CONFERENCE ON MENTAL CAPACITY Thursday 5 th February 2009

1. CONFERENCE ON MENTAL CAPACITY Thursday 5th February 2009 Presentation by Deirdre Carroll CEO INCLUSION IRELAND National Association for People with an Intellectual Disability

2. Scheme of Mental Capacity Bill 2008, and Article 12 of the UN Convention on the Rights of Persons with Disabilities: QUESTIONS AND CHALLENGES

3. RELEVANT PUBLICATIONS: • Law Reform Commission, Law and the Elderly, 2003 • Inclusion Ireland, Who Decides and How? People with Intellectual • Disabilities - Legal Capacity and Decision Making, 2004 • Law Reform Commission, Vulnerable Adults and the Law: Capacity, 2005 • Law Reform Commission, Report: Vulnerable Adults and the Law 2006 • UN Convention on the Rights of Persons with Disabilities 2007

4. WHY WE NEED REFORM • Complete absence of guidance in how to assess capacity for those unable to make decisions, or unable to communicate decisions, resulting in: • Decisions that need to be made not taken; • Decisions taken that may infringe a person’s rights; • Parents, carers, service providers have no legal authority to take necessary decisions on behalf of adults with disabilities; • Day to day living decisions get made on an informal basis – usually appropriate; • More complex decisions involving money, property, major medical • treatment, sexual relationships - usually problems

5. EXAMPLES OF DIFFICULTIES • Adults with disabilities caught between warring family factions; • Separated parent gaining visitation rights against wishes of adult son; • Consent for medical procedures; • Women with intellectual disability having children placed in foster care – • no right to adoption; • Parents prevented from seeking refunds on illegal nursing home charges • on behalf of adult children; • Agency agreements for Disability Allowance without assessment of • capacity; • Service providers/professionals feel they have no right to inform family • about decisions taken • Can lead to PWID being made Wards of Court • Very difficult and costly to appeal

6. NEW MENTAL CAPACITY SCHEME 2008 • Welcome new scheme and consultation; • Terminology - should be called Legal Capacity Scheme; • Terms such as care, protection, best interest, guardianship paternalistic; • Terminology at variance with UN Convention;

7. For centuries PWID have had their rights to self-determination systematically • abolished by others • People with significant disabilities do not meet the criteriaused for • assessing capacity • Understand nature and consequences of their acts, and can actvoluntarily • Can communicate their decisions: • This leads to Guardianship arrangements, powers of attorney/advance directives, legal friends or mentors

8. UN CONVENTION • Brings such laws and practises into question • Under International Law even people with significant disabilities have a right • to support in decision making • Accessing needed support now recognised at the heart of exercising one’s • right to self determination and to be recognised as full citizens before the • law

9. ARTICLE 12: • States Parties… • Reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law; • Shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life; • Shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity; • Shall ensure that all measures that relate to the exercise of legal • capacity provide for appropriate and effective safeguards • ARTICLE 12 • implies a range of supports to assist people in exercising legal capacity; • challenge for people with significant difficulties; • raises profound questions for legal and social policy;

10. SUPPORTED DECISION MAKING - WHAT IS IT? • “An individual’s full legal capacity is fully recognised if they can demonstrate to others their will and intent, and if not, if their ‘personhood’ can be articulated by others designated as sufficiently knowledgeable to understand a person’s unique communication forms and life history. Competency is attached to the decision making process, and not to the person, thus circumventing some of the issues associated with ‘autonomous’ decision making, where it is the person’s intellectual and communicational abilities which are assessed as capable or not.” • Michael Bach Canadian Association for Community Living • “ It is not people who are competent, it is decisions that are competent. There is no such thing as being existentially competent. Once you can have decision-making capacity over anything, the competence is related to the decisions.” • Professor of Bioethics at the University of Manchester, John Harris

19. OMISSIONS IN NEW SCHEME • Does not apply to such things as marriage, divorce, adoption, sexual • relations or acting as a member of a jury • Failure to address marriage and sexual relations abandons people with • an intellectual disability to an ongoing vulnerability in regard to section 5 of • the Criminal Law (Sexual Offences) Act 1993 • Wards of Courts and who are involuntarily detained in a psychiatric • hospital or other approved centre are not covered by the Mental Health Act • 2001 - no right to a Mental Health Tribunal

20. Thank you

21. INCLUSION IRELAND Unit C2 the Steelworks, Foley St., Dublin 1 01-8559891 info@inclusionireland.ie www.inclusionireland.ie