Centre for Disability Law and Policy logo
To: Law Reform Commission
From:
Date:
Centre for Disability Law & Policy, NUI Galway
30 November 2012
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Introduction ......................................................................................................................... 3
A: Individual Autonomy: The need for a Legal Model on Supported Decision-
Making to enable people with disabilities exercise their legal capacity. ................ 5
B: The need for a New Legal Architecture to enable people with disabilities take control of their own lives, especially in financial matters. ................................. 6 i.
The Move to Individualised Budget Arrangements – Legal Issues. ........................... 6 ii.
Using Trust Law and New Fiscal Incentives to Develop a Wealth-Accumulation
Agenda. ....................................................................................................................................................... 6
C: The need for a Fresh Consideration of persons with disabilities in the
Criminal Justice system. ............................................................................................................ 7 i. Review of the Law Relating to the Defence of Insanity. ................................................... 8 ii. Review of the Law on Fitness to Plead. ................................................................................ 8 iii. Diversion of Offenders with Mental Health Problems and Intellectual ................... 9
Disability from the Criminal Justice System................................................................................ 9
D. Law Reform Needed to track Advances in Genetic Science Affecting People:
Genetic Privacy and Genetic Discrimination in Ireland. ............................................... 9
Conclusion ....................................................................................................................................11
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The Centre for Disability Law and Policy welcomes this opportunity to make suggestions for the Law Reform Commission’s Fourth Programme of Law Reform.
The CDLP was formally established in 2008 at the National University of Ireland
Galway. Its work is dedicated to producing research that informs national and international disability law reform. The CDLP is engaged in many international and European research networks including the Marie Curie Initial Training
Network DREAM (Disability Rights Expanding Accessible Markets). It has produced commissioned reports and studies for a wide range of international bodies including the European Commission, the United Nations Office of High
Commissioner for Human Rights and its members sit on international advisory boards such as SOROD-Open Society Foundation, European Foundation Centre and Interights.
The CDLP partners with a range of national research bodies on disability in
Ireland and is currently engaged with others is establishing a North/South
Disability Studies Association of Ireland. Within the University it collaborates actively with the Centre for Child and Family Support and the Centre for Social
Gerontology in order to advance a coherent lifecycle approaches to policy development in an evolving Lifecourse Institute.
An important and laudable trend has emerged in the last two programmes of law reform away form strictly doctrinal fields and towards more thematic examinations of the impact of the law on specific vulnerable groups in society.
This helps advance the human face of the law and enables reform to take place across silos instead of being bound by them. While not taking away from the need for doctrinal reform, the CDLP strongly supports this thematic trend, and suggests in this submission some key thematic areas for the Commission to examine, which are not only relevant to people with disabilities, but to many of our citizens. The development of a legal system which accommodates and accounts for human difference is a particularly worthwhile aim, which the Law
Reform Commission has sought to address in a number of ways in its previous programmes of law reform, and will no doubt continue in the fourth programme.
Our submission below is animated by out concern to ensure that adequate legal ground is prepared to enable Ireland move forward with ‘next generation’ law and policy to implement the United National Convention on the Rights of Persons with Disabilities. Ireland has signed this Convention (2007) and is set to ratify it once legal capacity legislation is in place which looks imminent. Even before ratification, authoritative international courts such as the European Court of
Human Rights have begun to take the UN disability treaty into account. Indeed, the Court has done so even in the case of countries that have not even signed the
UN Convention (Glor v Switzerland). This means that Ireland is affected by the
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norms of the UN convention even in the interim period between signature and full ratification. The Law Reform Commission has already done a commendable amount of work in the field and could usefully engage in further work to prepare the ground for rational law reform in the field into the future.
This submission makes four sets of recommendations for inclusion in the 4 th programme which we feel would enable Ireland prepare the ground for implementation of the convention and, in the process, set world standards as well as advance justice for our citizens with disabilities. These recommendations do not generally have financial implications but go to the reorientation of our legal order to advance the UN disability convention.
A: Individual Autonomy: The need for a Legal Model on Supported Decision-
Making to enable people with disabilities exercise their legal capacity.
B: Economic Underpinning to Autonomy: The need for a New Legal
Architecture to enable people with disabilities take control of their own lives especially in financial matters.
C: Mediating Power: The need for a Fresh Consideration of persons with disabilities in the Criminal Justice system.
D: Looking Forward: The need to Take Stock of Advances in Genetic Science
Affecting People with Disabilities: Law Reform to protect Genetic Privacy and end Genetic Discrimination in Ireland.
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A: Individual Autonomy: The need for a Legal Model on Supported
Decision-Making to enable people with disabilities exercise their legal capacity.
A long overdue reform of Ireland’s Ward of Court system is underway and needs to be completed in order to facilitate Ireland’s ratification of the UN Convention on the Rights of Persons with Disabilities.
The Law Reform Commission has helped spur reform by producing a number of important consultation papers and reports on this topic, including its Report on
Vulnerable Adults and the Law (2006), Consultation Paper on Law and the Elderly
(2003), and Consultation Paper on Sexual Offences and Capacity to Consent (2011).
Much of this pioneering work was done prior to the adoption of the UN
Convention on the Rights of Persons with Disabilities and thus could not take advantage of the evolving jurisprudence under that convention. This jurisprudence points very strongly away from guardianship systems (even limited guardianship systems) and toward a supported decision-making paradigm. It bears emphasising that the UN Committee on the Rights of Persons with Disabilities -which body will scrutinise the Irish legal situation once Ireland ratifies the Convention- has roundly criticised States for not demonstrating tangible moves toward a supported decision-making model. Predictably, and needlessly, Ireland will be exposed to such criticism unless it moves firmly in this direction.
To its credit, this point was well understood by the Oireachtas Committee on
Justice, Defence and Equality in its Report on the Mental Capacity Bill (May 2012).
Reportedly, the relevant Bill is been help back until needed changes are made to emblazon the statute with a supported decision-making philosophy. The stage is therefore set for the introduction of modern legislation on legal capacity which will finally enable Ireland to ratify the UN disability convention.
However, since the notion of support to exercise legal capacity is such a new concept, and since many countries are struggling to implement this particular core obligation of the UN CRPD, further research will be required to understand how this support will operate in practice. Although the legislation will be both novel and extremely welcome its operative part is unlikely to be commenced unless and until a practicable legal model for supported decision-making is available.
In crafting such a model great care will be needed to appropriately balance the
(expanded) autonomy of the individual with a concern to ensure that supports do not (even un-selfconsciously) undermine the person. And great care will be needed to balance the on-going right to be protected against exploitation and abuse (which can too easily slide into suffocating paternalism) with the individual’s right to have their will and preference respected. All of this re-
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balancing calls for a very careful consideration of the legal framework needed to implement supported decision-making.
A number of Law Reform Commissions throughout the world have embarked on research to investigate how support models might operate – including the Law
Commission of Ontario in Canada and the Victorian Law Reform Commission in
Australia. It is anticipated that the Irish act will substantially endorse the supported decision-making paradigm in keeping with the Report from the
Oireachtas Justice Committee. Therefore, it would be particularly valuable if the
Law Reform Commission could undertake comparative research of support models in other domestic legal frameworks – including Australia, Canada,
Sweden and Germany, in order to inform the implementation of Irish law on legal capacity.
B: The need for a New Legal Architecture to enable people with disabilities take control of their own lives, especially in financial matters.
In recent years, significant discussions have arisen on the need for transformation of Ireland’s welfare system and social services. In a time of austerity, these discussions have become even more heightened. Independent research is urgently required on the legal architecture and accountability mechanisms needed to develop a sustainable and inclusive social service system which provides a minimum threshold for the standard of living below which no individual is allowed to fall. At the same time, it is clear that the existing system, based on gross proxies of need, has led to the emergence of welfare traps and has made it difficult for individuals to break cycles of poverty and exclusion. i. The Move to Individualised Budget Arrangements – Legal Issues.
While such research should be undertaken on a system-wide basis, the need for comparative legal research on reform of the social services and supports available to people with disabilities is particularly urgent. The Value for Money
and Policy Review of Disability Services report published by the Department of
Health this year has made it clear that individualised budgets and direct payments to people with disabilities will replace the current system of issuing block-funding to disability service providers in the coming years. Legal reform will be required to unbundle current funding and disperse this between health, housing, and social welfare authorities to ensure the individual has maximum choice and control over the services and supports they receive, and that activation and other strategies are utilised to the fullest extent to break cycles of poverty and welfare traps. ii. Using Trust Law and New Fiscal Incentives to Develop a Wealth-
Accumulation Agenda.
In order to ensure that social supports are truly individualised, some innovative options may have to be considered. These could include, for example, harnessing the positive potential of trust law to enable individuals with disabilities to
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accumulate assets which can be used to purchase services they choose, rather than having to accept whatever services are allocated based on a perceived need, which may not exist, or may be vastly different than what has been assessed.
This is variously described as an asset-accumulation strategy. It is particularly potent for persons with intellectual disabilities who are unlikely to grow wealth on the basis of return for their labour.
Creative legal mechanisms – which provide to be generally Treasury neutral - to facilitate this type of wealth accumulation have already been undertaken in the
US and Canada, with the publication of the Achieving a Better Life Experience
(ABLE) Act 2011 and the introduction of the Registered Disability Savings Plan as an amendment to the Income Tax Act 1985, respectively.
The CDLP has already conducted some initial background research in this area – but the involvement of the Law Reform Commission could ensure that a systemwide examination of legal reform necessary to enhance our social services and supports is undertaken.
C: The need for a Fresh Consideration of persons with disabilities in the
Criminal Justice system.
The following areas of the criminal law arise as fitting subjects for further review and analysis.
There are currently a number of reviews looking at different elements of the law and policy relating to persons with mental health problems and the law. An
Interdepartmental Group has been charged with the task of examining law and policy in relation to offenders with mental health problems.
1 In addition, the
Department of Health is currently undertaking a review of the Mental Health Act
2001 and that the Department of Justice and Equality is undertaking a review of the Criminal Law (Insanity) Act 2006. It is important to note that the terms of reference for these review processes indicate that the issue of offenders with mental health problems and offenders with intellectual disabilities is fragmented and a joined up approach is not taking place in terms of reviewing the relevant law and policy. It is envisaged that at some point after the new legal capacity legislation is enacted and the reforms to the Mental Health Act 2001 (as recommended by the Interim Review Group) are implemented there will be scheduled review process. We consider that a body of work undertaken by the
Law Reform Commission on the issues indicated in this section would be invaluable in developing positively the law in this area.
It is noteworthy that the areas discussed briefly here are areas of law where institutional law reform bodies produce very valuable work. This is evident from the number of law reform projects that law reform commissions through out the world are currently undertaking on the insanity defence, diversion of offenders
1 For more information see here http://www.dohc.ie/press/releases/2012/20120305.html
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with mental health problems, fitness to plead and a number of other related topics. For example, the New South Wales Law Reform Commission is currently undertaking a number of law reform projects examining legal issues on people with cognitive and mental health impairments in the criminal justice system.
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The Commission’s work looks at issues such as criminal responsibility, diversion and forensic samples etc. i. Review of the Law Relating to the Defence of Insanity.
The Department of Justice is currently undertaking a review of the Criminal Law
(Insanity) Act 2006. It is noteworthy that the Law Reform Commission has not produced any substantive work on the insanity defence even though it is an area of law that has been examined by a number of other institutional law reform bodies throughout the common law world. For example, the Law Commission for England and Wales is currently examining the insanity defence and the criticisms of the defence and also the problems with the defence of automatism. In particular, they are examining the incoherence in the relevant case law. While the this area of law has been reform recently by way of the 2006
Act it is argued that there is a need for the Law Reform Commission to reexamine the law in light of international developments. For example, in its Thematic
Report on enhancing awareness and understanding of the CRPD, the UN Office of the High Commissioner for Human Rights (OHCHR) stated that:
“[i]n the area of criminal law, recognition of the legal capacity of persons with disabilities requires abolishing a defence based on the negation of criminal responsibility because of the existence of a mental or intellectual disability. Instead disability-neutral doctrines on the subjective element of the crime should be applied, which take into consideration the situation of the individual defendant.
Procedural accommodations both during the pre-trial and trial phase of the proceedings might be required in accordance with article 13 of the Convention, and implementing norms must be adopted.”
3
As Ireland moves towards ratification of the CRPD it is important that there is a critical consideration of the insanity defence. The Law Reform Commission will be in a position to produce valuable work that addresses the stigma created by the term “insanity” and road map how our evolving understanding of Ireland’s obligations under the UN Convention on the Rights of Persons with Disabilities can be reflected in our domestic law. ii. Review of the Law on Fitness to Plead.
The Law Commission for England and Wales, the Law Commission for Northern
Ireland and a number of other institutional law reform bodies such are currently
2 See here for a list of projects: http://www.lawlink.nsw.gov.au/lrc .
3 “Thematic Study by the Office of the United Nations High Commissioner for Human Rights On Enhancing
Awareness and Understanding of the Convention on the Rights of Persons with Disabilities” UN doc.
A/HRC/10/48, 26 January 2009) at paragraph 47. The study was submitted pursuant to Human Rights
Council Resolution 7/9, on human rights of persons with disabilities, in which the Council decided to hold on an annual basis aninteractive debate on the rights of persons with disabilities.
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undertaking research on their domestic law on fitness to plead.
4 Interestingly, the Law Commissions for Northern Ireland and England and Wales are specifically reconsidering the law on fitness to plead in light of the standard for assessing mental capacity. England and Wales introduced the functional approach to “mental capacity” through the Mental Capacity Act 2005 and the Law
Commission is specifically considering the application of a modified version of this approach as a tool of assessing fitness to plead. It is clear that the functional approach to the issue of legal capacity does not accord with what is required by
Article 12 of the CRPD and determining fitness to the basis of a functional approach may not be the correct approach. Nonetheless there is a need to reexamine the law on fitness to plead in light of the forthcoming legislation on legal capacity and the Law Reform Commission is in an ideal place to undertake this work. iii. Diversion of Offenders with Mental Health Problems and Intellectual
Disability from the Criminal Justice System.
In line with other countries throughout the world there has been an increase in the presence of persons with mental health problems in the criminal justice system and this has been linked to the deinstitutionalisation movement. Other jurisdictions have developed a range of diversionary measures that seeks to divert persons with mental health problems from the criminal justice system and to services and supports in the community. There has been no substantive consideration of diversion in Ireland. As such the Law Reform Commission could undertake a very significant law reform project in this area identifying international best practice and making informed recommendations on how
Ireland can provide effective non-custodial disposals of cases involving persons with mental health problems and intellectual disabilities. The Commission could look at the new legal capacity legislation, the Mental Health Act 2001 and the
Criminal Law (Insanity) Act 2006 and chart how a joined up approach can provide for effective diversion.
D. Law Reform Needed to track Advances in Genetic Science Affecting
People: Genetic Privacy and Genetic Discrimination in Ireland.
The Law Reform Commission has always maintained an eye on future developments especially in science and technology that push boundaries and therefore challenge the adequacy of traditional law. One such development has to do with the emergence of genetic science (and the increasing prevalence of genetic testing) and the considerable light it throws on what it means to be human. Among the myriad of ethical issues involved, genetic information reveals
(to a much greater extent than regular medical testing) the range and type of medical ailments, conditions, diseases and impairments a person is susceptible to. This means that the percentage of persons with putative disabilities pushes
4 See “Consultation Paper: Unfitness to Plead” (Belfast: Northern Ireland Law Commission, NILC13, 2012).
The consultation period on unfitness to plead ended on 19 October 2012 and “Unfitness to Plead” (London:
Law Commission for England & Wales, Consultation Paper, No. 197, 2010).
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far beyond the accepted level of 10% in any given society to at least 50%. If information concerning genetic tests that reveal such disability or putative disability circulates too widely then it is entirely conceivable that third parties will abuse it. We could well end up with a ‘genetically clensed’ society and economy whereby only those who are considered risk-free are admitted to the mainstream.
Obviously, one’s right of privacy in the genetic information – or one’s right to the non-discriminatory use of the information – has to be carefully balanced against the legitimate ‘right to know’ (of whatever weight or scope) of third parties such as insurers and employers and even the State. This calls for a very careful and thoughtful balancing of competing rights and interests which the Law Reform
Commission is admirably suited to perform.
Irish law in this area has already made some tangible steps in the right direction.
Part 4 of the Disability Act 2005 regulates genetic testing in a number of third party contexts, including insurance, employment and the mortgaging of property, prohibiting the processing of genetic data in these contexts. In the employment context, section 42(2)(a) of the 2005 Act makes the processing of genetic data for employment an offence under the Data Protection Acts 1998 and 2003.
According to the Data Protection (Processing of Genetic Data) Regulations 2007 an employer cannot make use of genetic data in relation to an employee or potential employee without the prior consent of the Data Protection
Commissioner. No such requests have been made to the Data Protection
Commissioner. Section 43 of the Disability Act 2005 provides for the making of regulations by the Minister for Justice and Equality governing the processing of such information. This has not yet taken place. In addition, Section 44 of the
Disability Act provides that the Minister shall initiate, not later than 1 January
2014, a review of the operation of this Part. This review has not yet been initiated. However, even with these reviews it is likely that our legal provisions will remain patchy and disconnected. Certainly the 2005 Act was crafted long before the GINA Act in the US (below) and the UN convention on the rights of persons with disabilities and needs to be looked at again from a broader perspective.
Some inevitable gaps can be identified, particularly in the context of use of family history information. Insurance companies routinely request family history information for underwriting purposes. Use of family history by third parties potentially gives rise to genetic privacy issues, as well as discrimination, with implications for an individual and that individual’s family members.
It is submitted that there is now a need to stand back from piecemeal legislation to craft a much more rounded approach to the issue of genetics and the law. This is happening elsewhere and we are at considerable risk of falling behind. At an international level, the UN Convention on the Rights of Persons with Disabilities demands enhanced protection for privacy as well as non-discrimination. The
United States passed the trully landmark Genetic Information Non
Discrimination Act (GINA 2008), which prohibits the misuse of genetic discrimination by employers and health insurers. Other Law Reform
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Commission have become engaged. For example, the Australian Law Reform
Commission published report in 2002 on the Protection of Human Genetic
Information. A spur for reform comes in the shape of the EU Charter of
Fundamental Rights which, at a general level, expressly prohibits discrimination based on genetic features. Recent developments in the area of data protection point to an intention to explicitly include genetic data within the ambit of EU data protection laws, with the Commission proposing a Regulation. This may or may not happen and national law can of course innovate notwithstanding the floor set by a Regulation.
It is submitted that a comprehensive review of Irish law in this area needs to be undertaken. This fits with the Law Reform Commission’s previous work on privacy and surveillance (LRC 57, 1999) and indeed on genetic databases (LRC
CP 29, 2004). Law reform is not just about the present but also about the future.
Conclusion
The Law Reform Commission is well-placed as an independent body to undertake the suggested comparative research on the above areas. We are deeply appreciative of the work already done by the Commission with respect to
‘vulnerable people and the law’ already.
The suggested research would be of immense public benefit to our estimated
350,000 citizens with disabilities. It would lay the groundwork for a substantial body of modern and coherent law reform.
And it would number our Law Reform Commission among the handful of Law
Commissions around the world setting a forward-looking agenda of reform.
Gerard Quinn signature 1
Professor Gerard Quinn.
Director, Centre for Disability Law & Policy, NUI Galway
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