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.

Day 3: CDLP NUI Galway & Harvard Disability Project Summer School

by Charles O'Mahony & Noelín Fox

Professor Gerard Quinn & Professor Michael Stein began morning 3 with a presentation on Article 12 (legal capacity) of the Convention on the Rights of Persons with Disabilities. Professor Quinn noted that even before the advent of the Convention there had been an evolution of thinking on reforming laws on legal capacity. The Council of Europe led the way for a time by way of Recommendation (99) 4E on Principles Concerning the Legal Protection of Incapable Adults. However, the CRPD by way of Article 12 now leads the way. It was noted that theories of personhood might cause difficulties in restoring legal capacity to persons with disabilities.

Professor Quinn spoke about the status approach to legal capacity that linked "deficits" to legal capacity. He suggested that the Convention dissolves these assumptions and presumptions. He then spoke about the outcome approach to legal capacity, which involves an assessment of unwise choices as a test for removal of capacity. He noted that everyone makes unwise choices and repeats unwise choices but that does not result in the loss of legal capacity. The Convention now requires that outcome approaches to the assessment of legal capacity be inconsistent with Article 12. The tensions and concern with risk have led to restricting persons with intellectual disabilities from having intimate relationships and Article 12 requires a move away from this approach.

Professor Stein noted that many voices crafted Article 12 of the Convention on the rights of Persons with Disabilities. At the negotiation of the CRPD there was a suggestion by some State Parties that persons with disabilities could hold rights but not exercise them in the same way that a child could hold rights but not exercise them. Professor Quinn then facilitated a discussion of the different sections of Article 12. He suggested that Article 12(2) is pregnant with ambiguity. There was then a discussion around Article 12(3) and its requirement of supported or facilitated decision making to assist persons with disabilities to exercise their legal capacity.

The discussion then moved to the safeguards provided for in Article 12(4), which might imply that substitute decision making remains. Professor Quinn referred to this as the “co-mingling of two different ideologies”. He suggested that in order to resolve the co-mingling ideologies between supported and substitute decision-making there was a need to look at the object and purpose the CRPD. However, Professor Quinn noted that there is no neat prepackaged answer in relation to questions thrown up by Article 12. There was a discussion around the International Disability Alliance’s position on Article 12. (You can access the IDA’s legal opinion here).

There was then a discussion of the UN Office of the High Commissioner for Human Rights Thematic Study on the Convention (2009). Charles O’Mahony was asked to give an overview of the OHCHR’s statements on the insanity defence. He noted that the OHCHR suggested in the document that Article 12 requires State Parties to the Convention to repeal defences in their criminal law such as the insanity defence and replace them with disability neutral doctrines. He suggested this statement was surprising not least because that issue did not appear to be raised at the negotiations on Article 12. He noted that the defence was linked to many other defences in criminal law such as provocation and infanticide and that reform of the law would be extremely complex and that State Parties would in all likelihood institutively resist this proposal. Eric Rosenthal also made a contribution in relation to the OHCHR’s statements in the same document on Article 14. The OHCHR stated that Article 14 prohibited laws on involuntarily detention and treatment unless they were disability neutral. A participant asked Eric whether Article 12 was relevant to involuntary psychiatric detention and involuntary treatment. He responded that it was profoundly relevant to involuntary psychiatric detention and involuntary treatment.

Dr. Mary Keys from the School of Law at NUI Galway was asked to give an overview of the Irish law reform process on legal capacity. Dr. Keys gave an overview of the current law reform process and the key aspects of the proposed legal capacity legislation that will replace the archaic wardship system. Dr. Keys referred to the review of the Mental Health Act 2001 and suggested that there was a great opportunity to achieve compliance with the Convention. Professor Quinn ended the session by asking participants to consider the following puzzles emanating from Article 12 in a participatory exercise. The puzzles posed are as follows:

1. What does “on an equal basis with others” mean in Article 12(2)?
2. Does Article 12(2) contain an irebuttable presumption of legal capacity to exercise rights?
3. Is substitute decision making ever permissible under Article 12?
4. Is there some elusive point where “supported decision making” amounts to “substitute decision making”? How do you know? Can you successfully guard against it?
5. Is a reservation to Article 12(2) (or a disguised reservation in the form of a declaration of understanding) ever acceptable?
6. Can bits of Article 12 be “progressively achieved”? If so, which parts?

Janet Lord and Rosemary Kayess led the afternoon session. The session considered the development and meaning of Article 19 of the CRPD – the Right to Independent Living and Community Inclusion. The background to this right was outlined including the policy antecedents at UN and European level and the views of various state parties to the debate prior to agreement on the final text. There was discussion on whether the right to independent level represents a new right and the linking by the drafters of the core elements of the right to other international human instruments articles and comments. The independent living right was eventually linked to Article 13 of the Universal Declaration of Human Rights - Freedom of Movement - in order to validate its place as a right. A discussion about whether Article 19 prohibits institutional care in different cultural contexts ensued. The conclusion was that the right is about creating supports in the community, which enable people to live independently, rather than dictating any particular models of housing. Central to this is the need to ensure that families have the supports needed to enable them and their disabled family member live at home.

Participants engaged with an exercise of translating the effects of individual impairments and the societal barriers, which limit participation, into concrete policy proposals to enable people, realise the core elements of Article 19. The feedback on this exercise gave rise to a lively debate about the use of terminology – in particular what constitutes a disability and what constitutes impairment. In working with people from many different cultural backgrounds it was acknowledged that the words used in the CRPD might represent a compromise for some. Whether one uses “person with a disability” or “disabled person” is reflective of the particular standpoint and historical development of the disability movement in different countries. Agreeing on a final wording will not be fully reflective of any one standpoint, but represent a compromise that we all can live with - this is the essence of negotiation.