We’re bursting at the seams because of our age and health problems. This isn’t about passing off our problems, it’s about refuelling in order to be able to cope again. We’re at breaking point.
A NUMBER OF elderly parents in north County Kerry have slammed the lack of respite services available for their adult children who are living with disabilities.
In the Listowel area of the southern county, there is now no dedicated respite centre for parents in such a position.
Such care exists to enable full-time carers to take a short break, a holiday, or even just a rest.
The site of a former respite centre in Listowel known as the Haven, was recently redesignated primarily as a centre for those dependent upon full-time care.
The HSE purchased another four-bedroom property in the Kilmorna area of the town last year for €350,000, however that property remains vacant a full nine months later.
66-year-old Ann Kelly hails from nearby Ballybunion. Ann’s 30-year-old daughter Laura has Down Syndrome. Three weeks ago Ann, along with the other parents in her locality in the same position, were told at a meeting that the Haven would no longer be available to them as a respite service.
“We don’t want respite for holidays or days out – these are just to try and gather strength to do another few weeks,” she says.
We love our children with every bone in our bodies and have spent every day of our lives since they were born fighting for their rights. We are now in a position where we are scared we will get sick or die because of what will happen to our children.
One lady at that meeting said she prays her son dies before her. That’s where we are. There is an awful tragedy waiting to happen in north Kerry.
The lack of respite care in the area, and the fact that the Kilmorna property stands vacant, has been put down to a lack of funding by the HSE (the Department of Health has firmly put the issue in the executive’s court).
Respite services across Kerry are run by a voluntary organisation called Kerry Parents and Friends.
“The HSE is continuing to engage with Kerry Parents and Friends to explore all options to minimise the reduction in services,” a HSE spokesperson said in response to a request for comment.
Regarding the house at Kilmorna that has been left empty, the spokesperson said: “Unfortunately, HSE Disability Services were not successful in securing revenue funding in the 2017 budget to open this service.”
The HSE will continue to work to secure the necessary funding to open this service.
“The Community Healthcare Organisation for Cork/Kerry acknowledges that the existing level of respite in Kerry does not meet the need,” they added.
Funding issue
Director of Services with Kerry Parents and Friends Maura Crowley says the situation is “one for which funding should be made available”.
“It’s regrettable, we’ve a high need for respite across the county,” she says. “We’re working with the HSE to open Kilmorna. We’d like to open in south Kerry as well but it’s a funding issue.”
Crowley says that much of the trouble comes down to regulations introduced in 2013 regarding the treatment of patients with intellectual disabilities.
“As an organisation we’d try to organise the respite in creative ways. But now with the HIQA (Health Information and Quality Authority) regulations we can’t use someone else’s bed for a weekend for example,” she says.
We’re hamstrung now, we’d always have been able to pull something out of the hat before but now… They brought in these regulations and they didn’t look at the impact that they would have.
Local Sinn Féin TD Martin Ferris meanwhile describes the situation as being “deplorable”.
“I’ve raised this a number of times in the Dáil. If the people responsible for this sat down with the parents,” he says.
These people, a lot of them are elderly, they’ve loved ones in their late 40s and they want a small bit of respite care and it’s just impossible for them to get it.
Of Kilmorna sitting idle, Ferris says the estimated €600,000 it would cost to run the centre for a year is “very, very small money” (by contrast, the HSE has spent €3 million upgrading its own headquarters in Dublin in the past five years).
“It might not solve everything, but it would be a big help. Certainly it would at least make a little bit of difference,” he says.
Meanwhile, the older residents of north Kerry are left in a sort of limbo.
“You would wonder, is there a policy not to provide respite going forward,” says Kay Sayers, a 57-year-old mother to 33-year-old Seán who until recently received respite care at the Haven.
“Seán had a great rapport with the staff. When and if respite becomes available again we will have to start from scratch,” Kay says.
It’s a huge issue for those with intellectual disabilities. Familiarity is so, so important.
In our situation one person has to work, one person has to stay at home, it’s like mobilising an army when you’re caring for someone with intellectual needs. You rely on respite for down-time – it’s just not feasible to get someone in for a one-off.
“We’re not parents that know one another,” agrees Ann. “We’re a group of about 20 parents with special relationships in place, because we have adults that have special needs. That’s the only way we can handle the situation.”
At that meeting, there wasn’t a dry eye in the house. Over 70-year-olds with grown men and women in their home and they’re not able to look after them.
Respite isn’t a luxury – it’s a necessity. It enables carers to keep their loved ones at home, without it you’d have a lot of disabled adults in full-time residential care, and that would cost the State a hell of a lot more.
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