Report from the conducted research regarding the situation of persons with intellectual disability in Macedonia
Within the campaign for prevention from maltreatment of children/persons with intellectual disability “Life as a save adventure”, in the period September – October 2010, PORAKA conducted a research in cooperation with its local organisations regarding the situation of persons with intellectual disability in the Republic of Macedonia.
The aim of the research was to perceive the condition of persons with intellectual disability of the territory of the whole state, so therefore the research has been conducted in 14 municipalities: Gevgelija, Kavadarci, Vinica, Ohrid, Bitola, Prilep, Tetovo, Veles, Stip, Demir Hisar, Strumica, Radovis, Kriva Palanka and City of Skopje.
In order to receive unified data and information from the research of the situation on local level, PORAKA prepared a questionnaire, so the representatives from the local organisations of PORAKA used it to interview parents of persons with intellectual disability.
The total number of interviewed parents of persons with intellectual disability in 14 municipalities is 266. While choosing the parents of persons with intellectual disability, it was considered the equal representation according the level of intellectual disability of their children, sex, age, ethnic origin and social status. While processing the received data statistical methods as well as qualitative analyses were used.
The research had the objective to perceive the situation and the living conditions of persons with disabilities and their families in the Republic of Macedonia. Through the analysis of the gathered data and information, the following conclusions were made:
1. The care for persons with intellectual disability is a primary task of the parents and the family, limiting the possibilities for employment and participation in the public, societal and political life.
93% of the interviewed parents emphasised that they are taking care of their child on everyday basis, which consists of number of activities, starting from satisfying their physiological needs, permanent accompaniment and custody, to developing social skills. In addition, 79% of the interviewed parents said that the responsibilities are shared with the spouse and the other family members.
81% of the interviewed parents of persons with intellectual disability pointed out that they face different problems and difficulties in number of areas on everyday basis, and the major part of them emphasised the appalling financial situation.
Taking care of a person with intellectual disability reflects on the employment and the career of 73% of the interviewed parents. Also, 73% of the interviewed parents answered that due to the care of their child with intellectual disability they do not have free time, 58% of the interviewed parents highlighted that caring for a person with intellectual disability limits their societal, public or political engagement, including membership in civil organisations that deal with the rights of persons with disabilities.
2. Persons with intellectual disability are being treated with respect and dignity by the family members, but there is a notion of individual cases of abuse, maltreatment and inappropriate relations within the family.
94% of the interviewed parents of persons with intellectual disability answered that their children with intellectual disability are treated with respect and dignity by the other family members.
3. Persons with intellectual disability are still not sufficiently accepted in the local community and are not entirely included in society life, they are exposed to prejudice that have decreasing trends in the past period.
64% of the interviewed parents of persons with disabilities pointed out that persons with intellectual disability and their families are facing prejudice of different types on everyday basis: non-acceptance and avoidance (due to fear or shame), mockery and despise, negative relations and attitudes, sympathy, derision, treatment of persons with lower value (incompetent, worthless, aggressive, contagious) etc.
94% of the interviewed parents said that persons with intellectual disability are not equal citizens generally and that are not included in the society.
Regarding the exposure of persons with intellectual disability to any kind of abuse, maltreatment of violence in the community, 74% of the interviewed parents of persons with intellectual disability answered that they have not experienced them, i.e. the situation is significantly improved in the past years.
4. The Governmental support for families that have a member with intellectual disability is extremely limited.
90% of the interviewed parents said that they are not satisfied and that the state does not take measures to alleviate the situation.
5. The opportunities for adequate education and effective employment for persons with intellectual disability are limited.
Regarding the discrimination in the educational process of persons with intellectual disability, 38% of the parents said that they have faced and still are facing discrimination in the educational process, including inadequate attitudes by the teachers, parents of children without disability, and children without disability as well. 18% of the parents answered that their children have never been included in the educational process i.e. have not had the opportunity to include their child in the education due to the child’s condition, which is one type of discrimination.
96% of the interviewed parents claim that, although there are legal possibilities, the employment of persons with intellectual disability is accompanied by many problems and difficulties, including different abuses, working on inadequate jobs, minimal wages, not paying salaries etc.
6. The health protection services do not satisfy the needs of persons with intellectual disability in the part of necessary medical provision, and the social protection allowances are minimal and do not provide social security for persons with intellectual disability and their families.
54% of the interviewed parents said that they are not satisfied with the health protection services, adding that providing the necessary medicaments is difficult, then the process of refunding money from the Fund for Health Insurance, as well as the inadequate attitude by part of the medical personnel.
81% of the interviewed parents of persons with intellectual disability responded that they practice rights from social protection (special allowance or allowance for care from another person) and 24% have difficulties with the administrative procedures and the documentation needed for realisation of these rights.
7. The support of the persons with intellectual disability and their families offered by the civil organizations is positively valued.
All interviewed parents (100% of the answers) point out that immediate and concrete action is necessary for improvement of the living conditions of persons with intellectual disability and their families in the Republic of Macedonia. The statements and the suggestions made by the parents are categorized according the following priorities:
- Raising public awareness regarding the rights and needs of persons with intellectual disability;
- Advancement of the legal possibilities regarding the rights of persons with disabilities;
- Provision of support to families regarding the care for their children with intellectual disability;
- Provision of social security for persons with disabilities, by increasing the existing allowances from social protection and introducing new ones – personal rights, as well as equalisation of biological families with foster families;
- Developing a network of social services for support of persons with intellectual disability and their families on local level, including day centers, small group homes, personal assistants, respite centers, etc;
- Advancement of the situation in the field of employment of persons with intellectual disability by strengthening the control mechanisms, which will prevent abuse and inadequate treatment towards the employees;
Improvement of the health services and finding out models for ongoing supply of the necessary medicaments; - Providing better conditions for education and effective implementation of the reforms regarding the inclusive education;
- Partnership relations between the state and the civil organisations which provide services for persons with intellectual disability and recognizing the suggestions coming from civil organisations as relevant guidelines for advancement of the rights and overall situation of the persons with intellectual disability and their families in the Republic of Macedonia.
The report from the conducted research was presented on 2nd of December 2010, within the programme of PORAKA for observance of 3rd of December, The International Day of Persons with Disabilities.
