IPF 2004 fellow Dovile Juodkaite

Project Proposal
Present and future Challenges in Lithuanian
Mental Health Policy: shifting from deinstitutionalization
towards independent living

2004 Fellowship issue area: Public Health, Mental disability Advocacy Program (MDAP)

    People with mental disabilities are one of the most disadvantaged groups of people in Europe. Historically, society has tended to isolate and segregate them and, despite some improvements, discrimination against individuals with disabilities continues to be a serious and pervasive social problem.  Prevailing negative attitudes towards people with mental disabilities mainly arises through a lack of information about this group of people, as well as misleading information about their supposed "danger" to society. In Central and Eastern European countries people with mental disabilities are generally considered dependents, not full members of society. The care for this group is most often provided in isolated and inhumane closed institutions. This system of service provision is still seen by most political decision-makers as the most efficient. The continuing existence of illegal discrimination and prejudice denies people with disabilities the opportunity to integrate fully into the community and to enjoy the same rights and possibilities as all other individuals.
    The Lithuanian legal system guarantees basic human rights for people with mental disabilities, including sufficient medical care, education, proper living conditions in the community, and assistance to the person and family members. However, legal provisions are often vague or unclear, and do not address the primary issues of persons with mental disabilities in a proper or adequate way. There are many cases of rights violations or of refusal to recognize these laws. Issues affecting people with mental disabilities are different in that people with mental disabilities usually can not fully represent their interests themselves, without the help of family members, nongovernmental organizations, or other interested persons.
    The main objectives of this policy research project are to: analyze Lithuanian legislation and government policy on mental health and social welfare, to overview the current situation with regard to deinstitutionalization and providing housing for people with both intellectual and mental disabilities in the community (supportive housing); to provide an overview of the relevant international norms and standards (United Nations’ declarations and resolutions, European documents) and their interpretation and implementation in the domestic legislation; to research best practices from other countries in providing efficient community based supportive housing services together with other assistance in the community for people with intellectual disabilities and people with mental health problems; to devise recommendations based on the research on developing an effective strategy to encourage the deinstitutionalization process and promote positive changes in Lithuanian mental health and social welfare policy. The policy paper will target relevant government authorities, policy stakeholders, and the general public in an attempt to raise awareness about the issues affecting particularly people with intellectual disabilities in order to address their specific needs.
    Within the framework of the project, an analysis of national legislation regulating the protection of human rights of people with both intellectual and mental disabilities residing in the closed residential institutions in Lithuania will be carried out. The present situation in the large institutions will be analyzed and documented. A study of all the support and assistance structures currently available for people with mental disability both in the institutions and the community will be performed. In the course of the project an overview of internationally adopted legal acts (both binding and non-binding) with respect to people with mental disabilities will be made. Specific focus will be on the provisions that are necessary for adequate support for people with mental disabilities within the community, their implementation and functioning in Lithuania. The research will also consider examples of best practices from other countries of community based supported housing services and other support services in the community for people with both intellectual disabilities and mental health problems. Two examples from Central and Eastern European countries, one – from a western European country and possible reference to the US supported living programs within mental health system will be taken as the bases.
    A system of in-patient social care institutions still prevails in Lithuania. Great numbers of people both with intellectual disabilities and mental health problems live in these large residential institutions (social care institutions, psychiatric hospitals) which generally do not comply with international standards regarding hygiene, accessibility and ultimately do not correspond to the principles of de-institutionalization and modern social care standards.
The data obtained from the research will help to form an impartial opinion about the current life situation of people with mental disabilities and the barriers they face in exercising their fundamental human right to safe and proper living conditions in the community in Lithuania. Comparing best practices from other countries in promoting and implementing more efficient, integrated care for persons with mental disabilities, based on respect for their fundamental human rights, will help induce of the shift from segregated institutional care to social inclusion. It will draw recommendations to address relevant and effective strategies for positive changes in Lithuanian mental health and social welfare policy which will be the basis for creating living conditions for people with mental disabilities in the least restrictive environment. In this way, the research also aims to affect deinstitutionalization policy in Lithuanian.
    There are many areas wherein both people with intellectual disability and mental health problems face similar problems, human rights violations and discrimination. Covering all these areas, the research will help to identify specific needs of people with intellectual disability and mental health problems when developing alternative community based care services for there two groups of people. The review and documentation of the current situation of people with mental disabilities will be finalized and the policy paper prepared for providing conclusions and recommendations on the basis of the research. It will focus particularly to improve the organization and coordination of community based support for people with intellectual disabilities, considering their specific needs for support.  Recommendations for the relevant Lithuanian government and local authorities, policy stakeholders, NGOs and international organizations, as well as general public to intensify their efforts to recognize, ensure and realize the rights of people with intellectual disabilities in Lithuania will be proposed. This can be used by them for lobbying relevant authorities to implement and enforce existing laws and opportunities as well as to challenge various obstacles that people with intellectual disabilities are facing.
Various support structures, i.e. existing ones and the ones that should be introduced in the country should be mobilized. The role of disability NGOs should be recognized to organize support services in the closest surrounding within the community to make them more available and effective on the basis of identified needs of people with intellectual disabilities and their families. An ultimate aim of the research is to safeguard social integration and strengthen independence of people with intellectual disability to the largest extent. Leaving behind the humiliating attitude towards people with intellectual disabilities and mental health problems which characterizes them as dependents and reinforces their social exclusion should be replaced by high quality social services providing them with a greater number of opportunities to become equal members of society.  More humane European standards, coordinated actions and specific programs encouraging people with intellectual disabilities to realize optimum independence should be embraced.
 

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