This presentation provides an overview of the history of long-stay institutions for people with intellectual disabilities in Hungary. It discusses reform attempts to change institutions and why these failed. It also reflects on the role of disabled people’s organisations and self-advocates in promoting change

Turnpenny, Agnes

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Kent Academic RepositoryFull text document (pdf)Copyright & reuseContent in the Kent Academic Repository is made available for research purposes. Unless otherwise stated allcontent is protected by copyright and in the absence of an open licence (eg Creative Commons), permissions for further reuse of content should be sought from the publisher, author or other copyright holder. Versions of researchThe version in the Kent Academic Repository may differ from the final published version. Users are advised to check http://kar.kent.ac.uk for the status of the paper. Users should always cite the published version of record.EnquiriesFor any further enquiries regarding the licence status of this document, please contact: researchsupport@kent.ac.ukIf you believe this document infringes copyright then please contact the KAR admin team with the take-down information provided at http://kar.kent.ac.uk/contact.htmlCitation for published versionTurnpenny, Agnes  (2016) The history of institutions in Hungary: what can we learn from it forthe future?    In: Social History of Learning Disability Conference 2016, 7-8 July 2016, OpenUniversity, Milton Keynes.     (Unpublished)DOILink to record in KARhttp://kar.kent.ac.uk/58660/Document VersionPresentationThe history of institutions in Hungary: what can we learn from it for the future?Agnes Turnpenny  WGabor Petri  WJulie Beadle-BrownOpen University, Milton Keynes08. 07. 2016Outline ?Overview of the history of institutions in Hungary ?Current reforms ?What can learn from history (in Hungary and elsewhere)?You are welcome to tweet and take photos.  Please, include @TizardCentre in your tweet.Page 2About HungaryHistory of Institutions in HungaryPage 3Part of the  ?ĂƐƚĞƌŶďůŽĐ ?Population of about 9.5 million people.Political transition in 1989.Much of the 1990s characterised by economic and social crises and administrative reforms.In the 19th century ?Family was the main provider of care. ?Often families keep [disabled people] hidden in the house or sometimes they are abandoned by the family or placed with families or charitable hospitals at the lowest possible cost ? ? ?&ƌŝŵ ? ? ? ? ? ? ?The municipality issued begging licence to those who were not supported by their family.  ?In 1880 the Population Census found that 3 out of 4 ƉĞŽƉůĞǁŝƚŚůĞĂƌŶŝŶŐĚŝƐĂďŝůŝƚŝĞƐǁĞƌĞ ?ƉĂƵƉĞƌƐ ? ? ?First residential school and institution opened in 1875; ƐƚƌŽŶŐŝŶĨůƵĞŶĐĞŽĨ ?orthopedagogy ? ? ?,ƵŶŐĂƌǇ ?ůĂŐŐŝŶŐďĞŚŝŶĚ ?tĞƐƚĞƌŶƵƌŽƉĞ ?History of Institutions in HungaryPage 4Before the 2nd World War ?First  charitable association to support adults with learning disabilities was established in 1930 and it opened 2 institutions (campuses).  ?Eugenics  W ƚŚĞEĂǌŝ ?ƵƚŚĂŶĂƐŝĂ ?ƉƌŽŐƌĂŵŵĞĚŝĚŶŽƚextend to Hungary. There was less concern about the  ?ĐŽŶƚƌŽůand ĐŽŶƚĂŝŶŵĞŶƚ ?of people with learning disabilities. ?People with disabilities are not part of the Holocaust history in Hungary. A recent initiative to teach pupils and young people about the Euthanasia programme: http://www.mindeneletertek.hu/History of Institutions in HungaryPage 5Between 1950-70 ? ?ŽŵŵƵŶŝƐƚǁĞůĨĂƌĞƐƚĂƚĞ ?ďĂƐĞĚŽŶƚŚĞŝĚĞĂŽĨĨƵůůemployment.  ?Disabled and vulnerable people did not fit into this (although many people in institutions worked). Pressure on families to move disabled family members into institutions. ?Looking after vulnerable people in institutions was seen as an opportunity to create employment in rural areas. ?No purpose built institutions, they were created in nationalised buildings, often in rural areas, far from ƉĞŽƉůĞ ?ƐŚŽŵĞƐ ? ?These were not disability-specific and they were simply  ?ǁĂƌĞŚŽƵƐŝŶŐ ?ƉĞŽƉůĞ ?History of Institutions in HungaryPage 6Between 1970-89 ?Reorganisation in the 1970s. This meant moving people without much planning.  ?Three types of institutions created for people with learning disabilities: Rehabilitation institution  Care institution Institutions for children with severe disabilities (they were ĐŽŶƐŝĚĞƌĞĚ ?ƵŶĞĚƵĐĂďůĞ ?ƵŶƚŝů ? ? ? ? ? ?Number of places increased from a few thousand to about 10 thousand. ?No community-based services  ?Ideas of deinstitutionalisation first appeared in the 1980s.History of Institutions in HungaryPage 7The 1990s ?New social policy preserved institutions. ?Attempts to create alternatives to institutions: group homes, village communities.  ?Activism of parents and charities driven by discontent.History of Institutions in HungaryPage 8Source: TASZ, Hungarian Soros FoundationThe 2000s ?ŽŵŝŶĂƚĞĚďǇƚŚĞ ?ŵŽĚĞƌŶŝƐĂƚŝŽŶĂŐĞŶĚĂ ? ?ŝŶƐƚŝƚƵƚŝŽŶƐƐƚŝůůŐŽŝŶŐƐƚƌŽŶŐ ? ?'ƌŽƵƉŚŽŵĞƐďĞĐĂŵĞ ?ŝŶƐƚŝƚƵƚŝŽŶĂůŝƐĞĚ ? ?strict regulation and size requirement (8-14 places). ?EU funding to support  ?ĚĞŝŶƐƚŝƚƵƚŝŽŶĂůŝƐĂƚŝŽŶĂŶĚĐŽŵŵƵŶŝƚǇůŝǀŝŶŐ ? ? ?Hungary ratified the UN Convention on the Rights of Persons with Disabilities: right to living in the community.History of Institutions in HungaryPage 9The 2010s  ?In 2011: 43,000 people with learning disabilities and 5,000 people with autism (half of these under 14). 1 in 3 people with a learning disability lives in a residential setting (most likely institution). ?Attempts to use EU funding to refurbish/build institutions met by strong opposition from charities and the EU; ?Government adopted a 30-ǇĞĂƌ ?ĚĞŝŶƐƚŝƚƵƚŝŽŶĂůŝƐĂƚŝŽŶƐƚƌĂƚĞŐǇ ? ?ƚŚĂƚǁŽƵůĚŬĞĞƉ ?ƌĞŚĂďŝůŝƚĂƚŝŽŶŝŶƐƚŝƚƵƚŝŽŶƐ ?and institutions of up to 50 places); ?First institutional closure programme started in 2011 and  ?ŝŶƐƚŝƚƵƚŝŽŶƐǁĞƌĞƌĞƉůĂĐĞĚďǇ ?ƐƵƉƉŽƌƚĞĚĂĐĐŽŵŵŽĚĂƚŝŽŶ ?History of Institutions in HungaryPage 10Key issues ?Partial closure: out of 770 people only 660 people ŵŽǀĞĚŽƵƚ ?ƚŚĞŽƚŚĞƌƐǁĞƌĞĐŽŶƐŝĚĞƌĞĚ ?ƚŽŽŽůĚ ?Žƌ ?ƚŽŽĚŝƐĂďůĞĚ ?ƚŽŵŽǀĞ ? ?New settings are large  W8-12 and  25 places; ?Involvement of individuals: lack of person-centred or individual support planning.  ?Staff training; ?Institutions enjoy high levels of public approval, physical infrastructure is seen as the main problem and group homes as the only alternative; ?Situation of those living with their family: poverty and lack of support as a result of decades of austerity. History of Institutions in HungaryPage 11Experiences of people moving out from an institutionMost of them lived in institutions for many years (decades). Many uncertainties around the move.History of Institutions in HungaryPage 12Photos taken by residents of one institution.They are looking forward to moving out. Experiences of people moving out from an institutionHistory of Institutions in HungaryPage 13Involvement in everyday decisions:- Housemates;- Colours and some furniture.People are looking forward to having more independence and better conditions. Lessons and learning from other countries ?Understanding our history can help us avoid the same mistakes (in this case, how community-based group homes became institutionalised) ?Every country is different. What works in one country might not work elsewhere.  ?It is often more useful to look at the mistakes others make to learn from those. Personal stories/testimonies can help us understand these. History of Institutions in HungaryPage 14References ?Turnpenny, A. (2011). Deinstitutionalisation and Community-based Care for Adults with Intellectual Disabilities in Hungary: Policy Change, Challenges and Outcomes. PhD dissertation. Tizard Centre, University of Kent. Available here: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.590063 ?The role of EU funding in deinstitutionalisation (DI) in Hungary and the experiences of the DI programme so far. English summary available here: http://tasz.hu/node/16936 ?Quality of Life and Costs of Living and Services of Disabled People in Various Residential Arrangements in Hungary.English summary available here: http://www.tarki.hu/en/news/2016/items/20160408_fszk_en.pdfHistory of Institutions in HungaryPage 15Thank you!Contact: a.v.turnpenny@kent.ac.ukHistory of Institutions in HungaryPage 16

The history of institutions in Hungary: what can we learn from it for the future?

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The history of institutions in Hungary: what can we learn from it for the future?

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