PARENTS of children with profound intellectual disabilities who receive respite care from a Southside service have claimed the quality of their lives will deteriorate significantly if cuts are implemented.
The Angels Quest respite service, run by St John of God Carmona Services at its centre in Glenageary, provides respite care for the families of around 150 profoundly intellectually and physically disabled children.
Due to a cut in funding from the HSE and the ongoing moratorium on recruitment in the public service, St John of God Carmona Services has opted to close its existing overnight respite service from Monday to Thursday.
The two emergency beds that were previously available at the centre will also be cut and all service users’ respite allocation will be reduced.
David Girvan, a spokesperson for the recently formed Angels Quest Families group, said the cuts would place increased pressure on parents who already care for their children on an almost constant basis.
He maintains that the cuts will involve a 77 per cent reduction in the existing service.
Michelle Taite, from Shankill, who suffers from back problems and arthritis, is the mother and sole carer of her intellectually disabled daughter, 12-year-old Dana, who suffers from Angelman Syndrome.
Common features associated with the syndrome include severe speech impairment, problems with movement and balance and recurrent epileptic seizures. Those who suffer from the syndrome require life-long 24-hour care.
Dana currently receives respite care for one day and one night a week, two weekend days a month, and one weekend a month. Michelle said the cuts will mean that she will only receive the service one weekend night and one full weekend between now and Christmas.
“The service is my lifeline if I need to go anywhere or do anything,” she said. “I am suffering with back problems and I have just been diagnosed with arthritis in my hip as well. My daughter needs 24-hour care seven days a week. She can’t be left on her own at all.
“As it is I don’t have a personal life as such,” she added. “I have never been able to take a holiday since she was born. But as far as my own medical health is concerned, there are appointments that I am not going to be able to make, especially if they are scheduled in the morning because I have nobody else to look after Dana.”
In the Dáil last week Deputy Richard Boyd Barrett (PBP), called on the Tanaiste Eamon Gilmore to reverse the cuts.
“What they [the families] need is a commitment that the staffing and resources will be provided in order to maintain the Angels Quest 24-7 respite service for these people who desperately need it and whose lives will be devastated if the cuts go ahead,” he said.
Deputy Gilmore responded by noting that management at St John Of God Carmona Services had agreed to meet the parents of children who receive the service this week (Monday, October 15).
“My primary concern in this issue is to ensure that the best service is provided,” Deputy Gilmore said. “That is why I believe that the best way to deal with this issue is for the meeting, which the management of the services has offered, to go ahead.”
A spokesperson for St John of God Carmona Services said they were committed to continuing to support families.
“We will work with them in looking at how we can best provide services within the resources available,” the spokesperson said.
A spokesperson for the HSE added: “The HSE will continue to work closely with St John of God Carmona Services to ensure available resources are used in a creative and flexible manner in order to be responsive to the needs that present.”