In Hungary life in the community for people with learning disabilities remains a distant aim.
Agnes Turnpenny is from Hungary and works with several organisations to promote deinstitutionalisation and community living in her home country. She describes the problems faced in bringing to an end the institutional system inherited from the communist era – problems also facing a number of other east central European countries.
Hungary, in East Central Europe, was part of the former ‘Eastern Bloc’ but has been a member state of the European Union since 2004. It has a population of around 9.5 million people, of which nearly 80,000 – the majority older adults – live in social care institutions. However, at the end of 2013 17,000 people with disabilities – the vast majority with learning disabilities – and 9,000 people with mental health problems lived in institutions. There are approximately 150 institutions for people with learning disabilities with an average size of 130 places. On paper the Government is committed to the closure and replacement of institutions with community-based services but in reality they are investing large sums of money in creating smaller institutions rebranded as ‘supported accommodation’ in the community. Although these will undoubtedly mean a massive improvement in people’s quality of life, especially their material living conditions, the majority will not provide individualised support and real community inclusion, and therefore will ultimately represent a wasted opportunity and resources.
Burden
The origins of the current institutional system go back to the early communist ‘welfare state’ in the 1950s, organised around the ideology of full employment. Everybody – men and women – were expected to work, except people who were considered too ill or too disabled. People with disabilities did not fit in this model and were seen as a burden on their families and on society. Families were encouraged to institutionalise disabled children, and those who decided to look after them at home were faced with strong disapproval from the community and no support of any kind from the state. Children with severe learning disabilities were excluded from public education until 1993, after the regime change.
On the other hand, looking after vulnerable people in institutions was seen as an employment opportunity for large numbers of unskilled (female) labour in rural areas. Institutions were established in nationalised buildings – mansion houses, monasteries, old army or mine barracks – that had in common that they were not fit for human accommodation and were typically found in remote rural areas, often close to the borders with poor infrastructure and transport links. For example, people with learning disabilities from the capital city Budapest were placed in institutions 100-150 miles away, on the border with Austria (very difficult to access by public transport).
The 1970s saw some changes in the provision of residential care for people with learning disabilities, in particular the creation of specialist learning disability institutions for adults and children to replace mixed provision, and a substantial expansion in the number of places. New institutions opened in less remote areas. The first non-residential, community-based services also appeared in the late 1970s – mainly sheltered workshops and day centres – that together with the expansion of maternity benefits offered an alternative to institutionalisation for many families.
New approaches
The ideas of deinstitutionalisation and normalisation first appeared in Hungary in the mid-1980s among professionals and parents who visited or heard about Austrian, Canadian and US services (Lányi-Engelmayer 1982). The first group homes opened in the late 1980s, shortly before the regime change. By that time the erosion of the communist regime reached a point where private initiatives were no longer suppressed and the period was also characterised by an intense search for new approaches and openness to new ideas. Grass-roots parents groups could openly voice concerns over conditions and human rights abuses in institutions (such as restraint and the use of cage beds) and created alternative, community-based services – group homes – based on ‘Western’ models. Some institutions also established group homes, ‘half-way houses’, and even supported living-type arrangements. There seemed to be a real prospect of change.
In 1993 a new law on social care and benefits came into force that represented a major departure from the ‘welfare’ policies of the communist regime in many ways; however it preserved institutions as the only form of residential care for people with disabilities. In the 1990s various international and private donors (the Dutch Government, the Hungarian Soros Foundation) supported the creation of group homes. However, the closure of institutions was not on the agenda: only their modernisation and ‘humanisation’. The group homes that developed were quite large in size (8-14 places) and many of them severely understaffed.
Hungary ratified the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol in 2007. Article 19 (Living independently and being included in the community) makes the unjustified segregation of people with disabilities in congregate settings a violation of human rights. The Government regarded the ratification as “an outstanding achievement”; however, no consideration was given to its policy implications.
Meanwhile, the Hungarian Government had been under pressure for some time to invest money in the infrastructure of institutions because many had deteriorated to a point that they became unsuitable for human accommodation.
In 2006 the European Union permitted the use of the European Regional Development Fund to support investments in social infrastructure in the new member states. This meant that the Government could use EU money to close the institutions and develop the support for people with disabilities to live in the community. Instead, in 2009 they decided to allow the replacement of existing institutions with new ones with up to 50 places on the grounds of the old institution. This met with strong opposition from advocacy and human rights organisations in Hungary and across Europe, and following the intervention of the European Commission the Government had to recall and revise the programme. The new programme permitted the development of institutions with up to 25 places and allowed only the development of new infrastructure in the community.
Real change
Between 2011 and 2016 six institutions – four for people with learning disabilities and two for people with mental health problems – closed and the majority of residents moved to smaller houses in the community (for 8-10 people). Although the programme was far from perfect, it was a step towards real change and an opportunity for learning (Kozma et al 2016). The government put its plans for the future continuation of the programme out for public consultation in 2016. These represented a huge step backwards in the little progress towards community living that has been achieved so far. The plans allow partial closure and campus-style developments on existing sites of institutions, contrary to UN Convention and EU legislation (OSF 2015). This is now being challenged by a coalition of advocacy and human rights organisations, but the prospect of de-institutionalisation seems like an increasingly remote possibility.
References
Lanyi-Engelmayer A, Katona F, Czeizi A, (1982) Current issues in mental retardation in Hungary, Applied Research in Mental Retardation, 4:2, pp. 123-138
Kozma, A., Petri, G., Balogh, A. & Birtha, M. (2016). The role of EU funding in deinstitutionalisation in Hungary and the experiences so far. Budapest: Hungarian Civil Liberties Union. Available: http://tasz.hu/files/tasz/imce/zarotanulmany_tasz_a4_preview_4.pdf (English summary starts on p. 10)
Open Society Foundations (2015). Community, not confinement. The Role of the European Union in Promoting and Protecting the Right of People with Disabilities to Live in the Community. New York: Open Society Foundations. Available: https://www.opensocietyfoundations.org/sites/default/files/community-not-confinement-20151014.pdf
Agnes Turnpenny is a researcher at the Tizard Centre, University of Kent.
a.v.turnpenny@kent.ac.uk
