Supporting Citizenship – The Future of Services for Persons with Disabilities in Ireland: Some Reflections on the Impact of the UN Convention on the R ights of Persons with Disabilities Gerard Quinn Centre for Disability Law and Policy, NUI Galway

1. Backdrop to the CRPD 2. Overview of the Rights 3. Focus on the Rights Relevant to Personal Services 4. Implications for Services.

- Clean break between disability and deficits…… -No ‘New Rights’ – Just Equal Enjoyment of all rights. -Effects a Paradigm Shift – From Object to Subject. -Blows away cobwebs of paternalism – general rejection of ‘best interests’ standard -Sets a Floor – not a ceiling – calls for innovation. -All Rights Interdependent/Interactive (e.g., 19 – 12). -ESCR rights re-engineered. -State still has a protective role – but shorn of paternalism (Art 16). - Clean break between disability and deficits…… -No ‘New Rights’ – Just Equal Enjoyment of all rights. -Effects a Paradigm Shift – From Object to Subject. -Blows away cobwebs of paternalism – general rejection of ‘best interests’ standard -Sets a Floor – not a ceiling – calls for innovation. -All Rights Interdependent/Interactive (e.g., 19 – 12). -ESCR rights re-engineered. -State still has a protective role – but shorn of paternalism (Art 16). 1. Backdrop to the the UN CRPD

4 2. Overview of the Rights…. Protecting the Person Rt to Life – 10 Freedom agaist Torture – 15 Freedom from Violence, Exploitation And abuse – 16 Protect Integrity Of the person 17 Autonomy Self-Determination Legal Capacity 12 Living Independently & Included in Community, 19 Rehab 26 Expression 21 Privacy 22 Family 23 Access & Participation Accessibilty 9 Political 29 Cultural 30 Justice 13 Liberty Liberty 14 Nationality 18 Per Mobilil 20 Solidarity… Education 24, Health 26, Adeq Std of Living 28, Work, 27

12 6PP x Assumption of Legal Capacity to Make On Decisions & have them Respected Assumption of Legal Capacity to Make On Decisions & have them Respected Transversal Right: Women with Disabilities Transversal Right: Children with Disabilities Transversal Right: Children with Disabilities Right to Living Independently and Being included in the Community Right to Living Independently and Being included in the Community Active consultation and involvement In decision-making processes Active consultation and involvement In decision-making processes Families Right to Support 3. CRPD Provisions relevant to Services

6 Art 12 - Old & New Approach NOW – decision making fragility Response: Guardian to take decisions Response: Guardian to take decisions New Approach ASSUMPTION of Legal Capacity Art 12 Obligation is to SUPPORT in Exercising Legal Capacity Not just supported decision-making at one extreme SUPPORT means augmenting residual capacity Support means building capacity SUPPORT can mean connecting with social capital/community Widening opportunity to share personhood and grow SUPPORT can mean support in making decisions ASSUMPTION of Legal Capacity Art 12 Obligation is to SUPPORT in Exercising Legal Capacity Not just supported decision-making at one extreme SUPPORT means augmenting residual capacity Support means building capacity SUPPORT can mean connecting with social capital/community Widening opportunity to share personhood and grow SUPPORT can mean support in making decisions Centering People With Natural Supports

Article 19 Living independently and being included in the community States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that: (a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement; Article 19 Living independently and being included in the community States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that: (a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement; Not Just Bricks & Mortar Not beholden to one model Of Independent Living Not beholden to one model Of Independent Living Very Basic Right to Choose… Home is the ‘materialisation of Identity’ Very Basic Right to Choose… Home is the ‘materialisation of Identity’

(b)Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; (c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs. (b)Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; (c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs. Services never serve just needs Connected to higher goal to achieve Community engagement With clear implications for congregated settings And clear implications for service design that may have the effect of isolating Services never serve just needs Connected to higher goal to achieve Community engagement With clear implications for congregated settings And clear implications for service design that may have the effect of isolating

Art 6 Women Art 7 Children PP X Family Acknowledges Women & girls subject to multiple discrimination Obligation with respect to development, advancement and empowerment of women and girls Evolving Capacities… Full enjoyment of rights on an equal basis with other children Retains ‘best interests’ principle of CRC (but CRC is changing) Rt to express views and to assistance to do this Centering the Child in Services The Transversal Provisions

4.3 Nothing about us without us……. In decision making processes… States shall consult and actively involve…pwd Children and their representative organisations 4.3 Nothing about us without us……. In decision making processes… States shall consult and actively involve…pwd Children and their representative organisations Applies whether States responsibilities are devolved to service providers or not

4. Implications for Services An insistent focus on human flourishing – not on deficits. A Profound re-centering of the person and Child in all processes affecting him/her A right to say ‘NO’ – Person Driven, not person centered service design A Profound re-centering of the person and Child in all processes affecting him/her A right to say ‘NO’ – Person Driven, not person centered service design A focus more on ‘life plans’ and less on needs and services Restoring power to the consumer – with independent mechamisms of accountability A Joined up Lifecoure perspective on the design of services – pathways to adulthod. Families as a positive Part of the Picture – as well as other social capital