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Deinstitutionalise in favour of community care

People with disabilities in institutions need choices

By Niall Crowley

There is a disturbing silence about people with disabilities in institutions. HIQA has kept plugging away with its inspections and reports that document deplorable and unacceptable conditions. But that seemed to be it, until the HSE finally called for resources to do what is needed – deinstitutionalise.
The HSE has just sent a costed submission to Government to accelerate implementation of the 2011 Congregated Setting report which dealt with residential settings where people with disabilities live in the presence of ten or more other people. It identified that some €250m is needed to deinstitutionalise, and to offer a community-based model of care in place of these institutions.
The media have been largely silent on the issue. Politics sees no votes in it. The Irish Human Rights and Equality Commission has yet to make a move. The National Disability Authority seems to be in hiding. The NGO sector, even those advocating for human rights, appears to have left the issue for Inclusion Ireland to take up. When it comes to human rights is it just the rights of some humans that matter? Then, out of the blue, the HSE puts it up to Government. Why has it taken so long?
The Congregated Settings Report demanded that people with disabilities should be able to: “live full, inclusive lives at the heart of family, community and society and they should be able to exercise meaningful choice, equal to that of other citizens, when choosing where and with whom they will live”. The report was clear that “congregated provision is in breach of Ireland’s obligations under UN Conventions”.
At the time of the 2011 report, 4,099 people with disabilities lived in these congregated settings. One thousand young people with disabilities are actually living in nursing homes.
The rate at which people are moving out of these institutions has been slow. There is an annual target to move 150 people. Even this low target is not met, with about 100 people moving each year.
The UN Convention on the Rights of all Persons with Disabilities commits State Parties to “recognise the equal right of all persons with disabilities to live in the community, with choices equal to others” and requires that they “shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right”.
Ireland played a central role in the adoption of this Convention, but we have yet to ratify it and to implement this requirement to deinsitutionalise.
The Congregated Settings report recommended that the Department of Health ensure that all people with disabilities living in congregated settings move to community settings within seven years. It found that these people “live isolated lives apart from any community and from families; many experience institutional living conditions where they lack basic privacy and dignity”.
Congregated settings are a violation of human rights in and of themselves. They also create the conditions for further human rights abuses as can be seen from the hundreds of HIQA reports that have identified these centres as not being compliant with requisite standards.
We will now get to see what place human rights really have in the priorities of Government. Will they make this €250m available when the national budget for disability has been reduced by €160m since 2008? They have the money. Will they put it into tax relief or into fulfilling people’s human rights? The next budget will be a true measure of this Government’s respect for human rights.
The HSE proposal starts with 237 people with disabilities moving out of eleven large institutional settings with significant HIQA compliance issues. This would cost €22.4m. The next steps would involve a further 755 people with disabilities moving, at a cost of a further €67m. The final step would cover moving 1,863 people with disabilities from fifty-five settings at a cost, of about €163m. This, it should be noted, does not address waiting lists for those in need of care support.
Deinstitutionalisation involves more than closing institutions, it also involves developing high-quality and appropriate community services. Until now deinstitutionalisation has used community group housing. This was not recommended by the Congregated Settings report with its emphasis on personalised accommodation and support arrangements.
There is a risk that these community settings will just reproduce damaging institutional cultures.
This raises the spectre of the human rights violations evident in congregated settings merely being replicated in community settings.
The HSE has made an important intervention. The Government is challenged to respond.
Both must then ensure people with disabilities choose, receive, and direct the services and supports they need, participate in their family and community, and have the opportunity to maximise their full potential in accordance with the recommendations of the Congregated Setting report. •