Independent Living Institute

Arthur Klimchenko lives with his parents in the Russian city of Kaliningrad, he would like to leave home, but says that it is not possible because of his finances and his disability. When personal assistance is described for him, he sees the benefits, but he is also afraid that the assistants would decide over him, because of how persons with disabilities are viewed in Russia. He is also afraid that many disabled would stop doing what they are capable of doing and just exist, eating and sleeping.

In Kaliningrad there are no home help services, people who need practical help but cannot get help from relatives or friends live in institutions. Sergey Kiselev, Chairman of the Apparel would like to see personal assistance introduced in Russia.

In most European countries the most common assistance for people with disabilities is provided by relatives, we can easily understand that this system has weaknesses. The trustful relationship makes it work but : -family members, especially parents, are getting old and can't help eternally their child or relative with disabilities -children that help a parent with disability have to handle with too much important responsibilities and too young -relationship partners can't sacrifice their career for the other and can't fear to sign for a life-long 24hour job -assistance with filial feelings most of the time leads to unequal relation -hiring external assistants is considered as an abandonment if relatives worked before as assistants

Het beleid dat hier wordt voorgesteld is anders, omdat het werd uitgeschreven door mensen die zelf dagelijks op assistentie van andere mensen zijn aangewezen. Het Europees Centrum voor Excellentie in Persoonlijke Assistentie, ECEPA (www.ECEPA.org), bestaat uit acht partnerorganisaties in acht Europese landen die worden bestuurd door personen met een handicap en gespecialiseerd zijn in de belangenverdediging en adviesverlening inzake persoonlijke assistentie voor personen met een ernstige handicap. Door gebruik te maken van onze persoonlijke ervaringsdeskundigheid en van de ervaring die reeds werd opgedaan met het beleid inzake persoonlijke assistentie konden wij een lijst vaststellen van de essentiële kenmerken waaraan zodanig beleid moet voldoen om zelfbeschikking en volwaardig burgerschap voor personen met ernstige handicaps te bevorderen.

Der hier vorgeschlagene Ansatz geht andere Wege, weil er von Personen erarbeitet wurde, die selber im täglichen Leben auf die Unterstützung anderer angewiesen sind. Im Europäischen Kompetenzzentrum für Persönliche Assistenz, ECEPA (www.ecepa.org), sind acht Partnerorganisationen (1) aus acht europäischen Ländern zusammen geschlossen. Diese Organisationen werden von Menschen mit Behinderungen geführt und sind darauf spezialisiert, Assistenzdienstleistungen für Menschen mit erheblichen Behinderungen durchzusetzen und anzubieten.

Using our combined personal experience with personal assistance policies a list of features was compiled for a policy that is to promote self-determination and full citizenship for persons with extensive disabilities. The suggested policy is designed to:

• establish the right to direct payments of assistance services for as many assistance users as possible,
• enable as many assistance users as possible to exercise the degree of control over their services which they prefer at any given situation in their lives

Si dans la plupart des pays européens, la forme la plus répandue d'assistance est fournie par les proches de la personne en situation de handicap, on peut aisément comprendre les limites de ce système. La relation de confiance fait que ce système peut fonctionner, et pourtant : - les membres de la famille de la personne en situation de handicap à haut degré de dépendance, les parents notamment, vieillissent et ne peuvent pas indéfiniment être les assistants de leur enfant-adulte,

Gerry Zarb is a Policy Analyst at the Disability Rights Commission in the UK. He was formerly Disability Programme Director at the Policy Studies Institute. He has extensive research and consultancy experience on a range of disability issues, with a particular interest in independent living.

Speech by Bengt Westerberg, chair of Swedish Red Cross and former Minister of Social Affairs, 2008. 22 years ago I met with Adolf Ratzka for the first time. I was then a politician, the leader of the Liberal party in Sweden, Folkpartiet and had welfare policy for disabled people high on my agenda. Adolf and Bengt Elmén, who also was present when we met in 1986 and who is present here today, told me about the social experiment they had initiated in Stockholm and some other municipalities to substitute the conventional social services provided by the local authorities with personal assistance.

Internationell konferensen i november 2008 för att fira 25 år av Independent Living i Sverige. Dokumentation från konferensen: Välkomstanförande, tal av Bengt Westerberg, Adolf Ratzka med mera.

Kerstin Nilsson, vice chair person of STIL welcomes the guests. I am honoured to welcome you to this conference to celebrate the Independent Living movement’s 25 years of existence here in Sweden. During these two days we should above all learn from each other, from our different experiences of Independent Living and how we as persons with different disabilities handle the challenges we meet on a daily basis.

- En film om rätten till ett själbestämt liv med personlig assistans. Monika har ett funktionshinder och behöver assistans med allt - gå upp, klä på sig, hygien, äta, vara mormor och för fritiden. Hon bor ensam och har kommunal hemtjänst, men kan inte bestämma vilka som ska arbeta för henne. Jämnt kommer nya människor in i huset som hon måste lära upp.

“Mrs Schledermann” (Swedish language, English subtitles) - A film about the right to Independent Living with personal assistance produced for STIL, the Stockholm Cooperative for Independent Living, by Bo Öhlén and Bengt Rejhed 1995