Advancing Deinstitutionalisation & Community Living (Art 19)

1. Advancing Deinstitutionalisation & Community Living (Art 19) Orla Kelly, University of Iceland First Network Meeting Brussels 25/11/11

2. DREAM ROLE • Examine practical challenges – legal, policy and programmic – in the process of deinstitutionalisation • Explore if deinstitutionalisation has brought fundamental changes in the lives of people with disabilities • Do people with disabilities enjoy rights to full community inclusion according to Article 19 of the CRPD? Rannsóknasetur í fötlunarfræðum

3. Purpose of Research • To focus on the developments regarding the translation of Article 19 of the UN CRPD for people with severe to profound intellectual disabilities in the context of the developments experienced by other people with disabilities. • History of deinstitutionalisation & exploration of contemporary issues regarding deinstitutionalisation, ‘second-wave deinstitutionaliation’ and ‘community living’. How far have we gone for people with severe to profound intellectual disabilities? • Models of housing & support provision for people with severe to profound intellectual disabilities – International, European, National • Inter-relatedness of Art 19, Art 12, Art 24 & Art 27

4. Rationale For Study • Research shows that people with severe to profound intellectual disabilities are usually the people who are least likely to be moved out of institutions and into the ‘community’, are more likely to be reinstitutionalised or sent to other institutions (Lemay, 2009; Mansell, 2010) • They are acutely affected by resource and financial issues • People with very high support needs do not receive appropriate levels of staff contact, remain isolated from their community and have very restricted personal support networks (Felce et al, 1998; Mansell et al, 2001)

5. Research Questions • What does ‘community living’ mean? What does it mean for people with severe to profound intellectual disabilities? • What are the challenges & barriers to people with severe to profound intellectual disabilities being fully included in society? • What are the structures & supports required to support people with severe to profound intellectual disabilities in being fully included in society? • What models of ‘community living’ are available to include people with severe to profound intellectual disabilities fully in society?

6. Placement & Methodology • European Group of National Human Rights Institutions (EG-NHRI’s) • 3 Case Studies in Iceland, Ireland & Eastern European Country withindividuals with severe to profound intellectual disabilities who reside in: Institution Group Home Individualised Arrangement

7. Anticipated Issues & Research Barriers • Language Barriers • Time • Accessing people’s views • ‘Gatekeepers’ • Ethical Considerations