Restoring Voice to People

1. Restoring Voice to People Exploring the Right to Legal Capacity and Supported Decision-Making Prader-Willi Syndrome Association Ireland (PWSAI) Conference Dublin, Ireland April 19, 2013

2. Anna Arstein-Kerslake Centre for Disability Law and Policy National University of Ireland, Galway

3. Anna Arstein-Kerslake, Esq. • Family member • Community support service provider • B.A. in Sociology • J.D. in Law • Barred to practice in New York • Marie Curie Research Fellow • Disability Rights Expanding Accessible Markets (DREAM)

4. Today’s Presentation • Human Rights Protections • Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) • The right to legal capacity • The right to support for exercising legal capacity • Supported Decision-Making in Practice

5. Legal Capacity Law: Legislating Personhood • Legal capacity = the law recognizing an individual as a decision-maker • What is legal capacity? • Definition: • Capacity to act(enter into K, marriage, vote, etc.) • Capacity to be a holder of rights

6. Mental Capacity vs. Legal Capacity • Mental Capacity = decision-making skills • Legal Capacity = holder of rights and actor under the law • Traditional capacity regimes • Functional approach • Mental Capacity Act 2005 (England and Wales) • Status approach • Ward of Court (Ireland) • Outcome approach • Mental Health Law

7. Human Rights • United Nations Convention on the Rights of Persons with Disabilities (CRPD) • Article 12 – the Right to Equal Recognition • Right to Legal Capacity • Right to Supported Decision-Making

8. CRPD, Article 12(1-3) • 1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law. • 2. States Parties shall recognize that persons with disabilitiesenjoy legal capacity on an equal basis with others in all aspects of life. • 3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

9. CRPD, Article 12(4) • 4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person's rights and interests.

10. CRPD, Article 12 • Requirements of Article 12 • NO denials of legal capacity (“Universal Legal Capacity”) • REPLACE substituted decision making with supported decision making • Substituted decision making = • “Best Interest” paradigm • Supported decision making = • “Will and Preference” paradigm • Ensure adequate safeguards

11. Support Paradigm • Everyone is presumed to be legally independent and no one can be forced into a supported or representative arrangement • Every individual is supported through enabling conditions to exercise his/her legal capacity

12. Support Paradigm • Support for Exercising Legal Capacity • Support for interactions and potential interactions with the legal system • E.g. voting, entering into contracts, financial transactions, access to justice, etc. • Supported Decision-Making Generally • Often interacts with support for exercising legal capacity • E.g. support for making healthy decisions so your mind and body are healthy for other kinds of decision-making • E.g. sex education and capacity to consent to sex • E.g. Daily living decision-making, sex education, support in employment, support in education, etc.

13. Support for Exercising Legal Capacity • Access to informal supports • Accessible information • Accessible buildings • Support circles • Formal supported decision making arrangements • Representation agreements • Supported decision-making personnel • Facilitated decision making (last resort) • Will and preference cannot be determined • Imagined will and preference / sole benefit

14. New Irish Capacity Legislation • Heads of Bill (2008) • NUIG campaigning with Amnesty Ireland for CRPD compliant legislation • Upcoming conference on April 29, 2013 • Supported decision-making in theory & practice: Ireland’s capacity bill • Hopeful that the new draft will include supported decision-making mechanisms

15. Supported Decision-Making Generally and Prader-Willi

16. Providing Support • Meet the individual “where s/he is” • No preconceived notions • Be patient • Listen! • “I make good decisions!” • Trust each other • Empower each other

17. Listen • Hopes and desires • Lifestyle choices • Where to live • Who to live with • Friends • Family • Work • Education • Preferences for support? • Who? • How? • When?

18. Nutrition • Trust each other • Develop healthy habits • Dialogue about what is healthy • Portion sizes • Calories • Eating out • Responsibility • Forgive each other

19. Exercise • Have fun! • Develop healthy habits • Dialogue about exercise and health • Building strength • Being safe • Responsibility • Have fun!

20. Community Life • Listen! • Trust • Lean on others • Build circle of support

21. Its not always easy • Conflict is OK – its part of the process • Everyday is a new day • Let go and have fun together • Trust each other

22. Conclusion • Human rights norms require: • Respecting the right to be recognized as a person before the law and the right to exercise legal capacity • Fulfilling the right to support in exercising legal capacity • Listening and empowering • New support paradigm may be formalized in the new capacity legislation, but informally we can all do it!