My Daughter is Leaving Home: Reflections on Living Independently

by Noelin Fox

This month, my daughter, like thousands of her peers across the country, is moving away from home for the first time. She is 18 years old and is taking up her place in college, embarking on her journey to independence. Over the coming months she will have to learn a whole array of new skills which she has no previous experience of. She will have to manage her (limited) budget, feed herself properly, learn to live with people who are not her immediate family, manage the academic work she is assigned, deal with the bank, figure out bus time-tables, forge new friendships and a whole array of other tasks. In the process she may well make mistakes. She may submit work late for college, spend too much money on going out leaving herself short at the end of the week, get involved in unwise relationships, among many things. Hopefully she will learn from such mistakes and manage better the next time. Throughout this process she will have plenty of support – from us her parents, from the school-friends she is living with and from new friends – and if she gets her heart broken or bruised we will take care of her until she heals and help to her move on. The college too is well attuned to the needs of in-coming first years – it has good structures in place to ease them into college life and help ensure they progress through their first encounters with third level academic studies.

How different all this would all be if she had a disability, especially if she had an intellectual disability. Would she be leaving home at all at this stage of her life at all? Probably not – and there are many reasons why this is so. On a practical level she may not be allowed to open a bank account or sign a lease for her accommodation. If she were deemed by a medical doctor to be unable to manage her money, any disability benefits she received would probably be paid directly to us.

And where would she go anyway? There are so few mainstream third level education options open to people with intellectual disability. Third level colleges may have disability support services for students, but gaining access to the regular courses is a problem and there are few courses designed to meet the needs of people with intellectual disability in this sector.

On another level we may feel that she would be safer at home, worried that she would not be able to cope with life without our immediate support and guidance – would she be vulnerable to being exploited, would she be able to manage getting the bus, would she get involved in inappropriate relationships, would she manage her course work? And if she needed support at home where would this come from and how would it be paid for?

Our systems and structures are designed to support my daughter’s progress from home to college and on to employment. The pathways are clear and open. It is assumed by her family, her schools and her community that she will learn the skills she needs to progress through the systems and become a fully-fledged independent adult. These positive assumptions about her abilities are built into and supported by our structures and systems. For people with intellectual disability the opposite is the case. Quite apart from the worries of parents’ about the ability of their disabled sons or daughters to manage life independently, the lack of clear pathways is an enormous obstacle. For young adults with intellectual disabilities the most likely route after school is some form of training or day services provided by a disability service provider and funded by the health services – not education. Although FAS funds some training programmes for people with disabilities, the vast bulk of day services and training for people with intellectual disability is funded from the health budget. So, while our educational obligations to most young adults continues into their twenties, it seems to end at eighteen for those with intellectual disability. This means that if a young adult with intellectual disability does not want to attend a specialist (and in effect a segregated) post-school education or training programme, she will in general have to forge a path largely unassisted by our state systems – which in the main only provides recognized pathways to specialist/segregated services for her. There are some notable exceptions such as the Certificate course in Contemporary Living offered by TCD and the new ‘Going to College’ pilot scheme starting this Autumn in NUIG. But the point is that these are the exceptions and third level colleges are only just beginning to develop options for people with intellectual disability.

Article 19 of the UN Convention on the Rights of Persons with Disabilities asserts the equal right of all persons with disabilities to live in the community with choices equal to others, and to be fully included and participate in the community. People with intellectual disability, just like everyone else, must learn the skills they need to achieve this successfully, and have the opportunity to develop their own relationships with others, independent of family. This will mean that they, just like everyone else, probably will make mistakes along the way and hopefully they will learn from their mistakes. Many of us, however, disabled or not, never learn from our mistakes and may in fact end up repeating the same mistakes over and over again – how many people, for example do we know who repeatedly make poor decisions about relationships. Family or friends may offer advice when this happens, but we do not and cannot stop them, nor should we unless they break the law. Yet if a person with intellectual disability makes a mistake she probably won’t be allowed to make it again, and indeed it is more likely still that she will never be provided the opportunity to make the mistake in the first place. This will probably be framed as protecting her, but it has the consequence of stopping her from learning what she needs to learn in order to get on with her life. How else will she learn if she is protected and segregated from real life in the community? To become adults in charge of our lives we all need the chance to learn from experience, and to learn the skills we need we all have to given our independence and the chance to live in communities.

Making real the right to independent living and community inclusion means:

1. Ensuring that our legislation – and particularly our new legal capacity legislation – makes positive assumptions about people’s abilities and supports people in their decision-making where this is needed.
2. Ensuring that our policies, structures and practices are truly open to all citizens, including people with intellectual disability, and that any barriers currently blocking people’s path to independence are eliminated.
3. Developing recognized and accessible pathways to independence for people with intellectual disability, which are not separate from those of their peers.
4. Using our resources to support people in living their lives as part of the community so that they too can make their way in life as they see fit.

A sea-change in attitude is needed , away from paternalism and protection – which has served people badly – to inclusiveness and expectation. We always assumed that our daughter would leave home for college. For her, this time of her life is full of excitement, challenge and expectation. For us, of course, it is a little sad and not a little costly! But we are delighted for her and would never attempt to stop her going. It should not be so different for the many young adults with intellectual disability at the same stage as her, and their parents. There is a great injustice in this and it is something we can change – it is not so difficult but it does require some determination to change on all our parts.

Towards Modern Legal Capacity Legislation in Ireland

by Charles O'Mahony

The Centre for Disability Law and Policy recently prepared a submission to the Oireachtas Justice Committee on the Scheme of proposed legislation that will radically overhaul Irish law on legal capacity. The full submission is available here.

The core message of the submission was that the fields of mental health law, non-discrimination, and legal capacity can no longer be considered separately. In this regard the Convention on the Rights of Persons with Disabilities “recognises that considering these issues in separate silos was wrong and that the artificial lines drawn between these separate fields are increasingly blurred” and it is important to consider the impact the proposed legal capacity legislation on general non-discrimination provisions and mental health law in particular. The submission highlighted that Article 12 of the CRPD on legal capacity is at the core of the Convention and that equal recognition as a person before the law is key to the enjoyment of all other rights. The submission also flagged that the assumption of legal capacity, and the obligation on states to provide supports to people with disabilities in order to enable them to exercise their legal capacity flows from this recognition, and these are the key attributes, which need to be embedded in Irish law, in order to ensure compliance with the Convention.

Other main points in the submission include:

• The CRPD through Article 12 clearly rejects the “status” and “outcome-based” approaches to legal capacity and insists that the “functional approach” must focus on supports to enable persons to exercise legal capacity.
• While the Scheme of the Bill has positive aspects it needs to be reconfigured to embody the philosophical shift of Article 12.
• The Scheme of the Bill regularises substitute decision-making in the form of guardianship instead of prioritising the supports that could prevent substituted decision-making from being used.
• These are significant shortcomings that need to be addressed, if the proposed legislation is to enable Ireland to ratify the Convention.

The rest of the submission focused on Article 12 of the CRPD and its requirement that State Parties provide a continuum of support to enable people to exercise their legal capacity. In this regard the CDLP suggested that the functional approach to assessing capacity set out in the Scheme of the Bill could have an important role to play in ensuring that individuals who require support to exercise their legal capacity receive the appropriate assistance. The submission conceded that in circumstances of last resort, where the person in question does not have any support network to assist with decision-making, the option of facilitated or co-decision-making should be considered rather than the imposition of substituted decision-making or guardianship. Facilitated or co-decision-making involves an appointed person taking a decision based on a detailed understanding of the person’s life plan, wishes and intentions, and one which has the potential to enhance the capabilities of the person in question, rather than one which is taken in their “best interests”.

A number of examples of best practice in this area have been included in Appendix 1 (range of supports), Appendix 2 (British Columbia) and Appendix 3 (Sweden) of the submission. The examples of best practice provided demonstrated that supports in the area of decision-making do not have to be resource intensive, as was demonstrated by the system of Representation Agreements in British Columbia.

The submission stressed the wider European context of disability law reform. In particular, it noted that the Council of Europe and the European Union are working towards developing a deeper understanding of Article 12 and the implications it might have for regional human rights instruments in Europe. It was also noted that the European Court of Human Rights was clearly edging closer to the core of legal capacity and has already explicitly invoked the CRPD as an interpretive aid to the European Convention on Human Rights. In that regard it was noted that this means that Ireland’s antiquated legal capacity laws are already vulnerable to scrutiny in Strasbourg by the ECtHR. Importantly it was also noted that the functional model in the Scheme of the Bill if retained without modification could result in Ireland being found in breach of the ECHR in time.

The submission noted that the Scheme of the Bill does make reference to the wishes of a person that may have been expressed previously and indeed presently. However, there is no provision to have these wishes enforced legally in future circumstances where they are deemed to lack capacity. The submission contended that the “best interests” principle, which emerged from law and policy focused on children is increasingly inappropriate in relation to adults. The submission also stressed that a central aspect of Article 12 is the focus on the “will and preferences” of the person as the determining factor in decisions about their life and this requires moving away from a “best interests” approach, which brings with it the significant risk of paternalism. As such significant change in thinking required needs to be embedded in the Bill.

In relation to courts or tribunals the submission noted that the CRPD envisages a reduced role for the courts in the area of legal capacity and the law reform trend in light of the CRPD is away from guardianship and substitute decision-making. As such the Scheme of the Bill adopts a functional approach to legal capacity, referring to informal decision making and retaining a role for the courts. It was suggested that the Bill should reflect that the primary role of the court under the Scheme of the Bill should not be to deprive persons of their capacity. Rather it should be to safeguard persons against deprivation of legal capacity (ensuring that appropriate supports are provided for decision-making), protect against the abuse of persons considered to have impaired decision-making by third parties and ensure that safeguards that apply to supports are in place.

There was a discussion of the synergy between Article 12 (equal recognition before the law) and Article 19 (living independently and being included in the community) of the CRPD. In order to live independently in the community a person needs to be recognised as having legal capacity. Conversely development of capacity requires experience of living independently and being included in the community and forming relationships. The dynamic life experiences through which all other citizens develop their capacity and skills are denied to disabled people on the basis that a third party considers that they lack capacity. The Bill needs to provide for the removal of barriers that prevent persons with disabilities from living independently and acquiring the capacity to make decisions in all areas of their life.

There was a discussion of the far reach of Article 12 beyond the scope of the Bill. It was noted that there are deficiencies with legal capacity law in the context of the mental health law as it relates to adults and minors and in the criminal law in respect of capacity to consent to sexual relations. It was argued that the shortcomings could be addressed in order for the State to comply with its obligations set out in the CRPD and finally ratify the CRPD. The Centre for Disability Law & Policy also submitted that these issues do not necessarily need to be considered as part of this Bill. Instead it was suggested that these issues could be considered by the legislature separately as it moves towards ratification of the Convention on the Rights of Persons with Disabilities. The CDLP also recommended that given the evolving understanding of Article 12 and legal capacity a review mechanism should be built into the Bill.