Assessment of alternative forms of care and family support services for children with disabilities Orce Nikolov 74 Orce Nikolov 74 Skopje 1000 Skopje 1000 ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA REPORT December 2015 CIP - Каталогизација во публикација Национална и универзитетска библиотека "Св. Климент Охридски", Скопје 364-5/-7-056.26/.36(497.7)(047.31) ASSESSMENT of alternative forms of care and family support services for children with disabiliries : report / [authors Natalija Mihajlova ... и др.]. - Skopje : UNICEF, 2016. - 65 стр. : илустр. ; 21 см Фусноти кон текстот. - Автори: Natalija Mihajlova, Desislava ilieva, Stojan Mihajlov, Keti Jovanova Jandrijevska ISBN 978-608-4787-21-1 1. Mihajlova, Natalija [автор] а) Деца со попреченост - Алтернативни форми на згрижување и услуги - Македонија - Извештаи COBISS.MK-ID 101547530 This assessment was commissioned by the United Nations Children’s Fund (UNICEF) Skopje Office. It was prepared by Junction Bulgaria for UNICEF by a team of international consultants: Natalia Mihaylova, Dessislava Ilieva, Stoyan Mihaylov and national consultant, Keti Jovanova Jandijevska. CONTENTS 1. EXECUTIVE SUMMARY 5 2. SCOPE/RATIONALE OF THE ASSESSMENTS 10 2.1. Objectives of the Assessment 10 2.2. Scope and structure of the Assessment 10 3. METHODOLOGY 11 3.1. Data collection methods 11 4. FINDINGS 13 4.1. Contextual aspects 13 4.1.1. Geographical distribution and coverage of alternative care and family-support services 19 4.1.2. Number and type of beneficiaries of services 23 4.1.3. Funding (how budget is allocated and spent) 28 4.2. Organizational aspects 32 4.2.1. Staff structure and availability of regular training of staff 32 4.2.2. Cooperation with other sectors 35 4.3. Process of service delivery 38 4.3.1. Services provided by the staff 38 4.4. Benefits and outcomes 43 4.4.1. The types and quality of programs or services provided by the state and non-state actors 45 5. CONCLUSIONS 49 6. RECOMMENDATIONS 50 7. ANNEXES 58 7.1. Matrix of Assessment 58 7.2. E-mail/post survey - questionnaire 62 LIST OF ACRONYMS DCC Daily care Centre CSW Centre for Social Work ISA Institute for Social Activities FGD Focus Group Discussion IDI Individual In-depth Interview NGO Non-Governmental Organisation MoLSP Ministry of Labour and Social Policy MoH Ministry of Health MoES Ministry of Education and Science ICF-CY International Classification of Functioning – Children and Youth EXECUTIVE SUMMARY 5 EXECUTIVE SUMMARY 1 BACKGROUND UNICEF and the Ministry of Labour and Social Policy commissioned an assessment of all available forms of alternative care and family-support services provided to families and children with disabilities by the state and non-state actors in the social protection sector in the country. The ultimate goal is to help improve or expand the existing services and create new services, if needed, for children with disabilities in line with ICF-CY approach. The general context within which this analysis unfolds is set by the process of deinstitutionalisation which recently has started to take place in the country. A major task of this process is creating an environment for integration of the children with disabilities in their natural living environment, in line with the Convention of the Rights of People with Disabilities. Therefore, this report looks at two major aspects: the extent to which the provided services are family-centred and, on the other hand, how much they are oriented towards child development. METHODOLOGY The methodology of data collection involves desk review (strategic documents and statistical data); In-depth Interviews (17 with total of 38 experts and managers); Focus group discussions (59 biological and foster parents in total); 10 Observation of existing services (staff and beneficiaries); E-mail survey among 27 CSW and 25 DCCs). MAJOR FINDINGS GEOGRAPHICAL DISTRIBUTION AND COVERAGE OF ALTERNATIVE CARE AND FAMILY-SUPPORT SERVICES The following services are available: 30 Centres for Social Work (providing administration services but not doing direct social work with clients); 30 state-run Daily care Centres for children (in bigger cities; available for 9.78% of all children with disabilities); Organized supported living; Foster Care (91 children with disabilities); Small group home (one child with disability). The access of children with disabilities to the family support services is limited: • DCC are concentrated in the bigger cities. People from the small settlements lack conveniently located services; • Transportation issues – transport available in some of the DCCs only, and where available, there are issues around area of coverage, timing for picking up and dropping off. In the majority of centres the physical access via transportation is at low to medium level of accessibility; • Inconvinient working time with children in the DCCs - working time with children until 2 p.m., which disables parents to go to work, thus limiting one of the purposes of the service i.e. enabling parents to work. 5 ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 6 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA NUMBER AND TYPE OF BENEFICIARIES There are a total of 4112 children with disability registered by Centres for social work, i.e. 0,71% of the total population of 0 - 26 age group. The actual number is likely to be much higher due to issues around the system for assessment of disability. The majority (92%) of the children with disabilities live in their biological families. The only family-support service available is the Daily Care Centre. However, it is not available to 90.22% of the children due to either small capacity or unavailability of the service in 3 municipalities. For each group the existing services do not cover the whole continuum of care, e.g. a big portion of the variety of needs of the children with disabilities and their families remains unmet. Family-support services widely lack for the following groups of beneficiaries: • Children below 6 – DCC work with children above 5; • Children from the autistic spectrum – 1 DCC identified and is still insufficiently developed; • Children visiting school – the working hours of service and schools coincide i.e. preventing children with disabilities to use both; • The children with mild to moderate disabilities - None of the available services targets such children; • Parents as such - The very family is not recognised yet as a direct beneficiary of any service (in one service only the parents are involved as co- therapists). FUNDING Financial planning of services is based on the principle of main subsistence cost of the service i.e. is service-oriented rather than clients’ needs-oriented and is not based on performance indicators. Hence the methodology of funding is not one that fosters improvement of service quality. Moreover, service managers are stripped from a substantial function of management i.e. financial management The current funding mechanism does not set equal basis for all potential service providers entitled by law (state, NGOs, municipalities, private entities) to access the public funding. The financial planning favours alternative care (e.g. foster care) of children with disability vs. biological family support. STAFF STRUCTURE AND AVAILABILITY OF REGULAR TRAINING OF STAFF The ratio of child development staff vs basic needs staff is 1:1. This ratio should have been in favour of development staff in case child development was a leading service objective. Therefore, staff structure does not give weight to the priority of the service i.e. development of the children and is hence not relevant to the goal of the service (skills for independent living). The small number of social workers (14 i.e. 9.64% of the total DCC staff) as well as the fact that in more than half of the DCCs there is no social worker is indicative that working with families and developing children’s independent living skills is a task with lower weight than DCC goal would require. The number of professional staff working with children is only sufficient for group work but not sufficient for individual work. EXECUTIVE SUMMARY 7 COOPERATION WITH OTHER SECTORS Existing services have little or no inter-sector link which potentially reduces their capacity to re- spond to the clients’ needs more adequately and hence fails to sufficiently fulfil the fundamental goals regarding children with disabilities of all sectors (i.e. social inclusion, quality healthcare, inclusive education). Planning of services for children with disabilities is recognised largely as a responsibility of the Ministry of Labour and Social Policy. Matching the existing needs to available services reveals that as a result of service planning and design having little inter-sector nature, there is a certain level of mismatch of what the systems provide and what the children and fami- lies need (e.g. 1147 children visit school but there are 125 defectologists available for the whole country1). SERVICES PROVIDED BY THE STAFF The findings clearly indicate that the ultimate goal of the DCC to foster development of the child towards independent living is presently not achieved due to the following factors: • Service goals are perceived differently by staff and parents. The staff set goals in terms of basic skills development (hygiene, independent feeding, etc.) while parents expect that basic skills development should be only one step towards achieving a greater level of independent living. The different perceptions of the service goal has strong implications on the adopted approaches applied in the centres, the range of activities performed, the selection of staff, resource planning, location, type of professional support, etc. • From the parents’ perspective the range of activities employed in the DCC are not oriented towards achieving the ultimate goal. • The care planning concept is present but is not applied as an integrated approach e.g.