Cautionary Tales

by Mary de Paor

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Inclusion Ireland’s Annual Parents’ Seminar was held at the Radisson SAS Hotel in Athlone on Saturday, 3 November 2007. During the morning session speakers sought to unravel aspects of ‘supported decision making’—from philosophical to legal. Guest speaker Michael Bach, who is Vice President of the Canadian Association for Community Living (and was formerly Director of Research of the esteemed Roeher Institute), argued that respecting their personhood, people with intellectual disabilities should be assisted/supported in making their life decisions, rather than being provided with substitute guardians (or even wardship of court committees).

Article 12 of the UN Convention on the Rights of Persons with Disabilities—adopted in 2006 by all EU countries, but not yet ratified into Irish law—states that:
◆ Persons with disabilities have the right to recognition everywhere as persons
before the law.
◆ Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all
aspects of life.
◆ Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. (Further detail available in Article 12)

Michael Bach explained how such measures indeed can be introduced—instancing the Canadian province of British Columbia which now has laws which recognise and provide monitoring, funding and advisory mechanisms for such support groups (e.g. circles of friends). Máirín McCartney’s paper brought the question of legal capacity and decision making back to the Irish context. She pointed out the lack of legal protection for persons (families or care services) currently making decisions for adults with intellectual disability. She summarised the Law Reform Commission’s 2006 Report on Vulnerable Adults and the Law, which recognises the philosophical shift in policy toward an emphasis on autonomy, capacity and empowerment, and the fact that individuals may have the capacity to make some decisions, but not others. The Commission also produced a draft Mental Capacity and Guardianship Bill 2007 (which fell with the dissolution of the last Dáil). Although acceptable in many respects, Máirín recommended that the proposed bill should be amended to reflect Article 12 of the UN Convention—and to include the provision for supported decision making.

In conclusion, Máirín said: ‘New legislation is long overdue, particularly in view of the fact that the Wardship Act dates back 130 years. Any new legislation should underpin and support the right to self-determination, the right to participate and the right to make choices. In the light of …UN Convention, the emphasis in new legislation should be on the presumption of legal capacity and supported decision-making. Substitute decision-making and guardianship should be the exception, but in my view it will still be necessary … in very restricted cases and under very stringent guidelines. The answer to the question ‘who decides and how’ is clearer, but is still evolving.

Whew, after the morning’s very careful, thoughtprovoking and valuable presentations, we were ready for the excellent buffet lunch provided by the hotel, and the chance to unwind a bit—before returning to the daunting topic of long-stay (health) charges. Walter Freyne, Director of the Daughters of Charity Services and representing the National Federation of Voluntary Bodies, opened the discussion by presenting the NFVB’s view that new legislation is needed to clarify entitlements and charges for people with intellectual disabilities, who were unfairly included in the ‘nursing homes’ context of the 2005 legislation. He pointed out that service providers are experiencing loss of income and considerable confusion because of the inequities of the present regulations.

Kevin Doyle, Chairperson of the Inclusion Ireland Parents’ Committee, spoke about how the charges are negatively affecting his family. Other parents told stories of the new charges regulations causing confusion and upset amongst people who use services and their families.
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at Marron and Bernard Haddigan of the Health Services Executive bravely attempted to explain the Long-Stay charges regulations and the administration of the Repayment Scheme. I admire them for their efforts, even to providing a roadcaster information service. But to this listener, it all remains an unintelligible quagmire. My summary, I’m afraid, inadequately reflects the excellent Parents’ Seminar and the great work that Inclusion Ireland staff, and the Parents’ Committee, put into organising it. I recommend that Frontline readers go to the Inclusion Ireland extensive website (www.inclusionireland.ie) where you can download the seminar papers and read them at your leisure. You will also find Inclusion Ireland’s clear-as-possible explanation and position paper on the long-stay charges, as well as the text of the UN Convention on the Rights of Persons with Disabilities.

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