the rights of persons with disabilities to make choices about their own lives kasia jurczak

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Conference on Autonomy and InclusionCopenhagen 7-8 June 2012

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

lives

Kasia Jurczak

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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

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A new perspective

Bottom-up approach: personal stories

Independent living: a multifaceted concept

Illustrative example, even if not statistically representative

Cross-disability perspective

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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

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Article 19 of the CRPD: Right to live independently and be included in community

1. Choice of place of residence and where and with whom to live; not obliged to live in a particular arrangement

2. Access to support services of their choice; prevent isolation or segregation from community

3. Mainstream community services and facilities should be available on equal basis to persons with disabilities

Central to the realisation of other rights

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Living arrangements

“Homes” with institutional characteristics

Lack of housing options

Limited financial resources: underpaid employment and/or low benefits

Over-reliance on families “I want my own key and my own front door (Man, 34, Latvia)

Living arrangements

“No matter what it is called, for me it is an institution” (Woman, 52, Greece)

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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)

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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)

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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)

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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)

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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)

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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)

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fra.europa.eu

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

disability@fra.europa.eu