Restoring Voice to People
Exploring the Right to Legal Capacity and Supported Decision-
Making
Prader-Willi Syndrome Association Ireland (PWSAI)
ConferenceDublin, IrelandApril 19, 2013
Anna Arstein-KerslakeCentre for Disability Law and PolicyNational University of Ireland, Galway
Anna Arstein-Kerslake, Esq.
Family member
Community support service provider
B.A. in Sociology
J.D. in LawBarred to practice in New York
Marie Curie Research FellowDisability Rights Expanding Accessible Markets
(DREAM)
Today’s PresentationHuman Rights Protections
Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD)The right to legal capacityThe right to support for exercising legal capacity
Supported Decision-Making in Practice
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
Mental Capacity vs. Legal Capacity
Mental Capacity = decision-making skills
Legal Capacity = holder of rights and actor under the law
Traditional capacity regimesFunctional approach
Mental Capacity Act 2005 (England and Wales)Status approach
Ward of Court (Ireland)Outcome approach
Mental Health Law
Human RightsUnited Nations Convention on the Rights of
Persons with Disabilities (CRPD)
Article 12 – the Right to Equal Recognition Right to Legal CapacityRight to Supported Decision-Making
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.
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.
CRPD, Article 12 Requirements of Article 12
NO denials of legal capacity (“Universal Legal Capacity”)
REPLACE substituted decision making with supported decision makingSubstituted decision making =
“Best Interest” paradigm
Supported decision making = “Will and Preference” paradigm
Ensure adequate safeguards
Support ParadigmEveryone 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
Support ParadigmSupport for Exercising Legal Capacity
Support for interactions and potential interactions with the legal systemE.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.
Support for Exercising Legal Capacity
Access to informal supportsAccessible informationAccessible buildings Support circles
Formal supported decision making arrangementsRepresentation agreementsSupported decision-making personnel
Facilitated decision making (last resort)Will and preference cannot be determined Imagined will and preference / sole benefit
New Irish Capacity Legislation
Heads of Bill (2008)
NUIG campaigning with Amnesty Ireland for CRPD compliant legislationUpcoming 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
Supported Decision-Making Generally and Prader-Willi
Providing SupportMeet the individual “where s/he is”
No preconceived notionsBe patient Listen!
“I make good decisions!”Trust each other
Empower each other
Listen Hopes and desires
Lifestyle choices Where to live Who to live with Friends Family Work Education
Preferences for support? Who? How? When?
NutritionTrust each other
Develop healthy habitsDialogue about what is healthy
Portion sizesCaloriesEating out
Responsibility
Forgive each other
ExerciseHave fun!
Develop healthy habitsDialogue about exercise and health
Building strength Being safe
Responsibility
Have fun!
Community LifeListen!
Trust
Lean on others
Build circle of support
Its not always easyConflict is OK – its part of the process
Everyday is a new day
Let go and have fun together
Trust each other
ConclusionHuman 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!