'I save State millions, all I ask for is some respite'

Parents of disabled children struggle to cope as it is, never mind the threat of more cuts, says Joanna Kiernan

Few parents of a disabled child would argue that they are looking for any special treatment. The goal is equality, dignity, normality, life. A large protest, organised by the advocacy group Inclusion Ireland, on July 7, has created ripples in the current recession-inspired wave of self-reflection.

Suddenly, as a nation, we have been forced to look outwards. Surely we couldn't be that badly off, could we? Surely we can still manage to provide basic services to our most vulnerable.

For those who witnessed the march, saw photographs, or even heard of the assembled protesters' demands, it was a wake-up call, a shock.

"We've had a lot of calls from people who've received letters from service-providers saying next year's going to be very difficult if they do get these cuts, they'll have to withdraw x, y and z," Deirdre Carroll, CEO of Inclusion Ireland said. She added, "That causes terrible fear. An awful lot of parents don't want to speak out because, you know, that's the only service there."

On July 7, those for whom life has often been a daily struggle, whether it be boom times or bust, marched to Leinster House and desperately demanded to be heard, calling for an end to the unfair cuts -- both proposed ones and those already taking hold.

A little digging makes it easy to see why these protesters were so exercised.

In the last few weeks anger with the Government reached boiling point with the threatened closure of respite services provided by the Brothers of Charity in Limerick and Galway, but this is just the tip of the iceberg. Ireland was among the first group of countries to sign the Convention on the Rights of Persons with Disabilities when it opened for signature on March 30, 2007. However, Ireland has not yet ratified the Convention.

In July 2008 (before Lehman Brothers), the Personal Advocacy Service promised in the Citizen's Information Bill was deferred indefinitely. This service would have meant that a person with an intellectual disability who was being unfairly treated in any area could have had someone to speak out for him/her.

In October 2008, a complete roll-out of the Education for Persons with Special Education Needs Act was deferred indefinitely. This would have guaranteed that a child with special needs would have had an appropriate assessment of his/her needs and subsequently receive the appropriate education.

In Budget 2010 there were cutbacks in both the disability allowance and carer's allowance. Educational supports and special needs assistants have been cut in many instances.

More than 100 special classes have been eliminated and respite care has been widely cut back or stalled. The Government's own Disability Strategy as laid out in 2004 has been decimated by one U-turn after another.

I spoke with a number of people directly affected by this onslaught. Many were of the opinion that the disability sector was viewed as an easy touch, with few of those affected able to fight back.

However, it would appear now that enough is enough. There is a growing consensus in this community that there can be no further concessions and that this is indeed a matter of life, death and the quality of both.

Case Study 1

Sarah Hurley from Limerick is in her 70s and has been left devastated by the closure of Bawnmore Respite Centre in Limerick, where her son John, (43), often stayed.

"It's devastating for me and for 63 more families. I'm a widowed mother. I have a Downs Syndrome boy, man now. He's living with me full time. Out of the month, I would get about three days of a rest when he went into the house, to give me a break," says Sarah.

"It's a shame that this house is closed. I don't know why the Government has made such a sharp cut," she says. "I wouldn't have been told at all, only I thought I might have to have a hip operation and I pressed to know if there would be respite available. Thank god he has put me off for a while, but I have arthritis in my knees and my hip and I need a bit of a rest."

John requires constant attention. "He couldn't cross the road on his own," his mother tells me. "I get no break at all and I don't get as much as a penny. I don't get the carer's allowance to look after John. I do it all for nothing. I saved the Government millions. All I ask is some respite," she continues, her voice quivering slightly.

"In the budget there was €8 a week taken off the blind and the handicapped and there wasn't a word about it, it was brushed over, because they think there's no votes in the handicapped. I'm not going to put up with it. If I have to go on hunger strike I'm willing to do it. It's only my rights I'm looking for, nothing else," she adds defiantly. "My husband worked, paid all his taxes and I worked and here I am."

CASE STUDY 2

Yvonne Dillon, (41), is from Limerick. She has two sons, Gary, (12), and Jack, (10). Both boys suffer from ichthyosis, among other conditions. Gary, for example, also suffers from Asperger's Syndrome.

"Between them they have eight different conditions; they actually have six of the conditions each," says Yvonne. "We tried to get them an educational assessment through the school, but we couldn't."

When, eventually, Gary was assessed, the centre that had carried out his assessment closed and at the next centre he was a lesser priority.

"He was put on to a waiting list for three years, but the services for which he was waiting, they hadn't actually been set up for the over-sixes yet. So he was on this waiting list for non-existent services," Yvonne remarks, sounding as though she could both laugh and cry.

"We rely on my parents and on my family. Without them, to be honest with you, I'd be gone into the river several times," she says candidly. "We were told that we did qualify for respite, but then we got the letters coming back to tell us that we were on this big long waiting list again. Then our other child was diagnosed with ADD and ODD."

Yvonne has had to pay for private educational assessments for her two sons, because schools are only allocated two or three assessments per year.

"When we go back in September we have to find somebody to fight with in order to get these things in place, and for our other son we have to get him the help he needs in school too," she adds.

Yvonne is a full-time carer to her two boys. Her husband, a security officer, was let go two weeks ago and caring for two boys with such conditions is a costly business.

"This ichthyosis condition affects their skin. We can't just put anything on their skin; the skincare just for my two boys alone costs about €120 a month. I can't buy them shoes and socks out of Dunnes and Penneys because their feet will blister and burn. But I know people who are in worse circumstances," Yvonne concludes.

"We nearly count ourselves lucky because at times it seems what we're putting up with is mild, but at times you're just fighting, and fighting, and fighting."

For further information see www.ichthyosisinireland.com

CASE STUDY 3

Caroline Prendergast, (39), from Clane, Co Kildare, has two children with special needs: Adam, soon to be nine, and Connor who is four. Their sister Amy (four), Connor's twin, has no intellectual or physical difficulties.

They are not looking forward to September's return to school, which will be plagued with uncertainty for the entire family.

Adam who suffers from Oral and Motor Dyspraxia and Sensory Processing Disorder, is in mainstream school and is due to enter third class.

"He's a bright kid, he's done better than anybody ever expected him to do," says Caroline. Up until the Value for Money review in April, Adam had a full-time Special Needs Assistant (SNA); this was then reduced to assistance on a shared basis. Now there are plans to cut this support even further, to three hours a day.

"Changes in routine have a huge effect on him and they need to be phased in over a transitional period," says Caroline. "If they pull his support now, all his progress will be worth nothing. It's not that we're looking for someone to mollycoddle Adam. These are identified needs."

Meanwhile, Adam's little brother, who has hydrocephalus, has been very ill. "We spent the last two-and-a-half weeks in Temple Street Hospital with Connor. He had brain surgery twice in seven days."

"I just feel under immense pressure," says Caroline, who is also having trouble securing an SNA for Connor, who is starting school this September. Connor's new school has already informed parents that they are unable to provide cover for staff's annual and maternity leave.

"We've gotten through all of this and now they're asking me to fight for an SNA. It's like, Connor can get through all of this and we can get him to a stage where he can go to school, and then we're told he's not getting a full-time SNA," Caroline says.

"The school has to provide the Department with 'further information' as to why they feel Connor needs full-time assistance. How he can't walk, he can't talk, he can't feed himself, he can't go to the toilet, so I don't know what else to tell them. It just annoys me," Caroline concludes with searing honesty.

"There's no special needs world that my boys are going to grow up in and live in. They have to live in the big bad world that everyone else lives in."

Caroline does get 15 hours a week home support for the two boys, but this too will be reviewed.

RETURN TO MAIN NEWS PAGE