Many parents of disabled children who are due to leave school say they will have nowhere to go as a result of health spending cuts, writes CARL O'BRIEN
BREDA PURCELL feels a gnawing sense of worry every time she thinks of her son’s future.
Emmet, 18, is autistic and suffers from behavioural problems. He’s made great progress in recent times at the day-school he attends in Lisnagry, outside Limerick. He’s able to communicate properly for the first time by using sign language and picture exchange.
He’s happier in himself and less frustrated and his occasional violent outbursts have almost disappeared.
Yet now, for all the progress he has made, he’s facing a cliff-face drop.
He should be leaving school and heading on to an autism-specific day service, such as a sheltered workshop or other form of training or education, but cuts to disability services and spending constraints on voluntary organisations mean there is nothing available for him when he finishes school next month.
“If he doesn’t get any kind of services, he’ll just be sitting at home all day. He’ll regress and lose all the progress he’s made,” says Breda Purcell, a mother of four from Askeaton in Co Limerick.
“He needs routine and assistance to progress and develop, but none of that will be available. He’s so big and strong that I couldn’t cope with him every day.
“I love him dearly, but even the one night a week he stays with us is exhausting.”
She has written often to the Health Service Executive, which has told her there are no funds available for a day service. She has sent letters to Rehab Care, which provide him with accommodation, but they say they don’t have funds to provide staff or activities during the day.
Ironically, the HSE sent an occupational therapist to assess his needs, who recommended an autism-specific day centre. Yet a different arm of the HSE told her that no such service was available.
Emmet isn’t alone. School-leavers with disabilities right across the State are seeking basic services which, in many cases, simply aren’t there. The problem is exacerbated by the fact that promised Government funding for new disability services which were announced in last October’s Budget have still not been allocated to health authorities.
The Irish Times reported last week that more than €100 million in new developments, ranging from services for people with disabilities to mental health problems, has still not been sanctioned by the Department of Health.
In recent years, funding for such marginalised groups has been diverted into other parts of the HSE to meet shortfalls. For example, tens of millions of euro set aside for mental health and disabilities has been used to bail out other sectors of the HSE.
This week Mary Harney insisted this would not happen again. She said that money which had been allocated for areas such as disability had been delayed due to concerns over the deteriorating state of the public finances, but it would be released imminently.
People with Disabilities Ireland (PwDI) says it is vital that money is not diverted from a sector which has been marginalised by successive governments.
“This is something we are very concerned about,” a spokesman said.
“There is a range of services which need this money, such as assessments for children of school-going age, as well as independent inspections.”
The National Disability Authority has also raised the issue directly with the Department of Finance. In correspondence earlier this year, it expressed “grave concern” about spending cuts and warned that any further reductions would carry an increasing risk of reductions in residential care, home supports or services for disabled people leaving school.
In response, the Minister for Finance insisted just over a month ago that the Government was committed to protecting the most vulnerable in society, but added that due to the economic downturn it was necessary to “reprioritise and make more gradual progress” in relation to areas such as disability.
But rhetoric about protecting the vulnerable is something which rings hollow to many people with disabilities and their advocates.
Disability groups have warned that hundreds of children and thousands of adults in residential care are vulnerable to abuse because of the Government’s refusal to introduce independent inspections or care standards in the sector.
Just a month ago the Minister for State with responsibility for disability, John Moloney, announced that he did not have sufficient funds – about €10 million – to implement long-promised plans for standards and inspections of residential services for people with disabilities.
These kinds of mixed messages do little to assuage the fears of people like Breda.
The day is getting closer when her son is due to finish his day school and there is no sign of any service being available for him.
“The irony of all this is that it will cost the State more in the long run. If Emmet regresses, he will get worse and need even more care,” says Breda.
Caring for Emmet on her own is simply not an option given Emmet’s behavioural problems.
On one occasion he pulled the handbrake suddenly as she was driving him to school; another time he put his hands around her face as she was driving, forcing her to stop the car suddenly.
“It can be very hard going. I remember taking him to the shop to buy him a treat, because he had been very good. But he wouldn’t leave the shop. He sat on the shop floor for an hour and a half, pulling things from the shelves. It took three staff to move him, because he is quite big,” she says.
“With his behavioural problems, you have to be careful of getting head-butted or barged down by accident. He has calmed down a lot since he’s been in the day service and getting one-to-one attention. But for one person, it’s a 24-hour-a-day job.”
But Emmet also has huge potential. He loves water, enjoys gardening and cooking: to be able to do these things would mean the world to him, says his mother.
“His needs aren’t that big,” she says. “He’s as entitled to the best quality of life as everyone else, but it always seems to be the most vulnerable who get hit.”