Community Living: Moving from Concept to Reality? Camilla Parker, Disability & Human Rights Consultant Partner, Just Equality 3 rd May Just Equality: Linking Law to Life

Community Living: Overview Article 19 and the CRPD Development of the right to Community Living Community Living: what it means and why it matters (to us all) Deinstitutionalisation and Article 19 Myths and misconceptions The role of Structural Funds in future reform Just Equality: Linking Law to Life 2

Article 19 Convention on the Rights of Persons with Disabilities (CRPD) Equal right of disabled people to live in the community with choices equal to others States must take effective and appropriate measures to facilitate disabled people’s: Full enjoyment of this right Full inclusion & participation in the community Measures taken includes by ensuring: Equal opportunity to choose where & with whom to live Access to range of community-support services Mainstream services are available on equal basis (and are responsive to individual needs)

Community Living: a description ‘People with disabilities are able to live in their local communities as equal citizens, with the support that they need to participate in every day life. This includes living in their own homes or with their families, going to work, going to school and taking part in community activities’* *European Coalition for Community Living, Focus on the UN Convention on the Rights of Persons with Disabilities, 2009

The Right to Community Living (1) UN Persons with disabilities are members of society and have the right to remain within their local communities. They should receive the support they need within ordinary structures of education, health, employment and social services. Standard Rules on the Equalization of Opportunities for Persons with Disabilities, (1993) CoE European Social Charter (1996) e.g. Art 15: right of persons with disabilities to independence, social integration & participation in the life of the community Disability Action Plan Action line No 8: Community Living - Focus on enabling people with disabilities to live as independently as possible, to make choices on how and where they live 5 Just Equality: Linking Law to Life

The Right to Community Living (2) “National policies should help elderly persons continue to live in their own homes as long as possible, through the restoration, development and improvement of homes and their adaptation to the ability of those persons to gain access to and use them” (CESR, GC No ) States to adopt or encourage measures “to enable elderly persons to remain full members of society for as long as possible...to enable elderly persons to choose their life-style freely and to lead independent lives, in their familiar surroundings as long as they wish and are able...” (Article 23 Revised European Social Charter 1996) Just Equality: Linking Law to Life 6

Community Living: Why It Matters (1) Where we live: having a home What we do: work, leisure Who we spend time with: personal relationships, social networks Civic engagement: voting, standing for election, etc Just Equality: Linking Law to Life 7

Community Living: Why It Matters (2) Values each of us as individuals but recognises our connection with others We all need support to realise our aspirations and fulfil our potential Former CoE Commissioner for Human Rights, Thomas Hammarberg: “Article 19 of the CRPD embodies a positive philosophy, which is about enabling people to live their lives to their fullest, within society” Just Equality: Linking Law to Life 8

Crucial Importance of Right to Community Living under Article 19 Confirms that community living is a human right Underpins policy objectives of promoting social inclusion and challenging discrimination (EU, CoE) Highlights gap between rhetoric and reality Over 1 million people with disabilities in institutions across Europe (DECLOC) Human rights abuses within institutions Institutionalisation not an acceptable form of “care” in 21 st Century – incompatible with right to community living EU’s ratification of CRPD: use of Structural Funds to maintain institutions rather than develop community based alternatives is contrary to CRPD and EU law (OSF, The European Union and the Right to Community Living, 2012) Just Equality: Linking Law to Life 9

Community Living & Deinstitutionalisation: Myths and Misconceptions Promotes independence NOT isolation: people to be given support so they can participate in community life Not just about the physical environment: the nature of support is key – does it enable the person “to live the life that they choose and to be included in their local community”? (JCHR Implementation of the Right of Disabled People to Independent Living, 2012) Deinstitutionalisation only a factor: “For persons to have choice and control over their lives they should be, for example: allowed to vote in elections and stand for public office; facilitated to work through reasonable adjustments in the workplace; and allowed to enter legally binding contracts. (FRA, 2012) Just Equality: Linking Law to Life 10

Structural Funds – potential catalyst for positive reform “Structural Funds have the potential to support the development of quality family-based and community- based alternatives to institutional care, and to ensure that these services are available to all those who need them” (EU Funds Toolkit November 2012)

Community Living: References (1) G. Quinn and S. Doyle (2012) United Nations Human Rights Office of the High Commissioner, Europe Regional Office, Getting a Life: Legal Analysis of the Current Use and Future Potential of the EU Structural Funds to Contribute to the Achievement of Article 19 of the UN Convention on the Rights of Persons with Disabilities Open Society Foundations, The European Union and the Right to Community Living Structural Funds and the European Union’s Obligations under the Convention on the Rights of Persons with Disabilities, (Camilla Parker and Luke Clements) 2012 Council of Europe, Commissioner on Human Rights, The Right of People with Disabilities to Live Independently and be Included in the Community, 13 th March 2012: House of Lords, House of Commons, Joint Committee on Human Rights Implementation of the Right of Disabled People to Independent Living, February 2012 Just Equality: Linking Law to Life 12

Community Living: References (1) European Union Agency for Fundamental Rights (FRA) Choice and control: the right to independent living: Experiences of persons with intellectual disabilities and persons with mental health problems in nine EU Member States, 2012 United Nations Office of the High Commissioner for Human Rights, Europe Regional Office Forgotten Europeans – Forgotten Rights: The Human Rights of Persons Placed in Institutions (‘Forgotten Europeans – Forgotten Rights’), OHCHR 2011 European Coalition for Community Living, Wasted Lives: A Focus Report on how the current use of Structural Funds perpetuates the social exclusion of disabled people in Central and Eastern Europe by failing to support the transition from institutional care to community based services, 2010 European Coalition for Community Living Focus on Article 19 of the UN Convention on the Rights of Persons with Disabilities, 2009 Just Equality: Linking Law to Life 13

14 Camilla Parker Partner, Just Equality Just Equality: Linking Law to Life