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 memberCommunity support service providerB.A. in SociologyJ.D. in Law

Barred to practice in New YorkMarie Curie Research Fellow

Disability 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 skillsLegal Capacity = holder of rights and actor

under the lawTraditional capacity regimes

Functional approachMental Capacity Act 2005 (England and Wales)

Status approachWard of Court (Ireland)

Outcome approachMental 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” paradigmSupported 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 otherDevelop healthy habits

Dialogue about what is healthyPortion sizesCaloriesEating out

Responsibility Forgive each other

ExerciseHave fun!Develop healthy habits

Dialogue about exercise and healthBuilding strength Being safe

ResponsibilityHave fun!

Community LifeListen!TrustLean on othersBuild circle of support

Its not always easyConflict is OK – its part of the processEveryday is a new dayLet go and have fun togetherTrust 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!