The rights of persons with disabilities to make choices about their own lives Kasia Jurczak

1. The rights of persons with disabilities to make choices about their own livesKasia Jurczak Conference on Autonomy and Inclusion Copenhagen 7-8 June 2012

2. Choice and control: the right to independent living Encapsulates the social model of disability Outcome of other rights of the Convention Illustrates the inter-dependence of other issues we have been working on

3. A new perspective • Bottom-up approach: personal stories • Independent living: a multifaceted concept • Illustrative example, even if not statistically representative • Cross-disability perspective

4. How was the data collected? Data collected in 9 countries: Bulgaria, France, Germany, Greece, Hungary, Latvia, Romania, Sweden and the UK November 2010 – July 2011 220 face-to-face interviews Focus groups with persons with disabilities Focus groups with stakeholders

5. Article 19 of the CRPD: Right to live independently and be included in community Choice of place of residence and where and with whom to live; not obliged to live in a particular arrangement Access to support services of their choice; prevent isolation or segregation from community Mainstream community services and facilities should be available on equal basis to persons with disabilities Central to the realisation of other rights

6. Living arrangements “Homes” with institutional characteristics Lack of housing options Limited financial resources: underpaid employment and/or low benefits Over-reliance on families “No matter what it is called, for me it is an institution” (Woman, 52, Greece) Living arrangements “I want my own key and my own front door (Man, 34, Latvia)

7. Daily living Education: segregated and of poorer quality, lesser opportunity for skills development Employment: segregated, underpaid, lack of reasonable accommodation or automatic exclusion from the labour market; Social isolation: segregated activities “… deprived of the simple right to education and this makes you a cripple till the end of your life […]” (Man, 32, Bulgaria)

8. Support options Key for independent living Personal assistance at home and work Choice and control over support method and person “In the employer model [personal budget] I hold normal job interviews (Woman, 32, Germany)

9. Participation in the community Empowerment through self-advocacy and peer support organisations Development of independent living skills Recognising the expertise people with disabilities bring “People at the ministries should talk to people like me when they develop legislation and policy. They should ask us what we want and need, and not make our lives more difficult” (Man, 32, Bulgaria)

10. Barriers to choice and control Outdated legal capacity laws Laws on involuntary placement Austerity measures – poverty and exclusion “[With all the cutbacks, when the services are not there, and [there’s] nobody supporting you, they will end up going back to these institutions. And we have to fight to make sure that they do not go backwards” (Man, 51, UK)

11. Societal barriers Bullying and harassment, sometimes resulting in criminal incidents Barriers to forming intimate relations Stigma “We will show society that we are capable too. We can do more than people believe. We need to come out!” (Woman, 53, Sweden)

12. In conclusion Implementation of the right to independent living: measures to give people more choice and control over their daily lives Under-estimating the potential and contribution people with disabilities can make Positive practice from across EU MS of policies that empower people with disabilities to live their lives independently “This budget enables me to build my life all over again” (Woman, 49, Germany)

13. For more information: Kasia.Jurczak@fra.europa.eu disability@fra.europa.eu fra.europa.eu