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Gold Medal in Galway

We are delighted to welcome this post from Elizabeth Kamundia recipient of the Gold Medal for finishing top of her class on the LL.M in International and Comparative Disability Law at the Centre for Disability Law and Policy, NUI Galway.

In 2005, while I was studying for my law degree, I started learning Kenyan Sign language – just for fun. At that time, I knew little about human rights as they apply to people with disabilities – and certainly had no inkling that I would end up specialising in that very area.

Often, my family and friends would ask me what possible use sign language was to a lawyer. I’d say, “I might someday have a Deaf client” – since I assumed that I would become a practicing advocate and saw that as the only way that I would ever combine my sign language and legal skills. How wrong I was!

Six years later, I was working as the Human Rights Officer on Disability at the Kenya National Commission on Human Rights (KNCHR). I had found a way to merge my legal training with my growing interest in disability rights. But while I found the work at KNCHR thoroughly engaging, I also felt that I was only scratching the surface – that there was so much more to human rights as they apply to people with disabilities than I was aware of at the time.

I started wondering whether there were studies in disability within the realm of law that I could pursue. Google searches mainly yielded disability studies within education, health and social work. And so I was delighted to discover that the Centre for Disability Law and Policy (CDLP) of the National University of Ireland, Galway was offering a Masters in International and Comparative Disability Law and Policy.

And absolutely thrilled to be awarded a scholarship by the Open Society Foundations (OSF) to undertake the course.

At that point, I had never lived apart from my family, and so a year away was both appealing and also a little frightening! But I need not have worried. The Centre is a wonderful place in which to study with a real student-centred approach and extremely supportive lecturers. And it’s a real community. And so alive – with visiting researchers from other countries ensuring that it stays amazingly vibrant all year round.

The LL.M class drew together a diverse range of people – barristers, relatives of people with disabilities and service providers among others. The classes were so interactive and practical, including one memorable occasion when a parent of a child with autism came and shared stories about her struggle to ensure that her child received an education.

We also held debates on various topics, such as what the paradigm shift in Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) on legal capacity means at a practical level. On other occasions, we had the opportunity to hold Skype conversations with various key actors on disability around the world including Shuaib Chalklen, the UN Special Rappoteur on Disability and Ron McCallum, the Chairperson of the CRPD Committee.

An interesting – and challenging – aspect of studying at the Centre was knowing that I (and the other two OSF-supported scholars from Africa) was expected to be the ‘Voice of Africa’. And it kept me on my toes – and also encouraged me to filter the theories through the realities of life in Kenya as I know it, to begin to see how they could make a difference in people’s lives thousands of miles away from Galway.  And this was another reason why it was so wonderful to have other OSF scholars from Africa – so that we could sit together after class and wonder how we could make the concepts we were learning applicable back home. Indeed, some of the ideas such as personalised budgets as a way of actualising Article 19 of the CRPD on living independently in the community seemed way out there to us. Indeed, that was partly why I decided to write my dissertation on Article 19 since I wanted to understand how to make it practical in an African context.Image

It is also why I decided to conduct interviews for the dissertation even though this was not a requirement. I felt that I could benefit greatly from asking people on the ground in Kenya about their ideas on how persons with disabilities could be able to live independently in the community. It was the best decision I could have made. The interviews taught me so much – providing me with priceless information and insights.

 

And the key thing I learned is that open societies have to be inclusive societies. A society that has people living on the margins, concealed, or locked up cannot claim to be an open society.

I also learned that the CRPD is so much more than just an international treaty – it’s a powerful tool for change. Persons with disabilities in Kenya are using this tool to change the way they look at themselves and to challenge the way society looks at them – and treats them.

The CRPD demands a comprehensive change across all sectors – education, health and governance – with a message that speaks to everyone: ‘INCLUDE US!’ And the values underlying the CRPD are truly transformative – dignity, equality, autonomy, participation, respect for difference and acceptance of human diversity.

And there was so much more. The Disability Legal Information Clinic opened while I was at the CDLP. The chance to volunteer at the clinic was fantastic. Dealing with real peoples’ issues (some of which had legal solutions, and some of which did not) taught me so much. In particular, it showed me that the law is a powerful tool for change but that it cannot address all the diverse needs that people have.

The Centre also offers additional scholarly opportunities. If you write a good essay, you are encouraged to submit it either for presentation as a paper at a conference, or as a chapter in a book. Through the encouragement of the lecturers and the PhD students, I gave a paper on my preliminary thoughts on Article 19 in a conference on ‘Key Contemporary Housing Issues in a Changing Europe’ – a paper that will appear in a forthcoming book.

But the LL.M Programme is not just about individual work. Group essays are a key part of the course – and another way to get work published! But they are also are great way to hone one’s negotiation skills (“lets meet on Wednesday afternoon to start the essay, shall we?” “No, on Wednesday afternoon I have an appointment with my hairdresser, how about Friday evening?” “No, on Friday evenings, I go drumming…” and so on) – and to transform classmates into friends.

The LL.M programme also involved participating in lots of conferences, which helped us to stay engaged with processes in the real world, such as the reform of the mental health laws in Ireland. Conferences also offered a great opportunity to travel within Europe – indeed it was during one such conference that I saw snow for the first time in my life!

We also had the opportunity to attend a seminar at Interights in London on strategic litigation, which got us thinking about the role that litigation could play in advancing the rights of persons with disabilities in our respective countries. Of course, a stopover at the Emirates Stadium was mandatory during this trip!

We also had fruitful contact with other faculties, such as the Department of Women’s Studies, where my African colleagues and I gave a presentation on the status of women’s rights in our respective countries (Zambia, Ethiopia and Kenya). It was fun and fascinating. It also revealed how our different identities intersect – one is not just a woman, but also perhaps a woman with a disability, who comes from a minority community and belongs to a minority religion. The reality is that discrimination often arises from our multiple identities and is far more complex than it may appear at first glance.

Needless to say, this means that simple, narrow solutions are not the answer.

The facilities that the university offers never ceased to amaze me. If I needed a book that wasn’t available in the library, the library would order it for me. It was also great to have free supplementary computer classes and advanced English writing classes. And you can pick up other vital skills in classes devoted to cooking, creative writing, yoga, meditation and assertiveness training. I wonder if my family and friends will know which extra classes I took?

But I wouldn’t have achieved as much as I did at Galway without all the ongoing support from OSF – both the Disability Rights Initiative and the Open Society Initiative for southern Africa (OSISA). Many organisations fund scholars but do not necessarily support them along the way – but not OSF. Indeed, the supervisors for my dissertation were the LL.M Programme Director, Shivaun Quinlivan, and Tirza Leibowitz, who is the legal advisor for OSF’s Disability Rights Initiative. Working with them was fantastic. They pushed me to read widely and to ask questions even when I could not answer them.

And the support from OSF stretched beyond the Masters course – funding me to present my dissertation at an international forum in Washington on ‘Achieving inclusion across the Globe’ – something I could never have dreamed of when I left Nairobi for somewhere called Galway all those months before.

When I jetted off, I knew that there would be some hard times ahead. But I was thinking about loneliness and homesickness and incomprehensible legal concepts – not that the temperature could ever sink so low or that the sun could set at 3pm! And apparently, I was lucky because so many people told me that ‘we’re having such a mild winter this year’!

But having said that – Galway is such a beautiful city and so vibrant in summer with its film festivals and art festivals and music festivals. You literally have to refuse to read all the posters to get anything done in the summer! And, I must admit, I also miss living a stone’s throw from the (admittedly freezing!) sea.

Thanks to the Internet I was also able to regularly Skype and email my family and friends back home. This allowed me to keep in touch with the significant people in my life, which helped me to cope with the distance (if not the cold!) and has also made settling back home much easier than I’d imagined. I have no idea what I would have done without the World Wide Web!

It really was an absolutely incredible year. I learned far more about the law and life than I thought possible. And to win the gold medal in my class at the end was the most amazing icing on the cake. And when I got the email from Shivaun, I couldn’t stop myself from crying – because it showed that if you work hard, and are adequately supported, anything is possible. 

Supporting links: 
Open Society Foundations Disability Rights Initiative
Centre for Disability Law and Policy, National University of Ireland, Galway

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Historic Hearing in US Senate on UN Disability Treaty

by Professor Gerard Quinn

A historic hearing took place yesterday (Thursday, July 11th) in the US Senate Committee on Foreign Relations.  The issue before the Committee was US ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD).  In the US system the Senate must gives its ‘advice and consent’ before the Federal Government can ratify a treaty.  A two thirds majority vote is needed from the full Senate before the Administration can proceed to ratification.  This is an exceedingly high bar but, especially after yesterday, it looks likely to be met.  It is now almost a foregone conclusion that the Committee – chaired by Senator John Kerry (D-Mass) – will commend a positive vote to the full Senate.

This really matters not just for the US but also for the rest of the world.  And it would certainly up the ante for Irish ratification.  The traditional bi-partisan approach of the US Congress was splendidly exemplified in opening remarks made to the Committee by Senators John McCain (R-Ariz) and Tom Harkin (D-Iowa).  The symbolism of their joint appearance spoke volumes about the natural reflex of both parties in favour of the civil rights of persons with disabilities.  Indeed, both of them relayed the support of former President H W Bush as well as former Senator Bob Dole.  This immediately took the issue out of the cauldron of partisan politics and placed it where it should be – as matter of high principle.

There were two panels of experts giving testimony to aid the deliberations of the Committee.  The first panel consisted of representatives of the Administration.  The first was Honorable Judith Heuman who is a veteran for previous civil rights campaigns on disability and who currently serves as the first ever special adviser in the US State Department on foreign relations on disability.  She was joined by Ms Eve Hill who serves as senior counselor on civil rights to the Assistant Attorney General.  Both put forward and amplified the view of the Obama Administration in its proposal for ratification.  The Administration signed the CRPD in 2009 and conducted an exhaustive cross-Administration process of review in order to prepare a concrete proposal for the Senate for ratification.  This took 18 months to complete and culminated in a formal proposal from the Administration ratification two months ago.

The proposal for ratification from the Executive Branch contained several suggested Reservations as well as Declarations and Understandings (inelegantly styled RUDs) to ease the path of ratification.  The most important reservations suggested by the Administration have to do with Federalism and with the question whether the convention can create new rights that be litigated in State Courts.  Essentially the Federalism reservation is to the effect that nothing in the convention is to have any direct reach into State law.  This is a boilerplate reservation entered by the US into nearly every international human rights treaty.  It is intended to preserve State sovereignty.  The second important reservation is to the effect that no new cause of action is created by ratification.  That is to say, the convention is not to be considered self-executing.

Both Ms Hueman and Ms Hill were at pains to point out that the convention rests essentially on basic American values such as dignity, autonomy and equality of opportunities.  They portrayed the convention as an international projection of American civil rights law – the crowning achievement of which is the Americans with Disabilities Act (ADA) which was signed into law by President Bush in 1990.  They asserted that the convention is essentially a non-discrimination instrument and therefore perfectly compatible with US law.  They also asserted that US law is substantially in compliance and probably more in compliance than the laws of any other country.  And they asserted that US national interests – including commercial interests – were best served by ratification.  Although US disabled citizens enjoy high levels of rights protection at home they have a right to expect similar standards abroad as travellers, workers and businessmen.  The US, it was said, could more credibly criticize others once it ratified.  And ratification would entitle the US to share in an international dialogue about how to advance the rights of persons with disabilities based on its own very substantial track record.

The questioning from most of the Senators was sympathetic.  The lead witnesses were asked to clarify and expand on their core asserts that US law is in compliance and that the convention represents no intrusion on sovereignty.  One suspects this was done to solidify the record.   While sympathetic to the goals one the convention, one Senator questioned whether ratification was necessary given that US law already complied and given that the US could already assume leadership without belonging to the UN treaty process.  These were fair questions to which the main answer was that membership of the treaty system would enable the US to magnify its influence and soft power over an issue that affects nearly 1 billion people worldwide.

Another panel of experts from outside the Administration was also given an opportunity to make their views on ratification known.  Former Attorney General Dick Thornburg – one of the architects of the ADA – voiced strong support.  John Wodach – former Head of Disability Unit in the Civil Rights Division at the Justice Department and one of the drafters of the UN convention – lend his considerable experience and wisdom in support.  John Lancaster – a former US marine who served with great distinction and was disabled in Vietnam – gave powerful testimony about the unanimous support for ratification from many veterans groups.

The testimony wasn’t all one way.  Mr Stephen Groves (Heritage Foundations) voiced strong skepticism about the value of treaty ratification in general and particularly concerning the quality of advice that would come from the UN treaty monitoring body.  Dr Michael Ferris (Patrick Henry College) echoed these views but also added the argument that the convention would erode the rights of families to decide on the education of their won children contrary to US law.  The Senators appear to have accepted the counter-arguments that while the UN Committee can persuade it cannot command and that the rights of families remain intact.  There was some skirmishing over the issue of whether mention of reproductive health encompassed and expanded abortion rights.  But the preponderant view was that the convention in no way has this effect.

The hearings ended with a powerful plea from the heart of John Lancaster who, speaking as a veteran, lauded the convention as something based on American values and observing that if the US failed to ratify’ then he couldn’t see ‘what America is about.’  In a sense he held up the convention as a mirror and saw America and invited the Senate to draw the obvious conclusion and recommend ratification.

The stage is now set for the issue to be reported back to the full Senate for a vote on ratification.  If the tenor of the questioning in the Committee on Foreign Relations is anything to go by then ratification should be assured.  Nonetheless, ensuring a two thirds majority is a daunting task.  There is no doubt at all that US ratification would enable the US to substantially step up its global dialogue on how to advance the rights of persons with disabilities.  It would enable the US to shape the dialogue at the annual Conference of States Parties and maybe transform it into a genuine platform for the exchange of policy perspectives.  And it would give the US a voice in the election of the UN Committee on the Convention on the Rights of Persons with Disabilities.  Equally significantly if the process of reform can be embedded around the world then that would give US companies to the fore of accessible technology a chance to transform lives.

If, as hoped, the US ratifies soon, then US/EU high level dialogue on disability policy will doubtless be stepped up.  Irish ratification would likewise enable us to actively join the global conversation which, during times of economic austerity everywhere, is more important than ever.

Professor of Law, Director, Centre for Disability Law & Policy, NUI Galway.

Gerard.quinn@nuigalway.ie

www.nuigalway.ie/cdlp

The video of the hearing is available at: http://www.foreign.senate.gov/hearings/hearing_convention-on-the-rights-of-persons-with-disabilities-treaty-doc-112-7

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Oireachtas Committee Produce Significant Report on New Legal Capacity Legislation

Yesterday the Joint Committee on Justice, Defence and Equality published a very significant Report on the Mental Capacity Bill 2008.  The Report followed on from written submissions that the Committee called for in August 2011 and two public hearings the Committee held in February.  The Committee in its report acknowledged that the new legislation must reflect human rights-based approach to legal capacity.

The main points made in the Report are as follows 

  • The best interests principle is not appropriate in relation to adults when questions are raised in relation to their decision-making
  • Article 12(4) of the UN Convention on the Rights of Persons with Disabilities requires respecting the “will and preferences” of the person be the central principle
  • A court is not an appropriate forum for examining issues around legal capacity
  • The legal capacity legislation should provide for advance care directives including advance care directives in mental health
  • The new legal capacity legislation needs to move away from guardianship and should be based on supported decision-making
  • Decisions made by third parties for someone else should only be done as a last resort

 This Report is a very significant reference point for the new legal capacity legislation.  The Mental Capacity Bill 2008 (heads of the bill) is clearly out of step with international human rights law, in particular Article 12 of the CRPD.  It is expected that the government will publish the legislation shortly and it will be important that the above points are factored into the legislation.  Another important reference point is the Essential Principles: Irish Legal Capacity Law.  The principles were developed by 15 civil society organizations.  The principles are based on best international practice and the guiding ethos of the UN Convention on the Rights of Persons with Disabilities. Putting these principles in law would enable the Government to honour its Programme for Government commitment to introduce capacity legislation in line with the UN Convention. It would also result in a real improvement in people’s lives.

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ECHR Cases on Denial of Legal Capacity to Persons with Disabilities

by Eilionoir Flynn

In light of the Oireachtas Justice Committee’s report on the Mental Capacity Bill which will be launched later today, I wanted to reflect on two recent ECHR cases which have demonstrated how a denial of legal capacity to disabled people, through the imposition of an adult guardian, leads to the violation of other fundamental rights – such as the right to a fair trial, the right to be informed of decisions made about the person, the right to liberty and freedom of movement, and the right to freedom from inhuman and degrading treatment or punishment. These cases – Stanev v Bulgaria and DD v Lithuania have already generated significant commentary in the disability rights movement (see here and here) – as these cases represent the first time in which the European Court has acknowledged that detention of a person in a social care home, rather than a psychiatric hospital or institution can constitute a breach of Article 5. As Ireland moves towards reforming its law on capacity, it is worth bearing in mind the comments which have been made by the European Court, especially with regard to the ways in which adult guardianship can violate the rights of disabled people.

In Stanev v Bulagaria the applicant’s family members had applied to the regional court for a declaration of total incapacity and the appointment of an adult guardian. The court carried out what is known as a functional assessment of capacity – in other words, a test of Stanev’s ability to understand information, use and weigh information to reach a decision, retain information long enough to make a decision, communicate the decision to others, and understand the consequences of the decision to be made. As part of this functional assessment of his capacity, the regional court considered evidence that Stanev had been diagnosed with schizophrenia, had been admitted to psychiatric hospitals on several occasions, sold all his possessions, begged for a living, spent all his money on alcohol and became aggressive whenever he drank. Based on this evidence, the court found that Stanev was not totally legally incapable, but made a finding of partial incapacity, which was upheld on appeal. The relevant authority subsequently authorised the appointment of a temporary public guardian to Stanev, as his family members were unwilling to act as his guardian.

At the time of this appointment, Stanev was living in a small annex to his half-sister’s house. Since he had been found not to have the capacity to decide where to live, his guardian made an application for Stanev to be moved to a social care home. An agreement with the care home was subsequently drawn up and signed by the guardian, and Stanev was not consulted or informed of the reasons for this decision, or how long he would have to stay in the care home. Stanev was transferred to the care home by ambulance. The conditions in the care home were appalling, and led to a finding by the European Court that these conditions amounted to inhuman and degrading treatment, in violation of Article 3 of the European Convention on Human Rights.  In addition, the care home kept Stanev’s identity papers, meaning that Stanev could not travel without the explicit permission of the Director of the care home, even to go to the local village.  Once the period of appointment for the temporary public guardian had elapsed, the Director of the care home was then appointed as Stanev’s guardian. Stanev was not free to leave the care home where he had been placed, leading the European Court of Human Rights to find that he had been unlawfully deprived of his liberty, in violation of Article 5 of the European Convention on Human Rights.

The circumstances which Stanev faced are extreme examples of the damage that can result to an individual who is placed under adult guardianship. Some might argue that this damage could have been prevented if the guardian had been better monitored, if conflicts of interests had been avoided (e.g. in the appointment of the director of the care home as his guardian), if Stanev had been consulted about the decisions to be made and his wishes taken into account. However, even if all of these safeguards were in place, the transfer of legal capacity in relation to the decision about where to live from Stanev to his guardian means that it would still be possible for a guardian to have placed Stanev in a care home which he was not free to leave. Even if the physical conditions and facilities in the care home had been better, Stanev would still have experienced significant restrictions in his daily routine and would not necessarily have had access to opportunities to participate in the community – e.g. employment in the open labour market, mainstream education, making friends and forming relationships with individuals other than paid staff. These are all basic opportunities which the public at large may take for granted, but are often denied to people with disabilities, especially those who live in institutional care, and whose legal capacity is restricted or removed entirely.

In DD v Lithuania, the applicant had developed schizophrenia, apparently as a result of shock at discovering that she was an adopted child. Her adoptive father applied to the district court to have her declared legally incapable and this finding was made. He subsequently applied to have her placed in care home for people with intellectual disabilities. DD’s psychiatrist was appointed initially as her guardian, but subsequently asked to be removed, claiming she had only consented to the initial appointment due to the strained relationship between DD and her father, including suspected financial abuse. The psychiatrist was then removed and her father was appointed as her legal guardian. Her father asked the care home to restrict visits to DD, and not to allow her former psychiatrist to visit her, which the care home agreed to do. He eventually removed her to his own flat. She escaped and was returned to the care home by police on two separate occasions.

DD attempted to have her guardianship tranferred back from her father to her former psychiatrist and asked the care home to ininitiate proceedings, but this request was refused. She then applied to the court for a review of the decision to appoint her father as guardian, arguing that she had never been consulted or involved in determining who her guardian would be, and had not been present at hearings. At the new preliminary hearing held on whether to reopen the guardianship case, DD was not allowed separate legal representation on the basis that her father, her legal guardian, had legal representation and that this was sufficient. DD alleged that she was threatened by the judge in his office during these proceedings that if she did not agree to the appointment of her father as guardian, an application would be made to place her former psychiatrist under guardianship.  She subsequently agreed to the appointment of her father as her guardian and the court therefore did not reopen guardianship proceedings.  Ultimately, her father asked to be relieved of responsibility as DD’s guardian and the care home in which she lived was then appointed as her guardian.

The European Court of Human Rights found that DD’s placement in the care home constituted detention as she was not free to leave; however, it found that such detention was lawful as it had been consented to by her guardian. However, the court did find a breach of Article 5.4 since there was no process for DD to have her detention reviewed. Unlike in Stanev, the Court found that the conditions in the care home did not amount to inhuman or degrading treatment. DD had argued that the use of restraint and seclusion constituted a breach of Article 3 but the Court found that these interventions were medically necessary and thus did not constitute a violation of rights.  In addition, the Court found that the proceedings in the domestic court resulting in the decision not to reopen DD’s guardianship case were not carried out in a fair manner and constituted a violation of  Article 6.1.

In short, these decisions contribute to an emerging body of case law from the European Court of Human Rights where the placement of people with disabilities (generally those with intellectual disabilities or mental health conditions) in adult guardianship has resulted in a violation of their fundamental rights. Article 12 of the UN Convention on the Rights of Persons with Disabilities which recognises that “persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” e has been cited approvingly by the European Court and the notion of legal capacity – the right to make one’s own decisions and have these decisions respected in law – as a universal attribute inherent in all persons, regardless of the individual’s level of decision-making ability, is gaining traction in international commentary (see here and here). Therefore, the approach of the UN Committee on the Rights of Persons with Disabilities, which has strongly urged Spain and Tunisia to replace systems of substituted decision-making, such as adult guardianship, with systems of supported decision-making which respect the will and preference of the individual, should be borne in mind by Ireland as we move towards the publication of our capacity legislation.

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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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