More than 4,000 disabled Irish people live in homes that most developed countries would have shut long ago. In some, residents are still medicated to control their behaviour, writes Chief Reporter CARL O'BRIEN
TYPICALLY THEY were behind high walls, down long driveways or on the edge of communities. Some are relics of an era when “unreasonable” members of the population were locked away or institutionalised in the 18th and 19th centuries.
One of the first purpose-built facilities in Ireland for the intellectually disabled was opened in the 1860s, known as the Stewart Institution for Idiotic and Imbecile Children. The sheer numbers ending up in poor-law workhouses meant the State couldn’t cope, so religious organisations, for the most part, took over.
Today, most developed countries have closed down such institutions. The UK and the US have been building more appropriate community-based facilities for several decades. But in Ireland, more than 4,000 people still reside in outdated, inappropriate facilities that are unable to provide an acceptable level of care.
And yet, this is just part of the picture. Of this number, more than 300 people with intellectual disabilities reside in psychiatric hospitals, even though they don’t have a mental illness. A further 350 live in “de-designated” units – parts of psychiatric hospitals that were simply reclassified as community units to help massage the figures in the late 1980s.
Successive governments have pledged to end the practice of placing disabled people in inappropriate settings.
In 2001, then minister for health Micheál Martin announced a “complete programme” to transfer people with intellectual disabilities in psychiatric hospitals to appropriate accommodation by the end of 2006 at the latest.
A year later, the government handed over documents to a UN human rights committee to show it would remove all people with intellectual disabilities from inappropriate institutions into community-based services within a few years. It never happened.
These institutions – St Peter’s, Castlepollard, Co Westmeath; Lough Sheever Centre in Mullingar, Co Westmeath; the Sean O’Hare unit in Cloonamahon, Co Sligo; Grove House, Co Cork; Summerhill House and St John of God House, Enniscorthy, Co Wexford; Clogher House in Co Monaghan – are still operating.
To see how far we lag behind you need only go to Britain. Prof Jim Mansell, the author of an influential report for the UK government on care homes, says the de-institutionalisation programme in Britain is virtually complete.
“If you compare Ireland with the UK, it’s got some way to go. In England, we’ve closed all the large long-stay institutions,” he says.
Many have tolerated institutions in this country on the basis that, with caring, dedicated staff, their needs can be met. But experts now agree that large residential homes, by their very nature, deny people with disabilities their basic human rights. Residents have no choice about how to live their lives, and no control over decisions made concerning them.
But the most toxic environments are those where a psychiatric approach to care prevails. This means residents with challenging behaviour can be medicated to control their behaviour, in the absence of proper therapies.
“It is shocking,” says one consultant psychiatrist employed by the HSE, who declines to be named. “For those with behavioural problems, their conditions are exacerbated by the circumstances they’re forced to live in. They require small, calm units with access to therapies – but the opposite is the case. They live in large groups and are utterly institutionalised.”
THE DANGERS OF inappropriate care for disabled people were laid bare in a recent report by the Mental Health Commission report into St Luke’s psychiatric hospital in Clonmel, Co Tipperary. When the commission visited in 2008, it found intellectually disabled patients were being inappropriately prescribed long-term drugs such as benzodiazepines to control their behaviour, rather than the kind of therapeutic intervention they needed.
Not all institutions are the same, though. Brian O’Donnell of the National Federation of Voluntary Bodies – the main representative body for service providers – says the majority of its members have some quality or care standards system in place. “Many voluntary organisations employ not only care workers or nurses, but psychologists, speech and language therapists. We have a big emphasis on quality and standards. The board of organisation in many cases are represented by parents and friends of people with intellectual disabilities, so we’re very mindful of these issues.”
He says major State investment during the 1990s and in the earlier part of this decade has helped improve services – but he acknowledges some people have been left behind.
“The political priority at the time was to develop services for people on waiting lists. So the people on waiting lists went into five-star services, while the improvements passed by those left in institutions.”
Annie Ryan, author of Walls of Silence – a book on the State’s policies towards people with mental disabilities – says standards in many older institutions have improved over time, with a much greater emphasis on therapy and links with the community. Notwithstanding these improvements, she says the model remains deeply flawed.
“The State essentially handed over these services to voluntary and religious organisations in the 1950s and 1960s in very much the same away as they did with the industrial schools,” she says. “But at least with the schools they retained a supervisory role and arranged curriculum and inspections. So even those children weren’t as vulnerable as people with mental handicaps,” she says.
Government officials insist the process of closing old institutions and establishing community facilities will continue despite problems with the public finances. They say such plans are complex and involve securing new facilities, ensuring the needs of disabled people can be met and staffing levels are sufficient.
The future, according to experts, lies in the community. This means living in small group homes or individual housing, with support based on each person’s needs. It also means having access to education and employment, as well as having choices, and being enabled to live with dignity.
“It’s been possible to do so much harm to disabled people because they weren’t seen as part of society,” says Prof Mansell. “We should be keeping everyone together, forming part of a wider community.”
This could also allow disabled people or their advocates to spend money on the services they want, according to Deirdre Carroll of Inclusion Ireland, the main representative group for people with disabilities. Instead of accepting the services an institution provides, she says, people would be able to shop around.
“This will require a change in how services are funded as well as a change in mindset and attitude,” says Carroll. “Change will not happen overnight and many will be nervous, but the alternative – to continue as we are – is no longer on cards.”
