Sir, – Your editorial of June 30th states that "Insufficient facilities for those citizens who are infirm, disabled, intellectually challenged or unable to fend for themselves represent a blight on our society. So does the manner in which family carers are treated". I agree that it is not a mark of a decent society that families assume the role of carer for adults with complex needs into their later years and I would also share the sentiment that "It is the kind of evasive, communal blindness that once ignored the abuse of vulnerable individuals within religious-run institutions".
I would disagree, however, that the way to address this problem is to put in place “transitional arrangements between homes and residential centres”. While I subscribe to the idea that there is a need for legislation that would give statutory rights to disabled children and adults, I cannot concur that there should be a right to institutional care.
Instead, it should be a right to an assessment of need and whole-of-family planning over the life course.
The institutional model of care and support for people with an intellectual disability was formed during decades of apathy to law reform and policy development, both at a public and political level. Increasing the numbers of persons in institutions, I believe, is contrary to the ideal of never returning to the horrors of the past.
Our Constitution guarantees rights to liberty, privacy and bodily integrity. United Nations human rights instruments also guarantee freedom from torture and degrading treatment, a right to liberty and security, right to privacy and family life, and non-discrimination. Institutions create an environment that is ripe for human rights abuses to occur within them. HIQA inspects all residential facilities for people with disabilities and has catalogued a picture of extensive non-compliance with regulations in areas such as health and safety, independent advocacy, restrictive practices and correct checking of medicines.
Following RTÉ's Prime Time programme on Áras Attracta in late-2014, a report, What Matters Most, was commissioned. That document described an environment that was sterile, where the resident's daily routine was devoid of meaningful activity and absent of choice, and concluded that residents of "Áras Attracta have little opportunity to realise their potential to live the rich and satisfying lives that they have a right to aspire to". It is worrying that there should be an endorsement of institutions by The Irish Times and a call to make the "transition" from homes to such places easier. Instead, we should be calling on policymakers to make the vision in Time to Move On a reality and to invest in community-based, individualised supports so that people with disabilities can have their own homes.
All persons with disabilities have the capacity to live independent lives in the community, with the right supports. This does not mean that they should stay in the family home with the responsibility of lifelong care falling to ageing parents. It does not mean that they should be moved into group home settings that mimic institutions in the lack of choice and control that they afford to the person. It means they should be supported to have a home of their own, in the same way as any other person with a housing need. In fact, it has been demonstrated that those with the most complex needs have the most to gain. Community-based models have been shown to increase personal growth, decrease challenging behaviour, increase community participation, engagement in meaningful activity, self-determination and choice, quality of life, adaptive behaviour, and, above all else, satisfaction.
The “damaged and incapacitated people” you refer to are citizens and entitled to dignity as such. Use of this language is demeaning and ignores their personhood. – Yours, etc,
PADDY CONNOLLY,
Chief Executive,
Inclusion Ireland,
Unit C2, The Steelworks,
Foley Street, Dublin 1.
Sir, – The situation of the Kinsella family's failure to find a residential placement for their daughter with an intellectual disability because of others with a "higher medical priority" highlights the State's failure to support the creation of residential centres for individuals with an intellectual disability that fall outside the remit of the various medical models on offer by the HSE and the Department of Health ("Elderly mother with dementia left as daughter's carer", July 1st).
A person with an intellectual disability may perhaps have more medical issues than the rest of the population but surely their intellectual disability is not in itself a medical matter, and the need to find or create situations in which a citizen with an intellectual disability can find a place in society, with or without a residential placement, is a societal issue.
All this comes hot on the heels of the recent takeover by the HSE of the Camphill Community’s residential centre at Ballytobin Callan, Co Kilkenny, on foot of a deeply flawed HIQA report. The family-style voluntary care that some lucky residents have enjoyed for over three decades is being replaced by short-term, multiple-shift agency staff, because the non-medical model of person-centred care that Camphill specialises in sits badly with HIQA’s medical yardstick.
Surely there is a need for residential centres like Camphill Ballytobin to be supported, funded and regulated under the Department of Social Protection rather than the Department of Health. One hopes that the new National Disability Strategy 2017-2020 being prepared by the Department of Justice and Equality will recognise this and create a legal framework that the non-medical residential needs of some citizens with an intellectual disability might be addressed. – Yours, etc,
JOHN CLARK,
Camphill Ballytobin,
Callan, Co Kilkenny.