The Mid-Western Health Board came under fire yesterday for its alleged neglect of families with children suffering from severe types of autism in the region.
This follows the board's cutting back by over 50 per cent on its budget this year for a special respite home purchased by it for the Brothers of Charity last year in Ennis, Co Clare, to offer 24-hour respite care to children with disabilities.
The health board last year sourced one-off funding of €107,000 for the home; however, it was only able to allocate half that amount this year from core funding.
With some of the children needing 2-to-1 staffing levels, the home is now unable to provide respite care for those children who need it most, according to Claire Rice, a teacher at St Clare's special needs school in Ennis.
One of four at St Clare's educating four autistic children, Ms Rice said: "I feel that there are families at the cliff edge at the moment, and I don't want people to say 'Why weren't the services available?' when some crisis takes place as it inevitably will unless action is taken."
One of the parents affected is Patricia Fitzpatrick. She cares for her 14-year-old son, Tony, by herself. This week she suffered a black eye and a bruised chin while trying to restrain him.
She said yesterday: "He is getting frustrated and upset, because he is with me all the time and no one else. After school he comes home. I can't allow him out unless he is with me, because I am afraid he will run away.
"He ripped up some of his clothes earlier this week and has had one good night's sleep in the last three weeks. I would be able to cope much better if I wasn't so tired all the time. We are being neglected. Respite care is now essential for Tony."
Living in east Clare, Liz Greenwood is mother of 13-year-old Harry, who also suffers from autism. She said: "Respite care is crucial. Sometimes Harry is very easy to manage, no problem at all. Other times, it takes myself and my husband to contain his behaviour. Really the family has no life other than Harry, and everything is Harry-dependent."
Defining autism as a complex developmental disability that affects the way a person communicates and relates to people around them, Ms Rice said: "The children that are not as challenging are getting the breaks, while the families with the most challenging situations are getting nothing, and it really is reaching a crisis situation where families will break down."
Harry's father, Geoffrey, said yesterday: "The health board is spending funding in the wrong area. They are assessing the demand, but there is little or no funding to service that demand.
Mr Greenwood said the parents of children like Harry were "an isolated, excluded minority in Irish society".
He said: "Parents should not have to campaign for something like this. This issue should be grasped by the health board, but everyone seems to pass the buck. The service for autistic children, I believe, is a shambles. There is a failure to plan for the future, and I don't have any confidence in the health board to get it right."
The Independent TD, James Breen, yesterday described the situation as a scandal. "Respite care is very, very necessary, and the time for talking is now over," he said.
In response to the issue of funding, a spokeswoman for the health board said it was actively pursuing the Department of Health and Children to secure additional funding for people with disabilities.
The health board has recently established a regional child development service, the first of its type in the State. Its project manager, Ms Margaret Galvin, said yesterday that currently the board was developing a plan that would deal with the future care of all children with disabilities in the region, including those with autism.
Pointing out that the board was currently engaging with families and groups in the area as part of a consultation process, Ms Galvin said adequate respite care and personal assistance would underpin the new service.
She acknowledged that respite care was seen by the board as an essential component of the child development service for families, adding that there had been a positive response to the consultation process, and the framework would be in place by August.