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 disabilities enjoy 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 Ensure adequate safeguards 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 Preferences for support?
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 Forgive each other
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

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!