2023 marks 60 years of active participation of the Republic centre for Support of persons with Intellectual Disability – PORAKA. In the past 60 years, the Republic centre – PORAKA, as an organization for persons with intellectual disability in our country, has been a leader of numerous initiatives aimed at creating society in which all persons with intellectual disability and their families will have a dignified life.
As a network of local organizations and social services throughout the country, led by committed activists, professionals, and parents of persons with intellectual disability, the Republic Centre – PORAKA contributes to the creation of all significant laws, policies and programmes that refer to human rights of persons with intellectual disability and their implementation on national and local level. As a network of local organizations and social services throughout the country, led by committed activists, professionals, and parents of persons with intellectual disability, the Republic Centre – PORAKA contributes to the creation of all significant laws, policies and programmes that refer to human rights of persons with intellectual disability and their implementation on national and local level.
The large number of successfully implemented programme activities, special programmes, projects, and established services, speak for the work of the Republic Centre – PORAKA as an important stakeholder in the process of equalisation of opportunities for persons with intellectual disability.
The Republic Centre – PORAKA is one of the main promoters and advocates of the UN Convention on the Rights of Persons with Disabilities in our country. In December 2011, led by the humane aspects and benefits offered in the Convention, all members at the parliament, unanimously, without reservations, passed the Law on Ratification of the Convention and committed the state to incorporate this international treaty into national legislation. But, despite more than a decade since its adoption, there is still a lot to be done to achieve the full inclusion of persons with intellectual disability in all segments of society life. Therefore, this 3 December, the International Day of Persons with Disabilities, we reaffirm the commitments and demands of the Republic Centre – PORAKA and its members.
The Republic Centre – PORAKA’s priorities for advancing human rights of persons with intellectual disability човековите права на лицата со интелектуална попреченоста
The assessment model, definition for disability and statistics
• Full introduction of the new model for functional assessment according to ICF and providing all necessary material, infrastructural and human resources for functioning of the assessment bodies.
• Further continuous action for acceptance and use of appropriate terminology for persons with disability by all stakeholders and the public.
• Creation of National Register for Persons with Disability and enforcing the Law on National Data Base for Persons with Disability, as a base for creating and advancing the rights of persons with disability in the country.
Non-discrimination and raising public awareness
• Full implementation of the legislation on prevention and protection from discrimination.
• Encouraging and empowering persons with disability to report discrimination.
• Continuation of activities for raising public awareness.
• Strengthening the cooperation with media in order to accept ways of reporting based on the human rights approach for persons with disabilities.
Accessibility
• Respect, consistent application and practical realisation of the legal regulations and norms for space planning and designing facilities, which will make them accessible to persons with intellectual and combined/multiple disabilities of every age group (ramps, elevators, audio and light signalling, sidewalks with light slope and other forms that will allow free movement and space orientation.
• Creating strategy and action plan for introduction of easy-to-read and accessible format for persons with intellectual disability, so that information and communication are accessible for persons with intellectual disability as well.
Health Care and Health Insurance
• Urgent implementation of the last amendment to the Law on Health Insurance (July 2023) is needed, which provides free health care, treatment, and medications for all persons with intellectual disability, without age limitation of 26 years. Exemption from payment of participation is also required for purchasing orthopaedic aids for persons with intellectual disability over 18 years of age.
• Revision of the positive list of medications is needed as well as availability of necessary medication for children/persons with intellectual disability. Additionally, regarding the purchase of medication, it necessary to ease and speed up the procedure for refunding from the Health Insurance Fund.
• When needed, the family doctor of the patient with intellectual disability should recommend a companion during hospitalisation, without age limit, in order to successfully provide the necessary health care.
• It is required to develop services, programmes and prevention services, early detection and diagnostics, and early intervention, when detecting atypical development of newborns, but also follow ups, treatment and rehabilitation.
• Counselling support for persons with intellectual disability and their families by providing information, education and training in the health care area.
• Ensuring universal access to all necessary health services for persons with disability (including sexual and reproductive health services), training of the health care workers for the human rights-based approach to persons with disability, as well as information, education, and reduction of prejudices among the medical personnel.
Living independently and being included in the community
• It is necessary to ensure continuity and stability to the implementation of the decentralisation process and effective transformation to large residential institutions by implementing the transformation plans.
• Providing sustainability to the existing support services and creating new support services according to a real assessment of the needs of persons with disability and their families.
• Personal assistance as a service should be available for persons with intellectual disability as well. Establishing new types of services to cover the gaps in the offer of services on local and/or regional level: in-home support and care, respite care, crisis centres…
• Improving the quality and upgrading the function of existing support services (day centres, foster care, small group homes and personal assistance for persons with disability).
• It is necessary to develop additional person-oriented methodologies and to provide training of the staff at the social support services.
• Enhancing regulatory mechanisms with quality standards, including monitoring and evaluation procedures.
• Establishing partnership between civil society service providers and the stat – equal treatment for all service providers.
• Providing support to unformal care in order to prevent placement in institutions and enable further reduction of the rate of institutionalisation.
• Strengthening decentralisation and the role of the units of local self-government in the reform processes of the social protection system and providing community-based services through sustainable funding.
Education
• Providing all necessary material, financial, infrastructural, and human resources for full comparison of the positive legislation on inclusive education and leaving the current segregation practice of pupils with intellectual disability in segregated educational settings.
• Providing opportunities and support for every child/person with intellectual disability to be included in educational programme, regardless of their level of disability.
• Introducing new methodologies for working with children with disabilities in the educational system and updating the curricula according to the requirements of the labour market.
• Providing adequate support, resources and qualified training for teachers and support staff to encourage inclusion.
• Providing universal access to education facilities and premises, on all educational levels.
• Raising awareness among the teachers, school children and their parents regarding the needs and rights of persons with intellectual disability.
Work and employment
• Consistent introduction of the supported employment model for persons with intellectual disability in the new legal framework and gradual abandonment of the protected employment model.
Unlike the supported employment model, the protected employment model that functions in our country is being realized in segregated environments and conditions, without support during the employment and work, which often contributes to the employee with intellectual disability not obtaining employment or not keeping the job.
• Introducing quote system for employing persons with intellectual disability in public administration and at the open labour market, which enables their inclusion in mainstream society life.
• Taking measures to reduce the abuses of persons with intellectual disability in the workplace. The analyses of the Republic Centre – PORAKA indicate that employees with intellectual disability are often victims of discrimination, harassment, prejudices, and abusive attitudes in the workplace.
• Taking measures to detect and sanction fictive employments. There are cases when, at the initiative of the employer, persons with intellectual disability make employment contracts, but do not start work, and receive a small amount of money for this. On the other hand, the employer uses the benefits in accordance with the Law on Employment of Persons with Disability, which represents a classic example of abuse.
• Strengthening the mechanisms for monitoring and controlling the employer’s relations towards employees with intellectual disability, as exceptionally important for effective exercise of the right to employment for persons with intellectual disability.
Adequate standard of living and social protection
• Persons with moderate intellectual disability, who previously were possible beneficiaries of the mobility allowance if using a wheelchair, are not foreseen as beneficiaries of the disability allowance.
We recommend that persons with intellectual disability are included as beneficiaries of the disability allowance, at least in smaller scale, the same as for a completely deaf person. This is due to the fact that persons with moderate intellectual disability rarely acquire education, rarely are employed and rarely have the opportunity to participate in society life, and the allowance would be used to empower their social inclusion.
• Assessing the efficiency of the social protection allowances and their increase, in accordance with the actual costs of living and the costs resulting from disability.
• Facilitation of administrative procedures for exercising the rights from child and social protection, especially the allowance for care from another person and the disability allowance. In that direction, it is necessary to increase the number of appointments at the Commission for determining the right to these allowances, in order to timely exercise the available rights for all persons with intellectual disability who need financial social protection.
Respect for home and the family
• Detail analysis of the legislation and practices that limit the rights of persons with intellectual disability related to marriage, parenthood, family, and family relationships.
• Formulating new legislation that will not be discriminatory towards persons with intellectual disability but will offer solutions for support in exercising the rights in these areas.
Equal recognition before the law
• Changing the system for taking and limiting the legal capacity and introducing the supported decision-making system.
Participation in political and public life
• Persons with intellectual disability exercise their right to vote unless their legal capacity is not taken or limited. This confirms the need and the importance for urgent reform of the system for taking or limiting the legal capacity and introducing the supported decision-making system, including in the electoral processes as well.
• Initiatives and measures are needed for strengthening and empowering persons with disability who have aspiration to be included in the political life and to participate in elections.
