western 0
-200 01 Jul 15 Jul 29 Jul 01 Jan 15 Jan 29 Jan 12 Feb 26 Feb 08 Apr 22 Apr 03 Jun 17 Jun 11 Mar 25 Mar 07 Oct 21 Oct 09 Sep 23 Sep 12 Aug 26 Aug 04 Nov 06 May 20 May
Week beginning
2000 Excess Deaths 1500 Reported Covid Deaths
1000
500 Eastern Cape
0
-500 01 Jul 15 Jul 29 Jul 01 Jan 15 Jan 29 Jan 12 Feb 26 Feb 08 Apr 22 Apr 03 Jun 17 Jun 11 Mar 25 Mar 07 Oct 21 Oct 09 Sep 23 Sep 12 Aug 26 Aug 04 Nov 06 May 20 May
Week beginning
Source: South African Medical Research Council Report on Weekly Deaths in South Africa web site https://www.samrc.ac.za/reports/report- weekly-deaths-south-africa [Accessed: 12 Nov 2020]
That COVID-19 is ‘more than just flu’ is elegantly illustrated visualisations at multiple levels. A particularly good example by comparing global daily deaths with those attributable is the Our World in Data country profile for South Africa to other pandemics (HIV and H1N1 2009) and endemic (https://ourworldindata.org/coronavirus/country/south- causes (such as tuberculosis, pneumonia, malaria and africa?country=~ZAF). Figure 17 shows the 7-day rolling seasonal influenza) (Figure 16). COVID-19 is estimated to average of daily deaths in South Africa over the 200 days be responsible for 3 475 global deaths per day, which since the first 5 deaths were reported. Figure 18 contrasts exceeds those for tuberculosis (3 014), HIV (2 110) and those mortality data, expressed per million population, for malaria (2 002). A feature of the COVID-19 pandemic has the BRICS countries. been the rapid development, and updating, of data and
Health and Related Indicators 233 Figure 16: Average disease deaths per day worldwide
COVID-19 (#Coronavirus) 3 475 Tuberculosis 3 014 Hepatitis B 2 430 Pneumonia 2 216 HIV / AIDS 2 110 Malaria 2 002 Shigellosis 1 644 causes severe diarrhea, kills young children Rotavirus 1 233 Seasonal Flu 1 027 Swine Flu H1N1 2009 743 Norovirus 548 “vomiting bug” kills mostly children in poorer countries Whooping Cough 440 Typhoid 396 Cholera 392 Meningitis 329 Measles 247 Rabies 162 Yellow Fever 82 Leishmaniasis 55 parasitic diseases infecting Echinococcosis 53 millions in poorer countries Dengue Fever 50 Hepatitis A 20 Chicken Pox 12 Sleeping Sickness 10 Ebola 5.3 SARS 3.2 during peak outbreaks MERS 2.3
0 1000 2000 3000 4000
pandemic (global outbreak) endemic (always around)
Source: https://informationisbeautiful.net/visualizations/covid-19-coronavirus-infographic-datapack/ [Accessed 12 Nov 2020]
234 South African Health Review 2020 Figure 17: Daily new confirmed COVID-19 deaths (7-day rolling average), South Africa
297.4 deaths
200
100
50
20
10 Daily new confirmed COVID-19 deaths Daily new confirmed COVID-19
5
0 50 100 150 200 Days since 5 daily new deaths first reported
Source: Our World In Data web site https://ourworldindata.org/coronavirus/country/south-africa?country=~ZAF [Accessed 30 Nov 2020]
Figure 18: Daily new confirmed COVID-19 deaths per million people (7-day rolling average), BRICS countries
5
4
Russia 3
Brazil
2
South Africa
1
India Daily new confirmed COVID-19 deaths per million people Daily new confirmed COVID-19 China 0 Mar 1, 2020 Apr 30 Jun 19 Aug 8 Sep 27 Nov 30, 2020 Date South Africa India China Brazil Russia
Source: Our World In Data web site https://ourworldindata.org/coronavirus-data-explorer?zoomToSelection=true&time=2020-03-01.. latest&country=ZAF~IND~BRA~RUS~CHN%20®ion=World&deathsMetric=true&interval=smoothed&perCapita=true &smoothing=7&pickerMetric=total_cases&pickerSort=desc [Accessed 30 Nov 2020]
Health and Related Indicators 235 Table 15: Mortality indicators by province
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Adult mortality 2016 both sexes RMS 33.0 a (45q15 - probability female RMS 27.0 a of dying between 15-60 years of age) male RMS 39.0 a
2017 both sexes RMS 32.0 a
female RMS 26.0 a
male RMS 38.0 a
2018 both sexes RMS 31.0 a
female RMS 25.0 a
male RMS 37.0 a
Early neonatal death 2017/18 both sexes DHIS 10.2 11.8 12.0 10.2 10.3 11.0 10.4 10.0 7.9 7.2 b in facility rate 2018/19 both sexes DHIS 9.8 10.3 13.5 9.8 9.0 11.7 10.2 10.0 8.9 7.2 b
2019/20 both sexes DHIS 9.6 10.0 11.9 9.3 8.7 12.5 9.6 13.1 9.5 6.5 b
Infant mortality rate 2018 both sexes <1 year RMS 25.0 a (deaths under 1 year 2020 both sexes <1 year mid-year 23.6 c per 1 000 live births)
Life expectancy at 2018 both sexes RMS 64.8 a birth female RMS 67.9 a
male RMS 61.9 a
2020 female mid-year 68.5 c
female mid-year without HIV/ 71.3 c AIDS
male mid-year 62.5 c
male mid-year without HIV/ 64.6 c AIDS
Maternal death in 2017/18 DHIS 1 019 138 66 244 197 135 98 15 71 55 b facility 2018/19 DHIS 1 065 118 85 281 188 143 78 17 86 69 b
2019/20 DHIS 928 123 61 245 176 134 59 26 57 47 b
Maternal mortality in 2017/18 female DHIS 105.7 128.3 132.9 108.5 101.9 109.2 120.0 65.9 117.5 55.1 b facility ratio 2018/19 female DHIS 105.9 106.1 168.3 122.8 88.4 111.6 92.4 71.3 137.4 66.8 b
2019/20 female DHIS 88.0 108.2 116.2 102.9 76.9 97.8 67.1 109.9 88.0 43.6 b
Maternal mortality 2015 female RMS 153.0 a ratio (MMR) 2016 female RMS 134.0 a
female vital registration 121.0 d
2017 WHO 119.0 e
Mortality between 2014 both sexes 30-70 years RMS 30.0 a 30-70 years from female 30-70 years RMS 24.0 a cardiovascular cancer diabetes or male 30-70 years RMS 35.0 a chronic respiratory disease 2015 both sexes 30-70 years RMS 30.0 a female 30-70 years RMS 24.0 a
male 30-70 years RMS 35.0 a
2016 both sexes 30-70 years RMS 29.0 a
both sexes 30-70 years WHO 26.2 e
female 30-70 years RMS 24.0 a
male 30-70 years RMS 34.0 a
236 South African Health Review 2020 Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Neonatal death in 2017/18 both sexes DHIS 12.3 13.8 14.1 13.6 12.4 12.4 11.5 11.6 9.4 9.0 b facility rate 2018/19 both sexes DHIS 12.1 12.5 16.8 13.0 11.5 13.2 11.5 11.7 10.6 8.9 b
2019/20 both sexes DHIS 11.9 12.3 15.6 12.4 10.9 14.3 11.2 15.5 11.5 8.2 b
Neonatal mortality 2018 both sexes RMS 11.0 a rate (NMR) (deaths both sexes WHO 11.0 e <28 days old per 1 000 live births)
Perinatal death in 2019/20 both sexes DHIS 29.1 29.0 35.4 27.9 29.7 31.7 28.2 36.8 31.0 22.9 b facility rate
Perinatal mortality 2017/18 both sexes DHIS 24.8 19.1 34.1 24.4 23.7 30.0 28.3 32.6 22.8 23.2 b rate (stillbirths plus 2018/19 both sexes DHIS 30.1 28.3 39.9 28.6 30.8 31.7 30.2 34.3 30.6 25.6 b deaths <8 days old per 1 000 total births) 2019/20 both sexes DHIS 25.0 18.8 32.7 24.3 24.5 32.0 26.5 37.9 23.9 21.7 b
Still birth in facility 2018/19 both sexes DHIS 20 033 1 942 1 291 4 292 4 543 2 566 1 663 549 1 314 1 873 b
2019/20 both sexes DHIS 20 289 2 092 1 191 4 409 4 733 2 642 1 604 530 1 349 1 739 b
Stillbirth in facility rate 2017/18 both sexes DHIS 21.1 19.6 26.2 19.3 23.3 21.4 21.4 21.6 22.1 18.7 b
2018/19 both sexes DHIS 20.4 18.2 26.7 19.0 22.0 20.3 20.2 24.6 21.9 18.5 b
2019/20 both sexes DHIS 19.7 19.2 23.8 18.8 21.2 19.5 18.8 24.0 21.7 16.5 b
Reference notes a RMS 201854 b DHIS c Stats SA MYE 202031 d SDG SA report 201962 e World Health Statistics 202038
Definitions • Adult mortality (45q15 – probability of dying between 15-60 • Mortality between 30-70 years from cardiovascular, cancer, years of age) [Percentage]: The probability of dying between diabetes or chronic respiratory disease [Percentage]: the ages of 15 and 60 years of age (percentage of 15-year-olds Unconditional probability of dying between exact ages 30 and who die before their 60th birthday). 70 from any of cardiovascular disease, cancer, diabetes, or • Early neonatal death in facility rate [per 1 000 live births]: Early chronic respiratory disease. neonatal deaths per 1 000 infants who were born alive in • Neonatal death in facility rate [per 1 000 live births]: Infants health facilities. 0-28 days who died during their stay in the facility per • Infant mortality rate (deaths under 1 year per 1 000 live births) 1 000 live births in facility. [per 1 000 live births]: The number of children less than one • Neonatal mortality rate (NMR) (deaths <28 days old per 1 000 live year old who die in a year, per 1 000 live births during that year. births) [per 1 000 live births]: Number of deaths within the first • Life expectancy at birth [Years]: The average number of 28 days of life, in a year, per 1 000 live births during that year. additional years a person could expect to live if current mortality • Perinatal death in facility rate [per 1 000 total births]: Still births trends were to continue for the rest of that person's life. and deaths in facility under 7 days of life (Early Neonatal Death) • Maternal death in facility [Number]: Maternal death is death per 1 000 births. occurring during pregnancy, childbirth and puerperium • Perinatal mortality rate (stillbirths plus deaths <8 days old within 42 days of termination of pregnancy, irrespective of per 1 000 total births) [per 1 000 total births]: The number of the duration and site of pregnancy and the cause of death perinatal deaths per 1 000 births. The perinatal period starts as (obstetric and non-obstetric). the beginning of foetal viability (28 weeks gestation or 1 000g) • Maternal mortality in facility ratio [per 100 000 live births]: Women and ends at the end of the 7th day after delivery. Perinatal who die as a result of childbearing, during pregnancy or within deaths are the sum of stillbirths plus early neonatal deaths. 42 days of delivery or termination of pregnancy, per 100 000 live These are divided by total births (live births plus stillbirths). births, and where the death occurs in a health facility. • Still birth in facility [Number]: Still born infants delivered in a • Maternal mortality ratio (MMR) [per 100 000 live births]: The health facility. number of women who die as a result of childbearing, during • Stillbirth in facility rate [per 1 000 births]: Stillbirths in facility per the pregnancy or within 42 days of delivery or termination of 1 000 total births in a facility. pregnancy in one year, per 100 000 live births during that year.
Health and Related Indicators 237 Infectious disease • Unless testing of the population is done randomly, the No report on infectious diseases in 2020 can ignore the percentage of tested cases that are positive will not overarching and global impact of the COVID-19 pandemic, reflect the real percentage of the population infected. declared a public health emergency of international concern • The fatalities peak always lags the peak in the number (PHEIC) on 30 January 2020.63 The unprecedented spread of infections. of this novel coronavirus has been accompanied by the • The case fatality rate (CFR), percentage of fatalities in rapid development of data and reporting systems, including detected cases, is an overestimate of the real infection innovative visualisations. Among the most widely consulted fatality rate (IFR), and will invariably decrease as testing have been: ramps up. • The World Health Organization – https://www.who.int/ • Comparisons between countries should account emergencies/diseases/novel-coronavirus-2019 for differences in demographics and sampling • Our World in Data – https://ourworldindata.org/ methodologies, and be based on percentage rates. coronavirus • A relevant and familiar baseline makes developing an • Johns Hopkins University – https://coronavirus.jhu.edu/ intuition about the numbers easier.” • Institute for Health Metrics and Evaluation (IHME) – https://covid19.healthdata.org/ Each section in this chapter includes mention of the impact of COVID-19, as well as specific sources and studies that Within South Africa, the NDoH official sitehttps:// ( have illuminated its impact on the health system. sacoronavirus.co.za/) and the NICD site (https://www.nicd. ac.za/diseases-a-z-index/covid-19/) have been invaluable Tuberculosis in providing access to advisory documents and policies, South Africa features prominently in the WHO Global as well as epidemiological data. Academic departments Tuberculosis Report 2020.71 WHO points out that only eight and collaborations have also produced extensive analyses, countries were responsible for two-thirds of the global total of including the Data Science for Social Impact Research incident TB cases in 2019: India (26%), Indonesia (8.5%), China Group at the University of Pretoria (https://dsfsi.github.io/ (8.4%), the Philippines (6.0%), Pakistan (5.7%), Nigeria (4.4%), covid19za-dash/), Mediahack (https://mediahack.co.za/ Bangladesh (3.6%) and South Africa (3.6%). WHO maintains datastories/coronavirus/dashboard/) and the COVID-19 three lists of high-burden countries, covering TB overall, multi- South Africa Dashboard (https://www.covid19sa.org/), drug resistant TB (MDR-TB) and HIV-associated TB. Each list which brought together an interdisciplinary team from includes the top 20 countries in terms of the absolute number the University of the Witwatersrand, iThemba LABS and of estimated incident cases, plus the additional 10 countries DataConvergence. with the most severe burden in terms of incidence rates per capita that do not already appear in the top 20, and that meet Epidemiological models, and in particular mechanistic a minimum threshold in terms of their absolute numbers of models that rely on the Susceptible–Exposed–Infectious– incident cases (10 000 per year for TB, and 1 000 per year Recovered (SEIR) framework, have been widely applied. The for HIV-associated TB and MDR-TB). South Africa remains truism that all models are wrong, but some are useful has one of 14 countries that appear on all three lists (the others been proven again and again.64,65 Mortality data have been being Angola, China, DR Congo, Ethiopia, India, Indonesia, particularly closely watched, and have demanded careful Kenya, Mozambique, Myanmar, Nigeria, Papua New Guinea, standardisation.66-68 South Africa’s national response has Thailand and Zimbabwe). Although the WHO report notes also been closely watched, internationally, as the country that South Africa has completed its planned national TB has seen the highest number of laboratory-confirmed prevalence survey, the results have not yet been released, cases on the continent.69 The economic impact of the and the case detection rate remains estimated at 58%. WHO initial national lockdown was severe, and the search for a estimated the TB burden in South Africa in 2019 at 360 000 sustainable and pragmatic policy continues.70 cases, with an uncertainty interval of 250 000-489 000. Of these 209 000 (145 000-285 000) were in people living with Early in the pandemic, the following eight points on HIV, and 14 000 (8 500-20 000) were drug-resistant. It has COVID-19 statistics were made (https://towardsdatascience. been pointed out that the overall incidence is far higher than com/8-key-points-you-might-want-to-think-about- that reported in previous Global Tuberculosis Reports.72 The before-sharing-that-next-covid-19-stat-with-your-friends- national programme explained the difference as being related 812c134de124) and they remain useful reminders of common to duplicate records, resulting from the failure to apply unique pitfalls in interpretation: identifiers to all patient records. • “Confirmed cases is an almost useless stand-alone metric, and it always underestimates the real number of There were theoretical concerns about the diversion of infected people. laboratory capacity (and in particular GeneXpert capacity) • The increase, or decrease, in the number of detected from TB to COVID-19. A marked reduction in the number cases is directly impacted by the number of tests being of TB diagnostic tests conducted was seen in the early administered. weeks of the national lockdown.73 It was felt though, that • An increase in the amount of reported cases doesn’t this reduction was not related to laboratory capacity, but necessarily mean that more people are getting infected. rather to limitations on movement and thus access to
238 South African Health Review 2020 healthcare services. A subsequent analysis of NICD data, A measurable impact on functioning would be expected up to August 2020, confirmed the impact.74 An increase in in patients with extensive lung damage as a result of TB, the GeneXpert positivity rate was also detected. A possible especially in terms of the ability to walk any distance unaided. explanation was that patients with mild symptoms delayed The extent to which such patients meet the requirements seeking care, whereas those with more advanced symptoms for a disability grant, or are described as disabled in either a did seek care. The overlap in the clinical presentation of TB Census or intercensal surveys, has not been reported. and COVID-19 could contribute to missed diagnoses.
Table 16: TB indicators by province
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Case detection rate 2016 Global TB (2019) 68.0 a (all forms) 2017 Global TB (2019) 75.0 a
2018 Global TB (2019) 76.0 a
2017 Global TB (2020) 58.0 b
2018 Global TB (2020) 58.0 b
2019 Global TB (2020) 58.0 b
Incidence of TB (all 2016 Global TB (2020) 738.0 b types) (per 100 000) 2017 Global TB (2020) 677.0 b
2018 Global TB (2020) 615.0 b
Incidence of TB DS 2016 ETR/Tier.Net 425.6 583.1 479.5 125.5 605.0 267.7 379.1 633.6 466.2 666.7 c (cases started on treatment) (ETR.net) 2017 ETR/Tier.Net 378.6 512.8 429.8 115.4 525.4 241.0 302.2 600.2 426.3 624.5 c 2018 ETR/Tier.Net 390.6 558.4 369.0 222.2 492.8 212.9 264.4 592.5 379.8 617.9 c
TB DS client lost to 2016 ETR/Tier.Net 6.9 6.8 5.7 6.2 5.0 4.3 6.0 10.3 7.2 11.0 c follow up rate 2017 ETR/Tier.Net 8.0 7.8 6.3 8.9 6.5 5.7 7.4 6.7 9.8 11.1 c
2018 ETR/Tier.Net 10.5 11.8 9.1 9.4 10.7 7.4 8.7 10.0 10.9 11.7 d
TB DS death rate 2016 ETR/Tier.Net 6.6 6.3 10.1 5.8 5.4 11.5 7.4 7.7 10.2 3.8 c
2017 ETR/Tier.Net 6.5 6.2 10.4 6.3 6.0 9.3 7.3 9.9 9.0 3.9 c
2018 ETR/Tier.Net 7.0 7.2 10.1 7.0 7.4 10.6 8.5 7.2 8.8 3.8 d
TB DS treatment 2016 ETR/Tier.Net 81.7 83.2 80.2 84.4 82.9 80.6 82.2 77.0 78.4 80.3 c success rate 2017 ETR/Tier.Net 76.3 77.1 70.8 74.5 73.2 81.2 80.3 77.1 78.8 79.0 c
2018 ETR/Tier.Net 79.2 78.3 78.1 82.0 80.0 79.9 81.1 76.5 77.5 77.1 d
TB MDR treatment 2016 EDRWeb 54.1 51.2 52.2 51.5 58.9 65.2 55.2 41.5 52.7 51.7 d success rate 2017 EDRWeb 59.3 58.7 59.9 55.1 63.4 65.1 60.6 53.8 60.9 54.2 d
2018 EDRWeb 54.8 53.8 56.7 46.7 61.9 61.5 60.3 56.3 54.6 44.6 d
TB XDR treatment 2016 EDRWeb 59.4 59.8 42.9 68.9 62.8 50.0 81.0 41.2 63.6 53.8 d success rate 2017 EDRWeb 59.5 58.1 52.9 62.8 63.0 66.7 50.0 58.3 50.0 61.9 d
Tuberculosis effective 2017 ETR/Tier.Net 55.6 56.6 54.5 57.4 56.4 54.8 55.9 52.4 53.3 54.6 c treatment coverage 2018 ETR/Tier.Net 57.2 57.8 53.1 55.9 54.9 60.9 60.2 57.8 59.1 59.3 c
2019 ETR/Tier.Net 60.2 59.5 59.4 62.3 60.8 60.7 61.6 58.1 58.9 58.6 d
Reference notes a Global TB database75 b Global TB Report 202071 c Electronic TB Register d DHIS
Health and Related Indicators 239 Definitions • Case detection rate (all forms) [Percentage]: Proportion of • TB DS death rate [Percentage]: The percentage of TB clients incident cases of TB (all types) that were notified. (all types of TB registered in ETR.net) who died. For a given country, it is calculated as the number of notified • TB DS treatment success rate [Percentage]: The percentage cases of TB in one year divided by the number of estimated of TB clients (all types registered in ETR.net) cured plus those incident cases of TB in the same year, and expressed as a who completed treatment. percentage. • TB MDR treatment success rate [Percentage]: The percentage • Incidence of TB (all types) (per 100 000) [per 100 000 of TB clients (MDR TB) cured plus those who completed population]: Estimated number of cases of tuberculosis (all treatment. types) per 100 000 population (for the year). • TB XDR treatment success rate [Percentage]: TB XDR clients Adjusted for estimated under-reporting of TB cases and other successfully complete treatment as a proportion of TB XDR factors. clients started on treatment • Incidence of TB DS (cases started on treatment) (ETR.net) • Tuberculosis effective treatment coverage [Scale 0-100]: [Cases per 100 000 population]: Drug sensitive (DS) TB cases The percentage of incident TB cases that are detected started on treatment (in ETR.net) per 100 000 people in the and successfully treated in a year. Combination of the case catchment population. notification rate and the successful treatment rate. Currently • TB DS client lost to follow up rate [Percentage]: The calculated using drug-sensitive TB outcomes. DR TB should percentage of TB clients (all types of TB) who defaulted ideally also be included in the calculation. treatment.
HIV and AIDS by sex and five-year age group. An example of the output, As shown in Table 17, a number of HIV indicators rely on as a map showing ART coverage per district in those aged estimates from modelling. In South Africa, the Thembisa 15 years and older (as at March 2020) is shown in Figure 19. model was updated in 2020.76 The developers have pointed out that “estimates of HIV prevalence in Thembisa 4.3 are Disappointingly, the UNAIDS report – entitled “Seizing higher than before, and more in line with the results of recent the Moment” – reported that all 2020 global targets will national household surveys”. The impact of the sources of be missed.77 The impact was stated in stark terms: “from data on estimates of antiretroviral treatment (ART) effective 2015 to 2020, there were 3.5 million more HIV infections coverage in 2017, 2018 and 2019 is shown in Figure 20. and 820 000 more AIDS-related deaths than if the world Routine data sources (DHIS-Tier) consistently show lower was on track to meet its 2020 targets”. At the end of 2019, estimates of effective coverage than do the modelled only 14 countries had met the 90-90-90 target, these estimates (Thembisa 4.2 or 4.3), nationally and per province. being Australia, Botswana, Cambodia, Eswatini, Ireland, Thembisa cannot be used to depict effective coverage per Namibia, the Netherlands, Rwanda, Spain, Switzerland, district, so only the DHIS-Tier data can be used in assessing Thailand, Uganda, Zambia and Zimbabwe. In other words, the ART effective coverage element of the UHC SCI at that in these countries at least 73% of all people living with HIV level. DHIS-Tier data can also be used to examine ART were on ART and had suppressed viral loads. As currently effective coverage by age, as shown in Figure 21. Effective constructed, the 90-90-90 targets are a cross-sectional coverage in children aged 14 years and younger lags that metric, which can lead to misleading interpretations. in older patients (15 years and older) across all provinces, It has been shown, for example, that increases in ART and for all years of the series. As shown, Western Cape initiation can cause spurious declines in the cross-sectional ART coverage data have not been reported via DHIS-Tier measure of viral suppression, even if suppression rates are in 2020. HIV data are not reported in a way that allows for unaltered.78 A hybrid of cross-sectional and longitudinal disaggregation by disability status. metrics has been proposed. The cross-sectional metrics would be: 90% of people who are living with HIV should An alternate set of estimates for district-level HIV measures be diagnosed and engaged with care; and at least 73% of was released in November 2020, based on the Naomi people who are living with HIV should be virally suppressed. small-area estimation model available at https://www. The longitudinal metrics would be: 90% of people who are hivdata.org.za/. The inputs to the Bayesian model include newly linked to care should be on ART within 90 days of the Statistics South Africa mid-year population estimates, linking to care, and 90% of people who are newly on ART household survey data on HIV prevalence, ART coverage, should be virally suppressed within 90 days of starting ART. and recent HIV infection from the South African National HIV Prevalence, Incidence, Behaviour and Communication As with TB, UNAIDS notes that “the spread of the new Survey (2017) and the South African Demographic and coronavirus threatens to overwhelm health system Health Survey (2016), the number of patients accessing ART capacities and lockdowns limit movement and strain in both the public sector (from DHIS) and the private sector economies, people living with HIV and people at higher risk (from the Council for Medical Schemes), and the prevalence of HIV infection are facing life-threatening disruptions to of HIV and ART coverage among pregnant women attending health and HIV services”. Innovations in care are possible public-sector services (from DHIS). The outputs from the though, such as greater reliance on self-testing and model are the HIV prevalence and incidence, the number telehealth services. of people living with HIV, and ART coverage, at district level
240 South African Health Review 2020 c c c c a a a a a a a a a a a a a a a a a a a a b d b b b b b d d d b b b Ref 7.4 7.5 7.6 WC 8 139 8 067 8 030 14 021 13 574 13 543 421 751 434 921 256 821 256 821 277 278 436 770 490 737 407 730 248 754 423 227 278 027 307 239 448 495 334 966 520 427 300 470 505 857 269 888 292 928 300 958 13.8 13.9 14.0 NW 9 386 9 295 11 756 24 413 23 536 22 846 315 571 501 315 314 793 543 170 459 172 315 454 524 851 269 416 482 018 474 748 232 332 546 933 450 335 278 802 538 939 272 085 305 498 236 856 294 460 236 856 9.8 9.6 9.9 NC 4 015 4 702 3 868 3 826 4 862 5 058 61 567 76 061 79 737 110 861 59 347 74 598 72 224 57 429 57 429 55 479 80 763 79 656 66 439 53 603 84 599 68 499 63 999 65 582 112 823 108 765 MP 15.9 16.0 16.0 16 394 17 069 16 998 35 557 35 720 50 594 493 116 498 211 668 118 411 905 411 905 447 571 514 347 755 315 632 129 514 605 744 974 476 276 732 953 703 838 682 723 394 836 464 569 629 485 452 969 665 042 LP 10.7 10.8 10.8 13 755 14 832 14 506 27 699 24 302 25 962 314 212 351 149 419 136 617 237 381 733 379 515 606 721 461 625 356 915 366 875 489 324 453 530 342 409 329 044 329 044 445 098 429 228 380 630 626 520 404 000 KZ 17.9 18.0 18.0 49 601 48 037 44 482 95 682 100 371 102 821 1 271 116 1 271 116 1 221 515 1 481 679 1 436 613 1 339 651 1 439 150 1 835 501 1 481 095 2 050 611 1 967 748 1 387 688 1 938 322 1 872 066 1 394 990 1 465 490 1 950 240 2 051 550 2 038 990 2 022 520 GP 12.4 12.4 12.5 23 425 25 709 58 700 29 264 59 263 62 205 898 561 927 825 927 825 1 743 611 1 134 719 1 133 186 1 109 761 1 925 119 1 011 503 1 181 960 1 037 212 1 866 419 1 912 230 1 805 816 1 109 900 1 792 825 1 027 700 1 852 088 1 844 000 1 880 550 FS 15.1 15.1 15.0 10 151 9 842 9 964 17 834 19 097 19 529 351 139 346 041 365 138 294 215 403 021 236 160 435 478 282 727 368 973 273 392 438 456 292 878 263 428 297 082 284 862 440 686 268 235 422 550 246 002 246 002 EC 13.7 13.4 13.5 19 571 41 830 18 849 19 939 42 576 39 206 511 867 531 135 851 516 432 133 530 716 895 138 559 312 906 192 770 705 728 875 474 308 493 879 882 247 525 874 785 264 487 098 746 058 452 072 452 072 808 940 SA 18.7 13.2 13.2 13.2 13.0 91.0 94.0 22.9 92.0 156 178 164 196 148 396 327 972 326 567 330 964 7 174 336 7 109 877 7 731 920 5 014 443 4 629 831 4 189 070 4 189 070 6 635 312 6 781 905 4 032 106 5 286 810 4 473 653 4 866 047 4 723 950 7 539 220 6 966 276 7 644 000 7 500 903 7 800 000 800 7 5 020 308 020 5 5 028 590 7 500 000 Sex|Age|Series|Cat both sexes 0-14 years NDoH-Thembisa both sexes both sexes 0-14 years NDoH-Thembisa both sexes 0-14 years NDoH-Thembisa both sexes 15+ years NDoH-Thembisa both sexes 15+ years NDoH-Thembisa both sexes 15+ years NDoH-Thembisa both sexes all ages NDoH-Thembisa both sexes all ages NDoH-Thembisa both sexes all ages NDoH-Thembisa both sexes all ages Thembisa 4.3 both sexes all ages Thembisa 4.3 both sexes both sexes all ages Global Report all ages Global Report both sexes all ages mid-year both sexes all ages Thembisa 4.3 both sexes 15-49 years mid-year both sexes female 15-49 years mid-year all ages Thembisa 4.3 both sexes all ages Thembisa 4.3 both sexes all ages Thembisa 4.3 both sexes all ages mid-year both sexes all ages Global Report both sexes female 15+ years Global Report male 15+ years Global Report 0-14 years DHIS both sexes 0-14 years DHIS both sexes 0-14 years DHIS both sexes 15+ years DHIS both sexes 15+ years DHIS both sexes 15+ years DHIS both sexes all ages Thembisa 4.3 both sexes all ages DHIS both sexes all ages Thembisa 4.3 both sexes all ages Thembisa 4.3 both sexes all ages DHIS both sexes all ages DHIS both sexes all ages DHIS both sexes all ages DHIS both sexes 2018 2018 2018 2018 2018 2019 2019 2019 2019 2019 2019 2020 2020 2020 2020 Period 2018 Q1 2018 Q1 2018 Q1 2019 Q1 2019 Q1 2019 Q1 2020 Q1 2020 Q1 2020 Q1 2020 Q1 2020 Q1 2020 Q1 Mar 2018 Mar 2018 Mar 2019 Mar 2020
Indicator Child living with HIV Adult living with HIV living with HIV Total living with HIV People (PLHIV) HIV prevalence (age 15-49) HIV prevalence (total population) of people Percentage living with HIV (PLHIV) who know their status (1st 90) Total Child ART Total Adult ART Number of patients receiving ART Clients remaining Total at the end of on ART month province by 17: HIV indicators Table
Health and Related Indicators 241 a a a a a a a a a a a a a a a a a a a e b d b d d b b d d d b b d b d d b Ref 67.1 24.1 69.1 21.8 WC 37.0 63.7 60.7 92.7 73.4 64.4 92.3 23.9 94.2 36.6 58.8 50.8 24.0 60.6 56.5 55.9 92.0 37.1 17.5 19.7 91.7 49.1 37.7 57.7 14.5 61.0 57.8 NW 43.4 33.2 38.2 34.0 48.2 36.8 84.9 89.6 54.2 65.3 59.9 88.8 85.8 50.5 85.5 52.9 62.6 71.1 17.8 17.6 NC 13.9 61.8 91.2 77.5 58.7 85.7 25.7 73.8 73.5 75.2 88.3 83.2 30.2 23.8 83.6 58.4 26.4 54.5 29.9 88.2 50.2 64.0 58.9 26.2 73.1 MP 61.8 16.2 57.3 53.7 72.6 48.4 44.9 89.8 60.3 89.6 92.3 65.3 63.9 45.9 66.4 50.8 20.2 86.2 60.2 85.5 50.9 60.9 90.9 52.5 26.5 68.0 LP 19.1 24.1 81.2 77.8 51.5 61.5 51.6 78.7 47.5 49.7 53.7 57.9 57.6 85.7 52.7 72.6 89.3 24.3 48.2 85.3 85.4 52.3 53.6 64.5 86.5 59.0 52.2 KZ 71.4 71.0 21.2 47.8 47.6 67.6 92.7 70.5 70.6 70.9 72.2 45.4 49.0 49.0 89.9 93.2 93.2 25.4 24.5 46.5 64.6 94.6 68.8 69.0 90.6 62.6 65.5 41.1 87.1 GP 77.7 50.1 19.3 41.6 18.8 61.8 37.4 37.0 87.6 45.7 67.6 55.7 40.4 89.4 64.3 40.9 25.3 55.3 50.5 58.9 59.0 85.6 55.5 90.0 56.0 FS 17.4 74.1 44.1 94.1 92.1 71.5 21.8 61.6 67.4 89.7 92.7 66.7 73.5 64.3 45.4 69.3 39.9 38.8 59.8 42.9 55.4 63.5 46.6 89.0 22.5 92.9 65.0 19.1 18.1 EC 61.7 51.4 21.5 37.8 87.4 37.2 84.7 57.6 56.7 38.2 36.8 36.8 62.4 35.9 46.5 58.8 86.8 63.0 86.2 85.9 90.6 55.2 62.9 62.9 56.0 SA 18.7 88.1 65.1 41.4 41.8 87.5 54.7 86.7 62.7 72.8 63.3 43.5 75.0 40.8 68.4 40.6 89.9 24.2 42.5 63.5 59.2 63.9 20.6 64.0 58.9 65.8 69.0 69.0 90.6 92.5 66.9 80.0 58.0 68.0 92.0 92.0 92.0 Sex|Age|Series|Cat both sexes all ages DHIS both sexes both sexes all ages DHIS both sexes all ages DHIS both sexes all ages Thembisa 4.3 both sexes all ages Global Report both sexes all ages Thembisa 4.3 both sexes female 15+ years Global Report male 15+ years Global Report all ages GBD both sexes all ages Thembisa 4.3 both sexes 0-14 years DHIS both sexes 0-14 years DHIS both sexes 0-14 years DHIS both sexes 15+ years DHIS both sexes 15+ years DHIS both sexes 15+ years DHIS both sexes all ages DHIS-Tier both sexes all ages Thembisa 4.3 both sexes all ages Global Report both sexes female 15+ years Global Report male 15+ years Global Report all ages Thembisa 4.3 both sexes all ages Thembisa 4.3 both sexes 0-14 years DHIS-Tier both sexes 15+ years DHIS-Tier both sexes all ages DHIS-Tier both sexes all ages Global Report both sexes all ages Thembisa 4.3 both sexes female 15+ years Global Report male 15+ years Global Report 0-14 years DHIS-Tier both sexes 15+ years DHIS-Tier both sexes all ages DHIS-Tier both sexes all ages Thembisa 4.3 both sexes 0-14 years DHIS-Tier both sexes 15+ years DHIS-Tier both sexes all ages DHIS-Tier both sexes 2017 2017 2018 2018 2018 2018 2019 2019 2019 2020 2020 2020 Period 2018 Q1 2019 Q1 2020 Q1 2020 Q1 2020 Q1 2020 Q1 Mar 2018 Mar 2019 Mar 2020
Indicator Clients remaining on ART Clients remaining on ART rate Antiretroviral coverage (2nd 90) Child with viral load suppressed rate 12 months Adult with viral load suppressed rate 12 months client viral load ART suppressed rate (VLS) HIV viral load suppression (3rd 90) Antiretroviral effective coverage
242 South African Health Review 2020 a a a Ref 0.3 0.3 0.5 WC 1.1 0.9 0.9 NW 1.3 1.4 1.4 NC 1.1 0.9 0.9 MP 0.7 0.7 LP 0.8 0.7 0.5 0.6 KZ 1.0 0.7 0.7 GP Clients remaining on ART rate [Percentage]: Percentage of estimated people living with HIV Percentage rate [Percentage]: Clients remaining on ART data equivalent for Antiretroviral coverage). (Routine who remain on ART. of population (age 15-49) estimated to Percentage HIV prevalence (age 15-49) [Percentage]: be HIV-positive. of population estimated to be HIV Percentage HIV prevalence (total population) [Percentage]: positive. who are of people on ART Percentage HIV viral load suppression (3rd 90) [Percentage]: virologically suppressed (VL level <= 1000 copies/mL). This indicator is also one of the 90-90- 90 global targets for AIDS (UNAIDS). Infants tested PCR positive for rate [Percentage]: Infant PCR test positive around 10 weeks follow up test as a proportion of Infants PCR tested around 10 weeks. [Number]: Number of patients receiving ART. Number of patients receiving ART living with HIV (PLHIV) [Number]: The number of people who are HIV-positive. People of people living with HIV (PLHIV) who know their status (1st 90) [Percentage]: Percentage of people living with HIV who know their status. This indicator is also one Percentage the 90-90-90 global targets for AIDS (UNAIDS). at the end of month [Number]. Clients remaining on ART Total living with HIV [Number]: The estimated number of people who are HIV-positive. Total 1.1 0.7 FS 0.5 • • • • • • • • • • 1.2 1.0 0.9 EC 0.7 0.7 0.9 SA Sex|Age|Series|Cat
both sexes DHIS both sexes DHIS both sexes DHIS both sexes Period 2017/18 2018/19 2019/20 31 79 76 80 Thembisa v4.3 MYE 2020 SA Stats UNAIDS Data 2020 GBD 2017 HIV [Number]. Total Adult ART Adult living with HIV [Number]: Estimated number of adults (15+ years) HIV. clients Proportion of ART Adult with viral load suppressed rate 12 months [Percentage]: with viral load suppressed at different time intervals. This indicates the population level immunological impact of clients on ART. divided The number of patients receiving ART, Antiretroviral coverage (2nd 90) [Percentage]: by the number needing treatment. due to changes in treatment guidelines affecting The denominator has changed over time, patients should The latest definition is that all HIV-infected the criteria for treatment eligibility. This indicator is also one of the 90-90-90 global targets for AIDS (UNAIDS). be on ART. and people on ART Proportion of HIV-positive Antiretroviral effective coverage [Percentage]: zero or missing values set to 1. virally suppressed. Any implausible values (>100) capped at 100, viral load suppressed - total as ART client viral load suppressed rate (VLS) [Percentage]: ART viral load done - total. a proportion of ART [Number]. Total Child ART Child living with HIV [Number]: Estimated number of children (0-14 years) HIV. clients Proportion of ART Child with viral load suppressed rate 12 months [Percentage]: with viral load suppressed at different time intervals. This indicates the population level immunological impact of clients on ART. Indicator Infant PCR test positive rate around 10 weeks Reference notes Reference a DHIS b c d e Definitions • • • • • • • • •
Health and Related Indicators 243 Figure 19:Naomi model ART coverage in adults (15+ years) by district, March 2020
ART coverage 15+ March 2020
80% 75% 70% 65% 60% 55%
Source: Naomi model, available from hivdata.org.za.
244 South African Health Review 2020 Figure 20: ART effective coverage by source Both sexes, all ages Geo Series 2017 2018 2019
SA DHIS-Tier 31.9 40.6 42.5 Global Report 47.0 64.0
Nat. Thembisa 4.2 46.9 53.4 59.2 Thembisa 4.3 51.0 54.7 59.2
EC DHIS-Tier 29.6 35.9 37.2 Thembisa 4.2 42.1 47.1 52.6 Thembisa 4.3 42.9 46.5 51.4
FS DHIS-Tier 36.6 42.9 45.4 Thembisa 4.2 51.0 58.8 63.8 Thembisa 4.3 51.1 55.4 59.8
GP DHIS-Tier 25.1 37.0 40.4 Thembisa 4.2 38.0 46.0 53.4 Thembisa 4.3 42.3 45.7 50.5
KZ DHIS-Tier 35.7 45.4 47.8 Thembisa 4.2 55.1 60.4 64.6 Thembisa 4.3 59.8 62.6 65.5
LP DHIS-Tier 38.9 48.2 52.2 Thembisa 4.2 49.9 55.4 61.3
Province Thembisa 4.3 43.6 47.5 52.7
MP DHIS-Tier 38.3 44.9 48.4 Thembisa 4.2 47.8 57.1 64.8 Thembisa 4.3 50.2 53.7 57.3
NC DHIS-Tier 26.5 29.9 26.2 Thembisa 4.2 54.1 61.5 67.7 Thembisa 4.3 46.5 50.2 54.5
NW DHIS-Tier 25.7 33.2 37.1 Thembisa 4.2 39.6 44.0 49.2 Thembisa 4.3 40.1 43.4 48.2
WC DHIS-Tier 34.1 36.6 24.0 Thembisa 4.2 47.3 51.1 55.3 Thembisa 4.3 47.0 50.8 55.9
0 20 40 60 80 0 20 40 60 80 0 20 40 60 80
Series DHIS-Tier Global Report Thembisa 4.2 Thembisa 4.3
Sources: DHIS-Tier, Thembisa 4.2,81 Thembisa 4.3,76 UNAIDS Global reports 201882 and 202079
Health and Related Indicators 245 Figure 21: ART effective coverage by age group, DHIS, 2017-2020 Both sexes, DHIS-Tier Geo Agegrp 2017 2018 2019 2020
SA 0-14 years 20.4 24.2 20.6 18.7 15+ years 32.5 41.4 43.5 41.8 Nat. all ages 31.9 40.6 42.5 40.8
EC 0-14 years 17.6 21.5 18.1 19.1 15+ years 30.3 36.8 38.2 37.8 all ages 29.6 35.9 37.2 36.8
FS 0-14 years 23.5 21.8 22.5 17.4 15+ years 37.3 44.1 46.6 39.9 all ages 36.6 42.9 45.4 38.8
GP 0-14 years 18.3 25.3 19.3 18.8 15+ years 25.3 37.4 41.1 41.6 all ages 25.1 37.0 40.4 40.9
KZ 0-14 years 22.3 25.4 24.5 21.2 15+ years 36.5 46.5 49.0 49.0 all ages 35.7 45.4 47.8 47.6
LP 0-14 years 17.0 24.3 24.1 19.1 15+ years 40.2 49.7 53.7 53.6
Province all ages 38.9 48.2 52.2 51.6
MP 0-14 years 22.5 26.5 16.2 20.2 15+ years 39.1 45.9 50.9 52.5 all ages 38.3 44.9 48.4 50.8
NC 0-14 years 28.4 25.7 23.8 13.9 15+ years 26.4 30.2 26.4 17.8 all ages 26.5 29.9 26.2 17.6
NW 0-14 years 16.7 19.7 14.5 17.5 15+ years 26.2 34.0 38.2 37.7 all ages 25.7 33.2 37.1 36.8
WC 0-14 years 25.2 23.9 21.8 15+ years 34.4 37.0 24.1 all ages 34.1 36.6 24.0
0 20 40 60 0 20 40 60 0 20 40 60 0 20 40 60
Agegrp 0-14 years 15+ years all ages
Source: DHIS-Tier
246 South African Health Review 2020 Reproductive health new South African Handbook for Contraceptive Method Two reproductive health indicators, measuring effective Provision.83 Although no changes to the contraceptive coverage of antenatal care and the provision of contraception, mix available in the public sector were announced, are included in the UHC SCI, as shown above. Access to potential additions were identified for future consideration. such services have been disrupted by COVID-19 pandemic in Throughout the guidelines, “correct and consistent condom many settings. Routine data, such as the DHIS, should be able use as dual protection for HIV and STI prevention” is to detect reduced coverage fairly quickly, and also enable encouraged. Table 18 shows not only the couple year monitoring of efforts to recover previous levels of service protection rate figures per province and over time (which provision. Based on telephonic survey methods rather than include male and female condom provision), but also the routine data, the NiDS-CRAM panel study reported that 23% of male condom distribution rate, as recorded in DHIS. respondents in wave 1 had experienced difficulty in accessing medicines, condoms or contraception in the preceding Despite media coverage alleging a lack of access to month.44 These data could not, however, be disaggregated by termination of pregnancy (ToP) services, the routine data type of medicine (for example, to focus only on contraceptives). show that the number of ToPs performed in the public sector By contrast, 96% of those with a chronic condition reported in March to September 2020 were not markedly different being able to see a healthcare worker in the same period if from the monthly totals before the lockdown (Figure 22). A needed. The NiDS-CRAM report also included preliminary novel approach to the provision of medical terminations, data from a totally separate effort, based on a sample of using telehealth services, has been demonstrated by a 15 000 new and prospective mothers registered with the private sector provider.84 MomConnect platform (the MATCH 2020 study). In this sample, 11% of mothers reported running out of ART supplies, and 16% Although based on data from the 1998 and 2016 South Africa reported a 2-month or greater gap between visits to a health Demographic and Health Surveys, Statistics South Africa facility. The authors warned, however, that “Estimates from published an analysis focused on maternal health in 2020.85 high-stakes health services such as ART access for pregnant The report showed progress over time and also comparable women may underestimate the broad, population-level statistics to those captured in routine systems. A maternal unintended public health impact of COVID-19.” health issue that has been flagged as critical for future UHC provision is the caesarean section rate.86 Although the data In 2019, The NDoH released updated National presented were only up to 2015, stark differences between Contraception Clinical Guidelines, accompanied by a the public and private sector rates were evident.
Figure 22: Monthly number of ToPs at 0-12 weeks and 13-20 weeks gestation, South Africa
12K
11K 1 534 1 398 1 348 1 464 10K 1 121
9K 1 037 9 194 9 118 9 028 8 613 9 157 930 8K 1 074 814 762 884 7K 7 215 6 876 6 850 6 639 6 793 6K 6 217
5K
4K
3K
2K
1K
0 November December January February March April May June July August September 2019 2019 2020 2020 2020 2020 2020 2020 2020 2020 2020
Termination of pregnancy 0-12 weeks Termination of pregnancy 13-20 weeks
Source: DHIS
Health and Related Indicators 247 Table 18: Reproductive health indicators by province
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Antenatal 1st visit 2017/18 female DHIS 66.6 64.8 65.6 61.4 72.1 63.2 73.8 64.0 66.2 69.7 a before 20 weeks rate 2018/19 female DHIS 68.1 61.7 65.2 64.7 73.2 67.2 75.6 63.1 69.0 70.3 a
2019/20 female DHIS 69.7 62.5 66.6 66.5 74.5 69.0 77.4 65.0 70.9 71.9 a
Antenatal 1st visit 2017/18 female DHIS 77.2 58.6 74.2 85.6 70.3 83.4 89.4 97.5 78.5 79.1 a coverage 2018/19 female DHIS 80.8 65.6 79.2 88.9 74.9 85.7 88.0 107.3 78.1 84.1 a
2019/20 female DHIS 83.1 68.7 79.3 90.2 75.0 90.7 92.7 105.6 77.7 91.1 a
Antenatal 1st visit 2017/18 female DHIS 51.4 38.0 48.7 52.6 50.7 52.7 66.0 62.4 52.0 55.1 a coverage before 20 weeks (index) 2018/19 female DHIS 55.0 40.5 51.6 57.5 54.8 57.6 66.5 63.1 53.9 59.1 a 2019/20 female DHIS 57.9 42.9 52.8 60.0 55.9 62.6 71.7 65.0 55.1 65.5 a
Couple year 2017/18 DHIS 59.5 48.4 66.5 58.4 46.0 70.4 61.9 59.6 56.4 80.9 a protection rate 2018/19 DHIS 60.7 53.2 76.5 54.1 59.2 63.4 64.4 60.6 59.3 75.9 a
2019/20 DHIS 54.5 55.2 78.9 43.7 56.5 55.3 48.2 56.6 62.4 64.5 a
Delivery in facility 2017/18 female DHIS 75.7 58.0 85.7 78.6 67.4 88.1 83.7 97.8 73.1 84.4 a rate 2018/19 female DHIS 78.1 60.2 87.0 79.2 74.3 90.6 85.5 100.3 73.0 86.8 a
2019/20 female DHIS 79.3 61.4 87.5 75.2 78.4 94.9 88.1 98.4 72.9 89.5 a
Male condom 2017/18 DHIS 36.1 28.3 41.0 36.8 22.2 49.9 41.9 30.8 32.9 48.6 a distribution coverage 2018/19 DHIS 36.8 33.3 50.2 32.7 31.5 44.4 43.8 31.4 36.3 42.7 a
2019/20 DHIS 32.1 34.7 52.3 25.1 30.1 35.5 32.8 28.9 38.7 33.2 a
ToPs (Terminations of 2017/18 DHIS 104 660 10 912 7 323 18 942 24 480 9 758 4 331 1 628 6 615 20 671 a Pregnancy) 2018/19 DHIS 116 419 12 267 8 563 20 768 28 595 12 467 5 559 1 621 8 363 18 216 a
2019/20 DHIS 124 446 12 597 7 776 23 048 27 441 14 960 8 127 1 497 9 806 19 194 a
Reference notes a DHIS
Definitions • Antenatal 1st visit before 20 weeks rate [Percentage]: Women • Delivery in facility rate [Percentage]: Deliveries in health who have a booking visit (first visit) before they are 20 weeks facilities as proportion of expected deliveries in the population. (about half way) into their pregnancy as a proportion of all Expected deliveries are estimated as population under 1 year antenatal 1st visits. multiplied by 1.025 to compensate for still births and infant • Antenatal 1st visit coverage [Percentage]: The proportion of mortality. pregnant women coming for at least one antenatal visit. • Male condom distribution coverage [Condoms per male 15+]: • Antenatal 1st visit coverage before 20 weeks (index) [Scale Male condoms distributed from a primary distribution site to 0-100]: Calculated as the product of 2 DHIS indicators 'ANC health facilities or points in the community (e.g. campaigns, 1st visit coverage' and 'ANC 1st visit before 20 weeks rate' to non-traditional outlets, etc.). estimate the proportion of pregnant women who attend ANC • ToPs (Terminations of Pregnancy) [Number]: The number of clinics before 20 weeks gestation. terminations of pregnancy. • Couple year protection rate [Percentage]: Women protected against pregnancy by using modern contraceptive methods, including sterilisations, as proportion of female population 15-49 year. Couple year protection is the total of (Oral pill cycles / 15) + (Medroxyprogesterone injection / 4) + (Norethisterone enanthate injection / 6) + (IUCD x 4.5) + ) + (Sub dermal implant x 2.5) + Male condoms distributed / 120) + (Female condoms distributed / 120) + (Male sterilisation x 10) + (Female sterilisation x 10).
248 South African Health Review 2020 Child health that make up the Children Count dataset, which is accessible As shown in the UHC service coverage index, the combination at www.childrencount.uct.ac.za.90 of reproductive, maternal, newborn and child health measures provide an important indication of health systems Table 19 shows the routine data per province on key performance. Based on 58 countries with at least two measures of child health, as well as those recorded at national surveys since 2008, the Countdown 2030 Coverage the national level in international reports. The National Technical Working Group has identified where progress has Immunisation Coverage Survey has been completed, but the been achieved, but also who is being left behind.87 Areas results are not expected before the end of 2020. that are lagging include child immunisation and the treatment of childhood illnesses. Effective coverage measures should The 2019 Child Gauge highlighted the need to deal incorporate not only the extent to which need is met, but also comprehensively with long term health conditions how quality services are delivered. The WHO- and UNICEF- (LTHC) in children.90 Firstly, it was emphasised that no convened Effective Coverage Think Tank Group has proposed accurate estimate of the number of children with LTHCs an expansion of the cascade of care measures, to incorporate in South Africa was possible. Statistics South Africa’s the following: the target population; the service contact measures of disability exclude children under 5 year coverage; input-adjusted coverage; intervention coverage; of age. However, combining these measures with quality-adjusted coverage; user adherence-adjusted previously reported international figures, it was estimated coverage, and finally outcome-adjusted coverage.88 that 1.15 million children in South Africa had “sensory, developmental, cognitive and motor disabilities, many of Locally, a need to “focus beyond childhood mortality to ensure which are congenital”. In accordance with the International that each child can thrive” has been identified.89 Identified Classification of Functioning (ICF) Framework, disability areas for improvement included environmental conditions is not merely a matter of medical diagnosis, but requires (air pollution, contaminated water and suboptimal sanitation), attention to the child’s level of functioning. This requires access to better-quality diets, improved immunisation consideration not only on the loss or abnormality in body coverage and feeding practices, maximising the contribution function or structure (referred to ‘impairment’), but also of community-based health workers, exploring mHealth to the degree of difficulty experienced by an individual options, and optimising the systems for monitoring child in executing a task or action (‘activity limitation’) and the health outcomes. As always, the annual South African Child extent of difficulty experienced by an individual in everyday Gauge produced by the Children’s Institute at the University life situations (‘participation restriction’). Functioning can of Cape Town, provides a carefully curated set of chapters on be modified by environmental and personal factors. A this key subject. The 2019 edition was sub-titled “Leave no motivated child might, for example, be held back without a one behind”, and presented a subset of the child-centred data supportive home and school environment.
Health and Related Indicators 249 Table 19: Child health indicators by province
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
BCG coverage 2017/18 both sexes DHIS 71.8 60.2 79.4 82.7 63.4 70.7 72.5 102.3 65.5 79.0 a
2018/19 both sexes DHIS 76.0 58.4 86.2 83.3 67.4 95.4 78.6 103.3 60.1 82.4 a
2019 both sexes WHO/ 84.0 b UNICEF
2019/20 both sexes DHIS 85.0 66.5 90.2 91.6 79.3 95.9 93.5 106.4 74.1 92.8 a
Child under 2017/18 both sexes DHIS 28.8 13.2 29.8 19.8 43.2 15.8 7.1 20.6 9.6 86.9 a 5 years 2018/19 both sexes DHIS 27.2 13.8 33.5 17.7 39.3 15.9 4.5 25.6 8.3 84.1 a pneumonia incidence 2019/20 both sexes DHIS 23.6 10.3 32.2 16.8 28.9 14.2 4.0 27.7 8.4 80.8 a
Child under 2016/17 both sexes DHIS 3.4 3.1 4.8 1.9 3.8 4.7 2.3 4.7 6.4 2.2 a 5 years severe 2017/18 both sexes DHIS 2.2 0.7 4.2 1.5 2.4 3.1 1.5 5.1 4.0 2.0 a acute malnutrition incidence 2019/20 both sexes DHIS 1.9 0.8 5.9 1.5 1.9 1.1 0.8 8.3 4.3 1.7 a
Diarrhoea case 2017/18 both sexes DHIS 2.0 3.6 2.5 2.3 2.0 2.6 1.9 1.7 3.1 0.4 a fatality under 2018/19 both sexes DHIS 1.9 3.0 1.1 2.1 2.2 2.2 2.3 2.4 3.4 0.1 a 5 years rate 2019/20 both sexes DHIS 1.8 2.8 0.9 1.7 1.7 2.8 2.1 1.5 2.8 0.2 a
DTaP-IPV-Hib- 2017/18 both sexes DHIS 76.6 63.4 77.9 80.6 75.4 82.6 79.0 95.6 75.9 78.8 a HBV 3rd dose 2018/19 both sexes DHIS 83.0 67.1 78.6 84.2 77.9 97.5 90.4 96.9 77.9 92.9 a coverage 2019/20 both sexes DHIS 84.5 69.8 83.0 90.3 82.3 93.3 90.9 100.5 62.3 96.1 a
DTP3 coverage 2018 both sexes WHO 74.0 c
2019 both sexes WHO/ 77.0 b UNICEF
Immunisation 2017/18 both sexes DHIS 76.9 68.4 71.2 76.8 81.3 70.4 89.7 83.9 69.4 80.9 a under 1 year 2018/19 both sexes DHIS 81.9 71.9 74.8 84.4 90.8 71.0 96.8 87.5 68.4 82.7 a coverage (index) 2019/20 both sexes DHIS 83.5 76.0 77.4 86.9 91.4 73.6 96.6 89.0 63.0 84.9 a
Measles 2nd dose 2017/18 both sexes DHIS 76.4 65.6 69.1 74.7 77.4 84.7 89.2 87.8 72.4 78.3 a coverage 2018 both sexes WHO 50.0 c
2018/19 both sexes DHIS 76.5 65.1 72.1 78.9 77.9 80.5 85.9 86.3 69.0 77.6 a
2019 both sexes WHO/ 54.0 b UNICEF
2019/20 both sexes DHIS 79.6 73.7 73.3 79.8 82.6 79.0 93.9 89.8 66.9 80.0 a
PCV 3rd dose 2017/18 both sexes DHIS 80.9 70.2 73.4 79.3 79.2 92.2 93.8 93.7 74.3 86.8 a coverage 2018 both sexes WHO 73.0 c
2018/19 both sexes DHIS 84.6 73.4 76.6 85.1 90.1 84.6 99.1 95.0 71.6 87.2 a
2019 both sexes WHO/ 76.0 b UNICEF
2019/20 both sexes DHIS 86.5 77.1 78.7 87.5 91.6 90.6 97.7 95.0 65.4 89.4 a
Pneumonia case 2018 both sexes <5 years 2.2 3.2 2.2 2.3 2.1 3.4 2.5 1.9 2.0 0.3 a fatality under smoothed 5 years rate 2018/19 both sexes <5 years 1.9 3.2 1.7 2.8 2.3 3.3 2.7 2.3 2.2 0.2 a DHIS
2019 both sexes <5 years 2.3 3.3 2.2 2.6 2.1 3.7 2.3 1.9 1.6 0.3 a smoothed
2019/20 both sexes <5 years 1.6 3.4 1.8 1.8 2.0 2.7 2.3 1.7 1.2 0.2 a DHIS
2020 both sexes <5 years 2.5 3.6 2.2 3.2 2.2 4.1 2.2 2.0 1.4 0.2 a smoothed
250 South African Health Review 2020 Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Pneumonia case 2018 both sexes <5 years 97.8 96.8 97.8 97.7 97.9 96.6 97.5 98.1 98.0 99.7 a survival under smoothed 5 years rate 2018/19 both sexes <5 years 96.2 93.6 96.6 94.4 95.4 93.4 94.6 95.4 95.6 99.6 a DHIS
2019 both sexes <5 years 97.7 96.7 97.8 97.4 97.9 96.3 97.7 98.1 98.4 99.7 a smoothed
2019/20 both sexes <5 years 96.8 93.2 96.4 96.4 96.0 94.6 95.4 96.6 97.6 99.6 a DHIS
2020 both sexes <5 years 97.5 96.4 97.8 96.8 97.8 95.9 97.8 98.0 98.6 99.8 a smoothed
RV 2nd dose 2017/18 both sexes DHIS 81.7 66.7 75.1 83.1 76.3 100.9 89.5 96.1 75.3 89.8 a coverage 2018/19 both sexes DHIS 81.9 66.2 76.1 86.5 78.6 88.3 91.6 95.0 75.1 92.1 a
2019 both sexes WHO/ 73.0 b UNICEF
2019/20 both sexes DHIS 83.1 68.3 78.4 89.5 80.9 90.0 88.6 96.2 68.7 93.2 a
Severe acute 2017/18 both sexes DHIS 7.4 11.8 7.5 6.2 7.7 5.0 9.1 6.1 8.0 2.2 a malnutrition case 2018/19 both sexes DHIS 7.1 8.9 6.2 6.8 7.8 6.3 9.1 4.3 9.3 1.6 a fatality under 5 years rate 2019/20 both sexes DHIS 7.8 9.9 6.0 6.4 7.6 7.9 10.6 4.7 11.8 1.5 a
Vaccine 2017/18 all programs real 1 742.0 1 708.0 1 699.0 2 146.0 1 777.0 2 133.0 661.7 1 319.0 1 816.0 1 287.0 d expenditure per 2019/20 prices population under 2018/19 all programs real 2 094.0 2 300.0 2 465.0 2 748.0 2 183.0 2 468.0 120.0 1 491.0 1 932.0 1 438.0 d 1 year 2019/20 prices
2019/20 all programs real 2 276.0 3 048.0 2 287.0 2 723.0 2 299.0 2 103.0 2 442.0 700.3 1 056.0 1 519.0 d 2019/20 prices
Reference notes a DHIS b Immunization 202091 c World Health Statistics 202038 d DHB 2019/2022
Definitions • Child under 5 years pneumonia incidence [Cases per • PCV 3rd dose coverage [Percentage]: Children under 1 year 1 000 children]: Children under 5 years newly diagnosed with who received PCV 3rd dose, normally at 9 months as a pneumonia per 1 000 children under 5 years in the population. proportion of population under 1 year. • Child under 5 years severe acute malnutrition incidence [Cases • Pneumonia case fatality under 5 years rate [Percentage]: per 1 000 children]: Children under 5 years newly diagnosed Pneumonia deaths in children under 5 years as a proportion of with severe acute malnutrition per 1 000 children under 5 years pneumonia separations under 5 years in health facilities. in the population. • Pneumonia case survival under 5 years rate [Scale 0-100]: The • Diarrhoea case fatality under 5 years rate [Percentage]: smoothed estimates of the pneumonia CFR were generated Diarrhoea deaths in children under 5 years as a proportion of from the DHIS indicator using a generalised additive model diarrhoea separations under 5 years in health facilities. with thin-plate splines, after removing outlier values. The • DTaP-IPV-Hib-HBV 3rd dose coverage [Percentage]: Children smoothed CFR was then rescaled according to the maximum under 1 year who received DTaP-IPV-Hib-HBV 3rd dose, observed value according to the formula: index = (max CFR normally at 14 weeks as a proportion of population under - CFR) / (max CFR – min CFR)*100. This rescaled value thus 1 year. Both Pentaxim and Hexavalent will form part of the represents a survival rate (the inverse of the case fatality rate). numerator to ensure accurate coverage of historical data. • RV 2nd dose coverage [Percentage]: Children under 1 year • DTP3 coverage [Percentage]: The proportion of children who who received RV 2nd dose as a proportion of children under received their third DTP doses (normally at 14 weeks). 1 year. • Immunisation under 1 year coverage (index) [Scale 0-100]: The • Severe acute malnutrition case fatality under 5 years rate proportion of all children in the target area under one year who [Percentage]: Severe acute malnutrition deaths in children complete their primary course of immunisation. Any implausible under 5 years as a proportion of severe acute malnutrition values (>100) capped at 100, missing values set to 1. (SAM) under 5 years in health facilities. • Measles 2nd dose coverage [Percentage]: Children 1 year • Vaccine expenditure per population under 1 year [Rand per (12 months) who received measles 2nd dose, as a proportion of population U1 (real prices)]: Provincial expenditure on vaccines the 1 year population. per population under 1 year.
Health and Related Indicators 251 Non-communicable diseases screening and access to treatment.100 The targets set for COVID-19 has focused attention on the problem of 2030 are: obesity, which has been identified as a risk factor for • 90% of girls fully vaccinated with the HPV vaccine by poor outcomes.92 Globally it was estimated that 1.7 billion 15 years of age. people have at least one underlying condition that • 70% of women screened using a high-performance test puts them at increased risk of severe COVID-19.93 This by age 35 and again by 45. estimate was most sensitive to the prevalence of chronic • 90% of women identified with cervical disease receive kidney disease, diabetes, cardiovascular disease, and treatment (90% of women with pre-cancer treated and chronic respiratory disease. Based on Western Cape 90% of women with invasive cancer managed). data, diabetes mellitus and hypertension were shown to be associated with an increased risk of mortality from The cervical screening coverage index shown in Table 20 COVID-19.94 The authors of this analysis, however, pointed is based on the updated DHIS measure. In accordance with to the deficiencies in local routine data sources that the 2017 Cervical Cancer Prevention and Control Policy, 80% prevented identification of other potential risk factors. of women aged 30 years and older should be screened for Socio-economic status and body mass index, for instance, cervical cancer every 10 years, and 20% (those estimated to are not routinely recorded. Obesity is a risk factor for be living with HIV) should be screened every 3 years. These both conditions, and has been reported in the SADHS proportions and testing intervals are therefore applied to the 2016 and in the waves of NiDS (with the likelihood of denominator (estimated population in need of screening). increasing prevalence).95 Despite the well-described consequences of obesity, being overweight has been The age-standardised prevalence of non-raised blood described as ‘normalised’ among South Africa’s urban pressure, diabetes treatment coverage and tobacco non- poor, who live in an ‘obesogenic’ environment.96 However, smoking prevalence shown in Table 20 are modelled indices both underweight and overweight can co-exist in the included in the UHC service coverage index, as described same households in South Africa, across a range of socio- above. The table also shows a range of reported prevalence demographic settings.97,98 figures for hypertension and diabetes.
COVID-19 has also disrupted the delivery of healthcare The NCD Alliance has drawn attention to the need to services for the prevention and treatment of non- quantify the extent to which improving NCD management communicable diseases (NCDs).99 In November 2020, can have on other health conditions, including disability.101 WHO launched the Global Strategy to Accelerate the For example, investing in better diabetes prevention and Elimination of Cervical Cancer, which focuses on access to treatment can reduce the burden of vision loss. However, it human papillomavirus (HPV) vaccine coverage, as well as is not possible to disaggregate current NCD prevalence or service access data by disability status.
Table 20: Chronic disease and risk factor indicators by province
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Age-standardised 2018 both sexes 15+ years NiDS 80.5 78.9 77.9 81.8 79.2 83.8 85.2 75.4 81.6 77.1 a prevalence of modelled non-raised blood pressure (index) 2019 both sexes 15+ years NiDS 81.3 79.6 78.6 82.7 79.8 84.2 86.0 76.1 82.4 77.9 a modelled
2020 both sexes 15+ years NiDS 82.0 80.3 79.3 83.5 80.4 84.6 86.7 76.6 83.2 78.6 a modelled
Cervical cancer 2017/18 female DHIS 42.4 44.0 36.0 33.3 53.7 38.8 52.0 29.6 48.0 42.1 b screening coverage (index) 2018/19 female DHIS 45.8 49.9 43.5 36.9 58.4 36.7 61.4 34.3 48.9 41.3 b
2019/20 female DHIS 46.8 50.0 46.0 42.2 55.9 33.3 57.9 32.0 55.9 41.8 b
Diabetes 2018 both sexes 15+ years NiDS 9.7 10.5 10.3 6.9 12.1 9.6 6.9 10.3 6.6 14.4 a prevalence modelled
2019 both sexes 15+ years NiDS 10.0 10.3 11.0 6.8 12.6 11.5 7.4 10.7 6.7 14.6 a modelled
2020 both sexes 15+ years NiDS 10.4 10.1 11.7 6.6 13.2 13.7 8.0 11.2 7.0 15.0 a modelled
252 South African Health Review 2020 Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Diabetes 2018 both sexes 15+ years NiDS 38.4 32.4 36.9 45.7 32.1 36.8 48.4 35.8 40.7 33.1 a treatment modelled coverage 2019 both sexes 15+ years NiDS 37.9 31.7 36.5 45.6 31.9 36.4 48.4 35.1 39.8 31.6 a modelled
2020 both sexes 15+ years NiDS 37.5 31.1 36.0 45.4 31.6 36.0 48.5 34.4 38.8 30.1 a modelled
Hypertension 2011-2016 female 15+ years SADHS 45.5 49.8 54.4 42.3 48.1 34.1 45.8 52.9 40.0 51.6 c prevalence male 15+ years SADHS 43.7 47.3 48.2 39.5 47.5 28.8 46.1 52.3 37.0 58.7 c
2017 both sexes 15+ years NiDS 28.2 28.0 33.2 27.0 27.8 22.6 22.4 37.0 31.2 35.5 d
female 15+ years NiDS 29.0 28.8 36.7 27.6 29.5 23.9 21.3 35.4 30.2 35.9 d
male 15+ years NiDS 27.4 27.1 29.0 26.4 25.6 20.8 23.6 38.7 32.3 35.1 d
Hypertension 2015 both sexes all ages med 165.0 e prevalence schemes all beneficiaries (per 1 000) 2016 both sexes all ages med 168.9 e schemes all beneficiaries
2017 both sexes all ages med 138.2 f schemes all beneficiaries
Obesity 2011-2016 female 15+ years SADHS 41.0 g
male 15+ years SADHS 11.0 g
2017 both sexes 0-14 years NiDS 5.6 6.2 6.5 5.2 5.7 4.1 4.1 4.7 4.2 9.3 d
both sexes 15+ years NiDS 26.4 27.1 30.2 26.0 27.9 21.5 21.7 24.3 25.8 30.5 d
both sexes 15+ years NiDS 25.3 25.9 28.1 25.3 27.8 20.7 20.8 22.7 24.5 28.1 d age-standardised
both sexes <5 years NiDS 4.2 7.9 2.3 4.0 5.4 2.1 0.9 3.0 4.8 2.9 d
female 0-14 years NiDS 5.6 5.7 9.5 4.5 5.1 2.9 4.3 5.0 6.3 10.9 d
female 15+ years NiDS 39.9 40.4 44.0 40.8 43.2 31.3 33.8 36.4 38.3 42.9 d
female <5 years NiDS 3.5 3.9 2.0 3.3 4.6 1.7 1.6 4.5 7.4 2.9 d
male 0-14 years NiDS 5.6 6.8 3.4 5.9 6.3 5.2 4.0 4.4 1.9 7.8 d
male 15+ years NiDS 10.9 10.5 13.8 10.8 8.0 9.1 9.1 12.2 13.5 15.4 d
male <5 years NiDS 4.9 12.6 2.7 4.7 6.1 2.4 0.0 1.8 2.0 2.8 d
Percentage of 2017 both sexes 15+ years NiDS 48.2 48.1 50.6 47.8 50.6 44.7 44.6 45.6 47.2 51.4 d adults overweight age-standardised or obese
Prevalence of 2012 SANHANES raised SYS 10.2 10.4 17.3 11.4 8.4 6.6 9.1 10.8 13.0 9.4 h raised blood and DIA pressure SANHANES raised SYS or 26.6 27.1 30.5 27.3 26.4 20.7 20.9 23.5 29.9 30.7 h DIA or both
2015 both sexes 18+ years WHO 26.9 i
2016 female 15+ years SADHS 36.3 42.5 42.3 31.2 40.1 25.3 41.3 45.6 28.4 40.2 c
male 15+ years SADHS 38.2 42.4 41.6 34.4 42.0 23.9 42.9 45.8 29.4 50.9 c
Health and Related Indicators 253 Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Suicide mortality 2015 both sexes vital registration 1.3 k rate (per 100 000 population) 2016 both sexes WHO 11.6 j
female WHO 4.7 j
male WHO 18.7 j
Tobacco 2018 both sexes 15+ years NiDS 81.5 81.9 79.7 79.9 87.7 88.8 84.4 69.6 80.9 69.4 a non-smoking modelled prevalence (index) 2019 both sexes 15+ years NiDS 81.5 81.8 79.6 79.8 87.8 88.8 84.4 69.5 80.7 70.0 a modelled
2020 both sexes 15+ years NiDS 81.5 81.6 79.5 79.7 87.9 88.9 84.4 69.3 80.5 70.5 a modelled
Reference notes: a DHB 2019/2022 b DHIS c SADHS 2016 Full Report102 d NiDS Wave 5 v1.0103 e Medical Schemes 2016-17104 f Medical Schemes 2017-18105 g SADHS 2016 Key Indicators106 h SANHANES-121 i World Health Statistics 202038 j World Health Statistics 2019107 k SDG SA report 201962
Definitions • Age-standardised prevalence of non-raised blood pressure • Hypertension prevalence [Percentage]: Percentage of people (index) [Scale 0-100]: Percentage of population 15 years and with hypertension, where hypertension is usually defined as older with non-raised blood pressure, regardless of treatment individuals with systolic blood pressure >=140 mHg and/or status, age-standardised (Census 2011 population). diastolic blood pressure >=90 mmHg and/or who reported the • Cervical cancer screening coverage (index) [Scale 0-100]: current use of antihypertensive medication. Cervical smears in women 30 years and older as a proportion • Obesity [Percentage]: Percentage of people with a body mass of the female population 30 years and older. 80% of these index (BMI) (body mass in kg divided by the square of the women should be screened for cervical cancer every 10 years height in m) equal to or more than 30kg/m2. and 20% must be screened every 3 years which should be • Percentage of adults overweight or obese [Percentage]: included in the denominator because it is estimated that 20% Percentage of adults (15+ years) who are either overweight or of women 30 years and older are HIV positive. Any implausible obese according to standard BMI cut-offs. values (>100) capped at 100, missing values set to 1. • Prevalence of raised blood pressure [Percentage]: Percentage • Diabetes prevalence [Percentage]: Percentage of people with of people with systolic blood pressure >=140 mmHg or diastolic diabetes. Defined in SANHANES as those with HbA1c > 6.5% blood pressure >=90 mmHg. • Diabetes treatment coverage [Percentage]: Percentage of • Suicide mortality rate (per 100 000 population) [per 100 000 people with diabetes receiving treatment. population]: Suicide rate per 100 000 population in a specified • Hypertension prevalence (per 1 000) [per 1 000 population]: period (age-standardised). Number of people with hypertension per 1 000 people in the • Tobacco non-smoking prevalence (index) [Percentage]: target population. Data for the private sector are based on the Percentage of adults 15+ years who are non-smokers, or who number of people being TREATED for this condition. have not smoked tobacco in the previous 30 days. Calculated as (100 - smoking prevalence).
Injuries and risk behaviours were readily available. South Africa will be included in the COVID-19 has also highlighted the contribution of unsafe Global Adult Tobacco Survey (GATS) for the first time in alcohol use to the burden of disease in South Africa, 2021.108 The plan is to survey more than 11 000 households including to trauma. The updated figures on road traffic between March and May 2021 about tobacco use, exposure accidents shown in Table 21 would not, however, show the to second-hand smoke, attempts to quit, and awareness impact of the reduced traffic volumes, or the restrictions of anti-smoking campaigns. Data for South Africa included on alcohol sales during the initial stages of the national in the 2019 WHO global report on trends in prevalence of lockdown. Whether smoking prevalence changed during tobacco use remain those from the SADHS 2016.109 this time is open to question, as alternative source of supply
254 South African Health Review 2020 Table 21: Injury and risk behaviour indicators by province
Indicator Period Sex|Age|Series|Cat SA EC FS GP KZ LP MP NC NW WC Ref
Prevalence of 2016 both sexes 15+ 22.6 24.2 24.4 22.0 18.7 14.2 23.1 33.1 18.3 34.8 a smoking years SADHS
both sexes WHO 20.7 b
female 15+ years 7.8 7.5 8.0 6.5 2.3 2.0 6.0 21.4 4.6 26.4 a SADHS
female WHO 8.1 b
male 15+ years 37.3 41.0 40.9 37.6 35.2 26.4 40.2 44.9 32.0 43.2 a SADHS
male WHO 33.2 b
2017 both sexes 15+ 19.3 16.6 19.7 21.4 12.8 12.1 18.0 33.2 19.8 30.6 c years NiDS
2018 both sexes 15+ 31.4 d years WHO
Road accident 2017 both sexes all ages 24.9 e fatalities per RTMC 100 000 population 2018 both sexes all ages 22.3 24.9 32.6 17.2 22.0 27.4 28.9 27.9 24.6 15.8 f RTMC
2019 both sexes all ages 21.3 23.8 29.5 16.2 20.5 25.7 29.1 30.1 21.2 17.1 f RTMC
Road traffic 2018 both sexes all ages 12 921 1 675 945 2 539 2 473 1 581 1 313 352 979 1 064 f fatalities RTMC
2019 both sexes all ages 12 503 1 603 860 2 453 2 331 1 496 1 343 384 855 1 178 f RTMC
Total alcohol 2016 both sexes 15+ 9.3 b per capita years WHO (age 15+ years) consumption female 15+ years 2.7 b (litres per year) WHO male 15+ years 16.2 b WHO
2017 both sexes 15+ 7.3 e years SAWIS
2018 both sexes WHO 9.5 d
Reference notes a SADHS 2016 Full Report102 b World Health Statistics 2019107 c NiDS Wave 5 v1.0103 d World Health Statistics 202038 e SDG SA report 201962 f Road Traffic report 2019110
Definitions • Prevalence of smoking [Percentage]: Proportion of population taxed and is outside the usual system of government control. who currently smoke. This indicator is also known as “Current In circumstances in which the number of tourists per year is smokers (%)”. at least the number of inhabitants, tourist consumption is also • Total alcohol per capita (age 15+ years) consumption (litres per taken into account and is deducted from a country's recorded year) [litres per person]: Total alcohol per capita is the total alcohol per capita." amount (sum of recorded alcohol per capita three-year average • Road traffic fatalities [No]: Number of people killed during or and unrecorded alcohol per capita) of alcohol consumed per immediately after a crash, or death within 30 days after a crash adult (15+ years) in a calendar year, in litres of pure alcohol. happened as a direct result of such crash. Recorded alcohol consumption refers to official statistics • Road accident fatalities per 100 000 population [per 100 000 (production, import, export, and sales or taxation data), while population]: Number of fatalities due to road accidents per unrecorded alcohol consumption refers to alcohol which is not 100 000 population.
Health and Related Indicators 255 admissions with COVID-19 to the NICD. Other private hospitals Health services indicators have subsequently joined. Although the DATCOV reports have focused on a narrow range of measures (such as the Health facilities number of admissions in general wards, high care facilities and intensive care units; the number requiring oxygen therapy The routine health services indicators reported in DHIS cannot or mechanical ventilation), the full set of variables captured is be disaggregated to show the extent to which the needs of extensive. Demographic variables have included occupation people with disabilities are met. The national policy document as a healthcare worker. Important co-morbidities are captured in this regard notes “poor access to a comprehensive disability (hypertension, diabetes mellitus, chronic cardiac disease, and rehabilitation service especially to persons in rural and chronic pulmonary disease, asthma, chronic renal disease, disadvantaged areas”.10 The contribution of inaccessible malignancy within past 5 years, HIV, current tuberculosis (TB), and unaffordable transport, and the costs incurred in past TB, obesity). Data on treatments are captured, as well as reaching health facilities also need to be considered. Within complications and clinical outcomes. health facilities, the barriers include inappropriate facility infra-structure and a lack of signage and information in an The routine indicators of health service utilisation shown in appropriate medium (including sign language and Braille). Table 22 cannot depict the impact of COVID-19 on access, Inter-sectoral action is key to comprehensive community-based as yet. PHC headcounts and utilisation rates might have rehabilitation (CBR). No easily accessible measure of the extent been impacted by the national lockdown. Data from the of access to health services for persons with disabilities exists. Africa Health Research Institute Health and Demographic This includes not only access to specialised rehabilitation Surveillance System, showed that the ambulatory healthcare services, but also access to routine health services. Routine system in a rural setting was largely resilient during the health service provision measures (such as PHC headcount) national-wide lockdown, although child healthcare visits are not stratified by disability status. initially declined.113 From April 2020, the age bands recorded will be expanded to include under-5s, 5-9 years, 10-19 years, Although the number of beds in public sector hospitals, at all and 20 years and older. Routine measures of in-patient levels of care and specialisation, are reported on a regular admissions would also not easily show the effect of delaying basis, the same cannot be said of the private sector. Although or cancelling elective procedures, obscured by the number the need to harness the full health capacity of the country of COVID-19 admissions. A retrospective analysis in North has been recognised in the planning for NHI, the potential West showed that, even when the incidence of COVID-19 contribution of private hospitals gained added prominence was minimal, the lockdown was associated with a significant during the COVID-19 pandemic. A striking development has reduction in surgical admissions.114 Both trauma-related and been the level of voluntary reporting to the DATCOV database non-trauma surgical admissions were affected. created by the National Institute for Communicable Diseases. DATCOV presents data on the admission of patients with The COVID-19 pandemic has also raised the profile of the laboratory-confirmed COVID-19 in selected hospitals.111 The International Health Regulations (2005) and countries’ report for 15 November, for example, included data from capacity to meet their international obligations. There have 604 facilities across both sectors.112 As early as 6 April 2020, also been calls to strengthen the IHR, and hence global the major hospital groups (Netcare, Life Healthcare, solidarity in responding to future health challenges.115 Mediclinic, National Hospital Network, Clinix Health Group, Lenmed) were reporting the majority of all private sector
256 South African Health Review 2020 f c c a a a a a a a a a a a a a a a a a a a a a a e g b d d d Ref 5 0 74 33 60 5.3 3.0 2.9 2.9 5.5 5.6 193 272 WC 84.5 86.6 86.9 1 438 1 799 1 026 2 974 2 359 9 868 3 0 13 18 47 6.1 7.2 6.8 5.5 5.9 6.9 72.1 830 77.5 266 NW 73.8 1 236 1 396 1 206 4 668 1 8 0 11 5.1 33 113 4.7 4.9 5.2 5.2 5.0 128 601 NC 61.7 227 656 58.3 60.4 1 597 3 0 23 25 56 4.8 4.5 4.6 4.9 4.6 5.0 461 774 877 MP 237 63.6 64.5 65.8 4 948 2 836 5 0 18 30 62 26 LP 4.8 4.8 4.8 5.3 5.4 5.5 75.1 987 455 74.2 74.9 1 019 1 554 7 857 4 235 0 13 39 88 22 4.7 4.6 6.8 6.8 6.6 KZ 5.0 461 846 598 63.7 65.4 65.0 1 637 2 433 8 266 6 985 20 628 9 0 12 5.1 40 6.7 6.7 4.5 5.0 6.0 165 GP 328 80.7 78.8 82.0 2 151 1 453 4 823 6 305 2 626 17 358 4 0 31 10 4.1 25 4.3 FS 4.9 5.5 5.6 5.6 760 636 588 209 72.4 73.9 38.6 1 694 1 230 4 908 5 0 41 39 65 7.3 5.8 5.8 6.8 6.8 6.2 EC 733 576 64.8 64.6 64.0 1 316 1 759 1 429 2 105 6 046 13 231 0 6.1 48 4.8 4.6 4.6 6.2 6.0 SA 251 67.7 349 452 91.0 97.0 72.4 72.5 70.0 94.0 92.0 95.0 96.0 96.0 66.0 3 147 3 439 10 722 10 067 10 092 30 674 85 063 20 069 Sex|Age|Series|Cat DHIS DHIS DHIS 15+ years vital both sexes registration 15+ years WHO both sexes 15+ years vital both sexes registration female 15+ years vital registration male 15+ years vital registration vital registration both sexes DHIS DHIS DHIS DHIS both sexes DHIS both sexes DHIS both sexes WHO WHO WHO DHIS Central Hospital DHIS District Hospital DHIS Provincial Hospital DHIS public sector Hospital DHIS Regional DHIS specialised psychiatric DHIS specialised TB Hospital DHIS Central/Tertiary DHIS CHC/CDC DHIS Clinic DHIS District Hospital DHIS Other hospitals Hospital DHIS Regional 2017 2018 2015 2016 2019 Period 2017/18 2017/18 2017/18 2018/19 2018/19 2018/19 2019/20 2019/20 2019/20 Mar 2020 Mar 2020 2010-2017 2007-2016 Indicator Average length of Average stay – total Death registration coverage Inpatient bed utilisation rate – total Inpatient crude death rate International Health (IHR) Regulations core capacity index Number of beds Number of health facilities Table 22: Health services indicators by province by 22: Health services indicators Table
Health and Related Indicators 257 a a a a a a a a a a a a a a a a a a a a a a Ref 3.7 3.8 3.8 2.2 2.2 2.2 11.3 12.3 13.0 WC 2 078 417 2 031 975 1 386 403 1 455 965 12 108 071 4 297 493 4 344 306 2 070 227 12 012 477 4 236 460 14 349 437 12 273 033 14 082 704 1.9 1.9 1.9 3.3 3.3 3.4 46.1 NW 38.2 45.8 1 312 151 387 835 428 439 1 610 459 1 290 130 1 605 401 1 333 974 6 374 431 7 714 952 1 676 989 6 155 833 6 130 252 7 445 963 4.3 4.3 4.4 2.2 2.2 2.2 NC 64.9 60.8 63.0 192 102 573 412 579 169 449 974 562 637 465 326 450 558 200 939 2 718 912 2 223 741 2 279 773 2 728 252 2 268 354 2.1 2.1 3.9 3.9 3.9 2.0 MP 57.4 56.5 56.5 1 710 321 1 897 671 7 514 391 1 213 878 1 991 857 7 512 561 1 234 512 7 436 251 1 723 909 9 253 361 9 220 716 1 740 800 1 869 054 LP 4.4 4.4 2.4 2.4 4.6 2.5 67.4 65.4 66.4 1 757 156 1 726 936 3 013 760 3 010 254 11 409 321 3 009 770 11 407 847 3 057 930 2 936 295 2 926 909 14 347 755 11 800 460 14 336 230 2.4 3.5 3.5 3.5 2.5 2.5 KZ 47.4 48.7 48.2 7 143 300 7 100 648 7 054 777 4 640 618 4 691 885 2 527 457 4 598 365 2 579 960 23 833 478 23 762 730 23 767 046 28 353 937 28 525 363 1.5 1.5 1.5 2.9 2.9 2.9 GP 32.3 30.8 30.6 982 478 1 031 431 7 315 156 3 672 144 7 467 109 3 715 836 7 521 238 3 623 737 21 309 158 17 507 927 17 363 822 17 648 204 21 079 658 3.1 3.1 1.8 1.8 1.9 FS 3.0 57.7 57.3 57.4 825 190 833 807 523 073 845 825 550 806 4 540 511 1 976 246 2 126 047 2 172 659 4 465 459 4 636 930 5 303 035 5 299 266 3.1 2.3 2.3 3.0 3.0 2.2 EC 47.3 47.2 50.0 1 715 092 2 524 151 2 541 601 4 387 716 1 706 494 2 544 587 4 328 460 4 295 480 13 898 719 13 876 432 16 420 094 14 060 982 16 605 569 2.1 2.1 3.4 3.5 3.5 2.0 SA 47.0 46.7 46.5 10 667 291 32 512 977 32 461 949 32 192 598 20 149 466 10 933 666 119 747 336 99 482 794 20 222 437 20 264 739 99 703 955 99 082 287 119 347 026 Sex|Age|Series|Cat 118 116 55 38 107 117 DHIS DHIS DHIS DHIS DHIS District Hospital DHIS DHIS DHIS District Hospital all ages DHIS both sexes all ages DHIS both sexes DHIS both sexes DHIS both sexes DHIS both sexes DHIS both sexes DHIS both sexes DHIS both sexes DHIS DHIS DHIS DHIS DHIS DHIS Period 2017/18 2017/18 2017/18 2017/18 2017/18 2017/18 2018/19 2018/19 2018/19 2018/19 2018/19 2018/19 2018/19 2019/20 2019/20 2019/20 2019/20 2019/20 2019/20 2019/20
Stats SA Causes of death 2015 SA Stats 2018 Health Statistics World Causes of death 2016 SA Stats Causes of death 2017 SA Stats 2019 Health Statistics World 2020 Health Statistics World Indicator OPD new client not referred rate Day Patient Equivalent PHC headcount total PHC headcount 5 years and older PHC headcount under 5 years PHC utilisation rate PHC utilisation rate under 5 years Reference notes Reference a DHIS b c d e f g
258 South African Health Review 2020 Definitions • Average length of stay – total [Days]: The average (7) Human resources; (8) Laboratory; (9) Points of entry; number of patients days that an admitted patients (10) Zoonotic events; (11) Food safety; (12) Chemical spends in hospital before separation. events; (13) Radionuclear emergencies. • Death registration coverage [Percentage]: Percentage • Number of beds [Number]: Total number of beds in of deaths that are registered (with age and sex). health facility. • Inpatient bed utilisation rate – total [Percentage]: A • Number of health facilities [Number]: measure of the average number of beds that are • OPD new client not referred rate [Percentage]: New occupied – expressed as the proportion of all available OPD clients not referred as a proportion of OPD new bed days, which is calculated as the number of actual clients – total. beds multiplied by the average number of days in a • Patient Day Equivalent [Number]: The sum of Inpatient month (30.42). days total x 1, Day patient total x 0.5, and OPD/ • Inpatient crude death rate [Percentage]: Proportion of Emergency total headcount x 0.3333333. admitted clients/separations who died during hospital • PHC headcount 5 years and older [Number]: stay. Inpatient separations is the total of day clients, • PHC headcount under 5 years [Number]: All individual inpatient discharges, inpatient deaths and inpatient clients not yet reached five years (60 months) seen for transfer outs. Primary Health Care services at a facility. • International Health Regulations (IHR) core capacity • PHC utilisation rate [Average number of visits per index [Percentage]: Percentage of attributes of 13 person]: Average number of PHC visits per person per core capacities that have been attained at a specific year in the population. point in time. The 13 core capacities are: (1) National • PHC utilisation rate under 5 years [Average number of legislation, policy and financing; (2) Coordination and visits per person under 5 years]: Average number of National Focal Point communications; (3) Surveillance; PHC visits per year per person under 5 years of age in (4) Response; (5) Preparedness; (6) Risk communication; the population.
Health personnel public and private sectors. The need for an effective The number of health personnel practising in the public track-and-trace system has also focused attention on the sector is a key measure of health systems capacity. Table 23 role of community health workers, who remain outside of and Table 24 rely on a revised time series, but depict only the public service. No data on the number of community the 2009 and 2020 figures from that series, at the national health workers currently deployed are therefore recorded and provincial levels. Data on the health professions that are in PERSAL. An economic analysis, based on the ward- specifically engaged in meeting the needs of people with based outreach teams (WBOTs) in two districts (Sedibeng disabilities are provided in the section on Disability. and UMzinyathi), has shown how the resource needs for such services differ between rural, deep-rural and peri- COVID-19 has placed extraordinary demands on health urban settings.119 personnel at all levels of the health system, across both
Health and Related Indicators 259 Table 23: Number of health personnel practising in the public sector by province
Indicator Period SA EC FS GP KZ LP MP NC NW WC Ref
Number of clinical associates 2020 Mar 393 113 17 35 111 10 75 2 30 a
Number of CS clinical 2009 Mar 19 2 7 3 6 1 a psychologists 2020 Mar 66 3 3 39 7 3 0 1 3 7 a
Number of CS dentists 2009 Mar 52 17 22 13 a
2020 Mar 197 21 27 15 46 14 16 15 27 16 a
Number of CS dieticians 2009 Mar 55 4 24 14 13 a
2020 Mar 227 20 23 54 35 18 24 14 31 8 a
Number of CS doctors 2009 Mar 611 127 4 92 94 85 209 a
2020 Mar 1 527 160 62 253 252 165 209 76 149 201 a
Number of CS environmental 2009 Mar 24 0 18 6 a health practitioners 2020 Mar 182 3 23 43 4 47 15 13 34 a
Number of CS nurses 2009 Mar 2 012 496 21 513 372 86 49 26 138 311 a
2020 Mar 3 109 642 120 628 479 108 340 100 326 366 a
Number of CS occupational 2009 Mar 43 8 1 14 12 8 a therapists 2020 Mar 289 36 25 74 65 13 26 22 14 14 a
Number of CS optometrists 2009 Mar 15 14 1 a
Number of CS pharmacists 2009 Mar 107 7 3 29 27 41 a
2020 Mar 612 66 45 91 134 67 48 40 83 38 a
Number of CS physiotherapists 2009 Mar 47 17 17 13 a
2020 Mar 352 35 29 94 73 8 36 24 29 24 a
Number of CS radiographers 2009 Mar 21 11 5 5 a
2020 Mar 367 29 17 94 81 24 34 14 37 37 a
Number of CS speech therapists 2009 Mar 30 13 13 4 a
2020 Mar 247 18 8 61 70 12 40 10 20 8 a
Number of dental practitioners 2009 Mar 730 90 59 202 72 68 74 22 26 117 a
2020 Mar 1 044 145 50 242 103 168 88 23 56 169 a
Number of dental specialists 2009 Mar 48 1 34 8 1 2 2 a
2020 Mar 152 1 1 113 2 1 1 33 a
Number of dental therapists 2009 Mar 160 6 3 30 30 55 16 2 15 3 a
2020 Mar 359 18 1 42 100 132 26 24 14 2 a
Number of enrolled nurses 2009 Mar 22 882 2 196 434 3 639 9 434 2 757 1 345 179 757 2 141 a
2020 Mar 29 638 3 321 1 033 7 188 8 939 3 591 1 639 238 962 2 727 a
Number of environmental health 2009 Mar 713 149 47 68 175 145 87 14 19 9 a practitioners 2020 Mar 362 20 50 98 82 26 45 11 30 a
Number of medical practitioners 2009 Mar 10 261 1 134 607 1 967 3 115 826 601 297 466 1 248 a
2020 Mar 15 474 1 906 637 3 749 3 725 1 224 895 337 876 2 125 a
Number of medical researchers 2009 Mar 81 9 17 14 4 0 1 36 a
2020 Mar 33 2 2 14 5 2 1 7 a
260 South African Health Review 2020 Indicator Period SA EC FS GP KZ LP MP NC NW WC Ref
Number of medical specialists 2009 Mar 4 025 184 372 1 421 552 103 49 21 51 1 272 a
2020 Mar 4 835 228 317 1 850 837 77 72 45 152 1 257 a
Number of nursing assistants 2009 Mar 33 653 5 176 2 332 5 364 6 515 4 686 2 199 780 2 661 3 940 a
2020 Mar 33 600 5 395 2 023 6 431 5 840 4 623 1 477 822 2 768 4 221 a
Number of occupational 2009 Mar 765 74 61 153 127 87 61 28 26 148 a therapists 2020 Mar 1 003 117 50 205 126 207 68 32 48 150 a
Number of optometrists and 2009 Mar 91 1 7 10 14 55 4 0 a opticians 2020 Mar 255 8 5 55 60 111 7 2 5 2 a
Number of pharmacists 2009 Mar 1 748 204 93 269 415 191 98 59 71 348 a
2020 Mar 5 337 865 315 1 169 813 520 304 103 259 989 a
Number of physiotherapists 2009 Mar 896 98 73 169 236 84 40 50 23 123 a
2020 Mar 1 110 147 48 194 244 158 76 31 71 141 a
Number of professional nurses 2009 Mar 47 152 7 388 1 883 7 448 11 964 6 779 3 474 1 194 2 911 4 111 a
2020 Mar 70 437 11 091 2 104 14 001 16 772 9 109 5 799 1 491 4 846 5 224 a
Number of psychologists 2009 Mar 458 53 32 159 71 36 11 6 12 78 a
2020 Mar 637 67 27 191 61 120 32 15 43 81 a
Number of radiographers 2009 Mar 2 107 308 171 456 458 149 71 39 55 400 a
2020 Mar 2 716 375 147 650 600 198 119 74 113 440 a
Number of speech therapists 2009 Mar 324 26 16 82 83 31 29 18 6 33 a and audiologists 2020 Mar 502 47 9 131 92 69 39 15 27 73 a
Number of student nurses 2009 Mar 10 641 1 738 4 4 339 2 189 817 513 15 1 026 a
2020 Mar 2 765 1 593 458 155 552 7 a
Reference notes a PERSAL.120
Table 24: Health personnel (public sector) per 100 000 uninsured population by province
Indicator Period SA EC FS GP KZ LP MP NC NW WC Ref
Clinical Associates per 2020 Mar 0.8 1.9 0.7 0.3 1.1 0.2 1.8 0.2 0.8 a 100 000 population
Dental practitioners per 2009 Mar 1.8 1.5 2.5 2.3 0.8 1.7 2.8 2.3 1.3 2.6 a 100 000 population 2020 Mar 2.5 2.7 3.1 2.2 1.5 3.2 2.5 3.5 2.3 3.3 a
Dental specialists per 2009 Mar 0.1 0.0 0.4 0.1 0.0 0.1 0.0 a 100 000 population 2020 Mar 0.3 0.0 0.0 1.0 0.0 0.0 0.1 0.6 a
Dental therapists per 2009 Mar 0.4 0.1 0.1 0.3 0.3 1.1 0.5 0.2 0.5 0.1 a 100 000 population 2020 Mar 0.7 0.3 0.0 0.4 1.0 2.4 0.6 2.2 0.4 0.0 a
Enrolled nurses per 2009 Mar 53.3 37.2 18.2 40.9 104.8 54.7 39.3 18.8 25.3 47.6 a 100 000 population 2020 Mar 58.6 54.8 41.2 61.0 88.0 64.1 40.0 21.9 26.6 48.8 a
Environmental health 2009 Mar 1.7 2.5 2.0 0.8 1.9 2.9 3.1 1.5 0.8 0.2 a practitioners per 100 000 population 2020 Mar 1.1 0.4 2.9 1.2 0.9 1.3 1.5 2.2 1.8 a
Health and Related Indicators 261 Indicator Period SA EC FS GP KZ LP MP NC NW WC Ref
Health worker density 2009 Mar 9.4 8.8 8.1 7.4 11.3 9.0 8.0 11.8 7.8 11.8 a (rescaled) 2020 Mar 15.6 18.9 13.3 14.4 16.0 14.2 13.2 16.9 13.7 17.2 a
Medical practitioners per 2009 Mar 25.3 21.4 25.4 22.1 34.6 18.2 20.3 31.1 18.4 32.4 a 100 000 population 2020 Mar 33.6 34.1 27.9 33.9 39.1 24.8 27.0 37.9 28.3 41.6 a
Medical researchers per 2009 Mar 0.2 0.4 0.2 0.2 0.1 0.0 0.1 0.8 a 100 000 population 2020 Mar 0.1 0.0 0.1 0.1 0.1 0.0 0.1 0.1 a
Medical specialists per 2009 Mar 9.4 3.1 15.6 16.0 6.1 2.0 1.4 2.2 1.7 28.3 a 100 000 population 2020 Mar 9.6 3.8 12.6 15.7 8.2 1.4 1.8 4.1 4.2 22.5 a
Nursing assistants per 2009 Mar 78.4 87.8 97.7 60.2 72.3 93.0 64.3 81.8 88.8 87.7 a 100 000 population 2020 Mar 66.4 89.1 80.6 54.5 57.5 82.5 36.1 75.5 76.5 75.5 a
Occupational therapists per 2009 Mar 1.9 1.4 2.6 1.7 1.4 2.0 2.1 2.9 1.1 3.3 a 100 000 population 2020 Mar 2.6 2.5 3.0 2.4 1.9 3.9 2.3 5.0 1.7 2.9 a
Optometrists per 2009 Mar 0.3 0.0 0.3 0.1 0.2 1.4 0.2 0.0 a 100 000 population 2020 Mar 0.5 0.1 0.2 0.5 0.6 2.0 0.2 0.2 0.1 0.0 a
Pharmacists per 2009 Mar 4.3 3.6 3.9 3.1 4.6 4.4 3.7 6.2 3.7 7.7 a 100 000 population 2020 Mar 11.8 15.4 14.3 10.7 9.3 10.5 8.6 13.1 9.5 18.4 a
Physiotherapists per 2009 Mar 2.2 1.7 3.1 1.9 2.6 2.0 1.7 5.2 1.2 2.7 a 100 000 population 2020 Mar 2.9 3.0 3.1 2.4 3.1 3.0 2.7 5.0 2.8 3.0 a
Professional nurses per 2009 Mar 114.5 133.7 79.8 89.4 137.0 136.3 103.0 127.9 101.7 98.4 a 100 000 population 2020 Mar 145.4 193.8 88.7 124.1 169.8 164.5 149.9 146.1 142.9 100.0 a
Psychologists per 2009 Mar 1.1 0.9 1.3 1.8 0.8 0.9 0.4 0.6 0.6 1.8 a 100 000 population 2020 Mar 1.4 1.2 1.2 2.0 0.7 2.2 0.8 1.5 1.3 1.6 a
Radiographers per 2009 Mar 5.0 5.2 7.2 5.1 5.1 3.2 2.2 4.1 2.0 8.9 a 100 000 population 2020 Mar 6.1 6.7 6.5 6.3 6.7 4.0 3.7 8.1 4.1 8.5 a
Speech therapists and 2009 Mar 0.8 0.4 0.7 0.9 0.9 0.9 1.2 1.9 0.3 0.7 a audiologists per 100 000 population 2020 Mar 1.5 1.1 0.7 1.6 1.6 1.4 1.9 2.3 1.3 1.4 a
Student nurses per 100 000 2009 Mar 24.8 29.5 0.2 48.7 24.3 16.2 15.0 1.6 34.2 a population 2020 Mar 5.5 13.5 4.5 2.8 13.5 0.2 a
Reference notes a PERSAL.120
Definitions • Health worker density (rescaled) [Scale 0-100]: An indicator • All other indicators are calculated as the number of based on SDG indicator 3.c.1 with a modified scaling approach the specified cadre of health professional per 100 000 as described by Lozano et al. 2018. Medical practitioners, uninsured population, as calculated using the DHIS 2000-30 professional nurses and pharmacists per uninsured population population time series29 and the Insight Actuaries modelled were rescaled from 0-100 against thresholds of 30, 100 and estimates for medical schemes coverage35 at district level 5 per 10 000. The index was calculated as the geometric mean circa 2018. of the 3 scaled scores.
262 South African Health Review 2020 Health financing These fairly consistent long term trends in expenditure To ensure that ‘no one is left behind’ requires firstly that indicators may well differ next year, following the dramatic subnational expenditure data are published, and secondly impact of COVID-19 on utilisation patterns as well as shifting that spending is targeted to provide consistently more allocation of expenditure to deal with acute priorities in resources for the worst-performing regions.121 This is one South Africa and virtually every other country.123,124,125 It will of the core analyses included annually in the District be important to ensure that enduring inequities between Health Barometer, providing the evidence for planning facilities across the country have not been exacerbated, and budgeting. It is not possible, however, to disaggregate and that allocations for key services, infrastructure and expenditure per capita by disability status. maintenance are strategically budgeted for, in a climate of severe fiscal austerity.126 Overall provincial and local government expenditure on health in the public sector has more than doubled in nominal One of the issues brought into the spotlight is the need to terms from R101 billion in 2010/11 to R216 billion in 2019/20 acknowledge and standardise resourcing for community (Table 25). District Health Services (DHS) expenditure has health workers, while recognising the differing geographic increased as a proportion of this total to 46.8% in 2019/20, a needs.119 greater proportion than both Provincial and Central hospital services combined.122 Gauteng has the lowest proportion of The COVID-19 pandemic has certainly highlighted the need expenditure on DHS and increasing expenditure on central to constantly improve the timeliness and utility of information services (Figure 23). In-migration and rapid growth in the systems (including financial management) to manage critical uninsured population in Gauteng also contribute to the decision making including resource allocation, efficiency, low DHS per capita expenditure in this province (R1 621 in oversight and prevention of corruption, in order that the 2019/20), compared to Limpopo (R2 492). The proportion of health system can adapt and be agile in responding to both DHS expenditure on HIV/AIDS has increased steadily over chronic and emerging threats to population health.127,128 It is the past 15 years, and is the strongest driver of increasing also clear that policy and management choices about health DHS expenditure. are having enormous impact on the economy.129 Resource allocation within the constrained environment going Davén et al. describe the various reasons why PHC forward also needs to mitigate the numerous unintended expenditure per patient has increased, such as change in consequences on health and health services arising case mix.122 Whereas multiple factors may have contributed from the pandemic response.130,131 A balanced approach to declining utilisation (ranging from administrative that considers the financial and administrative resources improvements and alternative channels of service delivery expended across interventions is important to decide on through the Central Chronic Medicine Dispensing and appropriate trade-offs to realise the greatest improvement in Distribution (CCMDD) and ward-based outreach services, to population health with the limited resources available.132 improved health status). Increased expenditure and reduced utilisation counts combined have resulted in strong growth Within the private sector, the latest report of the Council for in PHC expenditure per headcount. Medical Schemes records the consolidation in the number of medical schemes over the past 18 years, from 144 to 79 Expenditure per patient day equivalent is an efficiency in 2018.133 These schemes covered 8.9 million beneficiaries, indicator of the use of resources across each level of 15.4% of the population, in 2018. Yet medical schemes hospital care in the country. Expenditure on district hospitals represent a stagnant and even declining proportion of the consumed almost 34% of total district expenditure in population, and with the number of benefit packages within 2019/20, and has grown steadily in real terms over the past each scheme this still represents considerable fragmentation five years. Patient Day Equivalents (PDEs) are a weighted of risk pools, identified by Michel et al. as one of the measure combining inpatient days, day patients and stumbling blocks to universal health coverage financing outpatient visits and have remained fairly static over the in South Africa.134 The largest areas of medical schemes same period. District hospital expenditure per PDE varies expenditure are on hospitals and specialists, amounting widely across provinces, from R3 671 in North West to to R64 billion and R43 billion respectively in 2018. This R2 687 in Western Cape, which may reflect both variation in translates to R7 062 (hospitals, all levels of care) and R4 856 efficiencies as well as case mix. (specialists) per beneficiary per annum on average.
Health and Related Indicators 263 Table 25: Trends in overall provincial and local government health expenditure by programme (Rand million, nominal prices), 2010/11 – 2019/20
Rand million Financial Year
Programme FY 2011 FY 2012 FY 2013 FY 2014 FY 2015 FY 2016 FY 2017 FY 2018 FY 2019 FY 2020
1. Administration 2 899 3 116 3 019 3 578 3 599 4 313 4 462 4 690 5 129 5 368
2. District Health Services 42 761 47 904 53 586 57 991 64 181 69 854 76 540 83 671 90 978 98 688
3. Emergency Health Services 3 882 4 656 5 079 5 352 5 556 6 025 6 435 7 380 7 671 8 394
4. Provincial Hospital Services 22 763 25 394 27 741 26 420 28 694 29 576 29 675 32 262 34 275 36 609
5. Central Hospital Services 14 670 17 319 18 822 23 559 25 804 29 529 33 736 37 437 41 120 44 608
6. Health Sciences and Training 3 359 3 537 3 755 4 039 4 248 4 529 5 107 4 916 5 037 5 115
7. Health Care Support Services 1 477 1 472 1 640 1 877 1 322 2 834 1 796 1 806 4 661 2 301
8. Health Facilities Management 6 581 8 191 8 967 7 895 7 491 8 514 8 316 8 651 9 014 9 844
Local government expenditure 2 379 2 397 2 859 2 869 3 389 3 730 4 103 4 199 4 858 4 828
Other -13 3 4 - - - - -0 -0 0
Total 100 759 113 989 125 473 133 581 144 283 158 903 170 171 185 013 202 744 215 755
Source: National Treasury databases. Note: ‘Other’ includes any other expenditure no indicated as being allocated to any of the above budget programmes.
Table 26: Provincial and local government health expenditure per province by programme (Rand million), 2019/20
Rand million Financial Year 2019/20
Programme SA EC FS GP KZ LP MP NC NW WC
1. Administration 5 368 620 294 1 481 796 300 430 220 465 760
2. District Health Services 98 688 13 623 4 732 15 925 22 727 13 803 8 906 2 438 6 431 10 104
3. Emergency Health Services 8 394 1 278 808 1 540 1 603 818 419 337 436 1 156
4. Provincial Hospital Services 36 609 4 026 1 608 9 225 11 521 2 637 1 435 416 1 833 3 910
5. Central Hospital Services 44 608 4 327 2 712 19 080 5 169 2 018 1 302 1 058 1 995 6 945
6. Health Sciences and Training 5 115 729 294 1 048 1 305 486 415 155 353 331
7. Health Care Support Services 2 301 101 162 369 251 142 215 162 407 491
8. Health Facilities Management 9 844 1 496 511 2 054 1 854 808 1 131 397 516 1 077
Local government expenditure 4 828 29 36 2 971 518 68 85 39 53 1 029
Total 215 755 26 229 11 158 53 693 45 745 21 080 14 338 5 223 12 488 25 802
Source: National Treasury databases.
264 South African Health Review 2020 Figure 23: Percentage of expenditure per programme by province, 2010/11 compared to 2019/20 EC FS GP KZ LP MP NC NW WC
100% 5% 5% 4% 4% 47%50% 65% 49%52% 40%42% 28%30% 54% 62% 34%39% 54% 49%47% 51% 51% 90%
80%
70% 24% 17% 5% 60% 5% 23% 7% 15% 50% 25% 14% 36% 27% 6% 5% 6% 29% 25% 26% 5% 8% 40% 15% 24% 24% 15%
% of Total Expenditure % of Total 12% 12% 27% 20% 21% 24% 30% 10% 13% 18% 9% 16% 16% 11% 20% 10% 9% 4% 11% 10% 4% 6% 12% 10% 5% 4% 7% 6% 8% 8% 8% 9% 4% 5% 8% 6% 6% 5% 5% 6% 4% 4% 2% 3% 0% 0% 0% 0% 0% 2% 0% 0% 0% 1% 0% 1% 1% 1% 0% 0% FY 2011 FY 2020 FY 2011 FY 2020 FY 2011 FY 2020 FY 2011 FY 2020 FY 2011 FY 2020 FY 2011 FY 2020 FY 2011 FY 2020 FY 2011 FY 2020 FY 2011 FY 2020
Prog 1. Administration 2. District Health Services 3. Emergency Health Services 4. Provincial Hospital Services 5. Central Hospital Services 6. Health Sciences and Training 7. Health Care Support Services 8. Health Facilities Management Local government expenditure Other
Health and Related Indicators 265 Table 27: Provincial health expenditure on district health services per province by sub- programme (Rand million), 2019/20
Rand million Financial Year 2019/20
Sub-programme SA EC FS GP KZ LP MP NC NW WC
2.1 District 4 396 1 013 121 676 315 565 468 290 515 433 Management
2.2 Community 18 970 2 863 1 017 2 371 4 659 3 274 1 694 519 1 126 1 445 Health Clinics
2.3 Community 10 916 1 254 152 1 971 1 919 657 1 105 369 1 138 2 349 Health Centres
2.4 Community- 4 130 562 471 2 213 416 173 19 - 7 269 based Services
2.5 Other 2 044 73 - - 1 261 102 - 42 567 - Community Services
2.6 HIV/AIDS 22 293 2 398 1 284 4 863 5 941 1 970 2 015 548 1 502 1 772
2.7 Nutrition 198 27 10 59 33 3 10 3 2 51
2.8 Coroner 701 117 41 245 241 - - - 56 - Services
2.9 District 35 001 5 316 1 635 3 527 7 941 7 058 3 595 666 1 517 3 746 Hospitals
2. Other* 39 ------39
Grand Total 98 688 13 623 4 732 15 925 22 727 13 803 8 906 2 438 6 431 10 104
Source: National Treasury databases.
266 South African Health Review 2020 f f c c c c a a a a a a h e g b d d d b d d d Ref 19.1 17.4 17.9 19.7 20.1 25.1 WC 24.7 24.8 1 937 1 947 2 574 2 687 2 635 2 023 1 309 134 1 307 019 1 327 573 17.1 19.3 13.5 15.4 12.2 15.5 12.0 NW 36.2 3 671 1 756 3 415 1 807 1 669 3 758 461 237 457 333 485 044 4.5 16.1 17.6 NC 14.8 16.3 15.4 14.9 15.8 3 211 2 148 2 301 2 830 2 950 2 069 181 511 187 573 179 595 12.1 MP 14.3 12.3 14.2 13.9 13.6 12.6 12.0 2 911 2 104 2 737 2 230 2 655 2 000 551 688 547 402 545 595 7.1 7.5 LP 8.3 8.2 9.0 6.9 12.4 10.8 3 344 2 372 3 282 2 425 2 492 3 260 433 881 410 439 412 936 9.7 8.5 KZ 11.3 11.2 11.9 12.4 10.9 12.6 2 121 2 187 3 123 3 230 3 082 2 292 1 232 181 1 253 144 1 256 360 GP 19.7 27.6 23.3 24.4 23.9 24.0 20.5 25.0 1 621 1 577 1 579 3 510 3 594 3 646 3 543 351 3 479 810 3 530 204 FS 14.7 16.7 13.4 13.2 13.5 14.9 16.2 16.0 1 897 1 836 1 800 2 797 2 874 3 040 381 721 387 739 389 600 9.3 9.8 9.5 9.6 9.9 9.0 EC 10.3 10.0 3 147 3 184 2 192 2 233 2 030 2 805 637 847 638 434 625 276 14.1 15.1 SA 17.4 15.7 14.8 15.4 15.4 16.4 15.9 16.9 3 179 1 935 1 993 3 015 2 063 3 060 4 727 913 4 179 742 4 188 782 8 878 081 8 916 695 8 872 036 4 692 294 Sex|Age|Series|Cat BAS real 2019/20 prices BAS real 2019/20 prices BAS real 2019/20 prices BAS all ages med schemes both sexes all ages med schemes both sexes female all ages med schemes male all ages med schemes all ages med schemes both sexes female all ages med schemes male all ages med schemes all ages GHS both sexes all ages med schemes both sexes 15+ years NiDS both sexes all ages GHS both sexes all ages med schemes both sexes all ages NiDS both sexes all ages GHS both sexes all ages med schemes both sexes female all ages med schemes male all ages med schemes real 2019/20 prices BAS real 2019/20 prices BAS real 2019/20 prices BAS 2017 2017 2018 2018 2016 2016 Period 2017/18 2017/18 2018/19 2018/19 2019/20 2019/20 Indicator Expenditure per patient day equivalent (district hospitals) Medical scheme beneficiaries Medical scheme coverage Provincial & District LG Health Services per expenditure capita (uninsured) Table 28: Health financing indicators by province 28: Health financing indicators Table
Health and Related Indicators 267 a a a a a a Ref 448 482 459 WC 1 198 1 261 1 199 570 542 568 NW 1 170 1 236 1 208 515 NC 539 558 1 414 1 319 1 379 MP 534 489 452 1 139 1 061 1 222 LP 379 424 436 1 123 1 102 1 029 471 KZ 501 520 1 363 1 439 1 469 GP 637 678 659 services) plus net local government expenditure on PHC per uninsured population. services) plus net local government expenditure (real prices)]: Provincial per capita (uninsured) [Rand PHC expenditure Provincial & LG on plus net local government expenditure on sub-programmes of DHS (2.2 – 2.7) expenditure PHC per uninsured population. (real prices)]: Provincial per PHC headcount [Rand PHC expenditure Provincial & LG on plus net local government expenditure on sub-programmes of DHS (2.2 – 2.7) expenditure PHC divided by headcount from DHIS. 1 236 1 230 1 256 • • FS 519 552 552 1 179 1 148 1 193 EC 419 407 439 1 147 1 189 1 105 SA 510 484 529 1 195 1 237 1 272 Sex|Age|Series|Cat BAS real 2019/20 prices BAS real 2019/20 prices BAS real 2019/20 prices BAS real 2019/20 prices BAS real 2019/20 prices BAS real 2019/20 prices BAS Period 2017/18 2017/18 2018/19 2018/19 2019/20 2019/20 Expenditure per patient day equivalent (district hospitals) [Rand (real prices)]: Average cost (real prices)]: Average Expenditure per patient day equivalent (district hospitals) [Rand per patient day equivalent). as Rand per patient day seen in a hospital (expressed Medical scheme beneficiaries [Number]: Number of medical beneficiaries, as reported by the Medical Schemes Council. Proportion of population covered by medical Medical scheme coverage [Percentage]: schemes. (real prices)]: per capita (uninsured) [Rand District Health Services expenditure Provincial & LG 2.8 Coroner on District Health Services (all sub-programmes except Provincial expenditure Indicator Provincial & LG Provincial & LG PHC expenditure per capita (uninsured) Provincial & LG PHC expenditure per PHC headcount Definitions • • • •
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274 South African Health Review 2020 Abbreviations
A AAC augmentative and alternative communication ADL activities of daily living AHPCSA Allied Health Professions Council of South Africa AIDS Acquired Immune Deficiency Syndrome ALS amyotrophic lateral sclerosis AMA American Medical Association ANC antenatal care AP assistive products ART antiretroviral therapy ASD autism spectrum disorder AT assistive technology B BMI body mass index BRICS Brazil, Russia, India, China, South Africa C C2CTP Carer-2-Carer Training Programme CALD cultural and linguistic differences CBD cannabidiol CBM Christoffel-Blindenmission CBO clinics community-based outreach seating clinics CBO model community-based outreach seating model CBR community-based rehabilitation CBRW community-based rehabilitation worker CBT cognitive behavioural therapy CCMDD Centralised Chronic Medicine Dispensing and Distribution CCOD Compensation Commissioner of Occupational Diseases CDP community development practitioner CFR case fatality rate CHC community healthcare centre CHW community health worker CMDs common mental disorders COC community outreach centre COID Compensation for Occupational Injuries and Diseases CORRE Community Rehabilitation Research and Education COVID-19 coronavirus disease 2019 CP cerebral palsy CPA community psychosocial assistant CPD continuing professional development CPMHC common perinatal mental health conditions CRAM Survey Coronavirus Rapid Mobile Survey CREATE CBR Education and Training for Empowerment CRF community rehabilitation facilitator CRPD Convention on the Rights of Persons with Disabilities
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Abbreviations 275 CRVS civil registration and vital statistics CS community survey CSIR Council for Scientific and Industrial Research CV communication vulnerability CWD children with disabilities D DA LYs disability adjusted life years DART Disability Action Research Team DBE Department of Basic Education DCCT Deaf Community of Cape Town DEL Department of Employment and Labour DHB District Health Barometer DHIS District Health Information Software DHMIS District Health Management Information System DHS District Health Services DoE Department of Education DoH Department of Health DPO Disabled People’s Organisation DPSA Disabled People South Africa DRM Disability Rights Movement DS drug sensitive E EAs enumeration areas EC Eastern Cape ECD Early Childhood Development ECI Early Childhood Intervention EDRWeb Electronic Drug Resistant TB Register EEA Employment Equity Act EMS emergency medical services ETR Electronic TB Register F FCE functional capacity evaluation FIDA Fundamentals of Impairment and Disability Assessment FS Free State FSDR Framework and Strategy for Disability and Rehabilitation FSDRS Framework and Strategy for Disability and Rehabilitation Services G GA general assistant GATE Global cooperation on Assistive Health Technology GATS Global Adult Tobacco Survey GBD global burden of disease GBV gender-based violence GCRO Gauteng City-Region Observatory GDoH Gauteng Department of Health GHS General Household Survey GP Gauteng GPP good pharmacy practice H HBC home-based care HBR home-based rehabilitation HCW Healthcare worker
276 South African Health Review 2020 HICs High-income countries HIS health information system HIV Human Immunodeficiency Virus HPCSA Health Professions Council of South Africa HPV human papillomavirus HRH human resources for health HSS health systems strengthening HST Health Systems Trust HT historical trend HT-AAC high-technology AAC HW health worker HWSETA Health and Welfare Services Education and Training Authority I IB international benchmark ICF International Classification of Functioning, Disability and Health ICF-CY International Classification of Functioning, Disability and Health - Children and Youth ICU intensive care unit ID intellectual disability IFR infection fatality rate IHME Institute for Health Metrics and Evaluation IHR International Health Regulations INDS Integrated National Disability Strategy IPT interpersonal psychotherapy ISHP Integrated School Health Policy ISPO International Society for Prosthetics and Orthotics IUPHC Institute of Urban Primary Health Care IVD in vitro diagnostic J JRHF Jabulani Rural Health Foundation K KWS key word signing KZN KwaZulu-Natal L LG local government LHW lady health worker LLMICs low- and lower-middle-income countries LMICs low- and middle-income countries LP Limpopo province LT- A AC low-technology AAC LTD Let’s Talk Disability LTHCs long-term health conditions LT I long-term insurance M MATCH Maternal and Child Health SMS Survey MBOD Medical Bureau for Occupational Diseases MCC Medicines Control Council MCH maternal and child health MDGs Millennium Development Goals MDR multi-drug resistant MHCA Mental Health Care Act MLCRW mid-level community rehabilitation worker
Abbreviations 277 MMHP Maternal Mental Health Project MMI maximal medical improvement MMR maternal mortality ratio MO Malamulele Onward MP Mpumalanga MSA Medical Schemes Act MTT Ministerial Task Team MYE mid-year estimate N NC Northern Cape NC(V) National Certificate (Vocational) NCDoH Northern Cape Department of Health NCDs non-communicable diseases NCOP National Council of Provinces NDoH National Department of Health NDP National Development Plan 2030 NG no growth NGO non-governmental organisation NHA National Health Act NHI National Health Insurance NICD National Institute for Communicable Diseases NiDS National Income Dynamics Study NMHPF & SP National Mental Health Policy Framework and Strategic Plan NMR neonatal mortality rate NPIs non-pharmaceutical interventions NQF National Qualifications Framework Nr. number NRF National Research Foundation NSNP National School Nutrition Programme NSP National Strategic Plan NW North West O ODMWA Occupational Diseases in Mines and Works Act OLTI Ombudsman for Long-Term Insurance OPD outpatient department ORC outreach-seating clinic OT occupational therapy OTA occupational therapy assistant OTT occupational therapy technician P PADI People for Awareness on Disability Issues PANSALB Pan South African Language Board PDE patient day equivalent PECS picture exchange communication system PERSAL Personnel and Salary Administration System PFA pension funds adjudicator PHC primary health care PHEIC public health emergency of international concern PLWMI people living with mental illness PM particulate matter PMBs prescribed minimum benefits
278 South African Health Review 2020 Pre-TST pre-traumatic stress disorder PRISMA-ScR Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for scoping reviews PT physiotherapist PTA physiotherapy assistant PTT physiotherapy technician PWD persons with disabilities Q QCTO Quality Council for Trades and Occupations QLFS Quarterly Labour Force Survey R RAF Road Accident Fund RAP Rural Ability Programme RC Ts randomised control trials RCW rehabilitation care worker RHAP Rural Health Advocacy Programme RHC Rural Health Conference RMNCH Reproductive, Maternal, Neonatal and Child Health RMS rapid mortality surveillance RP rank province RTHB Road-to-Health Booklet RTW return-to-work RUDASA Rural Doctors Association of South Africa RURACT Rural Disability Action Group RuReSA Rural Rehab South Africa S SA South Africa SACLA South African Christian Leadership Assembly SADA South African Disability Alliance SADHS South African Demographic and Health Survey SAHPRA South African Health Products Regulatory Authority SAHRC South African Human Rights Commission SAM severe acute malnutrition SAMRC South African Medical Research Council SANC South African Nursing Council SANHANES South African National Health and Nutrition Examination Survey SAPC South African Pharmacy Council SAQA South African Qualifications Authority SARS-CoV-2 novel coronavirus SASL South African Sign Language SASLC South African Sign Language Charter SASOP South African Society of Psychiatrists SASSA South African Social Security Agency SCI spinal cord injury SD significant difference SDGs Sustainable Development Goals SDH Social Determinants of Health SEIR Susceptible–Exposed–Infectious–Recovered SETA Sector Education Training Authority SIOC-cdt Sishen Iron Ore Company - Community Development Trust SLA service level agreement SLED Sign Language Education and Development
Abbreviations 279 SMI severe mental illness SQ status quo SRH sexual and reproductive health SS Social Security SSE Shonaquip Social Enterprise STA speech therapists and audiologists STI sexually transmitted infection Sum summary SWOT strengths, weaknesses, opportunities, threats T TB tuberculosis TFR total fertility rate THC tetrahydrocannabinol ToP termination of pregnancy U UCT University of Cape Town UHC universal health coverage UIF Unemployment Insurance Fund UKZN University of KwaZulu-Natal UN United Nations UNAIDS Joint United Nations Programme on HIV/AIDS UN CRPD United Nations Convention on the Rights of Persons with Disabilities UNICEF United Nations International Children’s Emergency Fund USA United States of America UWC University of the Western Cape V VL viral load VLS viral load suppression VR vocational rehabilitation W WBOTs ward-based outreach teams WC Western Cape WFOT World Federation of Occupational Therapists WG-SS Washington Group Short Set on Functioning WHO World Health Organization WPRPD White Paper on the Rights of Persons with Disabilities X XDR extensively drug resistant Y YLD years lived with disability YLL years of life lost
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280 South African Health Review 2020