1. Structural Funds, Social Inclusion & the Convention on the Rights of Persons with Disabilities: The role of Structural Funds in promoting the social inclusion of marginalised groups and facilitating the implementation of the UN Convention on the Rights of Persons with Disabilities Camilla Parker Mental Health & Human Rights Consultant Open Society Mental Health Initiative Zagreb, Croatia 24 th October 2013

2. Overview Convention on the Rights of People with Disabilities (CRPD) Institutions – no longer an acceptable form of care Community Living – what it is and why it matters Article 19 of the CRPD Community Living and the European Union (EU) Realising Community Living for All: the role of Structural Funds and the CRPD

3. Convention on the Rights of Persons with Disabilities 1 of 10 core UN human rights treaties Wide range of human rights e.g. respect for home and the family, right to education, right to liberty To ensure recognition of the rights of people with disabilities (equal to others) Ratified by 137 countries (to date) Croatia: August 2007 – CRPD part of national law EU: December 2010 – impact on EU and Member States

4. The Importance of the CRPD “…the underlying philosophy of the UN CRPD is to move decisively away from treating persons with disabilities as ‘objects’ to be managed or otherwise ‘cared’ for towards treating them as equal human ‘subjects’ capable of directing their own lives” (UN Office of the High Commissioner for Human Rights, Getting a Life – living independently and being included in the community, Gerard Quinn and Suzanne Doyle, 2012)

5. The CRPD and the European Union "The [CRPD] promotes and protects the human rights and fundamental freedoms of persons with disabilities......It is our collective responsibility to ensure that people with disabilities do not face additional obstacles in their everyday lives.” (Vice-President Viviane Reding, 5/1/2011)

6. Impact of EU ratification on Member States “to ensure the highest protection for persons with disabilities” Invest Structural Funds in accordance with obligations to combat discrimination and social exclusion.

7. Institutional Care: Historical Perspective “In Europe, residential institutions have been the typical response to the needs of disabled people needing accommodation and assistance with daily living since the early 19 th Century.” “Often established to relieve suffering and with human ideals, institutional care gradually became an instrument of segregation and control, in which poor standards became accepted.” “Following the Second World War, some countries began to move away from large residential institutions…” (Deinstitutionalisation and community living – outcomes and costs, 2007 (“the DECLOC report”))

8. Community Living People with disabilities being able to live in the community as equal citizens, with the support that they need to participate in every day life. Community Living is important for everyone of us… 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

9. Community Living: Why It Matters 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 Hammerberg: “Article 19 of the CRPD embodies a positive philosophy, which is about enabling people to live their lives to their fullest, within society”

10. Article 19 Convention on the Rights of Persons with Disabilities 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 (note: emphasises that it is not just about where the person lives) This includes ensuring that...

11. Community Living Equal opportunity to choose where & with whom to live Access to range of community- support services Equal access to mainstream services (that are responsive to individual needs)

12. Community Living & the EU: Europe 2020 5 targets (employment, R&D, climate and energy sustainability, education & fighting poverty & social exclusion) Structural Funds: assist Member States meet targets Structural Funds regulations: thematic objective: “Promoting social inclusion and combating poverty” European Commission: position paper for Croatia on funding priorities and objectives: “support the transition from institutional care to community-based care for children, elderly, and other vulnerable groups; ensure further training and career development opportunities of staff working in care services”

13. Community Living : A right for All Article 19 CRPD: equal right of disabled people to live in the community with choices equal to others Supported by pre-existing standards e.g. Article 26 EU Charter (integration of persons with disabilities) Underpins policy objectives of social inclusion (European Commission, Council of Europe and national governments) Institutionalisation (= isolation & segregation) irreconcilable with community living

14. What are the barriers to community living? Some examples... Guardianship – no recognition that can make own decisions, guardian decides No alternatives/no information Equal choice on living arrangements? Lack of services, Legal/financial framework prohibits NGOs from providing services Access to community services? Not accessible to people with disabilities Use by people with disabilities prohibited Equal access to mainstream services?

15. Community Living & Deinstitutionalisation: Misconceptions Promotes independence NOT isolation: people to be given support so they can participate in community life Not just about the physical environment - essential to avoid developing “mini- institutions”: 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”? Progressive realisation and Article 19: no excuse for inaction, Structural Funds provide resources

16. Structural Funds, the CRPD & Community Living Structural Funds can fund: Development of new services, including the provision of education and training of staff and Provision of technical support for areas such as reforming the legislative and financial frameworks needed to facilitate community based services CRPD provides a framework for this work

17. CRPD: A Framework for Action (1) Commitment: To take action to ensure that people with disabilities in reality have the equal right to live in the community with choices equal to others. Vision: Range of services needed to make this happen Action: Clarity on what needs to be done to realise this vision (e.g. needs assessment, review of law & policies) Progress: States required to take effective measures, “progressive realisation” not an excuse for doing nothing Clear action plans, with timeframes and benchmarks Monitor and review regularly

18. CRPD: A Framework for Action (2) Participation: Involve the wide range of individuals and organisations with an interest in community living, including people with disabilities & their families (Art 4(3)) Avoid: Points that lead to misuse of Structural Funds: vague definitions e.g. need ensure that funding is provided to services that are truly community based and support inclusion investing Structural Funds in institutions: a) ties up money in an outmoded form of care and b) the 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)

19. Conclusion “Community living for all will not be achieved overnight. It requires a deliberate process of transition. This transition from residential care to community living is not only desirable – it is now a clear legal obligation undertaken by the Member States and the European Union under Article 19 of the [CRPD].” (Quinn and Doyle, 2012)

20. Further Information 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, Open Society Foundations, May 2012. Available at: http://www.soros.org/initiatives/health/focus/mhi/articles_publications/pu blications/european-union-disabilities-20120507/europe-community- living-20120507.pdf http://www.soros.org/initiatives/health/focus/mhi/articles_publications/pu blications/european-union-disabilities-20120507/europe-community- living-20120507.pdf Common European Guidelines on the Transition from Institutional to Community-based Care Guidance on implementing and supporting a sustained transition from institutional care to family-based and community-based alternatives for children, persons with disabilities, persons with mental health problems and older persons in Europe, November 2012 Toolkit on the Use of European Union Funds for the Transition from Institutional to Community-based Care, November 2012 Both available at: www.enil.eu/recommended-readings- 2/european-expert-group-on-the-transition-from-institutional- to-community-based-care-guidelines-and-toolkit/www.enil.eu/recommended-readings- 2/european-expert-group-on-the-transition-from-institutional- to-community-based-care-guidelines-and-toolkit/