PARENTS of disabled children are ‘absolutely terrified’ that respite support, a service that makes their lives bearable, is at risk because of Health Service Executive cutbacks.
Eamon Walsh, chairman of the parents’ group Hope 4 Disability, has been fighting for years for the retention of services provided by the Brothers of Charity in Galway.
The charity provides community based services for just under 1,100 children and adults with intellectual disabilities in 130 centres around Galway.
It has now used up its cash reserves and fears another €2m in cost savings by the HSE will force the immediate closure of its respite services. It has also warned of job losses.
Mr Walsh’s son, Peter, 12, has cerebral palsy, autism and epilepsy and requires round the clock care. Peter stays in a respite centre in Galway for one night a week and over a weekend every two or three months.
Mr Walsh said his son had challenging behaviour. “He is quite difficult to manage. He needs 24-hour care,” he said.
“Respite care for our son is essential – he needs the break and we need the time to recharge the batteries. It’s not a lot of help but the thought of that being reduced or taken away from us is terrifying.”
“It is the only time we can spend time alone with our 15-year-old daughter, Kelly, go for a meal or a walk in comfort and not have to worry about Peter all the time,” he said.
Mr Walsh said the thought of respite services closing was very, very frightening for families.
“There are at least 100 families dependent on the respite services and dozens on the waiting list, some of them in urgent need. One lady has had two ribs broken by her 16-year-old son and cannot cope. It’s shocking,” he said.
“The children and adults I represent are really disadvantaged. We often talk about disadvantaged members of society but these are very, very vulnerable people. They can’t speak for themselves. They have no right to these services. They exist on a wing and a prayer and at the whim of the HSE.”
Frank Conaty’s son Matthew, is currently being treated in Our Lady’s Hospital for Sick Children and the respite service he uses may not be available when he goes home.
“We just cannot understand why we have been asked to shoulder this additional burden,” he said on RTÉ radio yesterday.
“It is the only break we have. We provide 24 hour care to highly dependent children and adults. It is exhausting work. It is work done with love and care but we have to have a break just to sustain ourselves.”
Respite care is provided for Matthew on one day a week and one weekend a month. Mr Conaty described respite care as his family’s safety valve.
“This is absolutely horrendous. In a modern Ireland, no matter how bad our economic situation, there has to be some way of protecting these most vulnerable people and their families.”
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