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. every specialist prepares their own separate plan rather than united in one general plan for the client. Care plans do not contain specific and measurable goals and deadlines, the activities are repeated yearly in all the plans. The review of the plans does not show any big difference in the skills development of the children during the years. • Parents and children are not fully involved in individual care planning in state-funded services. Parents’ involvement is high in NGO-run services. Correlation was identified between the level of involvement of parents and the level of satisfaction of parents with the service and the outcomes it achieves for the children. • In terms of the ultimate goal no significant difference was identified between state-run and NGO-run DCCs as they both are not result-oriented. However, there is significant difference in the extent to result-orientation of the service between state-funded and non-state funded NGO providers. • The existing mechanism of evaluation of the services is oriented to collecting ongoing monitoring data rather than outcome-based evaluation of the services.
1 According to data provided by Ministry of Education ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 8 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
GENERAL CONCLUSIONS
• There is a gap in the service provision system related to early identification of the disability (particularly for disabilities becoming visible later after birth). The path from assessment of disability to reaching the ultimate goal of independent living is difficult and unrealistic to achieve with the existing number and level of diversity of services. • There is a gap in service provision in terms of early-stage support and ongoing counselling for parents in detecting and accepting the disability of their child. • The existing services mismatch the existing needs of the parents in terms of the extent to which the services are oriented to child development. • The developmental activities within the different services (DCC, kindergarten, Early development centre, etc.) are not tailor-made so that they can flexibly respond to the actual needs of the children according to the child’s development stage, abilities, age, etc. • There is a mismatch between the goal and design of the DCC service. The DCC design is not flexible (all DCCs are the same everywhere) to reflect the diversity of local needs. • The system lacks inter-sector links among the services so that they can become more flexible and need-oriented. • Service staff structure is presently organised in a way that potentially orients the services to the medical model rather than the social model of service provision. • DCC management is not independent but is subordinated to the CSW. As a result, the DCC are limited to perform actual service management (including financial management) hence the service is unable to flexibly respond to the local needs. EXECUTIVE SUMMARY 9
GENERAL RECOMMENDATIONS
• The continuous support of a child from the moment of assessment of disability towards independent living needs to be reorganised through a higher variety and number of services that ensure the possibility of choice of services that best fit the needs of the children as they grow and diverse models of family living (parents’ jobs, family model, other children in the family, life rhythm, etc.). • Financial planning needs to reflect needs assessment analyses and based on measurable and objective performance indicators. • Financial mechanism for services needs to be decentralized – options need to be considered for service managers to be able to fully implement their management role including financial management towards improving service design and better service quality. DCCs and all services need to have management (incl. financial management) which is independent from CSW. • Diversification of the services, developing new ones and covering the whole continuum of care. Early intervention with focus over identification of cases through work in community. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 10 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA SCOPE/ RATIONALE OF THE 2 ASSESSMENTS
2.1. OBJECTIVES OF THE ASSESSMENT This report presents the key findings of the 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 assessment was commissioned by UNICEF and MoLSP with the ultimate goal 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 methodology, analysis and recommendations produced by the assessment are rights based gender sensitive and take in consideration different ethnic background and place or residence of the families and children with disabilities. More specifically the assessment looks at: • Geographical distribution and coverage of alternative care and family-support services; • Number and type of beneficiaries of their services; • Staff structure and availability of regular training of staff; • Services provided by the staff; • Funding (how budget is allocated and spent); • Cooperation with other sectors; • The types and quality of programs or services provided to children with disabilities by the state and non-state actors.
2.2. SCOPE AND STRUCTURE OF THE ASSESSMENT The assessment is describing the situation of service provision for children with disabilities and their families by: • providing a map of existing services for children with disabilities and families; • analysing contextual factors contributing to the reality of the system presently; • analysing organizational factors underpinning quality service provision; • analysing the quality of service provision; • analysing needs of children with disabilities and their families in terms of met and unmet needs; • identify developmental areas enabling reducing equity gaps and improving existing services towards better addressing users’ needs; • recommend further action to be undertaken by relevant authorities both on national, regional and local level. 10 METHODOLOGY 11
METHODOLOGY 3
3.1. DATA COLLECTION METHODS DESK REVIEW The desk research was based on the available sources of secondary information in regard to the alternative care services – sites of MoLSP and other governmental institutions, the internet sites of the NGOs engaged in the work with children with disabilities, municipalities in the country who are developing such services, articles in the leading newspapers and magazines, academic and scientific publications, TransMonEE database, State Statistics Office data etc.
IN DEPTH INTERVIEWS (IDIS) 14 individual in-depth interviews were planned, 17 IDIs, dual interviews and group interviews were conducted with directors of CSWs, managers of DCCs, experts in ISA, MoLSP, MoH, MoES, non-state providers of social services for disabled children – total of 38 respondents.
FOCUS GROUP DISCUSSIONS The team conducted 8 FGDs – 6 with biological parents of children with disabilities (users and non-users of alternative services) as it was planned and 2 with foster parents and the total number of participants were 59.
OBSERVATION OF THE EXISTING ALTERNATIVE CARE SERVICES 10 observations of the DCCs and alternative services were conducted space, service infrastructure, interactions, leadership, attitudes, etc. among the actors (staff and beneficiaries).
E-MAIL / POST SURVEY The data collection from the alternative care services identified and the CSW staffs was conducted through e-mail survey. 27 completed questionnaires from the CSW and 25 from the DCCs were received. The sample of IDIs, FGDs and observations was elaborated to cover several important criteria: o Geographical coverage: the sample covers social services from the main geographical regions in the country – West and East parts, capital Skopje. o Variety of social services and institutions, state and non-state service providers: the sample includes the representatives of the CSWs, MoLSP, MoH, MoES, ISA, DCCs, specialised Institutions, NGOs, biological and foster parents of disabled children, etc. o Socio-economic and ethnic profile of the country – the poorer East region in the country is included as well as the city with majority of Albanian ethnicity citizens (Gostivar). 11 ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 12 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
ETHICS The planning and conducting of the interviews and the focus groups was in line with the ethical requirements for collecting and documenting the collected data. All respondents were informed prior to the interviews about the aims and objectives of the assessment, the approach to be used, the data collection and data use methods as well as the duration of the meetings. The anonymity of all respondents was guaranteed. Each respondent was able to refuse participation or leave the meeting at any time. FINDINGS 13
FINDINGS 4
4.1. CONTEXTUAL ASPECTS The general context within which the further analysis and assessment is unfolded is set by the process of deinstitutionalisation which recently takes place in the former Yugoslav Republic of Macedonia. This process concerns moving children out from specialised residential institutions and placing them into alternative services – foster care and organised supported living along with developing family-support services to prevent further abandonment of children with disabilities. A major task of this process is also creating an environment for integration of the children with disabilities in their natural living environment. That is why an overview of the existing regulative framework will be done by analysing two main directions. In the one hand, to what extent the provided services are family-centred and, on the other hand, how much they are oriented towards the child development. The main regulative documents are The Social Protection law and The Child Protection law. According to the latter a child is any person until 18 years of age and a person with physical or mental development problems up to 26 years of age. In the terms of the Social protection law a child with disabilities and special needs is a child with: • Heavy, severe or profound physical disabilities; • Moderate, severe or profound mental disabilities; • The most severe forms of chronic diseases; • Severe forms of visual impairment, hearing or speech impairment (blind and practically blind, deaf and virtually totally deaf person, a person with complete absence of speech, a person with severely impaired speech because of polio, a person with autism and persons with impaired or lost earlier acquired speech); • Down Syndrome; • Various kinds of developmental disabilities (combined).
The National Program for Development of Social Protection 2011-2021 is the basis for reform of the system of social protection in the country and for the development of normative acts and other documents in the field of social protection. In recent years significant steps towards deinstitutionalization have been made, particularly in relation to children with disabilities. In 2008 a National Strategy for deinstitutionalization in the social protection system 2008-2018 was adopted. Key partners in the reform process are the Ministry of Health, Ministry of Labour and Social Policy and the Ministry of Education and Science. Other key actors in this process are: The national coordinating body established by the Government in order to facilitate the equal rights of Persons with Disabilities and the National Council of the seven affiliated national organizations of people with disabilities.
13 ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 14 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
The system and organisation of social protection consists of institutions, measures, activities and forms that are realised within the implementation of citizens’ rights in the area of social protection. The system is accomplished through professional work in social protection institutions, the implementation of development programs, professional training of workers depending on the needs of users and international standards, monitoring the events and planning of work, keeping records, and by conducting reviews and research in this area. The existing Social protection system for children with disabilities consists of institutional and non-institutional forms, the latter being: • Centre for Social Work; • DCC for people with mental or physical disabilities; • Organized supported living; • Foster Care; • Small group home.
The Centres for Social Work (CSW) are responsible for initiation and for implementation of social protection as defined by The Social Protection law. The CSW has the right to decide upon the eligibility to social protection in line with the Child Protection law and has the role to maintain close working relations with the citizens. According to the Social Protection law, the CSW is the primary recipient of planning information as a basis for services or benefits provided by the MoLSP. The centre is responsible for initiating the social protection procedure, referring the person with disabilities to the commission for assessment.
DCC provides daily care for children and persons with moderate and severe intellectual disabilities and persons with severe physical disabilities. They support the families through undertaking portion of the care for the child in certain time period during the day. The capacity of day centre is maximum 25 users in a facility, whereby a group depending on the age of the user should be 12 beneficiaries at the most. The day centre, depending on the number of users, should have an adequate number of skilled personnel and special education teacher, social worker, educator, psychologist, physiotherapist, nurse for implementing programs for working-production activity, occupational therapy, social adaptation, psychosocial rehabilitation and preparation for independent living. DCC with capacity for up to six users should have at least two employees, one of whom should be qualified professional worker.
Organized supported living takes place in separate residential unit with permanent or occasional assistance of professional or other persons in the exercise of the fundamental necessities of life, social, working, cultural, recreational and other needs of the children. Persons with mental or physical disabilities, children without parental care and children with social problems are eligible for organized supported living. The level of support is determined in accordance to the needs, the type and degree of disability of the user. Support for organized living can be organized by CSWs, institutions that accommodates people and by the community. Detailed conditions for the standards required in terms of space, equipment and staff, levels of support, method and program for realisation of support are determined by the Minister of Labour and Social Policy.
Foster care services in the country are regulated by the Social Protection Act and the Rulebook on the criteria for selection of foster family2. This entitlement is designed for children for whom all
2 Rulebook on the criteria for the selection of a foster family, the type and number of users that can be placed in a foster family and the type and extent of social services it provided to the person staying FINDINGS 15
possibilities for living in a closer or wider biological family are exhausted. Foster care placement is regulated through a contract signed between the foster family and the CSW, and outlines key roles, rights and responsibilities for the foster family, as well as regulations concerning contract termination or extension. The CSW is responsible to recruit assess and train the potential foster families, to provide continuous professional assistance and support in accordance with the stan- dards and procedures for placement in foster families, and to monitor and coordinate the activities linked to placement and care of a foster child once placed. Foster families are obligated to act according to the contract with the CSW and duly inform the CSW of significant changes or needs of the fostered child.
Placement in a small group home, according to the Rulebook3 for accommodation in a small group home is eligible for a child without parents or parental care, with educational and social problems, mental or physical handicaps, persons with mental or physical disability, who do not have ade- quate living conditions in their family, who have family-related or other reasons needing accom- modation in a small group home. Small group home provides care for children who have rights to live in a small group home, up to ten people, of both sexes. Care is provided in a manner closest to family life and includes aid for training for independent living of the beneficiaries, their involve- ment in the community; maintain contact with close relatives, depending on the needs of persons accommodated in the small group home. Small group home can be established in a residential building in the township. Small group home could be established as an institution for social pro- tection, organization of social care institution or other legal entity. The method, type and number of qualified person for the provision of care for accommodated persons, facilities and equipment for living in a small group home, are defined by the Minister of Labour and Social Policy. A brief description of the main characteristics of the existing services/support for children with disabilities and their families is provided in table 1 below. TABLE 1
Support/service Target Stipulated tasks4 Initiation and implementation of social protection by Centre for Social Parents/children5 both making-decision for provision of social services Work and administration of the social benefits. DCC for people Support for the children and youth and their families with mental or Parents/children provided by organized stay for a certain period of the physical disabilities day. Assistance in exercising fundamental necessities of Organized Children life, social, working, cultural, recreational and other supported living needs of the children. Accommodation and fostering within the family; care Foster Care Children for the social and individual needs of the child. Training for independent living of the beneficiaries, Small group home Children involvement in the community.
It is evident from the list above that the only family oriented social service is the DCC as it is described in the corresponding regulative framework. In fact, the Centres for Social Work organize, coordinate and administrate the social protection for the families.
3 Rulebook on the manner, type and number of experts for providing care for accommodated persons, facilities and equipment for living in a small group home. 4 As per the regulations i.e. Rulebook on DCC, Rulebook on foster care, Social protection law. 5 According to the Child Protection law “a child is any person until 18 years of age and a person with physical or mental development problems up to 26 years of age”. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 16 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
Regarding child development, the regulation of all existing services commits to child development as a fundamental goal, although not explicitly defined in terms of clear objectives and specific expected results. Generally, the network of services for children with disabilities needs to be designed in a way that covers the whole palette of interventions in order to guarantee that different services respond to the various needs that children with disabilities have. The approach used is so called “continuum of care”6 and is an applicable tool for assessment of services targeting client populations with a great variety of needs, which particularly is the case with children with disabilities. Matching the existing services to the different levels of intervention from the care continuum reveals the extent to which the available services fully address the needs of the clients and outlines any possible gaps and discrepancies in existent service provision. The following table only indicates the existing services according to each level of the care continuum, however, it is not exhausting the diversity of services that may potentially be developed to cover the whole spectrum of needs of the clients. TABLE 2
Level of intervention/ Available services Limitations and opportunities Care continuum There are some limitations of the service: As Identification of cases identification of possible disability is just an - the service finds additional part to patronage nurses’ main task the client (outreach Patronage Nurses (support of mothers and babies), it is limited service) rather than to the group of infants only. Children beyond vice versa infancy remain outside the scope of this outreach service. The limitation of the services consists in the fact that this responsibility is divided between more Comprehensive Specialised centres7 than one institution – it is neither CSWs nor the assessment and CSWs Specialised centres that are fully responsible for it.
16 state-run (placed in rural areas primarily) and Centres for Early Early Intervention8 5 private centres (in Skopje, Kumanovo and Child Development9 Bitola) – insufficient in number
Although a stipulated task, the CSWs work load with a range of tasks does not allow sufficient Centre for Social time for any “counselling” function. Some CSW Counselling Work (Prilep, Ohrid, Negotino, Demir Hisar) have only one social worker to cover all cases of children with disabilities in the targeted municipalities
Support at home not available
Support in the not available communities
6 http://apps.who.int/iris/bitstream/10665/66584/4/WHO_MSD_MSB_00.2d.pdf 7 Institute for rehabilitation of hearing, speech and voice – based in Skopje and Bitola; Mental health Institute, based in Skopje; Institute for physical medicine and rehabilitation, based in Skopje 8 Early intervention means doing things as early as possible to work on your child’s developmental, health and support needs 9 Early child development services are only one aspect of early intervention. FINDINGS 17
Level of intervention/ Available services Limitations and opportunities Care continuum Short term interventions e.g. not available respite care at home or in out-of-home settings
Crisis intervention not available
The available services cover only the day period Day/evening treatment DCC/Kindergarten or part of the day i.e. evening services are not provided Withdrawal management, e.g. the not available client “exit” from the service The geographical coverage of both “foster care” Life-long service and Foster care/Small (Prilep, Makedonski brod, Krushevo, Skopje) and support group home “small group home” (Berovo) is insignificant.
Mutual aid not available
Independent supported Organized Only in Negotino and Skopje living supported living
Supported employment not available
The matching table above reveals that 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. Moreover, some of the services that do appear on the respective level of the care continuum have limitations which significantly reduce their scope. Further on in this report the aspect of availability and accessibility of services will be commented in more details.
RATIO OF SERVICES FOR ALTERNATIVE CARE VS. FAMILY-SUPPORT SERVICES According to the Lirikus data base, the number of children with disabilities (0 – 26 years old) registered as of 03.11.2015 is BY THE YEAR 2000 4112, although it is quite likely that the actual population of “AUTISM” HAD BEEN AN disabled children in the country exceeds that number because the INVISIBLE TOPIC IN MACEDONIA, process of registration is voluntary and it depends on a number EVEN TODAY DIAGNOSIS IS of factors: the size of benefits that the family will be eligible to VERY HARD. receive upon registration (assessment of disability), the disability stigma which still exist in the small towns and villages in the (IDI PROFESSIONAL) countryside, the quality and speed of diagnosing. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 18 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
The majority of children with disabilities live in their biological families, which means they receive informal care10. Figure 1 below shows the proportion of number and type of beneficiaries of for- mal care vs informal care.
THE DOCTOR SAID: The Figure above shows that 78 children with disabilities live in different “THERE IS NO AUTISM IN forms of alternative care. Alternative care11 for the disabled children in MACEDONIA, IT EXIST ONLY IN the country is provided by Organised supported living, Foster care and UK AND US.” Small group home (1 child with disability). In regard to the family sup- (PARENT OF DISABLED CHILD, FGD) port services, it is only the DCC which can be used by children both liv- ing in biological and in foster families12 i.e. is a family-oriented service.
10 Informal care: Care mainly provided by family, close relatives, friends or neighbours; carers are non-professionals and not trained to provide care; but in some cases they may benefit from special training; carers have no contracts regarding care responsibilities; carers are not paid although they more and more commonly obtain financial contributions; carers perform a wide range of tasks (also performed by formal carers) including emotional support and assistance; no limits to time spent on care – never/rarely officially ‘off duty’; no general entitlement to social rights Formal care: Services provided by trained, licensed and qualified professionals; services are controlled by the state or other types of organization; caregivers have contracts specifying care responsibilities; caregivers are paid and entitled to social rights and working regulations; care tasks are specified according to professional qualification; are workers have a time schedule and go ‘off duty’ - http://www.euro.centre.org/data/1278594816_84909.pdf 11 Alternative care is also defined as “a formal or informal arrangement whereby a child is looked after at least overnight outside the parental home, either by decision of a judicial or administrative authority or duly accredited body, or at the initiative of the child, his/her parent(s) or primary, caregivers, or spontaneously by a care provider in the absence of parents. This includes informal fostering by family or non-relatives, formal foster care placements, other forms of family-based or family-like care placements, places of safety for emergency child care, transit centres in emergency situations, other short and long term residential care facilities including group homes and supervised independent living arrangements for children”. http://wearelumos.org/sites/default/files/research/Guidelines-11-16-2012%20For%20dissemination-WEB.pdf 12 Instruction on the manner of organization and work of a day care centre for children and youth with moderate and severe intellectual impairment FINDINGS 19
These findings indicate that the ratio of alternative vs. family-support services does not reflect the ratio of children in formal care vs. children living in their families. The majority of children (92%) live in their biological families but have only one type of service that directly serves them (DCC). With improving the system of assessment of disability the number of children with disabilities living in their families is likely to go up. This further necessitates a wider variety of services that directly support families of children with disabilities. Therefore, further service planning needs to be oriented primarily toward family-support services i.e. improving and expanding the existing services as well as designing new services along the care continuum that are currently missing.
4.1.1. GEOGRAPHICAL DISTRIBUTION AND COVERAGE OF ALTERNATIVE CARE AND FAMILY-SUPPORT SERVICES
In the country there are 30 CSWs as main administrative bodies which manage and coordinate the social protection activities. Established during the last 13 years, nowadays 30 DCCs funded by the state and managed by 24 CSWs function in all various parts of the country. Also 7 DCCs created by the non-governmental organization Poraka are functioning for children/persons over 18 years. However, there is no data whether children aged 18-26 are actually served in those centres at the moment of the assessment. Foster care services are developed in 15 municipalities.
Availability Access to a wide range of social services should be facilitated by making services available in a way to allow choice and an appropriate response to needs. 30 DCCs are available in the bigger cities/municipality centres and have beneficiaries from the surrounding regions. If we add the non-state and municipal DCCs in Skopje, Kumanovo, Radovish, Struga, Ohrid, Kocani and Kavadarci it can be concluded that their distribution in the country is relatively balanced. At the same time in 3 of the municipalities with CSW there are no family support services – Demir Hisar, Debar and Negotino, there are 240 children with disabilities i.e. 6% of the total number of children with disabilities in the country have no access to family-support service. In 3 municipalities – Veles, Valandovo and Kocani the day centres were opened in 2015 and still do not reach their full capacity. According to ISA, service needs assessment is based on the number of registered children with disabilities in the different municipalities i.e. the main criterion for opening of DCC is the number of children with disabilities locally. In this context, it is interesting that in some municipalities there are children registered with a disability with no DCC available. The alternative care provided by the foster families is unevenly distributed across the country – in half of the regions where CSWs are available there are no disabled children in foster families (Figure 2). ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 20 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA FINDINGS 21
Map of the DCCs ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 22 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
Accessibility In order to be effective the alternative care and family support services should be conveniently located and accessible for the children and their biological or foster families. Accessibility relates to the location and administration of services, the physical set up as well as clear and easily available information about the service. The access of the children with disabilities to the family support services is limited in the small settlements for two reasons: one obstacle is lack of nearby services which are concentrated in the bigger cities. Transportation is another issue– i.e. its availability and accessibility i.e. coverage, convenient time for picking up and dropping off and sufficient time for boarding and professional support, if necessary.
TABLE 3: LEVEL OF ACCESS
Type of transport Number Location Level of access
No transport available 8 Bitolia, Valandovo, Krushevo, Makedonski brod, Skopje, Low Strumitsa, Shtip
Taxi 8 Berovo, Veles, Vinitsa, Gevgelia, Kavadartsi, Kitchevo, Medium Probishtip, Shtip
Car of CSW 6 Gostivar, Kratovo, Prilep, Skopje, Tetovo Medium
Own car 4 Delchevo, Kriva Palanka, Kumanovo, Sveti Nicole High
N/A 4 Veles, Kochani, Kumanovo /Lipkovo/, Resen N/A
Only 4 centres (with own transportation) are assessed as highly CAN YOU IMAGINE accessible because they can afford to have more flexible transportation GETTING AN AUTISTIC CHILD schemes thus encompassing more clients. For 14 DCCs the transport is INTO IN A TAXI?” provided by an external provider – CSW or taxi. It makes the transport not flexible enough as it depends on the rigorous schedule and limited (PARENT OF DISABLED CHILD, FGD) resources. That is why accessibility is assessed as medium. In 8 cities where transport is not available which makes the available service not accessible for many parents – some of the parents cannot use the “I NEED TWO HOURS TO DRIVE service because they do not have their own transport: „I can’t drive him MY SON TO THE CENTRE AND there”. (Parent of disabled child, IDI) ANOTHER TWO HOURS TO PICK In order to reach the DCC in the municipality centre the beneficiaries HIM UP IN SIX HOURS WHEN from the villages use the transport of the DCC although the available THE CENTRE CLOSES – HOW transportation covers the area only partially. This makes the service MUCH TIME DOES IT LEAVE ME inaccessible for a portion of the children. In addition the parents indicate TO GO TO WORK? MY JOB IS the lack of specialization and adequate approach to the transportation: AT THE FAR END OF THE CITY SO IT ACTUALLY LEAVES ME NO As for the organizational aspect of the access the parents mention the TIME TO WORK WHICH IS WHY I inconvenient working time of the DCCs. The main issue is the early DON’T GO TO WORK.” close of the working day, which requires that parents take care of the child and in fact limits one of the purposes of the service i.e. ensure (PARENT OF DISABLED CHILD, FGD) time for the parents to go to work. FINDINGS 23
In terms of accessibility, some of the parents claim that they did not have information about the existence of the DCC in their city: “IT WAS ONLY YESTERDAY WHEN I REALISED THAT THERE IS SUCH A SERVICE IN THE CITY.” (PARENT OF DISABLED CHILD – NON USER OF SERVICES, FGD)
It is supported by the fact that the visuals and informational materials in the visited services were not sufficient as well as the overall information to parents about existing services is not sufficiently communicated: • Parents are proactively informed of existing social service by the CSW but only to the extent that the CSW is aware of whether or not the local DCC has free capacity (which is rare). Referral to services other than the state-run is not likely to occur. • Parents find out about the service from other parents, Internet, TV, a teacher. None of the users of NGO-run services had been referred by a state actor (GP, a specialist doctor, SWC or centres dealing with assessment of disability procedures). This is especially true for services that are not state-run or state-funded i.e. all services alternative to the state services. The reasons behind might be the low capacity of the services compared to the number of potential beneficiaries, their full administrative and financial dependence on CSW, hence the lack of active communication policy towards the clients.
CONCLUSIONS: • There are 37 DCCs which cover the territory of the country. 30 of them are for children and are state-run by CSW and 7 by NGO or municipality (for persons above 18); • There are no DCC available in 3 regions where CSWs are located and in 3 municipalities DCCs are in the process of opening; • As they are located in the big cities (except 1) the access of the clients from smaller settlements is restricted and depends on additional conditions; • In the majority of centres the physical access via transportation is at low to medium level of accessibility; • Information about the service availability, capacity and portfolio of services depends on the decision of the CSW, i.e. it does not reach the majority of potential clients.
4.1.2. NUMBER AND TYPE OF BENEFICIARIES OF SERVICES
Another aspect of the needs assessment and the relevance of existing family support services and alternative care are connected to their capacity (number of children, period of usage) and the type of the beneficiaries. One third of the population in the country is up to 26 years (Figure 3). That youngest age group has its highest share in the municipalities with predominantly Albanian population – Struga, Debar, Tetovo, Kumanovo, Gostivar. The lowest share of the people 0 – 26 y.o.a. is in the regions of East and South parts of the country, populated mainly with Macedonians – Demir Hisar, Resen, Kratovo, Probishtip, Strumica, Gevgelija, Berovo and Bitolia. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 24 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
The share of the registered children with disabilities is 0,7% from the total population at that age. The highest share of disabled children is in Berovo - 2,3% while in Kocani, Kratovo, Gostivar and Tetovo it is close to 0. Although the contributing factors were not analysed in details, the low proportion of registered children with disabilities is most likely due to: • Heavy and inefficient procedures of assessment of disability • Lack of correspondence between efforts and benefits – according to the parents these are free hospitalization, coverage of some share of medicines and certain financial support. • Stigma over the children with disabilities and the wish of the parents to avoid exposing them at the public. FINDINGS 25
There is a range of municipalities where the number of beneficiaries of DCCs is higher than the number of registered children with disabilities. This phenomenon is due to the fact that there is no exit from the DCC service and as a result clients beyond 26 continue to use the service. At the same time the number of newly registered children remains low because of issues around the disability assessment procedures demotivating their parents.
Generally, the diversity of children’s needs cannot be met by one universal service only. Therefore, a proper needs assessment and service design process must include a detailed target group analysis. The purpose of such analysis is to identify the client profiles prior to designing services for them. Further below the actual client profiles were developed for each existing service to help identify service gaps i.e. which groups of children have unmet needs. Tables 4 to 7 present the profiles of the clients of the state-run DCC, foster care, NGO-run DCC and developmental service. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 26 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
TABLE 4: THE TYPICAL CLIENT OF THE STATE DCC
Criteria Practice Comments The major part of the children and persons in DCC are over 10 years. Age 5 + There are also persons over 26. Moderate to heavy physical or The children categorised from the autistic spectrum rarely become Disabilities intellectual disabilities beneficiaries of the DCC (except of the ones specialised for autism). The parents actively take care for him/ Because of the working time with children (mainly from 8,00 to Families her and at least one of them is flexible 14,00), parents need to ensure additional care to be able to fit to this enough working time with the children. In the settlement were the service is If the route of the DCC vehicle does not include the village, the Living situated or in a close distance from the parent can hardly use the service. DCC or at the way of the transport The children/persons in the DCCs rarely go to school/work as the Other services Alternative care (foster care) working time of the centre and the school/regular worktime coincide. Actual client profile: The actual client of the state-run DCC can have a diverse type of disability, any age from 5 to over 26, not visiting school and not working.
TABLE 5: THE TYPICAL CLIENT OF THE FOSTER CARE
Criteria Practice Comments There is no age limit for the foster client. The maximum age of the Age 5 + foster parent is 64. Moderate to heavy physical or Disabilities intellectual disabilities The connection of the child with Majority of the children in foster care were placed in institutions Families biological parents is limited or before foster family. That is why the connection with the biological doesn’t exist at all family is lost. Living Other services DCC Actual client profile: The actual client of foster care comes from a residential institution or another service with rather heavy disabilities, has lost the connection with family and relatives.
TABLE 6: THE TYPICAL CLIENT OF THE NON-STATE DCC
Criteria Practice Comments The major parts of the persons in DCC are elder people over 25 – Age 18 + 30 years. There is no mechanism to exit the service. Moderate to heavy intellectual Disabilities It is not for the people from the autistic spectrum. disabilities The parents actively take care for him/ Families her In the settlement were the service is Living situated or in a close distance from the DCC or at the way of the transport Other services NA Actual client profile: In the non-state DCC the client is over 18 years with moderate to heavy intellectual disabilities, living with the family, not working. FINDINGS 27
ТАБЕЛА 7: THE TYPICAL CLIENT OF THE NGO DEVELOPMENTAL SERVICE
Criteria Practice Comments
The age of the children is important as according to the Age 1 to 6 theoretical approach the chances to influence the impairment of the child are best up to 6 years
Moderate to heavy intellectual Disabilities disabilities and children categorised from the autistic spectrum
The parents actively take care for him/ There is a list of waiting children, the capacity of the service is Families her not enough
Living in Skopje and in the close cities The therapy for 3 – 6 year old children is organised after the end Living with Albanian population of the working day
Other services NA
Actual client profile: The client of the developmental service is a small kid, 3 to 14 years old, (although primarily below 6), with developmental disorders and intellectual disabilities.
It becomes obvious from the findings above that there is a lack of services for the children up to 6 (information for the kindergartens is available in 4.2.2 “Cooperation with other sectors”). The only service identified for this target group13 has 43 active clients and a waiting list of 50 applicants pending. The children from the autistic spectrum, too, do not have specialised opportunities to receive support. The only service identified is new and still not sufficiently developed. The children integrated in the school can hardly use social services. Only few of the DCCs mentioned that they have clients who visit school. Similarly, those over 18 are not into employment. The children with mild to moderate disabilities have no access whatsoever to support services to facilitate their independent living and development. None of the available services targets such children. In any case the beneficiaries are dependent on the families (either biological or foster). The very family is not recognised yet as a beneficiary of any service (in only one service the parents are involved as co- therapists).
CONCLUSIONS: • The family support services for the children with disabilities are not sufficient. Only a small share of them use such services (below 10%) and having in mind the limitations of the assessment of disability, the usage level is even lower; • There are unmet needs of big groups of disabled children e.g. young children below 6 years of age; the children from the autistic spectrum; children with disabilities who visit school; • With few exceptions the families are not actively involved into the partnership with the services.
13 Provided by Imago Plus, Gazi Baba, Skopje ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 28 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
4.1.3. FUNDING (HOW BUDGET IS ALLOCATED AND SPENT)
Sources of funding Sufficient financial resources are considered as a precondition for the provision of adequate quality. A lack of financial resources will put pressure on the delivery of quality social services. Sustainable funding should be in line with the overall objectives of social services, allowing the service provider to provide social services within the required infrastructure. Sustainable funding is also necessary to ensure that the provision of social services is continuous and to avoid the negative impacts on the user of disruption in care. Funding for social services for children with disabilities is available through: • The state budget through the Social Work centres- available for 30 state-run DCCs. • The state budget through funding programmes such as “Decentralisation” – available for 4 NGO Poraka-run DCCs (please note these are mainly for adults, not children, hence serve a small group of children between 18-26 as defined by the law) • Municipal budgets – available for only 3 DCCs in the country. Funding is not delegated to municipalities by the state. Therefore, wealthier municipalities only will be able to afford to develop their own services.
The following table indicates the 2014 National budget spending for service delivery to children with disabilities distributed between state and non-state providers:
TABLE 8: THE STATE BUDGET FOR DIRECT SERVICES AND SERVICE ADMINISTRATION
% of total spending Description State budget spending 201414 state vs non-state State-run DCCs and community-based 74,216,000 denars residential places (e.g. Small group home, 83.76% Direct (app. 1,216,655 Euro) Sheltered living, etc.) services 14,400,000 denars NGO-run DCCs 16,24% (app. 236,065 euro) 460,450,000 denars Centres for Social Work and ISA 99,56% Service (app. 7,557,418 Euro) administration 2,000,000 denars NGO-run activities 0,43% (app. 32,786 Euro)
There is a varying degree of service flexibility to ensure they respond to the clients’ needs. The level of flexibility seems to co-relate to the funding mechanism behind them. On the other hand the funding mechanism obviously relates to the level of financial sustainability of service provision. The table below illustrates that there are no equal terms for all providers in how they have access to funding: state-run DCCs have guaranteed funding (they do not apply for it) that sustains their existence fully; Poraka-run centres have part of their funding from the state budget but they have to apply for it; the development of municipal services depend on both the wealth and willingness of the municipalities (as they do not receive funding support from the state). Disability NGOs have limited possibilities for direct service provision – they have formal access to very limited funding to ensure sustainable and needs-oriented disability services for children with disability.
14 Source: budget 2014, Financial ministry official website FINDINGS 29
TABLE 9: CORRELATION BETWEEN TYPE OF FUNDING AND SERVICE FLEXIBILITY AND SUSTAINABILITY
Implications to service flexibility to respond to local Degree of Service type Number Funding source needs sustainability State-run 30 State budget The DCC management have little flexibility to manage their high DCCs for (allocated through the budgets as they do not have influence on the financial planning children with CSWs) of the service. Therefore, the service management has little disabilities room for improving the service design hence service quality is hardly influenced by service staff. NGO Poraka- 4 Mixed: state co- The provision of state funding has shaped the NGO-run average run DCCs for funding - own service by exactly the same model as state-run DCC. This persons above contribution (grants) does not allow the NGO-run service the flexibility needed to 18 respond to local needs.
Municipality- 3 Municipal budget Municipalities are not co-funded by the state. The law average run DCCs invites them to fund social services without imposing such a responsibility i.e. it is not mandatory. Costs should be paid from municipal budgets. This makes services less sustainable and also limits poorer municipalities to develop social services locally. Children from municipalities in remote or mountainous areas have smaller access to services provided by the DCCs (usually located near the CSW i.e. in bigger towns)
15 Initiatives 136 Predominantly own Most NGOs of or for persons with disabilities identified low by NGOs – contribution – donor in that report15 are inclined to provide services and direct some provide programmes and support to children and adults with disabilities. However, services to grants they have limited access to state funding programmes. These children and *Of them 1 NGO only programmes are not designed as open call granting schemes adults with has received state and there is little information about the funding priorities and disabilities grants in addition criteria. Almost all of these NGOs depend on foreign donors to Poraka (indicated or municipal funding (which in itself is quite scarce). This above) undermines the sustainability of their work greatly since such organisations have poor chances to build capacity.
While grass-root and disability NGOs at large potentially have high level of flexibility to design and provide needs-oriented services, they have limited access to public funding and big dependence on their own financial initiative hence services are not financially sustainable (Figure 6). On the other hand, guaranteed state funding (which is not tied up to performance indicators) provided with no flexibility of service design may result in high financial sustainability for services that may not necessarily respond to the needs.
15 “Mapping of Disability Persons Organisations“, Skopje, December 2014 (commissioned by UNICEF and run by Open the Windows) 16 “Mapping of Disability Persons Organisations“, Skopje, December 2014 (commissioned by UNICEF and run by Open the Windows) ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 30 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
Extent to which the financing of social services provides opportunities for adequate quality and in accordance with their objectives The main principle of financial planning of the 30 DCCs is the amount of subsistence costs17 spent in the previous financial year. This is used as a basis for planning next year’s budget. The budgets cover the overall subsistence costs of the centres including costs for transportation, meals and materials needed for the work with the respective number of clients. As there is no financial standard for one client that forms the overall DCC budget, the number of clients is a not substantial principle of financial planning. Financial planning is not tied up to performance indicators. Budgets are based on neither the amount of work (for example, number of sessions) nor the results achieved with each client. Budgets do not allow enough flexibility to ensure sufficient professional development of staff e.g. clinical supervision; organizational development supervision/consultancy; additional training oriented to specific needs of the centres’ staff which is not provided by ISA, etc. Service managers are expected to manage the service without being able to manage the service budget. The implications are that management that is stripped of a very significant part of its functions (resource management) has limited capacity to bring about quality services. Moreover, as the number of centres is limited, clients have little choice among different providers hence natural competition cannot be fostered. This, too, limits the focus on service quality.
Extent to which the financing is oriented in favour of family-support services This indicator is analysed in terms of how much investment of resources is made in support to caring for a child with disability as well as how this investment is structured to ensure the right of children with disabilities to live in their biological families. The terms of financial support to foster and biological parents of children with disabilities is prescribed by the Social protection legislation. The table below indicates the rights pertained to foster parents and biological parents caring for a child with disability as per the Social protection law.
17 Includes staff salaries; goods and services; capital expenditures – as of National budget for 2014, source: official website of Ministry of Finance FINDINGS 31
TABLE 10: FINANCIAL SUPPORT TO FOSTER AND BIOLOGICAL PARENTS
Support type Foster family Biological family
Financial aid 1. Permanent financial support allowance (as per 1. Permanent financial support allowance (as per art 57 and 61) art 57 and 61) 2. Support by third person allowance (art.72 , 74) 2. Support by third person allowance (art.72 , 3. Part-time salary allowance(art.82) 74) 4. 84 a - allowance (remuneration) for blindness 3. Part-time salary allowance(art.82) (in some cases only) 4. 84 a - allowance (remuneration) for blindness 5. 84 b - allowance (remuneration) for deafness (in some cases only) (in some cases only) 5. 84 b - allowance (remuneration) for deafness 6. 84 v -the right to remuneration of a single (in some cases only) parent who has a child with disabilities 6. 84 v -the right to remuneration of a single 7. Financial benefits as per art.71a parent who has a child with disabilities 8. Financial benefit as per Art.36 and 37 Free-of-charge services Social and health insurance covered by the state Social and health insurance not covered by the state Right to use additional Right to all child care services (kindergarten, DCC, Right to all child care services (kindergarten, DCC, services schools, etc.) schools, etc.)
The table above indicates a trend in state investment of financial „WHAT IS THE LOGIC resources in favour of supporting foster care for a child with disability BEHIND THIS - BIOLOGICAL vs biological family care. Although the exact monthly amount of PARENTS GETTING allowances per child varies on certain criteria defined by the law e.g. ALMOST DOUBLE LESS age of child, number of children, degree of disability, inflation rate, THAN WHAT IS PAID TO etc. this misbalance is quite obvious. A FOSTER CARER AND 5 On a number of occasions both NGO interviewees and parents have TIMES LESS THAN WHAT IS commented that the size of financial support for foster care double PAID TO AN INSTITUTION exceeds that for biological families. PER CHILD?! DOES THE STATE ENCOURAGE ME TO LEAVE MY CHILD TO STATE CARE? WHAT’S POINT – I AM THE BEST CARER FOR CONCLUSIONS: MY OWN CHILD!“ PARENT, FGD • Financial planning is based on the principle of main subsistence cost of the service i.e. is service-oriented rather than clients’ needs-oriented. The methodology of funding is not one that fosters improvement of service quality as it is not tied up to performance indicators. The funding principle has limited capacity to ensure the service is oriented to users’ needs as well as the needs of the system to be able to work towards users’ needs because it stripes from direct service managers 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 to public funding;
• The financial planning favours alternative care (e.g. foster care) of children with disability vs. biological family support. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 32 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
4.2. ORGANIZATIONAL ASPECTS
4.2.1. STAFF STRUCTURE AND AVAILABILITY OF REGULAR TRAINING OF STAFF
Significant importance for the quality of the services and care has the organizational structure and the staff structure in particular. It is because in the social services the human factor is crucial in regard to how the needs of the beneficiaries are met. The state run DCC functions as a department in the structure of CSW. In this sense they don’t have own management. There are only coordinators who take care for the everyday routines though don’t take decisions, control financial flows etc. The staff structure in the DCCs and in the every service also, is determined by the goals, targets main activities and the outcomes. The principles and the approaches to the client are important as well. For example when talking about the work with disabled children it is essential if the predominant approach is medical or social. 18 This approach determines the way of working (i.e. the level of client’ involvement, facilitating the interaction between the client and the society, the overall attitude (negative or neutral) to the disability) and the outcomes (level of social competence for independent living). The key indicators for the analysis are: • Number of professionals as a whole; • Ratio between the specialists, working with clients and the very clients; • Type/profile of competence. The total number of staff working in the DCCs is 135 (Figure 6). Of them 99 are professionals’ working with children, i.e. the ratio between the staff and the children is 1:4. In the 7 DCC - Veles, Gevgelia, Delchevo, Kratovo, Kriva Palanka, Makedonski brod, Skopje (for children with Cerebral Palsy) the ratio is less than 1:5. Given that all children are present in the centre at the same time, this staff/client ratio is only sufficient to ensure group activities but not sufficient for carrying out individual work with children and development activities. Another substantial factor is the type of the staff. The ratio professionals/technical and supportive staff is 3:1. The availability of 36 people supportive staff and 26 nurses, or 62 people (almost 50 %), which are taking care for the space, hygiene, transportation and medical needs, shows that predominant part of the efforts are aimed at providing working conditions and satisfaction of basic and medical needs instead of those related to social skills. In this sense only 73 persons are supporting the development and building skills, which is insufficient to achieve significant results.
18 The medical model of disability views disability as a ‘problem’ that belongs to the disabled individual. It is not seen as an issue to concern anyone other than the individual affected. For example, if a wheelchair using person is unable to get into a building because of some steps, the medical model would suggest that this is because of the wheelchair, rather than the steps. The social model of disability, in contrast, would see the steps as the disabling barrier. This model draws on the idea that it is society that disables people, through designing everything to meet the needs of the majority of people who are not disabled. There is a recognition within the social model that there is a great deal that society can do to reduce, and ultimately remove, some of these disabling barriers, and that this task is the responsibility of society, rather than the disabled person. http://www2.le.ac.uk/offices/accessability/staff/accessabilitytutors/information-for-accessability-tutors/the- social-and-medical-model-of-disability FINDINGS 33
Besides this general picture it is necessary to be noted that in most centres no speech therapists, psychologists, physiotherapists are available. It indicates the limited opportunities to work on children development. The small number of social workers (14) is also indicative, considering the need to work with parents and to provide family support. Similar is the understanding of the NGO representatives „there are buildings, but no staff“. (IDI, NGO). Moreover, it is noticeable lack specialization of workers in DCC. The selection approach is similar and link between the needs of children and the type of workers was not identified (e.g. in case of predominant “THE CHILD WITH AUTISM number of children with speech problems to increase the number of NEED SPECIAL TREATMENT, speech therapists). NOT ONLY DEFECTOLOGIST” (PARENT OF DISABLED CHILD – In regard to the services provided by NGO, there is no significant NON USER OF SERVICES, FGD) difference. DCC of NGO has similar staff structure and ratio to the clients and declares that they work mainly in groups. The only service, which completely individual, is of the NGO, working on children development. With 7 specialists they work with 44 children. The specific is that each of them works 3 times a week with each child in 40 minutes sessions. The quality of the services provided depends also on the presence of a system for training and staff qualification improvement. This qualification should be connected with the delivery, support and evaluation of the service provision. According to the results of the inquiry, the teams of CSW and DCC have passed the trainings as follows: for 2015 the number most often is 2, for 2014 –1 and for 2013 the number is the highest - 3 trainings on average. Some of the respondents mention very high number of trainings (24, 18, 16), that is we comment the most often number mentioned. The most common training topics among the DCC are related to the specific work for development of disabled children, work with families and communities, case work (needs assessment and planning). ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 34 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
At the same time the parents who use the services of DCC have objections to the staff competence, regarding to the individual work and child development. They have a suggestion to concentrate the training efforts for the staff to new methods and approaches for children development. The staff of DCC recognises its qualification shortages and mention „THE STAFF TAKES CARE OF as training needs some specific methods e.g. developmental methods THE CHILDREN ACCORDING TO for children with autism, new methods for working with children who THEIR OWN ABILITIES. THEY’RE have been in institutions, children with challenging behaviour, psycho- NOT PREPARED FOR TRAINING therapeutic methods, sensor communication, work with the local AND DEVELOPMENT OF THE community etc. CHILDREN“ With regard to the CSW staff, the parents perceive it as rather (FGD, PARENTS, USERS OF DCC) administrative and do not expect professional work with children from CSW. Here the criticism is focused on the information functions of CSW – advice and guidance where are the proper services and how the parents can take advantage from them. „WE WENT AND TOOK THE CHILD AND WE STAYED ALONE. WE In regard to the foster parents there is a discrepancy between the HAVE TAUGHT OURSELVES, TRY opinions of the representatives of the CSWs and the very foster ONE THING TODAY, TOMORROW parents. According to the first, there is developed and implemented ANOTHER ... AND SO ON. THE training program, according to the latter; there is no such, at least until FIRST TRAINING WAS IN 2015. 2015. This applies to all families including those who care for children IT WAS A TRAINING PROGRAM with severe disabilities grown in an institution and placed in foster care. PRIDE, BUT FOR HEALTHY The respondents in the inquiry indicate high level of availability for both CHILDREN. VERY USEFUL.“ forms of professional support (i.e. supervision and intervision)– nine (FGD, FOSTER PARENTS) from ten DCCs indicate they receive regular supervision, eight from ten – regular intervision. On the other hand, the in-depth interviews and observations in the DCC reveal that there is no practice of clinical supervision (specifically related to work with individual cases) to staff “THEY HAVE NOT COME FOR 5 members. The staff members interviewed indicate that whenever they YEARS, THEY HAVE FORGOTTEN have need of professional support on difficult cases, they seek personal WHAT THE CHILD IS, SOMEONE contacts with specialists they know (e.g. doctors, mental health JUST CALLS ME AND ASKS IF HE workers, etc.) GOES TO SCHOOL [AND THE CHILD HAS SEVERE DISABILITIES]?” The majority of foster parents do not indicate to have received any support, moreover, they do not have regular meetings and discussions (FGD, FOSTER PARENTS) with the social workers from CSWs. FINDINGS 35
CONCLUSIONS: • The number of professional staff working with children is only sufficient for group work but not sufficient for individual work; • The ratio of child development staff vs basic needs staff is 1:1. This ratio does not give weight to the priority of the service i.e. development of the children and is hence nor relevant to the goal of the service (skills for independent living); • Despite the indicated number of trainings and topics, both staff members and parents comment on the need of further training on working with children with special needs; • Up to 2014 the foster parents did not receive any training and support.
4.2.2. COOPERATION WITH OTHER SECTORS
The needs of children with disabilities are comprehensive and encompass all areas of their lives at the same time: health issues (early identification of disability and adequate treatment), educational (targeted and adequate effort to include them in the mainstream education) and social (develop their potential to the fullest to participate in society with adequate support to do so). This calls for available services being planned and developed with participation of various stakeholders active in all those areas – relevant ministries, disability NGOs, parents groups, and human rights groups. The analysis here looks at the extent available services are planned and developed with involvement of all stakeholders and are of inter-sector nature. The National Strategy for Equal Rights of People with Disabilities (revised) 2010-2018 has been developed by a working group representing the MoLSP, Institute for Social Activities, the National coordination body for equal rights of people with disabilities in the country, the National Council of disability organisations and local and national consultants. The Strategy sets a direction of the disability policies that is line with process of replacing the medical model of disability with a social model of disability. The Strategy sets goals and objectives the achievement of which requires multi-sector and inter-sector communication and cooperation. The implementation of the strategy also requires involvement of other ministries e.g. Ministry of Health and Ministry of Education. However, they were not involved in the development of this strategic document. Moreover, the representatives of those two ministries indicated in the interviews that no official requirement has been imposed to participate in any format for inter-sector cooperation. Planning of services for children with disabilities is recognised largely as a responsibility of the Ministry of Labour and Social Policy. The MoLSP is involved in planning the services, their geographical distribution and design; rulebooks and methodologies; evaluation and monitoring systems (responsibility of ISA under the MoLSP). Healthcare and educational services are developed by the respective ministries. This analysis has not explored in detail the planning practices of each ministry. Nevertheless, the interviewees from those ministries indicate that the services are entirely planned by the respective ministry. Sometimes NGOs are involved in the process but there is no information on formats where involvement of other stakeholders such as disability NGOs is mandatory. To the extent that disability, human rights and parents’ NGOs are in dialogue with the government, they have little involvement in the process of decision-making in terms of planning. Rather, some NGOs are involved in working groups and have a consultative role. Working formats for planning organised by the MoLSP with mandatory involvement of NGOs were not identified. The government has established a National coordination body for equal rights of people with disabilities ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 36 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
involving representatives of NGOs and relevant ministries and institutions. The coordination body meets six times a year. However, it has no binding opinion and decision-making is done by the respective ministries. The report on Mapping of Disability Persons Organisations19 revealed that most of the 136 identified disability NGOs are willing to working with government and feel they can have a voice in policy-making. This represents a huge potential for expertise from professionals and experts from experience to be involved in planning and policy-making processes. 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 families need:
TABLE 11: MATCHING NEEDS TO INTER-SECTORAL SERVICES
Needs of children Sector Services available Experience of children and families with disabilities EARLY Healthcare Disability identification services: • Parents need to find their own path through IDENTIFICATION OF • Patronage nursing service – under the system. Especially parents outside DISABILITY the primary health centres across the Skopje. Many say they felt unsupported (especially when country. and discouraged by local/first-contact disability is not • GPs – As Ministry of Health indicates, professionals (e.g. GP, paediatrician) to seek known at the time GPs, gynaecologists and all doctors in help because the child’s problems were only of birth) contact with possible child with disability seen by the parent and were not recognised are insufficiently trained in early detection by the professional • Disability identification takes long time, sometimes 1.5-2 years to diagnose, which delays early intervention • Includes visiting several doctors, which takes time, effort, and money. Parents who can afford it, pay for private consultations with international doctors REHABILITATION Health • Ministry of Health – Rehabilitation • Professionals need to develop more AND DEVELOPMENT Social services for children with disabilities competence in methodologies for intervening Individual are largely lacking specially with behavioural and mental development plans • Institute for rehabilitation of hearing, health problems (e.g. autism and some rare need to be developed speech and voice – based in Skopje diagnosis) by relevant and Bitola • Rehabilitation is not sufficient for those professionals close • Mental health Institute, based in who have access to it; for many it is not to child’s place of Skopje accessible living and adequate • Institute for physical medicine and • Many parents pay for private rehabilitation to the child’s needs rehabilitation (for children and adults) – sessions with their children which is a 1 rehabilitator available per shift substantial financial burden for them • DCCs – insufficient rehabilitation • Some families change cities of residence to staff and rehabilitation services; be closer to rehabilitation and development insufficient activities related to the services as these are lacking in their original child development. town
19 Mapping of Disability Persons Organisations, Skopje, December 2014 FINDINGS 37
EDUCATION Education Of all 186520 children with disabilities in • Parents assist the child to, in and from school Children with the 7-17 age group: or hire a private defectologist to assist the disabilities need • 1147 children visit school (72521 child during classes. This creates a huge to develop their children with disabilities visit burden for parents as school defectologists learning capacity mainstream schools. Some of them are are insufficient in number. to the fullest segregated into special groups within • Few of the interviewed parents have used and possibly in the building of the mainstream school. kindergartens when their children were at a mainstream • 42222 children visit special schools that age. educational i.e. not part of an inclusive education • Parents indicate kindergartens’ staffs often environment. system discourage them to apply for the service or • 125 defectologists available for the convince them to quit using the service (often whole country23 with the argument that the other parents • Kindergartens in the country - 5724 are reluctant to have disabled children in in 38 municipalities out of total 84 the groups). As a result, parents either do municipalities not use kindergartens (if one is available in • Children with disabilities at their municipality) or use it for only a short kindergarten age (0-6) 136925. Children period of time after which the child remains with disabilities visiting kindergarten in at home. the country – 14126 (app. 10.30%). EMPLOYMENT Social Services specially targeting employment With some exceptions children in the DCCs do As they grow Education skills were not identified. not get a job at the exit of the service. In Prilep up children with DCC 2 persons of all users have left the centre disabilities need to due to employment. develop potential to adequate employment or supported employment.
CONCLUSIONS: • Existing services have little or no inter-sector link which potentially reduces their capacity to respond 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); • Involvement of decision-makers from all sectors (social care, health care, education, disability NGOs and parents) in service planning has the potential to more adequately perform needs- assessment hence to greatly improve the quality of existing service network.
20 Source: Lirikus system 21 Source: interview with Ministry of education 22 Source: interview with Ministry of education 23 Data provided by Ministry of education upon request 24 “Institutions for care and educations of children – kindergartens”, 2014, State Statistical Office. Data on MoLSP’s official website indicates- 63 kindergartens. 25 Source: Lirikus 26 Iinstitutions for care and education of children -kindergartens, 2014, State Statistical Office.. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 38 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
4.3. PROCESS OF SERVICE DELIVERY
4.3.1. SERVICES PROVIDED BY THE STAFF
The process of service delivery by the staff is analysed based on: • the perception of DCC service goals by the different stakeholders, • relation between the goals and activities • relevance of the activities to the individual needs assessment which identifies the multiple needs of the child/person served.
Perception of DCC service goals The majority of DCC27 are not specialised in terms of working with children of a particular kind of disability or age group. This means that the goal of existence of the DCC should be common for all clients adopting specialised and specific strategies for each client depending on their abilities, age or type of disability. With this concept in mind, the analysis here looks at the extent of shared understanding of the service goals by various stakeholders. This is important since the underlying perception of what the service aims to achieve has implications on the adopted strategies (spectrum of activities) applied in the centres, the expectations of the parents as well as the overall level of understanding of both staff and parents of how well the service achieves its goals.
TABLE 12: COMPARISON AMONG DCC GOALS UNDERSTANDING BY DIFFERENT STAKEHOLDERS
Stakeholder Understanding of service goals From the perspective The goal of all the services for children with disabilities should be development of skills „for a maximum of the NGO possible level of independent living in the community“. (IDI, NGO) From the perspective The goal should be to form skills of children, e.g. stop using diapers, eating independently, going to school, of the state socialising, and the goal in terms of the parents is „letting them have 8 hours off from child care“, being administration informed and ensuring self-support as a group.(IDI, ISA) From the perspective The goal of the services should be “the development of the children so that they can live without us one of the parents day when we’re gone” (FGD, parents – users of services).
Although the service goals seem to be perceived in a similar way, there are fundamental differences (especially between staff and parents) in the way that the possible level of development of the child can be achieved. The service staff set goals in terms of more basic skills development e.g. hygiene, independent feeding, etc. On the other hand, parents expect that basic skills development should be only one step towards achieving a greater level of independent living. This finding indicates that there is no shared understanding of the service goal hence raises different expectations of the ultimate outcome for the children that the service is oriented to. The different perceptions of the service goal, therefore, 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, including the criteria of success and how performance is measured and evaluated.
27 Except 4 DCC, which were recently opened. FINDINGS 39
Relation between the goals and activities Activities with children Generally, in order to be effective quality services, there should be logical link between the goal set and the activities employed to achieve it. This link is seen differently by the different stakeholders: From the perspective of the majority of the DCC staff the achievement of service goals is done by performing certain types of activities as prescribed by the Rule book. (Figure 9)
From the parents’ perspective the range of activities employed in the DCC are not oriented towards achieving the ultimate goal. Parents think that the main activities are nutrition, developing skills for personal hygiene, community activities - hiking, concerts, holidays. This can be easily explained in the context of the differences of perception of service goal which was commented earlier. This is also why in terms of the fundamental goal of child development, parents believe there is no progress with their children as a result of the work with them in the DCC. The opinion of NGO representative is similar. In support of the finding that the ultimate service goal is not focused on independent living skills is the fact that there are no identified “FEED THEM AND NURSE cases of children leaving the centre due to getting a certain level of THEM - DCC HAS BECOME independence i.e. the goal has not been achieved. The children spend A PLACE FOR DINING, ALL years in the DCCs (sometime more than 10) and there are neither CHILDREN PUT 10 KG MORE, criteria for exiting the service nor any prospect of leaving the service. MY SON - FEED HIM ANY Parents themselves will be happy to see their children employed one TIME, HE WILL ALWAYS EAT“ day as much independently as possible, which would also respond to (FGD PARENTS USERS OF DCC) their most essential question – “What will happen to my child, when we die?” (FGD, parents, users of service). Obviously, the development of social and professional skills should be one of the strategies towards achieving independence. However, some “THEY DON’T LEARN ANYTHING practices observed in some DCC undermine this goal by not providing IN THE DCC, THE CHILDREN ONLY sufficient opportunities for practicing such skills (e.g. in one of the STAY THERE DURING THE DAY”. centres the girls who are able to cook, do not practice this ability in (IDI, NGO) the centre, instead, the meals are prepared externally and only served in the centre). ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 40 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
In the DCCs of NGO the situation is pretty similar though there are some differences: The efforts to increase the level of social competence are related to forming skills for independent travelling in the city, everyday cooking, and group work not only with the purpose to produce objects (boxes, paper flowers and magnets) but to improve the skills for communication with peers. Another positive model of practice, tailored to the needs of the children are the individual sessions which take place in one of the services provided by NGO where a specific therapeutic method is applied.
Activities with families Effective work with the family should be an essential element of any family-support service. From the perspective of DCC staff, there are activities in the centre directly targeting the parents (Figure 10).
Concerning the parents’ involvement there are three levels of “I FEEL LIKE A DELIVERY participation that were identified: GUY – HANDING IN THE CHILD, HAVE THE DOOR • Non-participation: Parents of children using state-run DCCs in CLOSED UNDER MY NOSE bigger cities particularly comment that they are not involved in the AND THEN KNOCKING ON development process of their children e.g. not taking part in the CLOSED DOORS TO PICK individual care planning and assessment; not receiving counselling or HIM UP.” expert consultation on how to support the developmental activities at home; in some cases they are even physically not let in the centre to (PARENT USING A STATE-DCC, FGD) observe the work with their children;
• Informal participation: Parents of children using state-run DCCs in smaller towns indicate that there is some level of communication with the staff and involvement in the activities of the centre. This results from the close informal connections among the people in those areas as well as from the long period of stay of the children in the centre which additionally facilitates the informal communication;
• Strong involvement: Parents of children using NGO-run services both in bigger cities and smaller towns indicate that they feel very much involved in the process of working with their children (planning, review, evaluation). Almost all of them comment they feel partners to the staff in the developmental activities with their children in order not to discontinue the therapy in the centre. Some parents are already at a point when they feel ready to contribute to service development or even run services of their own to help cover more children. FINDINGS 41
The assessment team identified that there is certain correlation between the level of involvement of parents and the level of satisfaction of parents with the service and the outcomes it achieves for the children “WE KNOW WHAT THEY (Figure 11). WANT TO DO WITH THE CHILD, WHY THEY DO IT AND HOW THEY PROPOSE TO DO IT. AS A PARENT I KNOW WHAT TO DO AT HOME TO SUSTAIN THESE EFFORTS.”… ”WE NOW FEEL WE WANT TO VOLUNTEER TO HELP THIS PROGRAMME EXPAND TO WORK WITH MORE CHILDREN.“
(PARENTS USING NGO-RUN SERVICE, FGD)
Relevance of the activities to the individual needs assessment which identifies the multiple needs of the child/person served Generally, the quality of any service depends on how effectively the approach of case management is applied. The analysis below covers two aspects of case management: • How well the case management approach is applied; • Who takes part in the case management process.
How well the case management approach is applied All the professionals declare that they realise the needs assessment and the care planning. The needs assessment and planning is carried out every six months. This process includes all the specialists in the service. In some DCCs there are certain key workers/mentors. However, they take part only formally (according to the opinion of the parents and part of the specialists) and do not coordinate the work of the multidisciplinary teams. The approach used for assessment is not integrated because every specialist (defectologist, psychologist, or speech therapist) prepares their own separate plan. These different plans are not always united in one general plan for the client. Regarding the content of the plans, it is observed that there are no clear goals planned, no deadlines, the activities are repeated yearly in all the „IN THE STATE DC THE plans. The review of the plans does not show any big difference in the INDIVIDUAL PLAN IS MADE skills development of the children during the years. According to the ONLY BY LAW“ parents, the individual plans are not specific for each client. (FGD, PARENTS) As a counterpoint, the parents of children, using the therapeutic service of an NGO, know the plan and participate in its implementation. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 42 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
Who takes part in the case management process One of the most important characteristics of the individual planning is the involvement of the person and his family from the very beginning. According to the professionals working in DCC, among the different type of specialists who participate in the planning process, most active are social workers, defectologists and psychologists. They also stated that parents and children are also actively involved in it.
The situation with the parents is the opposite. They don’t feel involved in this process. This means that even if they are invited to planning sessions, they do not recognise the purpose of it. This means that their participation is limited to informing and discussing the particular case of the child.
CONCLUSIONS: • The service goals are perceived in a similar way, but there are fundamental differences (especially between staff and parents) in the way that the possible level of development of the child can be achieved; • From the parents’ perspective the range of activities employed in the DCC are not oriented towards achieving the ultimate goal; • The achievement of the goals becomes distant and infeasible (children continue to use the service even beyond the age of 26); • The case management is fragmented, dispersed among different specialists, the methods for assessment and planning are diversified; • The parents are not satisfied with the lack of progress of their child, nor with the fact that they are not involved; • There are elements from the models of NGO provided services which can be considered as good practices, such short-term therapeutic interventions which result-oriented; individual sessions with children; planned involvement of the parents which is a component of the overall work with the child (parents are trained and encouraged to practice the same interventions at home). FINDINGS 43
4.4. BENEFITS AND OUTCOMES This part of the analysis will look at the extent to which the system of service provision is result- oriented i.e. social service providers offer services that achieve results by focusing on the benefits for the children with disabilities and their families as well as how achievements are reported to stakeholders.
Evaluation of impact As each child’s abilities and needs are different, the development work needs to be planned individually for each child and progress towards the goal monitored regularly. An important development in the last years has been introducing the concept of individual planning of the work with children. In reality, the observation of the documentation within this assessment reveals that individual development planning is organized as follows: • Individual plans rarely differ greatly from group plans; • As a recent trend individual plans are developed by each professional separately rather than one multidisciplinary plan for each client; • The plans have too broad and unspecific aims rather than being broken down to specific, measurable, achievable and time-bound objectives (staff indicate that they follow the aims as formulated in the forms developed by ISA and those are unrealistic and unachievable in most of the cases); • Timelines and milestones for achieving the objectives are vague or missing; • Individual plans are reviewed at long intervals e.g. once every two years (sometimes once a year) • Children and families do not have access to the individual plans (e.g. copy); • There is no mandatory format to involve parents in planning and reviewing the plans and the achievements.
Whilst individual planning of work is practiced in a way that achievement is difficult to measure, it is hard to more general collect data indicating “I WANT THEM (DCC STAFF) TO the level of utility of these services i.e. what are the outcomes for the TELL ME SOMETHING AT LEAST: child in the context of the general aim of the service (socialization and WHAT THEY DO WITH MY CHILD, independent living). WHY THEY DO IT AND FOR HOW LONG WILL THEY DO IT!” The function of monitoring and evaluation is generally performed by ISA, (FGD, PARENTS, USERS OF SERVICES) and includes field visits, monitoring and inspecting the work of DCC. ISA prepares reports with proposed measures and recommendations that are submitted to the director of CSW. For the implementation of the activities in terms of addressing the proposed measures and recommendations, feedback is provided from DC staff to ISA. For the purpose of monitoring and evaluation the following activities are undertaken mainly through collecting data from the CSWs and field visits. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 44 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
TABLE 13
MONITORING DATA COLLECTED EVALUATION DATA COLLECTED This process is related to ongoing observation of how the This process is related to evaluating the extent to which services are being provided i.e. how specific activities the final goal of the services is reached i.e. socialization towards the final goal are being implemented and independent living
Central level data collection (ISA)
• ISA is being notified within 5 days for placement of any child • field visits to foster families – data on the development of the in formal care e.g. foster family or institution child (e.g. does the child visit school) • Service implementation data (residential institutions, foster care, DCC): - Programme activities - Availability of individual plans - field visits to children in institutions - 3-month general reports on the work of the services and skills development (hygiene, socialization, motor skills, speech abilities) for all DCC • Data on training needs of staff
Service level data collection (e.g. DCC)
• Individual skills development monitoring – by parents and DCC staff indicate that the ultimate goals of development of service staff the children are not realistic (difficult to achieve) and hard to • Specialized activities received by each client in the DCC e.g. measure. No internal evaluation activities were identified as to speech therapy, physiotherapy, etc. the estimation of the result for the clients.
None of the findings from either monitoring or evaluation activities reflect on the service budget.
It is visible from the table above that the service delivery monitoring and evaluation mechanism is activity-based (data collection on activities) rather than outcome-based (data collection on outcomes for clients in line with the service goals). As monitoring and evaluation is a management instrument towards improving the services, this assessment looked at how such data is fed back to middle management and service management. The figure below indicates that not all service managers are aware of the existence of a system for service quality monitoring (Figure 13).
This might mean that monitoring data is not fed back to them so that they feel involved in a process of service delivery analysis and improvement. Figure 14 indicates that only one third of service management and staff are informed about results from monitoring activities. One possible explanation might be that service management is not expected to change service design but rather this role is centralised on system level (MoLSP, ISA). FINDINGS 45
External evaluations and involvement of clients and community in evaluation processes is a strong instrument towards accountability, transparent management and eventually higher quality of services. Although there have been external evaluations in the course of the service development process in the country28, these are not based on regular periods of time and external evaluations are not integrated in the overall system of monitoring and evaluation. According to the survey data 51.6% of the respondents indicate that a system for external evaluation of the quality of services provided by CSW and DCC does not exist. These findings indicate that generally the system for reviewing the quality of service needs to be more oriented to evaluating the outcomes and benefits for the client in line with the service goals related to supporting the children with disabilities towards independent living.
4.4.1. THE TYPES AND QUALITY OF PROGRAMS OR SERVICES PROVIDED BY THE STATE AND NON-STATE ACTORS
Level of targeted impact of services (difference between state and non-state) It was identified during this assessment that policy-makers and service staff as well as parents have a shared understanding that the service goal is to foster the development of the child. However, parents and staff have different views of what level of development is to be targeted. This difference sets different targets for both staff and parents although both perspectives are oriented towards different levels of independent living of the child. Fostering independent living means that a child is supported to have access to education and employment later on in life.
State providers In the interviews with staff and parents in DCCs and foster care the assessment team tried to explore what level of independence skills the children develop to be able to either go to school or into employment. The findings are that basically there are no clients that leave the DCCs due to achievement of the aim.
28 e.g. DCCs for children with special needs in FYR Macedonia*: Findings of an external evaluation, Elizabeta Kacarova – Kunovska, Dec 2007, commissioned by UNICEF ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 46 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
Generally, there are no exits from the DCCs (and there is no stipulated period for receiving the service) and clients stop visiting the centre as a result of the following reasons: • decision made by the parent – e.g. changing residence places; parents are not satisfied with the results for the child (“Our children, too, visited the DCC here but the staff is not competent and motivated enough to work with the children. There was no progress so we quit.” Bitola FGD) • The child goes to school – as the working hours of the school and the DCC are the same, practically children cannot visit both. Those children who are able or become able to visit school, have to stop visiting the centre. Of the DCCs visited within this assessment 3 children visited school i.e. a very small percentage. • The child goes into employment – of all DCCs visited 1 person got a job and left the centre. • The child’s death
All respondents indicated that there are waiting lists for using the DCC service and it is rare that a child leaves the service. There are quite a number of cases that persons beyond 26 continue to visit the centres. From the perspective of parents, development of the children is neither the purpose or within the competence of the staff in the DCCs. The main purpose that DCC serves is ensuring 6 hours stay of the child daily thus making time for the parents to go to work. However, due to different accessibility issues (see 4.1.1. Geographical distribution and coverage of alternative care and family-support services), a big portion of parents cannot go to work. This means that at some extent the achievement of this objective of the service is hindered.
“THE COMPETENT STAFF IS ACTUALLY INCOMPETENT. THEY Although detailed analysis of milestones achievement for children was DCC STAFF ARE NOT FAMILIAR not part of this assessment, the findings clearly indicate that the ultimate WITH MODERN TREATMENT goal of the DCC to foster development of the child towards independent THERAPIES, THE MACEDONIAN living is presently not achieved. Along with their insufficient number, DOCTORS ARE A SHAME ON OUR this is likely to be one of the contributing factors for the insufficient HEALTHCARE”. capacity of the DCCs. (FGD, PARENTS, USERS OF SERVICES)
Non-state providers In this section we make a distinction between non-state providers funded by the state and non- state providers not funded by the state. Both state-funded and non-state funded providers are NGOs and although they provide different services, the ultimate goal for the children served is towards development of the child and fostering independence skills.
State-funded NGO-run DCCs receive substantial portion of their funding from the state budget are, therefore, organized under the format prescribed by the state (ISA and MLSP). The findings are that NGO-run DCC have similar service design to the state-run DCCs, similar capacity for clients, almost no exit from the service with reasons for leaving the same as with state-run DCCs, same format of individual planning. Detailed description of service design is available in the previous sections of the report. Although parents of children users of NGO-run DCCs were not interviewed, it can be assumed that with the same service design and service requirements, state and non-state are likely to produce similar benefits for the children. FINDINGS 47
Non-state funded NGO-run services29 are not regulated or prescribed by the state and are therefore not funded within any governmental programme. However, the service may be supported by the local municipality mostly by providing physical space for the activities. The service design is entirely developed by the people who initiated and provide the service. Within the service observed for the purpose of this assessment, the following features were identified: • Service entry - parents find out about the service other parents, Internet, TV, a teacher. None of the users had been refereed by a state actor (GP, a specialist doctor, CSW or centres dealing with assessment of disability procedures) • 7 staff members (not paid); • works with 43 children of mixed ethnic background with various types of disabilities (mostly autism and Down syndrome), aged 1.6 – 9 years i.e. kindergarten and primary school age; • capacity: approximately three 40-minute sessions per child per week; • two-room premise; • Individual planning is developed for each child, plans are accessible for parents (may have a copy) • Plans are reviewed every 3 months, parents participate in the reviewing process • group work methods are hardly used; individual work with children is the main approach; • Extensive work with parents – individual instructions sessions with the parent on how to work with child at home so that the approach is not discontinued; • The period of receiving the service is by the time the results are achieved (result-oriented).
From the perspective of parents of children using this type of service, the work with their children is done in partnership with them, Moreover, parents feel they are part of the planning process of the objectives and interventions for their children – they are aware of the purpose of each intervention, the benefits it is expected to produce for the child, the assessment of whether or not it works for their child as well as what their role as parents is to sustain these results at home.
Most importantly, 100% of the interviewed parents indicate the service staff has contributed to significant progress of the development of their children and were able to define specific positive developmental outcomes/changes.
Various methodologies are applied to children after an assessment is made of the appropriateness of each methodology for each particular child (the assumption being that not one therapeutic approach is equally good for all children).
29 For the purposes of this assessment one service was observed. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 48 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
CONCLUSIONS:
• In terms of the ultimate goal for the children in the context of independent living skills no significant difference were identified between state-run and NGO-run DCCs as they both are not result-oriented. However, there is significant difference in the extent to result- orientation of the service between state-funded and non-state funded NGO providers;
• The existing mechanism of evaluation of the services is oriented to collecting ongoing monitoring data rather than outcome-based evaluation of the services. Evaluation of services in terms of the ultimate service goal is a powerful instrument for improving service quality which is currently underused. FINDINGS 49
CONCLUSIONS 5
TABLE 14
Needs of • In terms of children’s rights a most positive trend in the country is that the children with disabilities mostly live children with with their biological families rather than under formal care. disabilities • There is a gap in the service provision system related to early identification of the disability (particularly for disabilities becoming visible later after birth). • The detection of the disability is currently not linked to comprehensive assessment of the child’s abilities, hence not likely to serve as a basis for designing a proper development plan for the child early enough. • The developmental activities within the different services (DCC, kindergarten, Early development centre, etc.) are not tailor-made so that they can flexibly respond to the actual needs of the children according to the child’s development stage, abilities, age, etc. • The path from assessment of disability to reaching the ultimate goal of independent living is difficult and unrealistic to achieve with the existing number and level of diversity of services.
Needs of • There is a gap in service provision in terms of early-stage support and ongoing counselling for parents in de- parents tecting and accepting the disability of their child. • At the stage of disability detection parents need proper guidance throughout the whole system of both assess- ment of disability and referral to appropriate services. • The existing services mismatch the existing needs of the parents in terms of the extent to which the services are oriented to child development. • The current service development mechanism has a big underused potential to involve parents in decision-mak- ing concerning service design in order to improve service quality.
Needs of the • A very positive trend is that within several years anextensive network of 30 state DCCs has been developed service provision and intentions are that it is further to be developed in order to support families of children with disabilities. system • Policy-makers and service staff as well as parents have ashared understanding that the service goal is to fos- ter the development of the child. However, the system (policy-makers and service staff) and the parents have different views of what level of development is to be targeted. This difference sets different targets as well as different expectations of the ultimate outcome for the children that the service is oriented to. • There is a mismatch between the goal and design of the DCC service, on the one hand, and the expectations and needs of the parents and children, on the other hand. The DCC design is not flexible (all DCCs are the same everywhere) to reflect the diversity of local needs. • Early identification is done by two types of services (patronage care and Early development centres). However, these two services do not cover the whole country and the whole spectrum of needs. Moreover, as these two services are part of different sectors, there is no visible link between them. • The system lacks inter-sector links among the services so that they can become more flexible and need-ori- ented. • As the social service policy-making seems to be much centralised, the CSW appear at the level in the system that is neither direct service provision nor policy-making (hence they have direct responsibilities in neither). The CSW fail to play their role of gate-keeping and referral point for the children and families due to a number of systemic limitations regarding CSWs’ level of participation in decision-making concerning service planning, lack of sufficient human resources able to act as actual outreach workers and care managers, possibility to map services alternative to state-run services and make proper referrals to them, etc. • DCC management is not independent but is subordinated to the CSW. As a result, the DCC are limited to perform actual service management (including financial management) hence the service is unable to flexibly respond to the local needs. • Service staff structure is presently organised in a way that potentially orients the services to the medical model rather than the social model of service provision. • It is a positive trend to develop foster care as an alternative to living in residential institutions. However, foster parents are not systematically trained and do not receive professional support to be able to achieve the service goal. 49 ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 50 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
6 RECOMMENDATIONS
TABLE 15 GENERAL RECOMMENDATIONS
Needs of • The continuous support of a child from the moment of assessment of disability towards independent living children needs to be reorganised through a much higher variety and number of services that ensure the possibility with of choice of services that best fit the needs of the children as they grow and diverse models of family living disabilities (parents’ jobs, family model, other children in the family, life rhythm, etc.). • Service design need to be preceded by assessment of the individual needs of the children (individual needs assessment is not performed by any institution prior referring the child to a particular service; assessment of disability does not perform this function at the moment).
Needs of • Services need to be designed to support parents at the very early stage of learning the news about the disability parents of their child. How/who/where (in the health system)?? • The existing and the prospective services need to directly support the parents both in their parent’s role (in their wish to see their children live independently after they’re gone) as well as their other roles i.e. partners, parents of other (healthy) children, etc. (e.g. service targeting self-help, respite services). • There is a huge underused potential of parents’ energy and desire to contribute to service planning and design, fundraising, activities in the community, self-help activities, expert-from-experience resource, etc.
Needs of • Financial planning needs to reflect needs assessment analyses and based on measurable and objective the service performance indicators. provision • Financial mechanism for services needs to be decentralized – options need to be considered for service managers system to be able to fully implement their management role including financial management towards improving service design and better service quality. • Financial policy of supporting children with disabilities needs to reflect the government’s priority i.e. favouring family support rather than formal care (foster care, institutions). • Diversification of the services, developing new ones and covering the whole continuum of care. Early intervention with focus over identification of cases through work in community.
50 EXECUTIVE SUMMARY 51
Elements of the good practice model of a family-support service
The goal of the service is clearly defined. The goal and the expected outcomes for the child are actively HOW communicated to the families.
FOR WHOM Clearly defined age group and expected level of developing social skills of the children targeted.
A diversity of service providers: state, municipality, NGOs, private providers; with equal opportunities (legal WHO and financial) to provide the service. They need to have the possibility to provide the service in partnerships with each other (e.g. public-private partnership).
Services or elements of the service are provided both in the home of the family (mobile work) and the community of the family (community-based). Whenever transportation is required to ensure access to the WHERE service, transport should be flexible enough – be able to transport from-to any place in the community covered, at any time that is convenient to the family. This would mean more than one vehicle.
The time of service provision (or certain service elements) is entirely planned in accordance to the individual needs of the family. The service/programme needs to be provided on an hourly, half-daily, daily, evening, week- WHEN end basis. The children who visit school/kindergarten/other daily activity are able to use the service as well but at different time to allow the child both attend school/kindergarten/other activities and use the service as well.
A diversity of individual and group work, a diversity of most modern therapeutic approaches and methods for child development. The work with the child is entirely based on individual plans developed with the participation of the parents and children, at the highest possible level of involvement. WHAT The professional teams in the service are recruited, trained and professionally support to run activities in accordance to the service goal and expected outcomes for the children i.e. professional teams and staff structure and competence are consistent with the service goals and not vice versa.
The service is provided to any client until achieving the expected outcomes. Time limits must be set but they TIME LIMIT can be flexible and in accordance to the individual speed of development of each child as well as in line with the expected outcomes and goals set for each specific child.
51 52 DCC MoH MoH MoLSP MoLSP MoLSP MoLSP MoLSP local NGOs RECOMMENDATIONS ACTION BY Coordinated by Implemented by Municipalities and RECOMMENDED ACTIONS As the service balance needs to give priority to family-support services, a detailed needsAs the service balance needs to give priority family-support services, a detailed assessment has to be designed and performed as a separate immediate stage in that the analysis gives The needs assessment has to be designed in a way planning. of the care continuum about the needs of children at each level detailed information parent’s for development, and opportunities taking into account the age, type of disability features of the local community, etc. job, family social status, number of siblings, recommended. The strongly in the assessment is input as an important Parents’ view community-based. needs assessment process to be local The existing services (patronage nurses and Early child development centres) need to be child Early and nurses services (patronage The existing detection as well. The number of targeting early disability specifically expanded towards those services needs to be higher and cover both small big municipalities. An inter-sector referral mechanism has to be designed for children with detected has to be designed for children with mechanism An inter-sector referral delays. developmental assessment (based on the ICF-CY) needsIntroducing the prospective system of disability of family-support services i.e. the the prospective network tied up with to be closely for each child. plan activities should be basis for developmental assessment of abilities structure of the system (existent or future) is yet to be made as which A decision take will on the function assessment of and closely abilities coordinate how it withwill so that a detailed family-support services the respective staff in the developmental is adopted, adequately based on the assessment. plan developmental All existing and prospective services need to be designed and redesigned to include and prospective services need to be designed and existing All has priority This a priority. as activities skills living independent and developmental as as well activities vs. development skills to be reflected in the skills ratio of basic developmental vs other staff ratio. The continuous support of a child from the moment of assessment of disability towards of services that ensure needs to be reorganised through a higher variety independent living as they move that best fit the needs of children of choice services the possibility through the different stages of their life. Some of the suggested activities or new services may be delivered using the resources of the and timeexisting DCC e.g. premises, materials (evenings and weekends). CONCLUSION
In terms of children’s rights a most positive trend in the country is that the children that is the country trend in a most positive rights In terms of children’s with disabilities mostly live their biological families rather than under formal care. There is a gap in the service provision system related to early identification of the system related to early identification the service There in provision a gap is disability (particularly for disabilities becoming visible later after birth). The detection of the disability is currently not linked to comprehensive assessment comprehensive assessment to linked currently not is the disability of The detection a proper for designing a basis serve as to likely hence not abilities, the child’s of is needs assessment Presently, individual early enough. for the child development plan not performed by any institution prior referring the child to a particular service. The developmental activities within the different services (DCC, kindergarten, Early services (DCC, kindergarten, the different within activities The developmental to the respond they can flexibly development centre, that so etc.) tailor-made are not age, abilities, development stage, to the child’s according of the children needs actual etc. The path from assessment of disability to reaching the ultimate goal of independent The path from of disability assessment level of number and the existing to achieve with unrealistic and difficult is living diversity of services. CHILDREN WITH DISABILITIES WITH CHILDREN NEEDS ASPECT OF TABLE 16. DETAILED CONCLUSIONS AND RECOMMENDATION ASSESSMENT OF ALTERNATIVE FORMS CARE AND FAMILY SUPPORT SERVICES FOR CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA 53 ACTION BY RECOMMENDED ACTIONS Redesigning existing service (DCC) towards: Designing new services along each level of the care continuum aiming at: Increasing the number of DCCs across the country to respond number of registered children package of services to each However, provide a specialized each DCC should disabilities. with child depending on age and type of disability; Working hours extended to one working day allow parents work; designed drop off timing and pick-up DCCs – flexible for all available transportation Flexible is sure transport making or other activities; school visiting children needs and families’ to fit territory on the whole that DCC covers; living type of transportation families to all available appropriate for the type of disability (e.g. taxi is not an option autistic children); Introducing individual sessions with children targeting developmental objectives; Specifically training parents to practice children’s skills at home; Counselling parents; these as a the current Extending programmes 6 or designing to reach out children below separate service for infant development and treatment; e.g. specific are disability treatment programmes which individual specialized Introducing autism. services and self-care. might person in in-home Support at home: activities Possible to assist bathing, care, personal including ironing; and as washing such domestic assistance, include and the type of disability on depending home modifications toileting, and dressing, showering, individual needs; social in the community and developing functioning Support in the communities – encouraging worker to from a support help including support, social include services might Possible skills. community to and attending use transport, and help getting do shopping, attend appointments, activities; primary carers Short to support (parents) whilst term - short breaks designed interventions services should experience. Possible enjoyable and a positive a disability with the child giving programs; respite care at home out- holiday or in school be age appropriate and might include of-home settings (host family respite, centre based respite and other flexible options); • ------• - - -
CONCLUSION CHILDREN WITH DISABILITIES WITH CHILDREN NEEDS ASPECT OF 54 MoH MoLSP RECOMMENDATIONS ACTION BY RECOMMENDED ACTIONS Crisis intervention – aiming to provide immediate support in crisis situations involving behavior, involving situations crisis in support immediate provide to aiming – intervention Crisis Crisis property destruction. serious and away; bolting/running self-injury; aggresion; including or services. education a person at risk of losing behavior that puts involve can also situations emergency at services, intervention crisis services might include teams available Possible programmes, 24/7 hotlines, etc. the client’s “exit” from management –aims at managing the service and Withdrawal behaviour and skills client’s by supervising preventing or relapse (disability-specific) reducing withdrawal supervised services might include from the service. Possible after withdrawal programmes, prevention ongoing relapse etc. the person to function long-term support to provide sustained aims service support- and Life-long services might include Possible in the community (disability-specific). in home, at work/school, etc. support, inclusion living, sheltered/assisted assistance, mobility assistance, social/personal self- include services might Possible (disability-specific). self-help to support aiming aid- Mutual be available also programmes, etc. Should expert-from-experience groups; help training/support for parents. services might at work. Possible people in functioning Supported employment – assisting employers programmes; training employment for finding training place; work supported include programmes, adapting work place programmes (depending on the type of disability), etc. as a new and planned needs to be designed support psychological and Parents counselling detection and early intervention programmes. The service to disability service is linked which (patronage early detection in involved needs to be of inter-sector character i.e. professionals make proper and etc.) should specialists, development child pediatricians, GPs, nurses, as work worker) or ideally or social (psychologist professionals referralquick to counselling whose parents to all The service needs to be available teams where possible. multidisciplinary a process of getting or are in have either been diagnosed and issues have developmental children an as be available should Parent counselling registration). (i.e. even before actual a diagnosis and care services that deal with planning be tied up with service support and should on-going provide developmental work with children. needs to be made to decide how ensure proper referral analysis mechanism and Additional has to involve service systems this where in the has to be integrated. Such analysis existing NGOs and parents to service representatives of the social system, healthcare disability ensure it matches actual needs. ------CONCLUSION
There is a gap in service provision in terms of early-stage support and ongoing counselling ongoing and in terms support of early-stage There in service provision a gap is for parents in detecting and accepting the disability of their child. the whole throughout need proper guidance parents detection of disability At the stage system of both assessment disability and referral to appropriate services.
CHILDREN WITH DISABILITIES WITH CHILDREN PARENTS NEEDS ASPECT OF ASSESSMENT OF ALTERNATIVE FORMS CARE AND FAMILY SUPPORT SERVICES FOR CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA 55 DCC DCC MoH MoLSP MoLSP MoLSP MoLSP ACTION BY ACTION BY RECOMMENDED ACTIONS RECOMMENDED ACTIONS Crisis intervention – aiming to provide immediate support in crisis situations involving behavior, involving situations crisis in support immediate provide to aiming – intervention Crisis Crisis property destruction. serious and away; bolting/running self-injury; aggresion; including or services. education a person at risk of losing behavior that puts involve can also situations emergency at services, intervention crisis services might include teams available Possible programmes, 24/7 hotlines, etc. the client’s “exit” from management –aims at managing the service and Withdrawal behaviour and skills client’s by supervising preventing or relapse (disability-specific) reducing withdrawal supervised services might include from the service. Possible after withdrawal programmes, prevention ongoing relapse etc. the person to function long-term support to provide sustained aims service support- and Life-long services might include Possible in the community (disability-specific). in home, at work/school, etc. support, inclusion living, sheltered/assisted assistance, mobility assistance, social/personal self- include services might Possible (disability-specific). self-help to support aiming aid- Mutual be available also programmes, etc. Should expert-from-experience groups; help training/support for parents. services might at work. Possible people in functioning Supported employment – assisting employers programmes; training employment for finding training place; work supported include programmes, adapting work place programmes (depending on the type of disability), etc. as a new and planned needs to be designed support psychological and Parents counselling detection and early intervention programmes. The service to disability service is linked which (patronage early detection in involved needs to be of inter-sector character i.e. professionals make proper and etc.) should specialists, development child pediatricians, GPs, nurses, as work worker) or ideally or social (psychologist professionals referralquick to counselling whose parents to all The service needs to be available teams where possible. multidisciplinary a process of getting or are in have either been diagnosed and issues have developmental children an as be available should Parent counselling registration). (i.e. even before actual a diagnosis and care services that deal with planning be tied up with service support and should on-going provide developmental work with children. needs to be made to decide how ensure proper referral analysis mechanism and Additional has to involve service systems this where in the has to be integrated. Such analysis existing NGOs and parents to service representatives of the social system, healthcare disability ensure it matches actual needs. self-help groups for parents respite services - respite care respite, centre at home (host family or in out-of-home settings based respite and other flexible options) Family counselling and family coaching Sibling care Working groups Parents’ councils and boards as an external management structure of the service processes as planning level as well processes on national Wider representation in policy-making on local level, etc. Involving the parents in care planning in a way that the plan becomes owned by family by becomes owned plan the that way a in care planning in parents the Involving i.e. family-based areas of of all targets development of skills (the plan be holistic should Care planning mental). and spiritual, emotional, the Centre e.g. physical, outside living including life in their work reorganize to needs service staff that means approach an such Adopting the in or organisations people other significant with liaise care managers that way a client’s life to facilitate the goals and action plans. The existing and the prospective services need The to directly support the parents both in existing after they’re independently live see their children to their wish role (in their parent’s gone) as well their other roles i.e. partners, parents of (healthy) children, etc. centres services existing services or redesigning new planning on implications has This to include new activities services such as: be extended parents and children of services for both recommendednetwork It is that service family-support the DCC (as they are the only either by redesigning and diversified at the moment) different service programmes by introducing (with separate objectives, or creating new services delivered by various of provision) duration and target groups providers (state, NGOs, municipalities, etc.) and financially supported by the state. Parents should be involved in all stages of general service planning (service design, of general service planning stages all in be involved Parents should service evaluation, etc.). Possible forms of parents’ involvement might be: DCC goals need to be reoriented towards child development that fosters independent development that fosters independent need to be child reoriented DCC towards goals development. At the same time DCC care skills basic just rather than the child of living managers need to work with the parents towards synchronizing expectations by: ------CONCLUSION CONCLUSION
There is a gap in service provision in terms of early-stage support and ongoing counselling ongoing and in terms support of early-stage There in service provision a gap is for parents in detecting and accepting the disability of their child. the whole throughout need proper guidance parents detection of disability At the stage system of both assessment disability and referral to appropriate services. primary carers as i.e. no to the needs of parents services do not respond The existing services target directly parents as such. several years an extensive network of 30 state trend is that within A very positive are that it is further to be developed in order and intentions DCCs has been developed to support families of children with disabilities. The to involve current service underused potential development mechanism has a big order in to improve service quality. service concerning design decision-making in parents Policy-makers and service staff as well as parents have a shared understanding shared have a parents as well as service staff and Policy-makers However, to foster the development of child. the system that the service is goal of level what of views have different the parents and service staff) and (policy-makers different as well as targets different difference sets be targeted. This to is development expectations of the ultimate outcome for children that service is oriented to.
PROVISION SYSTEM PROVISION
CHILDREN WITH DISABILITIES WITH CHILDREN PARENTS PARENTS
SERVICE CURRENT NEEDS NEEDS ASPECT OF ASPECT OF 56 CSW MoLSP MoLSP RECOMMENDATIONS ACTION BY Ministry of Finance RECOMMENDED ACTIONS Primary interviews with clients Referring clients to different services as may use more than one service Defining duration of service provision Monitoring and evaluating action plans outcomes - - - - staff) to be able perform CSW these need to reorganize their resources (including with perform primary interviews to be trained to needs staff Specifically functions. clients and make proper referrals. More such as proactively staff needs to be importantly, involved in outreach activities taking by the targeted population services to various about information communicating (e.g. background, ethnic groups population features of the different account specific into rural/urban residence, literacy, etc.). DCC other services of as well all need social to be delivered by providers independent financial service management and their own with CSW (e.g.municipality) NGO, state, management thus decentralizing the existing financial mechanism of service planning. service providers be regulated and provided by the state for all of services should Funding on clear criteria reflecting performance based outcomes. This standards financial using be able to make their services a process where any service providers will facilitate will flexible and responding to local needs. It is recommended that the functions of the CSW be reorganized towards primarily of the CSW towards be reorganized recommendedthe functions It is that coordinating service provision without actual management of the services. Functions should include: CONCLUSION
DCC management is not independent but is subordinated to the CSW. the As a result, subordinated is but not independent DCC management is management) DCC are to perform financial limited service actual management (including hence the service is unable to flexibly respond local needs. As the social service policy-making seems to be much centralised, the CSW at appear seems to be much centralised, service policy-making As the social (hence nor policy-making neither direct service is provision that the system the level in their role of gate- neither). to play The CSW in fail they have direct responsibilities systemic number of a to due families and for the children referralpoint and keeping concerning service in decision-making regarding CSWs’ level of participation limitations and outreach workers actual to act as resources able human of sufficient lack planning, make to state-run services and to map services alternative care managers, possibility proper referrals to them, etc.
PROVISION SYSTEM PROVISION
SERVICE CURRENT NEEDS ASPECT OF ASSESSMENT OF ALTERNATIVE FORMS CARE AND FAMILY SUPPORT SERVICES FOR CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA 57 ISA DCC CSW MoLSP MoLSP ACTION BY RECOMMENDED ACTIONS Service staff structure needs to be reorganised towards providing child development child providing towards Service structure needs to be reorganised staff increasing on implications has development. This skills over basic as a priority activities physiotherapists, rehabilitators, staff: speech therapists, the number of professional psychologist, social workers, and pedagogues. as as well case supervision needs to receive development staff ongoing child All on modern training therapy approaches and behavior therapies (e.g. for professional disabilities), physical with programmes (e.g. for children children), rehabilitation autistic person-oriented planning (e.g. for children with intellectual disabilities), etc. trained to coach parents Moreover, development staff needs to be specifically child all with environment of the child the natural in the respective therapy approaches to adopt available resources so that the development process is not discontinued. It is recommended that foster care for children with disabilities is professionalized is recommended disabilities It is that foster care with for children on-going specialized and foster parents for candidate training motivation providing by working of the disability, foster parents on specifics for actual and support training the with working a traumatic background, with working the respective disability, with biological parents, etc. CONCLUSION
Service staff structure is presently organised in a way that potentially orients the orients potentially that a way in organised Service presently staff structure is services to the medical model rather than social of service provision. It is a positive trend to develop foster care as an alternative to living in residential in to living alternative an foster care as trend to develop a positive It is However, trained and do not receive foster parents are not systematically institutions. professional support to be able achieve the service goal.
PROVISION SYSTEM PROVISION
SERVICE CURRENT NEEDS ASPECT OF 58 ANNEXES RECOMMENDATIONS ANNEXES Data Collection sources Policy documents/Desk review report Interviews with policy makers and experts Statistical data Policy documents/Desk review report Statistical data Interviews with policy makers and experts Assessment indicators Extent to which service regulation is family-oriented. Ratio of services for alternative care vs. family-support services The extent to which services are conveniently located/ accessible to families. Evidence that social services are offered at the location that is most beneficial for the person served, family and caretakers, thus aiming for the (re)integration of person served into society. The extent to which the financing of social services provides opportunities for adequate quality and in accordance with their objectives. Ratio of financial distribution between formal care vs. informal care The extent to which the financing is oriented in favour of family-support services. Assessment area (in accordance with TOR) What are the sources of funding? Distribution between funding for formal care and informal care Variables that funding for service providers depends on How the budget is distributed/ spent through year? Availability of policy and regulative framework (including funding) shaping family-centered and outcome-oriented social services Where the alternative care services located – in terms of geography, type/size the settlement, balanced distribution etc.?
Preconditions
Sustainable funding Supportive social policy framework (incl. legislation)
Quality principles Quality approach based Rights
1.Preconditions for service delivery service for 1.Preconditions
7 Domains
Aspects Contextual 7.1. MATRIX OF ASSESSMENT process aspects, organisational aspects, contextual to relation in model a provides on based is matrix assessment this which on framework Quality Common The of service delivery and outcomes. ASSESSMENT OF ALTERNATIVE FORMS CARE AND FAMILY SUPPORT SERVICES FOR CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA 59 Policy documents/Desk review report Interviews with policy makers and experts Policy documents/Desk review report Statistical data Interviews with managers of services Observation Qualitative research Interviews with policy makers and experts. Policy documents/Desk review report Qualitative research Extent to which services are of inter-sector nature? (involvement of different sectors in policy and service planning) Evidences for the service capacity, number of children, period of usage, ratio part/full time usage Proportion of number and type beneficiaries formal care vs informal care. Extent to which staff structure meets the needs of beneficiaries Identification of the level recognition and understanding of service goals by staff and managers Evidence of how service managers match staff recruitment and support to the service goals Extent to which service planning and design is of inter- sector nature? (e.g. involvement of other sectors (GP or school in planning and identification of needs?) What is the capacity of services, whether they work at full capacity, what is the ratio of part/full time usage, are there resources to increase the capacity? Are social services responsive to local needs (incl. educational and healthcare) of children with disabilities their families and local conditions? Whether social services are provided in partnership with communities and other public private actors who ensure the delivery of local services? What is the connections/cooperation with other sectors engaged (healthcare, education, judicial system)? How the final decision on particular case is made? What is the organizational structure of services? Is there a training system in place to ensure that managerial staff is able to manage, design, deliver, support and evaluate the provision of service?
Capacity of the services (number and type of beneficiaries of their services) Cooperation with other sectors Stakeholder dialogue Good management Annual planning Systematic Quality Improvement
Good governance / Partnership / governance Good
2. Requirements for the service provider service the for Requirements 2. Organisational 60 ANNEXES RECOMMENDATIONS Qualitative research Interviews with service provider managers Desk review documents Qualitative research Observation Interviews with service provider managers Desk review documents Focus group with parents/interviews foster parents Qualitative research Observation Interviews with service provider managers Desk review documents Focus group with parents/interviews foster parents Evidence that the service provider (state and non-state actors) operates the social services on basis of relevant, adequate and agreed staff levels ratio (number of persons served / number staff). Evidence that there are systematic and consistent efforts to ensure proper professional development (difference between state and non-state actors) Identification of the level recognition and understanding of service goals by staff (difference between state and non-state actors) Evidence that social services provided by the state and non- state actors offered as a range of services are coordinated and consistent with individual needs assessment, so they meet the multiple needs of person served, related beneficiaries and the objectives of service. Evidence that social services provided by the state and non-state actors are based on a holistic approach which reflects the needs, expectations and capacities of person served and which aim to improve the well-being of the person served. Evidence that social services provided by the state and non- state actors enhance ‘Quality of Life’ for the person served. Evidence that social services provided by the state and non- state actors facilitate access to multidisciplinary services and support which meets the needs demands of persons served. Is there a training system in place to ensure that professional staff in the service provider records outcomes of individual service plans and continuous evaluation the appreciation of the service by persons served? What are the goals, outcomes, main activities in particular service? Which working methods are used in the process of planning, communication, skills development, work with family etc.? Do service providers offer services consistent with the individual needs of the person served to improve their quality of life? Do service providers offer services which are holistic and seamless, assure continuity by achieving consistency between different services, and promote the quality of life of the person served avoiding negative impact disruption of services?
Skilled professionals Training and development of staff Staff levels and staff ratio Tailor-made services Proximity Affordability Holistic approach Promotion of quality of life Seamless provision of services Access to multi- disciplinary supports and services
Comprehensiveness Person-centeredness Competence of staff of Competence
4. Requirements for the service the for Requirements 4. 3. Requirements for staff for Requirements 3. Service delivery process delivery Service ASSESSMENT OF ALTERNATIVE FORMS CARE AND FAMILY SUPPORT SERVICES FOR CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA 61 Qualitative research Observation Clients records templates Interviews with service provider managers Desk review documents Focus group with parents/interviews foster parents Evidence that the social service provider evaluates the impact of its services on quality life service user. (difference between state and non-state actors) Evidence that the social service provider reviews personal responsibility of all people involved in the service provision for the achieved results. (difference between state and non-state actors) Do organisations providing social services offer that achieve results by focusing on the benefits for persons served and other relevant stakeholders? Do they report their achievements to stakeholders and society? What are the types and quality of programs or services provided to children with disabilities by the state and non- state actors
Benefits for service users Records of outcomes Reviewing results Transparency of results
Result orientation Result
5. Benefits and service results service and Benefits 5. Benefits and outcomes and Benefits ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 62 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
7.2. E-MAIL/POST SURVEY - QUESTIONNAIRE
SURVEY FOR ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
NOTE: To be filled in by one professional staff from the CSW/DCC working on cases or with children with disabilities.
I. DESCRIPTION OF THE SERVICE
D1. (For CSW and DCC) Town ………………………………………
D2. (For CSW and DCC) How many employees are working in your service? ……………………………………….
D3. How many of them are professionals providing services to beneficiaries? ......
D4. (For CSW and DCC) How many of them work on cases with children with disabilities? ………………………………………
D5. (For CSW and DCC) What is the capacity (number of clients you can work with) of the service? ………………………………………
D6. (Only for DCC)What is the ratio professional staff: children in the DCC? ...... ANNEXES 63
D7. (Only for CSW) How many services from the following types do you have on the territory of your region and how many beneficiaries have each of them?
State provided service Number of Non state provided Number of beneficiaries service beneficiaries Day care centers ……………………….. …………………… …………………….. ……………………. Small group homes ……………………….. …………………… …………………….. ……………………. Specialised institutions ……………………….. …………………… …………………….. ……………………. Other services ……………………….. …………………… …………………….. …………………….
D8. (Only for CSW) How many foster families do you have in your region and how many children they have?
Foster families Number of children Number of children with disabilities ………………………………………. ………………………………………. ……………………………………….
II. MAIN ACTIVITIES
1. (Only for CSW) What is the organizational structure of the CSW in service delivery?
With sectors, specialized for different areas of work 1 One case worker covers different areas of work 2 Other (please specify)…………………………………………………………………………….. 9
2. (For CSW and DCC) With how many children/beneficiaries your center/service currently works? ...... ……………………..
3. (Only for CSW) What is the number of cases of children with disabilities you work on? ...... ……………………..
4. (Only for CSW) Which are the most frequent risks for which children with disabilities fall within the social care system? More than one answer is possible.
Criminal behaviour 1 Being a victim/perpetrator of violence 2 Disrupted family relations 3 Human trafficking 4 Other (please, write down)…………………………………………………………………… 9 ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 64 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
5. (Only for CSW) Which are the most often used areas of support for children with disabilities and their families? Please, mark up to 3 areas.
Social prevention 1 Family support 2 Daily care 3 Foster family 4 Placement in small group home 5 Independent living with support 6 Placement in institution 7 Other (please, write down)………………………………………………………………………… 9
III. MANAGEMENT
6. Is there an ethical code for the professionals in all services (including CSW and DCC)?
Yes 1 Yes, for some of the proffessionals 2 No 3
7. Is there a system for external evaluation of the quality of services provided by CSW and DCC?
Yes 1 Skip to Q9 No 2
8. Whether and to whom the results are disclosed? More than one answer is possible.
Yes, the results are made known to the community, (families, extended family, local community) 1 Yes, the results are made known to the staff 2 Yes, the results are made known to the managerial staff 3 Yes, the results are made known to other institutions – MLSP, ISA 4 No 9
9. Is there an internal system / mechanism for monitoring of the quality of service?
Yes 1 No 2 ANNEXES 65
IV. PLANNING/INTERSECTOR PARTNERSHIP/PARTICIPATION
10. (For CSW and DCC) What is the extent of participation of the following persons in the needs assessment of the clients? Please, circle the correct answer on each row.
Service Participates Participates Doesn’t There is no such actively moderately participate a person in the institution Social worker 1 2 3 9 Defectologists 1 2 3 9 Special Pedagogues 1 2 3 9 Psychologists 1 2 3 9 Physiotherapist 1 2 3 9 Speech therapist 1 2 3 9 Teachers 1 2 3 9 Doctors 1 2 3 9 Parents 1 2 3 9 Relatives 1 2 3 9 Children 1 2 3 9 Other (please, write down) 1 2 3 9 …………………………………………………………………..
11.(For CSW and DCC) What is the extent of participation of the following persons in the plan- ning of the casework? Please, circle the correct answer on each row. Service Participates Participates Doesn’t There is no such actively moderately participate a person in the institution Social worker 1 2 3 9 Defectologists 1 2 3 9 Special Pedagogues 1 2 3 9 Psychologists 1 2 3 9 Physiotherapist 1 2 3 9 Speech therapist 1 2 3 9 Teachers 1 2 3 9 Doctors 1 2 3 9 Parents 1 2 3 9 Relatives 1 2 3 9 Children 1 2 3 9 Other (please, write down) 1 2 3 9 ………………………………………………………………….. ASSESSMENT OF ALTERNATIVE FORMS OF CARE AND FAMILY SUPPORT SERVICES FOR 66 CHILDREN WITH DISABILITIES IN THE FORMER YUGOSLAV REPUBLIC OF MACEDONIA
12. (For CSW and DCC) How long is the time period the cases are planned for? Less than 6 months 1 Between 6 months and 12 months 2 More than 1 year 3
13. (Only for CSW) What kind of services are preferred by the beneficiaries – by the state or non-state provider?
Provided by the state 1 Provided by non-state organisation 2 It doesn’t matter 3
14. (Only for CSW) Which are the most important characteristics of the social services for chil- dren with disabilities? Please, mark up to 3 characteristics.
Characteristics Convenient location 1 Quality of staff 2 Quality of activities 3 Diversity of activities 4 To fit the person/case 5 Reputation of the service 6 Outcomes orientation of the service 7 Other (please, write down) ………………………………………………………………….. 8
15. (Only for daily centers) Which of the following activities are available in the day care center?
Activities with the children
Development of hygiene and cultural habits 1
Increased personal independence with regards to nutrition, dressing and moving 2
Socialization 3
Development of the communication skills 4
Development of cognitive skills 5
Development of the working abilities 6
Integration – involvement in the local community 7
Other (please, specify) ………………………………………………………………….. 8
Activities with the family
Support in the daily activities related to care, rehabilitation and socialization 9
Stimulation for involvement in the delivery of some of the activities targeted at the beneficiaries 10
Stimulation and support for the family in order to overcome the social isolation situation 11
Other (please, write down) ………………………………………………………………….. 12 ANNEXES 67
Activities towards the community Increasing of awareness about the handicap and making the public aware about this form of care for the children 13 Involvement of the community in the provision of support for these children and families 14 Activities related to school inclusion 15 Other (please, write down) ………………………………………………………………….. 98
16. (For CSW and DCC) In how much training have you participated in the last three years? Please write the number of trainings for each year.
Year Number of trainings 2015 ……………………………. 2014 ……………………………. 2013 …………………………….
17. (For CSW and DCC) Would you please, mention some of the main training topics?
Case work – needs assessment, planning 1 Specific work with disabled children – development of social, communication and cognitive skills, socialization, 2 integration Work with parents/family 3 Work with community 4 Intersectoral communication 5 General management skills for the managers (e.g. organizational management, staff management) 6 Other (please, write down) ………………………………………………………………….. 9
18. Please specify on which topic you lack training? ______
19. (For CSW and DCC) Do you receive regular supervision/intervision?
Yes No Supervision 1 2 Intervision (supervision between colleagues) 1 2
THANK YOU FOR YOUR PARTICIPATION! Assessment of alternative forms of care and family support services for children with disabilities
Orce Nikolov 74 Orce Nikolov 74 Skopje 1000 Skopje 1000