Strategic Plan 2018 – 2022

Sound Seekers

(The Commonwealth Society for the Deaf) Shakira, age 13, with her friends at Namasimba Primary School, in Foreword by HRH The Duke of York Patron

Sound Seekers - Strategic Plan 2018 – 2022 2 Sound Seekers - Strategic Plan 2018 – 2022 3 Executive Summary

This strategic plan was designed to give direction to Sound Seekers, the trading name of The Commonwealth Society for the Deaf, for the next four years.

It was developed using the organisation’s range of technical expertise and knowledge developed from lessons learned during the previous strategy (2013-2017). It provides a clear vision on how the organisation will move forward over the next four years, setting out fve strategic priorities alongside activities which identify where we will invest resources and how we will work with a variety of stakeholders to achieve our mission to support people with hearing loss to realise their rights by enabling access to healthcare and education.

Sound Seekers recognises that our mission can only be accomplished through a holistic approach of delivering audiology, community and educational services. The strategy for 2018 – 2022 enhances Sound Seekers’ holistic approach to fulfl the rights of people with hearing loss and the key commitments set out in the global health and disability agenda. Our strategic goal refects this by aiming to ensure people with hearing loss realise their rights by gaining access to an integrated and comprehensive Audiology, Community and Education (ACE) programme that is sustained by national governments.

Left: Natasha, age 5, has her hearing tested for the frst time at Beit Cure Hospital in Lusaka, Right: Happy, age 16, in Malawi, playing football with his friends

Sound Seekers - Strategic Plan 2018 – 2022 04 Sound Seekers - Strategic Plan 2018 – 2022 05 There is strong evidence that demonstrates a small investment now can alleviate many challenges for people with hearing 1Global costs of unaddressed loss in the future as they become empowered to make hearing loss and cost-efectiveness of interventions, WHO, 2017. valuable contributions to society. Investing in health and education services, and delivering them as integrated and 2 Deafness and hearing loss fact sheet,WHO, 2017. comprehensive programmes will ultimately help governments reduce the economic burden of hearing loss. The World Health Organization (WHO) estimates that the lack of attention towards hearing loss poses an overall annual cost of US$750 billion dollars globally.1 This includes health sector costs (excluding the cost of hearing devices), costs of educational support, loss of productivity, and societal costs.2

This strategy will be rolled out alongside global eforts to reduce the global burden of disease caused by untreated and/or preventable hearing loss. Sound Seekers uses cost- efective strategies to help mitigate the challenges for people with hearing loss, by working in partnership with governments so they can develop and sustain quality ear and hearing healthcare as an integral part of their health systems, and increase access to quality education for people with hearing loss by training mainstream teachers and improving the school environment.

Sound Seekers will also continue to promote awareness of primary ear and hearing care in an efort to reduce preventable hearing loss and work with families and communities to enhance the social and emotional well-being of people with hearing loss.

Sound Seekers will continue to work with other stakeholders and global alliances, within the broader context of the response by governments and other development agencies to avoid duplicating initiatives and ensure that this is a collective global efort. We will also continue to act as a catalyst for change to help ensure the rights of people with hearing loss are realised. Above: Foday and Sorie, age 11, enjoying lessons at St Joseph’s School for the Hearing Impaired in Makeni, Below: Teacher of the Deaf signing in her class in Chilengwa Primary School in Ndola, Zambia Sincere thanks are given to the many individuals and organisations that contributed their experiences, opinions and ideas to this document and to our donors and supporters without whom our work would not be possible.

Sound Seekers - Strategic Plan 2018 – 2022 06 Sound Seekers - Strategic Plan 2018 – 2022 07 Overview

Our mission to support people with hearing The new Sustainable Development Goals Deafness separates loss to realise their rights relies not only on (SDGs) guide the international development “ their identifcation and treatment but upon agenda until 2030 and one of the key comprehensive programmes that increase principles is ‘Leave No One Behind’. The reality people from people” their access to quality education and raise for people with hearing loss from the poorer community awareness about the causes and communities of the developing world is that efects of hearing loss and about the rights they are often socially isolated, excluded from Helen Keller of people with hearing loss to help reduce school and have limited or no prospects for stigma and discrimination associated with the future. Sound Seekers’ strategic goal and hearing loss. Delivering audiology, community priorities aim to ensure people with hearing and educational services as an integrated loss are never left behind or left in isolation Hearing loss can have a profound impact on health, education, and comprehensive programme is key to but can enjoy their rights in a fully inclusive 1 livelihood, social well-being and economic independence of Global costs of unaddressed hearing loss and cost-efectiveness of addressing all these challenges successfully society while able to access services, secure a individuals as well as on communities and countries. Despite interventions, WHO, 2017. while at the same time contributing to the livelihood and sustain their future. the fact that the majority of hearing loss can be treated, many 2 Sustainable Development Goals set by the people with hearing loss in both resource-poor and high- Deafness and hearing loss fact sheet,WHO, 2017. United Nations, which include: Sound Seekers aims to promote and realise income settings do not seek or receive hearing health care, and the rights of persons with hearing loss 4 the current production of hearing aids meets less than 10% of Global, regional, and national incidence, • Good health and well-being (ensuring enshrined in the UN Convention on the Rights the global need3. prevalence, and years lived with disability for 310 diseases and injuries, 1990-2015: healthy lives and promoting well-being of Persons with Disabilities (CRPD) adopted a systematic analysis for the Global for all at all ages); in 2006. Of particular relevance to Sound Results from the most recent Global Burden of Disease Burden of Disease Study 2015, Global Seekers’ work is the right to the highest 4 Burden of Diseases, Injuries, and Risk Studies indicate a growing, and now alarmingly high, burden Factors Study 2015 (GBD 2015). • Quality education (ensuring inclusive and attainable standard of health (Article 25), 5 of hearing loss . Analyses of the results to enable direct equitable quality education and promoting including the obligation of State Parties to 5&6 comparisons across the studies show that hearing loss was Blake S Wilson, Debara L Tucci, Michael H Merson, Gerard M lifelong learning opportunities for all); provide early identifcation and intervention the 11th leading cause of years lived with disability [defned O’Donoghue, Global hearing health care: services to prevent disability and reduce the by WHO as the years of productive life lost due to disability] in new fndings and perpsectives,Lancet, • End to poverty in all its manifestations impact of disability and the right to education 2010 and the fourth leading cause in both 2013 and 20156. This July 2017. (aiming to ensure social protection for the (Article 24) with an obligation to ensure an is higher than many other chronic diseases such as diabetes, poor and vulnerable, and increase access inclusive education system for all persons with 7 dementia and chronic obstructive pulmonary disease . Despite to basic services); and disabilities. Among our countries of operation, this, hearing loss still receives limited research and health Zambia, , Malawi and Sierra Leone funding or public awareness. • Reduce inequality within and among have signed and ratifed the Convention while countries (empowering and promoting has signed the Convention but is Sound Seekers has a long and successful history of promoting the social, economic and political yet to ratify it. ear and hearing health in developing countries. However, in inclusion of all). recent years, our role has been evolving and, increasingly, the emphasis has focused on a more holistic approach which recognises that identifying and treating hearing loss is only the frst step in reducing the global burden of disease caused by unaddressed and/or preventable hearing loss.

Sound Seekers - Strategic Plan 2018 – 2022 08 Sound Seekers - Strategic Plan 2018 – 2022 09 Currently, despite the high rates of hearing Sound Seekers believes ear and hearing care loss worldwide and the economic burden should be a fundamental component of a this brings, ear and hearing care remains country’s healthcare service and that the absent from many global health systems. focus should be on integrating hearing health Furthermore, many of the causes of hearing services in the healthcare systems of our loss in developing countries are avoidable and countries of operation. We work with existing the interventions available are both successful healthcare providers, including governments and cost-efective. People with hearing and non-governmental organisations, to loss having limited or no access to health, ensure our work is appropriate for the country education and support services presents we work in and complementary to existing an unnecessary economic burden on a services and plans. country’s development. This strategy will be implemented in Acknowledging this, in May 2017, a resolution collaboration with national plans, including and action plan for the prevention of deafness the Malawi National Health Development for and hearing loss was unanimously adopted Ear and Hearing Care Plan, which responds to Happy, age 16, in Malawi, at his home with his family by all member states at the World Health the analysis of the Malawi Poverty Reduction Assembly. The resolution increases the Strategy Paper and the Malawi Economic responsibility that national governments can, Growth Strategy to “recognise the need to Contextual Analysis and should, play in managing ear and hearing develop the capabilities and potential of health. Member States are urged to: persons with disabilities” (Disability Living Conditions Survey 2004), and Zambia’s The World Health Organization estimates that • Integrate strategies for ear and hearing National Ear, Nose and Throat Health Strategic care within the framework of their primary Plan 2016-2020. The strategy will also align globally there are 466 million people with healthcare systems; with The Gambia’s National Health Strategic hearing loss disabilities. Plan (2014-2020) which aims to strengthen • Establish training programmes for the rehabilitation care and services for persons development of human resources in with disabilities with particular emphasis on Two thirds of those live in developing countries where access the feld; the need for early detection and screening to healthcare and audiology services are usually limited or for disability and Sierra Leone’s post-Ebola non-existent. Infectious diseases, including mumps, measles • Implement screening programmes for plan for delivery of a Basic Package of Health and meningitis, and the use of certain medicines used to early identifcation; and Services (2015-20) which specifcally commits treat malaria, tuberculosis and HIV/AIDS can all cause hearing to “targeted screening of hearing impairment”. loss. This, coupled with other acquired causes of hearing loss, • Make high-quality, afordable hearing including chronic ear infections, otitis media (collection of fuid devices accessible to all who need them. in the ear), wax or foreign bodies blocking the ear canal, ageing and noise as well as congenital causes, including complications during pregnancy or birth, which are left untreated due to an under-developed healthcare system and lack of health related education, exacerbate the prevalence of hearing loss in developing countries.

Sound Seekers - Strategic Plan 2018 – 2022 10 Sound Seekers - Strategic Plan 2018 – 2022 11 The adoption of the World Health Assembly resolution is the frst step in helping achieve our objectives as hearing loss fnally becomes part of the global health agenda. In essence, the resolution refects Sound Seekers’ long-standing principles and implementation strategies for addressing the health challenges surrounding hearing loss. Sound Seekers is also committed to promoting and improving inclusive and equitable access to quality education for children with hearing loss in our countries of operation. Indeed, this objective Children with the Sound Seekers HARK mobile outreach vehicle in Ndola, Zambia forms a vital part of our integrated, holistic approach and is a key component in achieving our mission to support people with hearing loss to realise their rights by enabling access to Barriers to Ear and Hearing Healthcare healthcare and education.

This strategy, therefore, also supports the Sound Seekers recognises three major barriers to the provision of ear implementation of National Education Policies of Malawi and Zambia which call for inclusive and hearing healthcare services in developing countries: education to be enhanced and promoted; the new inclusive education policy of Sierra Leone • The lack of trained health workers and ear These barriers create further challenges currently under development; the Education and hearing care personnel, in particular for people with hearing loss in developing Sector Plan (2014-22) of The Gambia which audiologists. countries: encourages the adoption of “complementary and mutually supportive approaches based on • The lack of sustainable and reliable • The lack of equal access to education. the principles of inclusiveness, integration and audiology services, including the lack of participation of students with special needs”; access to afordable, quality hearing aids. • Social discrimination and isolation. and the Education and Training Sector Strategy Document (2013-2020) of Cameroon which • The lack of institutional knowledge and calls for adoption of inclusive approaches in public awareness about hearing loss, and schooling including teacher training. ear and hearing healthcare.

It is anticipated that over the course of this strategy, further national plans will be developed and Sound Seekers will implement programmes alongside those plans as they emerge. It is for these reasons that the strategy is fexible and adaptable so that newly identifed needs can be responded to

Shakira, age 13, in her classroom in Namasimba as they arise. Primary School in the Southern Region of Malawi

Sound Seekers - Strategic Plan 2018 – 2022 12 Sound Seekers - Strategic Plan 2018 – 2022 13 Our Values

Hearing loss can be both a cause and efect of poverty. To combat this, we work to secure the future of people with hearing loss in some of the poorest communities of Our Vision the developing world through our core values:

An inclusive world where people with hearing loss have equal opportunities.

Sustainability Partnership Our Mission Integrating services into Working with government existing government systems agencies, hospitals and and improving institutional schools as well as local To support people capacity to ensure long-term communities and donors. impact on the lives of people with hearing loss to realise their with hearing loss. rights by enabling access to healthcare and education.

Inclusion Empowerment Supporting participation and Promoting and raising inclusion of children and awareness of the rights of adults with hearing loss and people with hearing loss. their families in school and community life.

Sound Seekers - Strategic Plan 2018 – 2022 14 Sound Seekers - Strategic Plan 2018 – 2022 15 Strategic Objectives

Programmatic

1. Increase access to ear and hearing healthcare

Shakira, age 13, being ftted with hearing aids by Chikondi Chabaluka, one of the frst-ever Malawian audiologists 1.1 Provide high quality clinical services to support the development of hearing services. Strategic Goal 1.2 Train and build capacity of local health practitioners to ensure sustainability of services and support the participation on diploma and degree courses in People with hearing loss realise their Audiology in Africa. rights by gaining access to an integrated and comprehensive Audiology, Community and 1.3 Develop volunteer programmes to ensure professional development of local service providers. Education (ACE) programme that is sustained by national governments. 1.4 Implement early identifcation programmes where there is sufcient infrastructure for referrals.

2. Promote inclusive quality education for children with Strategic Priorities hearing loss

2.1 Develop and strengthen links between hearing Programmatic healthcare providers and schools and families across all programmes. 1. Increase access to ear and hearing healthcare 2. Promote inclusive education for children with hearing loss 2.2 Train teachers to help ensure inclusion of children with 3. Develop community awareness of hearing loss hearing loss in mainstream schools.

2.3 Improve school environment for children with hearing Organisational loss through infrastructure development.

4. Strengthen organisational efectiveness and efciency 2.4 Support sign language training to improve communication for children with hearing loss and Cross-cutting their families.

5. Address the stigma and discrimination associated withhearing loss

Sound Seekers - Strategic Plan 2018 – 2022 16 Sound Seekers - Strategic Plan 2018 – 2022 17 3. Develop community awareness of hearing loss Our Theory of Change 3.1 Implement primary ear and hearing care training for community health workers to help increase public awareness. As part of our strategic planning process, we have 3.2 Promote the principles of healthy ear and hearing care developed a Theory of Change, which provides a to help reduce the likelihood of hearing loss. structure and pathway to apply practical ways to measure and test the assumptions and strategies 3.3 Provide efective family support to enhance the social and emotional well- being of people with hearing loss. that underpin the steps through which change and progress take place. 3.4 Implement early identifcation programmes where there is sufcient infrastructure for referrals.

Organisational

4 Strengthen organisational efectiveness and efciency

4.1 Increase capacity and capability of staf and volunteers by ensuring that processes and systems evolve as the organisation develops.

4.2 Improve collection, collation and analysis of data to inform further planning and development of Sound Seekers’ programmes.

Cross-cutting

5. Address the stigma and discrimination of hearing loss

5.1 Challenge gender barriers and ensure equal access to hearing healthcare and quality education for women, men, girls and boys with hearing loss.

Sound Seekers - Strategic Plan 2018 – 2022 18 Sound Seekers - Strategic Plan 2018 – 2022 19 Our Theory of Change Our Vision of Success

By 2022, in our countries of operation,8 ensure there are sustainable audiology and quality 1 Engage educational services to support people with with key stakeholders and align with national and international hearing loss. policy frameworks Success Factors

1. Government agencies are receptive to partnerships and are rolling out and up-scaling programmes. 8Sound Seekers currently works in Success 2 Assess and Analyse Cameroon, The Gambia, Malawi, Sierra Education Leone and Zambia, and there is potential the situatonal context and map 2. Strategic and efective advocacy is conducted with to support new countries. governments to commit resources. Girls, boys, networks – including NGOs and women and CBOs at grassroots men living with 3. Resources are secured with multi-year long term funding; hearing loss more long term professional volunteers, matching audiologists and Teachers of the Deaf (TOD), and Audiology Community Sound Seekers has wider responsibility and infuence on policy-making.

4. Evidence based systems for monitoring, evaluation, accountability and learning are in place to review the Improve and Adapt 3 Develop Partnerships 5 strategic plan and progress of programmes. use evidence and learning to with governments, local develop future programmes hospitals, training institutes 5. Sound Seekers’ profle is raised internationally. and schools

4 Act and Innovate set up services in hospitals, schools and communites, train local practitoners and assign professional volunteers

Sound Seekers - Strategic Plan 2018 – 2022 20 Sound Seekers - Strategic Plan 2018 – 2022 21 Conclusion

This strategy addresses the three major barriers to the provision of ear and hearing healthcare services in developing countries and the subsequent challenges experienced by people with hearing loss, by ensuring that they are able to realise their rights by gaining access to an integrated and comprehensive Audiology, Community and Education (ACE) programme that is sustained by national governments.

While it is essential that Sound Seekers’ programmes are strategically aligned with global and national eforts to address the absence of ear and hearing care in many government health systems, in order to reduce the economic burden of hearing loss, it is imperative that these programmes are holistic and integrate increasing access to audiology services alongside quality education and raising community awareness. Only by incorporating these three interventions together can the best possible outcomes and greatest impact of service upon people with hearing loss be realised.

Sound Seekers recognises the need to strengthen the evidence base with regards to hearing loss, including improving data collection. Working with partners and through strong strategic alliances and networks, Sound Seekers will provide clear evidence of what works and will use this evidence to infuence national policy and practice, and improve health and educational outcomes. By developing an evidence-based approach that demonstrates the quality and the unique added value that Sound Seekers brings for people with hearing loss and their families, often in extremely resource-poor settings, it is envisaged that the collation of this evidence will also provide signifcant information on hearing loss and its causes which will be used to inform the development of future programmes John, age 88, being ftted with hearing aids at Ndola Central Hospital in Ndola, Zambia and prevention campaigns.

Sound Seekers - Strategic Plan 2018 – 2022 22 Sound Seekers - Strategic Plan 2018 – 2022 23 Yaka Faal, lead Audiology Technician, assessing Awa, age 3, at Edward Patients being screened for hearing loss during a HARK mobile outreach clinic in Thyolo Francis Small Teaching Hospital in Banjul, The Gambia District in Malawi, delivered by Queen Elizabeth Central Hospital audiology team

Annexe I: Donors Annexe II: Partners

Sound Seekers would like to thank all our donors Sound Seekers would like to thank all our and supporters for their generous contributions partners for their work in helping us achieve over the years. our objectives.

While it is not possible to acknowledge each of our supporters, Cameroon The Gambia every donation, no matter how large or small, helps us deliver our mission to support people with hearing loss to realise their • Mbingo Baptist Convention Integrated • Bansang Hospital, Bansang rights by enabling access to healthcare and education and for School for the Deaf, Mbingo that we are extremely grateful. • Edward Francis Small Teaching • Mbingo Baptist Hospital, Mbingo Hospital, Banjul

Institutional Donors: Corporate Supporters: • St. John’s School for the Deaf, Serrakunda Malawi • UK Aid from the British People • Arco Ltd Zambia • Jersey Overseas Aid • Audium • Queen Elizabeth Central Hospital, • Beit Cure Hospital, Lusaka • Bankside Gallery Blantyre Trusts, Foundations & Churches: • Beattie Communications • Chilengwa Primary School, Ndola • Card Aid • Kansenshi Primary School, Ndola • Action on Hearing Loss • Michael Hall Consultants Ltd Sierra Leone • Ndola Central Hospital, Ndola • British Foreign School Society • Otometrics • Hear the World Foundation • People for People and Smile a Minute • Loreto Clinic, Makeni • Starkey Hearing Institute, Lusaka • Meeting Needs • Rayovac • St. Joseph’s School for the Hearing • University Teaching Hospital, Lusaka • Mosse Charitable Settlement • Sivantos Impaired, Makeni • Peacock Charitable Trust • The Bespoke Agency • St Mary The Boltons Church • The Santon Group • The Adrian Swire Charitable Trust • The Specsavers Partnership • The Brock Webb Trust • Weil, Gotshal & Manges • The Paget Trust • W.L. Pratt Charitable Trust

Sound Seekers - Strategic Plan 2018 – 2022 24 Sound Seekers - Strategic Plan 2018 – 2022 25 Student having their hearing tested at Faith Baptist Community School for the Deaf, in Zambia

www.sound-seekers.org.uk

Email: [email protected] Tel: +44 207 833 0035

Sound Seekers is the trading name of ‘The Commonwealth Society for the Deaf’, Charity No. 1013870 and a private limited company registered in England with company number 02739343.

Registered ofce: UCL Ear Institute, 332-336 Gray’s Inn Road, London, WC1X 8EE