Project: “ADVANCING THE HUMAN RIGHTS OF PERSONS WITH INTELLECTUAL DISABILITY IN CIVIL SOCIETY”

The European Initiative for Democracy and Human Rights of the European Commission is co-financing the project “Advancing the Human Rights of Persons with Intellectual Disability in Civil Society” of Inclusion Europe. The partners are eight national organisations of persons with intellectual disability and their parents from Macedonia , Bulgaria , the Czech Republic , Poland , Estonia , Hungary , Slovenia , and Romania . This project (implemented during the period of July 2000- July 2003) aims at strengthening the political capacity of partner NGOs by assuring their active participation in the decision-making processes and introducing them to the European disability policy. It also wishes to raise the awareness of the Governments on national and European level about the lives of persons with intellectual disability. The Country Report is one of the main outcomes of the project. It is based on a survey carried out by the Republic Center for Support of Persons with Intellectual Disability - PORAKA with the professional assistance of Inclusion Europe and the Netherlands Institute of Care and Welfare (NIZW), in the period January – May 2001. NIZW developed the research methodology and guidelines for this report. This report describes the legislation, statistical information, views of NGOs and reactions of persons with intellectual disability and their parents on the particular subject.

In the report, an obvious fact is that public awareness towards the problems and needs of persons with intellectual disability is of a very low level. Prejudice in the closer social environment is still present and it is big even within the wider family, although a tendency is noticed for its modest decrease. Only the complete participation and inclusion of persons with intellectual disability in all forms and levels of the regular life, instead of the current separation and rejection, will raise public awareness and create conditions for a life with dignity.

Another very important issue mentioned in the report is the living conditions in the large residential institutions for persons with intellectual disability. Interviewed parents have said that large residential institutions are an unavoidable evil. The Ministry of Labour and Social Policy has initiated a reform process by accepting a care improvement policy for the residents (including a decrease on the number of residents of the Special Institute Demir Kapija) and by creating alternative community services. The standard of living in this type of institution is under every minimum required level: unsatisfactory and bad nutrition, insufficient medical care, no provision of any kind of education, no sense of privacy (personal clothes, personal objects, etc.), and no selection criteria of the groups of residents (according to sex, age and potential). The current insufficient monthly incomes, the small number of employees (one for 25 residents) and the unsuitable formation of employees do not provide the adequate and required care. An urgent and essential measure for overcoming the current situation is the development of a network of alternative services as a replacement to the large residential institutions.

The community-based support services are an essential necessity in the ongoing de-institutionalisation reform in the Republic of Macedonia . A positive start was made though: two day centres were created by the Government and three day centres were created by PORAKA*. As an alternative to the big residential institutions and according to legislation, small group homes, adoption mechanisms, foster families, homes for independent living, day centres, workshops and counselling services should be formed. The Government should also strengthen its support to NGOs that initiated and developed this type of services, and further it should establish a partnership with these NGOs.

Concerning the medical care, interviewed parents emphasized that the biggest problem lies in providing the necessary medicine to improve the health condition of persons with intellectual disability. Persons with severe and profound intellectual disability achieve with more difficulty their guaranteed rights to health protection, because of the non-existence of adjusted programs in the health protection system.

In the chapter on education the report points out that persons with mild intellectual disability are “privileged” as what regards the right to education, whereas the other degrees of disability, especially severe and profound intellectual disability are not at all included in the educational system. Therefore, the Ministry of Education and Science should provide educational programs for all persons with intellectual disability, including those that are placed in institutions and those with severe and profound intellectual disability.

Concerning income maintenance and social security, an emphasis must be placed upon the fact that the income from the social security system must satisfy the needs of the families that arise from the disability of their children. From the conducted interviews with parents, it may be concluded that this is not the case in the Republic of Macedonia . The right to an allowance for the salary of a part-time job must also include the parents who are unemployed. There are still bureaucratic procedures in exercising the rights to social security, but with the ongoing administration re-organisation, a hope exists that these barriers will decrease.

Differences concerning the right to personal integrity exist and are linked with the intellectual disability a person has, since their declaration as legally incapable depends on it, as does the limitation to certain personal rights and freedoms. The state must establish a partnership with those NGOs that are providing family support.

The report also points out that the organisations of persons with disability in the Republic of Macedonia are undertaking a never-ending fight for the achievement of human rights for their members. NGOs should permanently run initiatives for the implementation of their principles and goals through creative programs and actions. The action must not stop. Lobbying the Government must continue until all goals of NGOS are fulfilled. so as to lobby the country's decision-makers. A contract between the Government and PORAKA would place an emphasis on the quality of services provided by NGOs, and this example would further be used as a model for future partnership between the governmental and the non-governmental or private sector.

Another area important for persons with intellectual disability is accessibility to information, which is highlighted in the chapter on Accessibility. Since the accessibility to information in the country is nearly non-existent, the Government of the Republic of Macedonia should establish an action programme for the accessibility to information and communications for persons with intellectual disability. For example, an easy-to-read language must be introduced in the everyday use of information.

The final chapter of this report provides recommendations to the Government of the Republic of Macedonia , local authorities, and the international donor community about possible steps to be undertaken to bring about an enforcement and implementation of the generally positive legislation and includes the interests of the children and adults with intellectual disability. The biggest c hal lenge for the Government of the Republic of Macedonia will be to prepare a strategy for the full integration of persons with intellectual disability into the community.

Inclusion Europe and PORAKA sincerely believe that this report provides decision-makers with important background information and that the recommendations show vital step forward towards the full recognition and realisation of the human rights of persons with intellectual disability.

*The data-collection and preparation of the Country Report was conducted in the period January – May 2001