Disability carers are getting one night off a year as chronic respite bed shortages come to a head
Jean O’Sullivan, chair of the parents committee at St Francis Special School in Beaufort and the mother of Michael, who attends the school, said many parents are completely burnt out from caring 24/7, with little hope of any time off.
There are currently eight respite beds for children in the entire county, with four in north Kerry and four in the south. Each house operates seven days per week with planned closures during the year.
Jean cares day and night for her son Michael, who has complex medical needs, but feels she is lucky because she is still able to get few nights off per month. However, recent demand has begun put services under further stress and she is starting loose what little time off she had.
“It is a scandal, what’s happening,” said Jean, “families are on their knees and it’s heartbreaking.
“Our children are in 24-hour care and we aren’t getting a break. Parents are getting to the point where they’re worn out and they’re in a position that they can’t look after their children anymore.
“The most vulnerable in the county are being forgotten about. These families are literally just trying to keep things together…some of them are up all night and they’re not getting any sleep.
“We’re in a crisis…I don’t know how a lot of families are coping.”
Demand is higher still for adult respite services which are also facilitated by only two respite houses countywide, with some additional capacity provided by Kerry Parents and Friends Association.
Jean said most families caring for adults can expect to secure a respite bed only one night in an entire year. She and other parents dread the day when they must look for support in the county’s stretched adult services.
“The adult services across the county are not fit for purpose anymore,” said Jean.
“Most of them are at full capacity and only provide a bit of a break through in-home support hours.
“Most families within the adult services are getting one night a year of respite…how do the people in power expect the families to keep going without adequate supports and adequate help? We need more respite houses in the county.”
A strategic plan is currently being prepared for St Mary of the Angels site in Beaufort, where St Francis Special School is located, with potential for future expansion of services there.
However, the completion of the study is a long way off and Jean warns that families cannot wait.
“We need them to open the gates to St Mary the Angels and to let respite go ahead there.”
“You’re looking at 16 months minimum before this report is done and families don’t have that time. They just can’t stay going the way they are.
“The numbers of children with disabilities and the numbers of families seeking help is increasing every year. I don’t have those figures of what’s ahead but we just know that the numbers are astronomical.”
Jean feels let down, in particular, by Kerry TD and Minister for Children, Disability and Equality, Norma Foley, who she believes has “abandoned families”.
“We’re in a crisis and we have the sitting minister for children and disability doing nothing for families,” said Jean.
“My phone never stops here…the amount of people that reach out to us because they’re looking for respite and we can’t do anything for them because the beds aren’t there…all I can do is listen and advise.
“She [the minister] has left the people to carry on. And that is the bottom line…she must be called out on this because when everybody was going for re-election, disability along with housing was top of the agenda. Every person that knocked on the door that came to the house, it was all this step change that was in place and now there’s nothing being done.”
Councillor Tommy Cahill said he had been listening to families and urged HSE to be more transparent with their funding strategy.
He said there had been a near 100pc increase in funding for respite services in Cork and Kerry since 2019, but he felt the reality on the ground didn’t reflect it.
“I used to work in a special needs class, it’s very full on,” he said.
“You would be wrecked after a day of being in a special class, but imagine being a parent that has to care for a child or adult that needs 24/7 care…I’ve had several cases where people have come to us and said our marriage has broken down because of the amount of strain or they’ve had mental health issues.
“It’s hard to believe we’re in this situation with it in 2026. We’ve submitted quite a number of parliamentary questions and they’re not been forthcoming with the statistics…we need clarity on where that money is going.”
Cllr Cahil cited the example of one facility which had a full roster of staff but hadn’t received enough funding to fully utilise them and employ them full time.
He also argued there was “lot of scope” to build on the grounds at St Mary’s of the Angels, adding that the grounds were donated by a family who specifically wanted them to be used for people with disabilities.
The HSE South West responded that they were ‘acutely aware’ of the demand for respite services in Kerry and have significantly invested in respite services in recent years.
The health service is spending €25 million national this year on the provision of more overnight capacity and day respite, and to address the issue of regional differences in the availability of respite services.
“We continue to invest in respite services, proactively seek alternative respite models, and use all available funding to provide respite services for all children and adults who need them,” they said.
“We are working with service providers to create new residential and alternative respite supports for children and adults.”
Minister Foley did not respond directly at the time of going to press but announced in the meantime that HSE South West is in advanced discussions about the provision of two new respite houses in Kerry.
She said respite provision was a ‘vital resource’ for families and praised the work of the HSE South West to expand respite in Kerry.
“I secured a record budget of €3.9 billion for disability services in Budget 2026 and I am absolutely committed that this funding be used to provide timely and appropriate supports to families of people with disabilities that need them,” she said.
New investment in Kerry includes the recently commenced weekend respite club for children, providing respite to approximately twenty children on a rotational fortnightly basis. Additionally, a number of families have been provided with bespoke respite arrangements to support them in response to specific challenges.
Minister Foley also recently announced the first-ever dedicated National Director for Disability will be recruited in the HSE, as well as six new Regional Disability Leads in the health regions.
“This is the first year of a five-year term in government working to deliver better disability services, including respite,” said Minister Foley.
Funded by the Local Democracy Reporting Scheme