Interregional Consultative Expert Meeting
on disability-sensitive policy design and evaluation
for sustainable livelihoods for all in the twenty-first century

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Background to the Meeting

4. The political economy of disability: issues in the de- institutionalization of care for persons with disabilities in countries with economies in transition

Countries with economies in transition are undergoing profound political, economic, judicial and social transformation. The rigours of transition are placing a considerable burden on all social support systems, which cannot keep up with the number of persons calling upon assistance. However, it is considered essential that the most marginalized sectors of communities are provided with a stake in society if social cohesion is to be maintained. Ultimately the cost of doing nothing about social exclusion is enormous.

In terms of the institutionalized approaches to the provision of services - the characteristic legacy of centralized approaches of the former socialist countries- it is well documented that individuals, particularly children, are damaged by long periods of care in institutions and are subsequently ill-prepared for the challenges of the outside world. Dependency is created and social exclusion is too often the legacy of being brought up in group-care with the State as corporate parent - whether the child is disabled or not.

Institutional care comes at a high direct economic cost. As an example, recent figures from the Bulgarian Ministry of Labour and Social Policy, which has responsibility for children with moderate to severe disabilities, confirm that the annual cost of a child in their institutions is equivalent to US$1,046 as compared to the cost of a child in a family of US$630 in 1998 according to the Statistical Yearbook of Bulgaria.

In view of the social and economic necessity to effectuate change, strategies need to be designed to move from an institutional approach to care to one based on community-based services including active integration in community and economic life. Such strategies can face considerable obstacles. For instance, the traditional attitudes of society burden the State with grave responsibility for the destiny of the individual. The State as a key player in providing welfare is constantly under pressure from the predominant paternalist and egalitarian expectations. Social policy traditionally was formulated by the central government only. The discretion of the social welfare managers at local level is mainly administrative and there is no room left for development of local or community programmes. Concerning persons with disability the medical model of disability is still widely prevalent: persons with disability are considered as objects of nursing care, which is tantamount to having other people define what should be done for them.

"The legacy socialist society in Bulgaria prefers people with disabilities, including children and adults, can be settled in state institutions, residential, closed type. Usually in these institutions people are settled since their early age and there they spend their lives. The public atmosphere is such that the family accepts this as the right way. Usually the family does not comment upon the life of their relative in the institution, he/she is no more a real member of this family." [30]

In institutions in countries with economies in transition systematic programmes are missing to promote social integration, independent living and re-integration into the community. For persons with disabilities there is a lack of social contact and isolation from public life. Almost all institutions are located far from towns in difficult to access regions. As a rule their location does not support social integration. Existing social services outside of institutions are heavily dominated by providing cash allowances and consequently staff are predominantly administrative and have insufficient skills to provide a range of services to persons with disabilities in the community. The data suggest that public service institutions have the first call on the financial means of the concerned ministries for labour and social policy, which leaves little room to finance innovative social services.

Employment promotion for persons with disabilities in countries with economies in transition is in many ways the one of most difficult areas. While it is now recognized that participation in labour markets is one of the most powerful integrating factors for people with disabilities, the prevailing model is one of regulated participation in the labour market only in specialized enterprises for the disabled. Managers of mainstream enterprises in transition countries often do not have confidence that they can hire people with disabilities as productive employees. Moreover, persons with disabilities, given their background, often do not think that their "place" is in a normal working environment. In most of the countries with economies in transition the Central Labour Expert Medical Committee - or similar body - under the Ministry of Health makes decisions on whether a person with a disability is permitted to work. The accent is on what the person cannot and must not do. At present it is common that a person with a disability, although being knowledgeable and eager to work, is not given the job opportunity and is not reported as unemployed because of receipt of social pensions (or a disability allowances). Furthermore, students with disabilities generally receive professional education only in specialized schools.

In developing strategies to move effectively from an institutionalized approach to care to one of community-based services the following considerations are important:

• No institutional reform will be complete without adequate family support and measures to empower the family so that disabled people can be cared for within families.
• Support services need to be put into place, installed in such a way that they are directly accessible to the most vulnerable members of local communities.
• Societies in transition often are not always safe societies, and the vulnerable sectors of communities, particularly persons with disabilities, will seek to have their basic need for shelter, food, warmth, clothing, security and companionship met by residential resources provided by the State. There are no quick fix solutions and transition from institutions to community-based services will require proper planning and preparation. Vulnerable people need to be convinced about the value of community-based resources.
• Community based services will only be effective if they are informed by appropriate methodologies and supervised by effective procedures appropriate to local conditions and practices.
• The success of transition will depend on the commitment and capacities to meet challenges related with change.
• Change does not happen overnight and appropriate practices need time to emerge and to grow. A long-term commitment is required. Transition strategies need vision and flexibility in implementation based on constant learning from emerging experience.

In a practical sense, a combination of the following measures to improve services by, for and with persons with disabilities could be considered:

• Incentives to municipalities to improve services; the promotion of integrated schooling; the provision of diverse models of care, for instance supported accommodation or sheltered housing; training of skilled social work professionals in questions relating to people with disabilities; promotion of and access to mainstream employment opportunities, obtaining the commitment of trade unions and the business community to the employment of persons with disabilities; review of the functioning of labour and expert medical committees so that the focus moves from lost capacities to existing potential (degrees of disability may be defined without prescribing what persons cannot do); promotion and development of consultative mechanisms with organizations of persons with disabilities.
• Experience from a diverse range of pilot projects in these areas needs to be systematically evaluated and fed into policy dialogue at all levels.

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Notes:

30 Christina Christova, PhD, "Overview of the Policy for Disabled people in Bulgaria" in Final Report Phare/Consensus Programme: Making the transition from residential care to new social services for disabled, elderly and children ( CARE Austria, January 2000).

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