Author Archives: charlesomahony

Oireachtas Justice Committee concludes hearings on Capacity legislation

by Eilionoir Flynn

Last month, the Oireachtas Joint Committee on Justice, Defence and Equality last month held its second and final hearing on the proposed Mental Capacity Bill. The hearings focused on proposed amendments to the 2008 Scheme of the Mental Capacity Bill – the only published document to date which gives a concrete outline of what the legislation might look like. The 2008 Scheme has been widely criticised, by the Law Reform Commission, Amnesty International, the Alzheimers Society of Ireland and others, for failing to adequately protect the rights of adults who might become subject to guardianship – and for adopting an inflexible courts-based process for determinations relating to decision-making. ImageOver the course of two hearings on the 22nd and 29th February, the Justice Committee heard a strong message that the thinking on capacity and decision-making, both internationally and nationally, has moved beyond guardianship to focus on enabling people to make their own decisions with support – and even using a support approach to facilitate decision-making where the person’s wishes cannot be determined. A coalition of organisations and individuals across the domains of intellectual disability, mental health, and older people came together to formulate human rights-based principles to underpin the legislation, and a number of these groups made presentations to the Justice Committee.

As I mentioned in a previous post, these hearings coincided with the publication of an issues paper on legal capacity by the Council of Europe Commissioner for Human Rights, Thomas Hammerberg. Lauri Sivonen, advisor to the Commissioner presented the key messages from the issues paper to the Oireachtas Committee at the hearing on the 29th. He stated that “Member States [of the Council of Europe] should also abolish mechanisms for plenary guardianship and full incapacitation in light of the European Court’s jurisprudence and develop supported decision making alternatives and safeguards for these supports.” Mr Sivonen urged Ireland to “take a lead in this field and be an example to other European countries.”

The essence of the proposal set out by the organisations which came together to develop principles for the legislation is that the legislation should address legal capacity i.e. the right to make one’s own decisions as an actor within the law and to have these decisions respected by the law, rather than ‘mental capacity’ which refers more to decision-making ability which varies and fluctuates in each individual. Many organisations involved in the development of these principles support the position as set out in Article 12 of the Convention on the Rights of Persons with Disabilities that legal capacity is a universal human attribute – regardless of the levels of decision-making ability a person may have at any given point in time.

The principles developed by the organisations (including the Centre for Disability Law and Policy at NUIG, Amnesty International, Alzheimers Society of Ireland, Age Action, National Federation of Voluntary Bodies, Shine, Inclusion Ireland, National Institute for Intellectual Disability at TCD) and discussed at the Committee hearings, adopt a continuum of support approach which could be reflected in the capacity legislation. A ‘Continuum of Supports’ model includes three different levels of support: (i) ‘legally independent’ – where a person has the ability to make decisions with only minimal support e.g. easy to read information. (ii) ‘supported decision-making’ – where a person is supported by someone they trust to make a decision, and (iii)‘facilitated decision-making’ – this is used as a last resort where the person’s will and preferences are not known. Here, a representative has to determine what the person would want, based on what they know about that person and on their best understanding of their wishes.

Building on this continuum, many organisations highlighted the need to replace the notion of ‘best interests’ in capacity legislation with ‘will and preferences’ of the person – even in cases of last resort where facilitated decision-making is required. The Centre for Disability Law and Policy also suggested that the legislation should not provide for a front-end assessment of capacity, including functional tests of capacity, on the basis that such tests hold people with disabilities to a higher standard than the rest of the population in terms of ability to make decisions and have decisions respected in law. As an alternative, the Centre suggested that the only valid reason for undertaking an assessment of decision-making capability should be to assess what supports need to be provided – not to restrict the person’s legal right to make decisions.

These proposals were well received by the Committee with the Chair, David Stanton TD concluding at the end of the session that: “Having listened to everyone – in the context of the previous set of hearings in which we engaged – it is obvious that we are concerned with a paradigm shift. The scheme of the Bill was drawn up in 2008 and it appears that there may be a need to tear it up and start again in order that we might get the philosophy right. We have the opportunity now to do this.”

Although the possibility of a third Justice Committee hearing to hear from individual rights-holders affected by the legislation was mooted, it appears that this is now not going ahead. The Committee has recently approached the organisations which made written and oral submissions for permission to publish parts of these submissions in its written report with proposed amendments to the capacity legislation. It is anticipated that this report will be published in the coming weeks and will influence the formation of the draft capacity legislation currently being worked on in the Department of Justice.


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European Disability Forum is Recruiting a Human Rights Officer

The European Disability Forum (EDF) is currently seeking a human rights officer,  The EDF is the European umbrella organisation composed of and led by persons with disabilties, representing the interests of 80 million disabled persons in Europe. ImageThe mission of EDF is to ensure persons with disabilities full access to fundamental and human rights through their active involvement in policy development and implementation in Europe. EDF works closely with the institutions of the European Union (EU), the Council of Europe and the United Nations.  The deadline for applicartions is  6/04/2012.  For more information see here.

EDF is seeking a Human Rights Officer with good knowledge and experience on human rights, non-discrimination, and equality including gender equality issues. The ideal candidate is:

  • committed to a human rights/social model approach to disability
  • understanding and knowledge of the United Nations Convention on the rights of persons with disabilities
  • with a good understanding of working in the political and civil society environment
  • he/she is able to work effectively in English and French and to assimilate and communicate information
  • the knowledge of EU policies, EU institutions and procedures will be an important asset.

Main Duties:

  • All tasks are to be implemented on the basis of decisions adopted by the governing bodies of the EDF, mainly in the areas of theimplementation of the UN Convention on the Rights of Persons with Disabilities, mainstreaming of disability in human rights work at EU level, non-discrimination, women’s rights, and health equality.
  • Monitor developments , policies and actions in relation to disability covering the fields of main responsibility at EU and UN level
  • Alert  the EDF to threats and opportunities for disabled people at EU level: implementation of EU adopted legislation in the area of anti-discrimination and EDF strategy towards further legislation, implementation of equality and anti-discrimination provisions of EU Treaties, the EU Charter of Fundamental Rights, gender equality and health equality
  • Inform  EDF members of the opportunities to engage in international human rights work, including at the level of the UN Treaty bodies and the Human Rights Council
  • Provide  user-friendly information for EDF members on policy and legislative initiatives covering the fields of main responsibility
  • Research  and write briefings and reports on policy and legislative initiatives and programmes
  • Write  regular pieces for the EDF newsletters and other publications
  • Assist in the development of campaigning strategies in the implementation of the UN CRPD, fundamental rights and non-discrimination, and equality for women with disabilities
  • Provide political intelligence and a political overview
  • Provide legal expertise in the area of human rights and non-discrimination
  • Support the preparation of thealternative report of the EDF to the UN CRPD Committee
  • Prepare the written submission on the basis of analysis of work at EU level and EU report, in consultation with EDF members
  • Foster close links and co-operation with members on human rights and non-discrimination matters and to support the advisory group on the UN CRPD as well as the women’s committee
  • To provide support for the agenda setting and documents for the preparation of internal meetings
  • Support EDF in developing contacts with the EU institutions, as well as international human rights bodies and organisations
  • Support EDF work towards the International Disability Alliance, mainstream human rights NGOs and gender equality NGOs
  • Undertake research and provide background briefings and information for members and external organisations on request
  • Provide the required comprehensive and tailored information about EU matters to effectively support EDF members in their work
  • Facilitate EDF members’ involvement in the process of implementation of the CRPD at national level and in reporting to the UN Committee on the rights of persons with disabilities through information and training
  • Assist in the preparation required for EDF meetings and meetings between EDF and external organisations and actors

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European Parliament Recently Hosted International Seminar on Genetic Discrimination

by Aisling de Paor

On 6th March 2012, Marian Harkin MEP and Phil Prendergast MEP hosted a seminar on the topic of Genetic Discrimination. The event was organised by the Centre for Disability Law and Policy, NUI Galway, in conjunction with the European Disability Forum, and took place in the European Parliament, Brussels. This international seminar, which was chaired by Andre Gubbels (Belgian Ministry), was the first of its kind in the European Parliament and brought together a diverse range of leading experts in the area, with the objective of exploring the case for a European level response to protect the privacy of genetic information and to prevent genetic discrimination. The seminar highlighted the interdisciplinary nature of this area and focused on the interaction between genetic science, technology, ethics and the law, and in particular, how best to address this complex area. The event also looked at the challenges and practical problems that arise when attempting to regulate this area, as well as the transatlantic perspectives on the matter.

Speakers included Professor Ciaran Morrison (Centre for Chromosome Biology, School of Natural Sciences, NUI Galway), who illustrated the reality of rapidly advancing genetic science, and the potential of new genetic testing technology.  Professor Yann Joly (Centre of Genomics and Policy, McGill University, Montreal, Canada) outlined the ethical and legal implications arising from the use of genetic information by third parties, exploring the potential for genetic discrimination. Professor Peter Blanck (Burton Blatt Institute, Syracuse University) examined the position in the United States and the Genetic Information Non Discrimination Act 2008, while setting the scene in a historical, sociological and political context. Dr Delia Ferri (Faculty of Law, University of Verona) presented the challenges and possibilities of legislating at European Union level, looking particularly at the privacy and non- discrimination approaches. A roundtable panel composed of Pat Clarke (member of European Disability Forum Executive Committee/ President, Down Syndrome Ireland), Marian Harkin, MEP, Peter Hustinx (European Data Protection Supervisor) and Dima Yared (Office of the High Commissioner for Human Rights) discussed the different perspectives for the way forward.

The Rapporteur’s Report was delivered by Dr Elise Muir (Maastricht University), who reflected upon the emerging consensus that genetic science is advancing at a rapid pace, and is becoming more accessible and more readily available to individuals and third parties. Dr Muir acknowledged that although advancing genetic research offers the potential to revolutionise health care and medical treatment, it could also result in problems and pitfalls with the misuse of sensitive genetic information.  Although a comprehensive European level response is needed in this area, to adequately protect genetic privacy and prevent the discriminatory use of genetic information (and also to avoid a parsimonious approach to the issue), care needs to be taken when considering the nature of the problem and the appropriate way forward.

Professor Gerard Quinn, Director of the Centre for Disability Law and Policy at NUI Galway, stated:

This is the Centre at its best. We exist to inform debate and have impact. Scientific advances are for the benefit of all and we must maintain public confidence.  The best way to do this is to have a European level debate about how to protect people against the abuse of genetic information. Because of this event, a unique partnership between the Centre for Disability Law and Policy and the European Parliament, there is now a genuine European-level debate that should hopefully generate a European-level response in time.”

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