NEWS FEATURES:A decade ago, the Government pledged to end the practice of placing people with disabilities in outdated institutions. Yet thousands still live in inappropriate settings, writes CARL O'BRIEN, Social Affairs Correspondent
EVERYTHING WAS ready. The curtains were chosen. The beds and furnishings were in place. A smell of fresh paint still hung in the air.
After years of broken promises and false dawns, a date to move the first group of people with disabilities out of the 250-year-old institution and into modern community-based accommodation was set.
“Our sister Maireád had even chosen the colours for her room,” says Colm Brady. “She chose purple and lilac. She was so excited. It was all she would talk about every time we’d see her. It was just a matter of turning the key. At least, that’s what we were told.” Then, a few weeks ago, the phonecall came. The move, the senior health official said, was being halted. The Government’s moratorium on recruitment meant there weren’t enough staff to run them.
It didn’t matter that the bungalows had been bought almost a decade ago. Or that the State had spent around half a million euro refurbishing them. The plan was off and there was no telling when, or if, it would be back on the agenda.
“The Health Service Executive uses this corporate speak which says nothing. It’s all non-committal language, but you can tell it’s not a priority for them,” says Brady.
“People with disabilities don’t speak out. They’re always at the back of the queue. You have to fight for everything, nothing comes by default, so they’re invariably at the back of the queue. It’s very disheartening, but you just have to pick yourself back up.” Home for Maireád (30), and about 70 other people with intellectual disabilities, continues to be St Peter’s, a large grey building at the end of a long tarmac driveway in Castlepollard, Co Westmeath.
It’s a gaunt, spectral institution that used to be a mother and baby home until, almost half a century ago, it was converted into a residential centre for people with disabilities. Even at that time the building, with its high ceilings, tall windows and open wards, was considered far from ideal.
The wooden frames of the windows are rotting, while shower and toilet facilities need to be replaced. There has never been an independent inspection of accommodation or services in the facility by State authorities.
Maireád and others are not alone in these kinds of settings. More than 3,000 people with intellectual disabilities are still being accommodated in old institutions, such as psychiatric hospitals or other outdated facilities, because there is nowhere else for them.
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.
Campaigners, however, feel the issue has quietly slipped off the Government’s agenda.
“It’s because they have no voice, absolutely no voice,” says Bernadette Dolan, whose sister Geraldine has lived in St Peter’s for the past 30 years.
“We are families who have no clout: we’ve no political clout. That’s why we’re left with no alternative but to highlight these issues in the media. None of us wants to do that. We’ve gone the political route and exhausted it.”
Plans to relocate residents from Castlepollard are a case in point. Ten years ago, local health authorities talked about moving residents, recognising that the old building was no longer acceptable or appropriate for providing a decent standard of care. They bought a number of bungalows. Clients would be transferred to these smaller, family-type settings and have better access to activities to help them meet their full potential.
For years, nothing happened. Paint peeled off the walls of the empty houses, weeds sprouted up in the driveways. They looked to be a sad relic of a government policy which seemed to be abandoned before it ever began. Shortly after the issue was highlighted in The Irish Timesand other media outlets a year ago, the transfer programme was resurrected. The houses were refurbished and promises were made to relocate an initial group of 17 residents. Now, with the plans stalled, campaigners feel let down once more.
To add to the sense of grievance, the Government says it does not have the funds to fully implement long-promised care standards for an estimated 28,000 disabled people in residential care. Officials estimate it would cost around €10 million to implement. As a result, there are no standards or independent inspections of disability services, despite the sector receiving about €1 billion in State funding each year.
For families, the neglect of people with disabilities has haunting similarities with the treatment of children in industrial schools. The Ryan report into the abuse of children in industrial schools and other institutions talked about these places as historical entities for the most part, but they still exist – mostly out of sight of the general public.
“They’re right across the country,” says Bernadette Dolan. “They should be knocked down, the people should be moved out and placed in the community in small settings. These should be a thing of the past – but they aren’t for many of our adults.”
Politicians and Government ministers have spoken solemnly in recent weeks about learning from the past and ensuring institutional neglect never occurs again. But the pledges ring hollow for many families on the margins.
“There has been so much lip service about learning from the past, but we haven’t learned,” adds Bernadette Dolan. “They are still in institutions and are still being neglected. The services should be inspected; residents should have the services they require; they should have accommodation that meets their needs.”
Too Much to ask? 'She's entitled to a reasonable quality of life'
GERALDINE’S STORY
Proper community-based care would be a life-changing experience for Geraldine Dolan (46), says her sister, Bernadette Dolan. “Shes very friendly. She loves going out and meeting people – she thrives in those kinds of settings,” she says. “To be in a pleasant, community-based facility [and] to have the attention of staff and other residents is just what she needs. Surely she’s entitled to a reasonable quality of life . . . after almost 40 years in old, outdated institutions.”
MAIREÁD’S STORY
Maireád (30), one of the younger residents at St Peter’s, loves music and art “especially music from the 1980s”, says her brother, Colm. The family’s attempts to find a suitable residential place for her have been a struggle. At one stage she was placed in St Loman’s psychiatric hospital in Mullingar, even though she does not have a mental illness.
“She has Asperger’s and suffers from acute anxiety. It took a long time for her to recover from that,” he says.
JEAN’S STORY
Jean’s family have seen her make huge strides in recent years – but they think she can make even more progress in the right setting. “She has been going to a day care centre in Mullingar in recent times. It’s given her a life, for the first time, says her sister, Siobhan Freeburne. She’s so much happier . . . Boredom is the biggest problem for someone with intellectual disabilities living in an institution. That is why community-based facilities are so important.”