Presentation on theme: "Restoring Voice to People"— Presentation transcript:
1 Restoring Voice to People Exploring the Right to Legal Capacity and Supported Decision-MakingPrader-Willi Syndrome Association Ireland (PWSAI) ConferenceDublin, IrelandApril 19, 2013
2 Anna Arstein-Kerslake Centre for Disability Law and PolicyNational University of Ireland, Galway
3 Anna Arstein-Kerslake, Esq. Family memberCommunity support service providerB.A. in SociologyJ.D. in LawBarred to practice in New YorkMarie Curie Research FellowDisability 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 capacityThe right to support for exercising legal capacitySupported Decision-Making in Practice
5 Legal Capacity Law: Legislating Personhood Legal capacity = the law recognizing an individual as a decision-makerWhat 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 skillsLegal Capacity = holder of rights and actor under the lawTraditional capacity regimesFunctional approachMental Capacity Act 2005 (England and Wales)Status approachWard of Court (Ireland)Outcome approachMental Health Law
7 Human RightsUnited Nations Convention on the Rights of Persons with Disabilities (CRPD)Article 12 – the Right to Equal RecognitionRight to Legal CapacityRight 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 makingSubstituted decision making =“Best Interest” paradigmSupported decision making =“Will and Preference” paradigmEnsure adequate safeguards
11 Support ParadigmEveryone is presumed to be legally independent and no one can be forced into a supported or representative arrangementEvery 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 systemE.g. voting, entering into contracts, financial transactions, access to justice, etc.Supported Decision-Making GenerallyOften interacts with support for exercising legal capacityE.g. support for making healthy decisions so your mind and body are healthy for other kinds of decision-makingE.g. sex education and capacity to consent to sexE.g. Daily living decision-making, sex education, support in employment, support in education, etc.
13 Support for Exercising Legal Capacity Access to informal supportsAccessible informationAccessible buildingsSupport circlesFormal supported decision making arrangementsRepresentation agreementsSupported decision-making personnelFacilitated decision making (last resort)Will and preference cannot be determinedImagined will and preference / sole benefit
14 New Irish Capacity Legislation Heads of Bill (2008)NUIG campaigning with Amnesty Ireland for CRPD compliant legislationUpcoming conference on April 29, 2013Supported decision-making in theory & practice: Ireland’s capacity billHopeful 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 notionsBe patientListen!“I make good decisions!”Trust each otherEmpower each other
17 Listen Hopes and desires Lifestyle choices Preferences for support? Where to liveWho to live withFriendsFamilyWorkEducationPreferences for support?Who?How?When?
18 Nutrition Trust each other Develop healthy habits Forgive each other Dialogue about what is healthyPortion sizesCaloriesEating outResponsibilityForgive each other
19 Exercise Have fun! Develop healthy habits Dialogue about exercise and healthBuilding strengthBeing safeResponsibility
20 Community LifeListen!TrustLean on othersBuild circle of support
21 Its not always easy Conflict is OK – its part of the process Everyday is a new dayLet go and have fun togetherTrust 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 capacityFulfilling the right to support in exercising legal capacityListening and empoweringNew support paradigm may be formalized in the new capacity legislation, but informally we can all do it!