Change and Voluntary Disability Organisations DFI Conference, 23 May, International Regional National International Regional National A Positive Symmetry – Gerard Quinn 1

The International Impulse….. United Nations Convention on the Rights of persons with Disabilities (2006). United Nations Convention on the Rights of persons with Disabilities (2006). Ireland has signed…with legal implications Ireland is set to ratify in 2012…with legal implications Ireland becomes answerable to the Int community Carrier of a moral vision – a new paradigm. Driver of Policy Forces a Re-imagination of the Welfare State and its relationship to PWD 2

Major Premise – the move from ‘object’ to ‘subject’ Equal Effective Enjoyment of Existing Rights Major Premise – the move from ‘object’ to ‘subject’ Equal Effective Enjoyment of Existing Rights Core Rights – Getting a LIfe --- Voice, Choice, Chance to make your own life – Article Auto-nomy – you choose how you live – Independent Living & Being Included in the Community --- Participation – systematic removal of barriers…. --- Support – a re-imagining of the function of economic, social and cultural rights and Supports. From part of the problem to part of the solution. Burning Off Paternalism Art 16 – protection against violence, exploitation & abuse ‘on an equal basis with others’ ‘Duty to protect’ put back in its box…. Progressive Achievement Tangible steps & dynamic of change 3

Voice, Choice & Chance…. UN CRPD gives Positive answers to these questions Voice, Choice & Chance…. UN CRPD gives Positive answers to these questions What does it mean to be a ‘subject’ – a person? Is cognition key to personhood? Do ‘will & preferences’ exist in all people – do we all dream? Is personhood shared? What naturally occurring supports augment our capacity to navigate life? 4

The Art 12 Paradigm….. An assumption of capacity…breaking the link with policy based on deficits. This applies in ‘all spheres of life.’ An assumption that re-connecting people with naturally occurring supports will augment a sense of personhood, capacity and self-direction. NOTE: this is not about services In a traditional sense. Protect people but not by withdrawing their right to choose. Spatial Image of Bridges – connecting people, growing capacity, revealing ‘will and preferences.’ New problematics –when do we know the supports are subverting or sculpting the will & preference But a different set of problematics relative to guardianship. See Oirieachtas Justice Committee Report Bill due in May/June. 5

Article 19 Application – the right to live independently and be included in the Community Note the conjunction of Independence and Community The Core Frame of 19 Art 19 is NOT primarily about place – bricks & mortar Its about a new posture of the person toward the community Which can only happen if the place is in – connected with – the community Its about identity, personhood and flourishing. The Core Frame of 19 Art 19 is NOT primarily about place – bricks & mortar Its about a new posture of the person toward the community Which can only happen if the place is in – connected with – the community Its about identity, personhood and flourishing. 6

“It’s not only other people who hold us in our identities. Familiar places and things, beloved object, pets, cherished rituals, one’s own bed or favourite shirt, can and do help us maintain our sense of self. And it is no accident that much of this kind of holding goes on in the place where our families are: at home. The home...is an extension and mirror of the living body in its everyday activity and is thus a materialization of identity...our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are.” Quoted from Hilde Lindeman, ‘Holding One Another’ in Eva Feder Kittay & Licia Carlson (Eds.), Cognitive Disability and the Challenge to Moral Philosophy, (Wiley Blackwell 2010) at

19.a a right to chose where and with whom to live…… Read it with Art 8 – nurturing receptiveness to persons with disabilities and their rights. Choice & size. Opening Narrative – equal right to live in the community. Stresses civic engagement. ‘with choices equal to others”…. “the point about Art 19 is to enable persons with disabilities to have a realistic Prospect of flourishing in the community by affording a home that reflects one’s Personal choices and allows for the development of personhood” 8

19.b. Making it happen – personalised services to enable independence & Inclusion 19.c. Embedding Inclusion – Expanding Community Services to be Inclusive of Persons with Disabilities. 19.c. Embedding Inclusion – Expanding Community Services to be Inclusive of Persons with Disabilities. Traditional welfare model needs=services=delivered through proxies of needs Art 19 mandates the personalisation of services. But not services as we know them – services that build bridges into the community Progress on 19a and 19.b can be held back unless community services opened up. Decant resources from specialised institutions Calls for creative mix of personalised services and community services. 9

The Regional European Dimension Nudge & Support. EU has ratified the UN CRPD – increasingly a driver of EU policy Overall EU Priority EU 2020 Strategy – toward a ‘smart, sustainable and inclusive economy & society (2010-) Overall EU Priority EU 2020 Strategy – toward a ‘smart, sustainable and inclusive economy & society (2010-) Contains several Flagship initiatives including Flagship against Poverty “design and implement programmes to promote social innovation for the most Vulnerable…. 10

EU Disability Strategy …A Vehicle for UN CRPD in the EU “promote the transition from institutional to community based-care by using Structural Funds to support the development of community-based services… Achieve the transition…by using financial instrument…for training human resources And adapting social infrastructure, developing personal assistance funding schemes… 11

New EU Structural Funds regulations under consideration……to be concluded Under Irish Presidency New EU Structural Funds regulations under consideration……to be concluded Under Irish Presidency Draft Common Regulation Ex ante conditionality….active inclusion – integration Of marginalised communities… Requires measures for the shift from residential to community care facilities. Draft Social Funds Regulation ESF should also support fulfillment of UN CRPD including transition from institutional To community care Art 9 – ‘testing and scaling up of innovative solutions To address social needs’ Draft Eur Regional Dev Fund Investment priority in …social infrastructure…and Transition from institutional to community-based Services Social enterprise a prioirty 12

EU Programme for Social Change & Innovation 95 million for social innovation & experimentation that can be scaled up HORIZON 2020 – to replace EU Framework 7 Research Programme Major emphasis on grand social change, transformation of the welfare state, Non-cohort specific, lifecourse perspectives. Need for new innovation understood – learning from innovation needed. HORIZON 2020 – to replace EU Framework 7 Research Programme Major emphasis on grand social change, transformation of the welfare state, Non-cohort specific, lifecourse perspectives. Need for new innovation understood – learning from innovation needed. 13

Ireland…… Personhood - Voice, Choice, Power Growing & Sharing Personhood Social Connectedness Bridges to the Lifeworld New ‘Services’….. Augment Grow Personhood Bridges to social Connectedness Bridges to the Lifeworld By definition personalised With flexible funding/ accountability model This is where social Innovation kicks in ‘We need to get away from the language of needs and services’, President Michael D Higgins. 14

I’m afraid you’ve just had a Paradigm Shift….. 15