03 February 2010

Irish Times

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 But in Ireland, more than 4,000 people still reside in outdated, inappropriate facilities that are unable to provide an acceptable level of care.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.”

'Disabled people are at the back of the queue. They don't have a voice'

CASE STUDY: GERALDINE DOLAN: AFTER A lifetime in institutional care, life is beginning to change for Geraldine Dolan.  

She was just 16 years old when she arrived at St Peter’s. A grey institution at the end of a long driveway in Castlepollard, Co Westmeath, it was a mother-and-baby home until it was converted into a residential centre for people with disabilities almost half a century ago.

Even then the building, with its open wards and draughty windows, was considered far from ideal.

By the time Geraldine reached her mid-30s, health authorities were finally beginning to acknowledge it was time to close the main building and place patients in more appropriate, community-based care.

“St Peter’s is neglected and rundown. The widows needed replacing, the showers needed to be overhauled. It just wasn’t suitable,” says her sister, Bernadette Dolan, a Dublin-based primary school teacher.

“The place was understaffed. There weren’t really any services in evenings or at weekends. She was lucky to enough to have a day service at the local resource centre, but that was it.”

Health authorities moved to purchase a number of bungalows. Residents would be relocated to these smaller, family-type settings and would have better access to activities to help them meet their full potential.

That was 10 years ago. Geraldine, now in her mid-40s, has aged and stiffened significantly in the meantime. But it was only three months ago that she finally moved to a bungalow, following an intensive lobbying campaign by her sisters.

The move from institutional care to a house in the community, which she shares with five others, has made a world of difference.

“She’s been out bowling, swimming. They’re able to do the things they’re interested in. It’s normal living; what the rest of us take for granted,” says Bernadette.

“Geraldine has her own room, and there’s a lovely sitting room and kitchen. There’s a nice back garden, too. It’s a family-type unit. And for those who are able, there’s a bit of extra independence. It’s the opposite to institutional living.”

She was one of 17 residents who have been able to move to three houses in the community – but there are still about 50 residents still living in St Peter’s.

Given the long battle to open these houses, and difficulties with the public finances, there is little sign that any others will be moving any time soon.

“These houses opened because of public pressure,” says Bernadette.

“Disabled people are at the back of the queue. They don’t have a voice. They’re forgotten about. They don’t belong to pressure group like trade unions. And they have no political clout – when you don’t have that, nothing happens quickly.”

Salaries rise as funding falls

FUNDING ISSUES: TAXPAYERS GIVE more than €1.5 billion in funding to voluntary groups to provide services for people with disabilities. However, there is concern over the lack of transparency and accountability in how this money is spent by not-for-profit organisations.

The Comptroller and Auditor General examined this area a few years ago, and found a widespread failure among voluntary bodies to provide audited financial statements or disclose levels of executive pay. An audit of 42 non-profit organisations between November 2004 and January 2005 found that 12 groups did not file accounts for 2003.

These groups received approximately €100 million that year.

It also noted several cases in which financial statements carried qualified audit opinions due to uncertainty over issues, such as the verification of fund-raising amounts.

In the case of St John of God – one of the major service providers – it found that no financial statements had been received between 2000 and 2004. During this time the organisation continued to receive funding worth €288 million.

The HSE says it had addressed the issues raised by the comptroller’s report and says service level agreements more detailed than before.

In addition, Minister of State with responsibility for disability John Moloney has established a value-for-money group to examine how money is being spent.

In the meantime, The Irish Times has established that executive pay across most voluntary organisations has been rising, even at a time when they are receiving less State funding.

Records released under the Freedom of Information Act show that nine of the 13 largest voluntary organisations paid their chief executives increased salaries between 2008 and 2009.

St Michael’s House in Dublin received about €75 million in State funding up to October 31st, 2009, compared to €90 million in 2008. During the same period, the chief executive’s total salary package increased from €198,186 to €201,024.

In Cork, Enable Ireland received €33.5 million in 2009, down from €39 million the year before. The salary of the chief executive increased from €165,673 in 2008 to €169,093 in 2009.

Some organisations have pointed out that despite pay increases, the pension levy and higher tax rates meant chief executives’ pay went down.

All experts agree that community-based living the way forward

HOW THEY DO IT ABROAD: MOST WEALTHY western countries have been closing down institutions for people with disabilities for the past 40 years.

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