GRUPINIO GYVENIMO NAMŲ STEIGIMO POREIKIS SUAUGUSIEMS ŽMONĖMS SU NEGALIA, GYVENANTIEMS ŠEIMOJE

Abstract

Reorganization of care institutions in Lithuania started in 2017 with the establishment of group living homes, which are one of the community accommodation services. Group living homes (hereinafter referred to as GGN) should open up new, high-quality life opportunities for people with intellectual or psychosocial disabilities – learning independence, living with dignity, following the care model prevailing in European countries. The activities of these institutions should be aimed at developing daily life and independence skills, responding to the individual needs of people living there and the expectations of their parents. However, according to experts, the creation of group living homes in Lithuania means replacing larger institutions with smaller ones, without ensuring equal opportunities and the right to choose for all persons with disabilities and their families (United Nations Convention on the Rights of Persons with Disabilities Monitoring Report, 2023 ). According to Ruškus (2020), it is not necessary to build new small institutions aimed at transferring persons with mild disabilities from large care institutions, but to implement our commitment from 2010 to the social inclusion of all persons with disabilities.From 2017, 53 such homes for adults with disabilities have been established in Lithuania, housing about 500 people transferred from care institutions. Although almost 10 years have passed since the start of deinstitutionalization, only 5 percent of people with disabilities have settled in community-based GGNs during this period. The transformation of the social care system in Lithuania is scheduled to be completed by 2030. However, more and more human rights activists and researchers have serious doubts that the implementation of the reform of care institutions will be achieved on time (Pūras, 2019). Relatives and guardians of people with disabilities expressed concern that the need for GGN places for their children is only growing, the GGN description does not mention the adaptation of these institutions to the special needs of people with complex disabilities, and the expected population does not include disabled people from families who currently live at home with their parents, who fear old age and ask: who will take care of their children when they themselves are unable to do so? The 
following are identified as obstacles to deinstitutionalization: lack of political will, economic factors, negative public attitudes, and community resistance to the creation of GGN (“Towards Community Services: Ten Years”, 2023). Many studies have been conducted on the situation and experiences of families raising a child with intellectual or complex disabilities, which have found that such a long-term process poses many challenges: constant childcare, financial challenges, stress, exhaustion, social iso lation, etc. (Allred, 2015 ; Broberg , 2011; Hewitt, 2020; Hatton, Glover et al., 2016). In 2020, a study initiated by the Social Welfare Department revealed the fears and frustrations of families raising children with disabilities living in Lithuania with regard to the social support and care system (“Qualitative and quantitative assessment of the extent of assistance provided to families and families with long-term disabilities”, 2020).
However, this article does not aim to reveal and analyze the disruptions in the social care reform, to find responsible authorities and to find those responsible, answering the question - why is the establishment of the GGN so slow? The problematic question that will be tried to answer is - why was it decided to limit itself only to the transfer of people from care institutions, leaving disabled persons living in families on the margins? It is relevant to examine why this reform does not provide for the prospect of long-term care for everyone, without discriminating against people based on the nature of their disability?
The subject of the article is the need to establish residential homes for adults with different 
disabilities living in a family . Purpose – to reveal the rights of adults with disabilities living in families to long-term social care by placing them in group living homes adapted to their needs. Objectives: 1) to reveal the views of specialists on parents’ preferences for placing their disabled children in a group living home; 2) to analyze the need for group living homes for adults with intellectual disabilities in city X and the possibilities of establishing them.
The article raises the following problematic questions: Is there a need in Lithuania to create group living homes for disabled adults living in families? Are the diversity of disabilities and differences in needs taken into account when creating GGN and ensuring equal opportunities for all? What are the reasons for the objections of parents and social specialists to the creation of GGN? After assessing the situation of families raising adult children and the need for group living homes, the following aspects were highlighted: there are no statistics on how many adult disabled people live in the family, there is a lack of necessary assistance and community services, parents experience chronic fatigue and distress, fear for the future of adult children, but are psychologically not ready to “let go” of their child. The negative attitude of parents towards long-term care institutions was revealed, as well as doubts about the compliance of group living homes with the needs of the child. Assessing all the circumstances, the illusion of a “vicious circle” is created, that in Lithuania there is no need to establish group living homes for disabled people living in families. The study showed that parents willingly use social services provided by day social care institutions, which are identified as the main assistance to parents caring for an adult child with a disability. Families are slow to use the temporary respite services provided, seeking help and solutions among their relatives, citing the reluctance of parents (relatives) to leave their child in an unfamiliar environment, fear that they will not be properly cared for, that they will be rejected. Parents do not want to deal with social institutions where they have to humbly ask for a service, prove their child’s disability, explain their needs, etc. Another part of the problem is distrust of short-term care nurses, who often do not have the appropriatequalifications and do not know the peculiarities of communication or behavior of people with different disabilities.
The study confirmed and particularly painfully revealed the helplessness of parents regarding their child’s future, caused by anxiety and concern that they will die before their children. What are the expectations of relatives for the conditions of group living homes that would satisfy adults with intellectual disabilities and their families so that they would want to live in them: a small number of residents would allow for more effective quality of services, and at the same time a dignified life for a person with a disability; close to the family’s place of residence, ensuring the quality of individualized services, parents would have the opportunity to maintain close relationships with their child and actively participate in their child’s life, take care of their needs, and participate in the decision-making process. The essential condition, which was named by five out of six study participants, is changing the parents’ personal attitudes. Families must get rid of the oppressive feeling of guilt and not be afraid to apply for long-term social care services. Parents who, after the birth of a disabled child, chose to keep him, raise him with love, and take care of him at home, today do not have the opportunity to choose a home where the children would be ensured a home environment, a safe and dignified life. Today, personal initiatives of parents are trying to solve the problems – mothers raising children with disabilities are forming groups, reading legal acts that oblige municipalities to provide assistance, contacting responsible institutions, relying on good practices abroad, and preparing documents proving the importance of group living homes, created taking into account the individual needs of people with disabilities.

Keywords: family raising an adult child with a disability; social care system; institutional care reform; group living homes.