Forgotten people who wait in hope

The Government pledged almost a decade ago to end the practice of placing those with disabilities in inappropriate institutions. So why are 3,000 people still there? asks Carl O'Brien, Social Affairs Correspondent.

GERALDINE DOLAN was just 16 years old when she arrived to the place she now calls home. St Peter's, a grey institution at the end of a long tarmac driveway in Castlepollard, Co Westmeath, was an old 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 high ceilings, tall windows and open wards, was considered far from ideal. By the time Geraldine reached her mid-30s, health authorities and the Department of Health were finally beginning to acknowledge it was time to close the 250-year-old building and place patients in more appropriate, community-based care.

A number of bungalows were purchased by health authorities in the area. Residents would be relocated to these smaller, family-type settings and have better access to activities to help them meet their full potential.

And yet today, almost a decade later, 45-year-old Geraldine is still waiting for the move. She has aged and stiffened significantly. And the bungalows, with their peeling painted walls and weed-strewn gardens, are a sad relic of a government policy which many feel was abandoned before it ever began.

"To me this is wrong - absolutely wrong," says Geraldine's sister Bernadette, a Dublin-based primary school teacher.

"The only reason for this kind of action is that people with intellectual disabilities don't have a voice. She can't speak for herself - and neither can the other residents. These people have been forgotten about.

"You or I wouldn't like living in these conditions. The staff are very good to her, but there's only so much they can do in a very difficult environment. The problem is these institutions are cheaper to run; it would cost more to have higher staffing ratios in the community. So all these bungalows are just lying vacant ."

Proper community-based care, says Bernadette, would be a life-changing experience for her sister, who thrives in family settings.

"She's very friendly. She loves going out and meeting people. Just last week we went to see some music at a hotel and she loved it, going up to get drinks, paying, saying hello to everyone. To be in a pleasant, community-based facility, to have the attention of staff and other residents, is just what she needs."

Geraldine Dolan's story isn't unique. There are hundreds of other people with intellectual disabilities still being accommodated in old institutions such as psychiatric hospitals, or other outdated facilities, because there is nowhere else for them to go.

BUT ONE OF the most extraordinary aspects of the story is the manner in which a Government policy to tackle the issue appears to have quietly sank without trace from public view.

Official policy documents handed over to a UN human rights committee in 2002 show the Government pledged to remove all people with intellectual disabilities from psychiatric hospitals, so-called "de-designated" units and other outdated institutions into appropriate community-based services.

Among the institutions listed for closure were St Peter's, Castlepollard, Co Westmeath; the Sean O'Hare unit in Cloonamahon, Co Sligo; Grove House, Co Cork; Summerhill House and St John of God House, Enniscorthy and Dawn House, all in Co Wexford.

The Government insists the process is continuing and that investment is being directed towards the area through a multi-annual investment programme.

It also says the plan is complex and involves securing new facilities, ensuring the complex needs of disabled people can be met and that staffing levels will be sufficient for this.

But there are few signs on the ground that the policy is being implemented. Latest figures compiled by the Health Research Board indicate that around 329 intellectually disabled people are still resident in such settings.

Campaigners say little, if any, money has been directed into a de-institutionalisation programme.

And this is just the tip of the iceberg. The Irish Times understands that an internal review being conducted by health authorities on other forms of institutional care estimates that as many as 3,000 people with disabilities or mental health problems may need to be transferred out of inappropriate institutions and into the community.

The idea of institutionalising people with disabilities is a relic of the Victorian approach to dealing with society's problems, says Dr Mark Harrold, a clinical psychologist who specialises in working with disabled people.

He says the psychiatric ethos that prevails in some centres for people with disabilities means many residents with challenging behaviour are medicated to control their behaviour, in the absence of proper therapies.

"I remember going to one particular institution and I was bracing myself for horror from what I had heard about it," he says. "When I went in there, there weren't padded walls, the staff were very caring.

"But then I realised that at around 6pm, there wasn't a sound. Residents were in bed - and many were being medicated to suit the roster. There is still a mindset attached to institutional care that hasn't moved on."

Dr Harrold says most other rich countries have a history of placing some of their most vulnerable citizens in institutions. The only difference, he says, is that most of these countries have left this era behind.

"You have to remember that the model of care that evolved in these settings was a form of custodial care, where disabled people were seen as a burden on society who should be placed out of sight," he says.

"It was a world of large dormitories, where people had few personal belongings. Disability was still something to be ashamed of. And society accepted all of this. You still hear of people who have only discovered much later in life that they had a brother or sister with a disability, but their parents never told them."

Annie Ryan, a campaigner for disability rights and 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 50s and 60s in very much the same away as they did with the industrial schools," says Ryan.

"But at least with the schools they retained a supervisory role and arranged curriculums and inspections. So even those children weren't as vulnerable as people with mental handicaps," she says.

THE LACK OF standards and inspections is a major issue for lobby groups representing people with disabilities and their families.

Even though voluntary and religious bodies receive well over €1 billion in State funding each year to provide services, there is precious little close scrutiny of the nature or the quality of services provided.

"Many are surprised when they realise there are thousands of people in residential settings with no protection in terms of approved standards of care or inspections," says Deirdre Carroll, chief executive of Inclusion Ireland, an umbrella group for people with disabilities.

"I am aware of the many excellent services available but I am aware also of cases of neglect, poor standards, bad practice and abuse."

As plans to de-institutionalise people with disabilities have fallen off the Government's radar screen, so too, it appears, have planned standards for disability services.

A process to develop them began in 2002 and was completed two years later after extensive consultation. Yet there is still no firm date for when they are likely to come into force.

Unpublished research shows that during a pilot project of planned standards, a significant number of service providers were failing basic standards, such as providing services in a safe environment, respecting patients' rights and consulting family members over the care of relatives.

As well as arguments over respecting people's dignity and human rights, perhaps the most compelling argument for investing in modern services for people with disabilities is the dramatic improvement it promises in people's quality of life.

Annie Ryan says her son, who spent 20 years in a psychiatric hospital, has made "incredible progress" since having access to multidisciplinary support and therapies in the community.

"I know so many people who have come out of these old facilities and have blossomed. I'm thinking of one girl in particular, who was highly disturbed , and is now calm, quiet and smiles.

"With good community-based care you have more simple interaction; you have more staff; there is a sense of being accepted.

"You're near the shops or the cinema, all that brings a quality of life. The biggest enemy of life for a person with intellectual disabilities is boredom."

These are arguments that Bernadette Dolan and her sisters are well aware of. They know Geraldine can have a much better quality of life, if the political will was there to invest in disability services.

"We've seen her get older, stiffer and put on weight over the last few years. But we know that if she was linked into a good community-based service, it would make the world of difference," she says.

"She loves coming to our house at weekends. But where she is at the moment, they don't have the staff to bring the residents out as regularly as they would like. She's fairly restricted in what she can do.

"She's missed out on a lot - but to have the chance to have a better quality of life, to have that kind of social interaction would do wonders for her. Our only hope is that she gets that opportunity soon."