THE HSE HAS made a significant concession regarding respite care for parents of adult children with disabilities in Co Kerry.
However, the health body’s plans for such care for the rest of the country are less certain.
In March, TheJournal.ie reported on the status of respite care in north Kerry. There, many elderly parents had slammed the lack of such services being available for their adult children who are living with disabilities.
Typically, such care exists to enable full-time carers to take a short break, a holiday, or even just have a rest.
Much of the disquiet surrounding the state of play in Kerry was aimed at a building that the HSE had purchased last year at Kilmorna in Listowel, to be used in replacing the loss of separate respite services at The Haven in the same town. Nearly a year later that house remains vacant.
“Nothing has changed, we’re still being told there’s no money available,” 66-year-old Ann Kelly told TheJournal.ie this week. Ann is mother to 30-year-old Laura, who has Down Syndrome.
Ann and her fellow parents of children with disabilities had decried the lack of services available since the closure of The Haven’s respite functions (it now works as a residential centre only), arguing that occasional respite was what ‘gave them the strength’ to carry on caring for their children.
Early this week, Ann described an “underlying current of the closure of respite”.
“I think the idea of respite is being changed and very quickly without any word with us,” she said.
That situation has now changed slightly – the HSE is to open Kilmorna for respite services, at weekends only at first, “in the coming months”.
“There is a significant level of need in Kerry for respite, and we acknowledge that this need is not being fully met at the moment,” spokesperson said on Friday, acknowledging that the outcome had resulted from “sustained work and engagement” on behalf of parents and local care group Kerry Parents and Friends (KPF).
While this funding will not fully meet that existing need, it is a significant step forward and will allow us to meet the most urgent of the existing needs.
“We have the key in the door now,” said Ann in response to the news. “But now the fight goes on to get it open full-time.”
No fixed opening date has been announced for Kilmorna. And movement though it may be, the four beds at the Listowel house are all that will be available for the whole of Kerry, according to local parents.
A HSE spokesperson told TheJournal.ie that this is not the case, and that eight additional beds (provided by St John of Gods and KPF) for respite services for adults with intellectual disabilities, are available across the county. However they could not confirm where those beds are available.
Less clear
Elsewhere in the country, the HSE’s plan for respite is less clear again.
Sligo native John Doyle’s 21-year-old son Evan is quadriplegic and living with cerebral palsy.
Solas Respite Centre in the western town was first opened in 2009 at a cost of €1.35 million. Last year, it became ‘virtually impossible’ to get any kind of respite care, says 46-year-old John.
“May last year would have been the last time we had any respite,” he says. “Even then we were told ‘don’t go anywhere, because if anything happens to the staff you’ll be called’.”
Last December we got word that Solas was going residential. The HSE told us that no decision had been made. We know that wasn’t true because now Solas is closed. If we want respite we have to travel to Carrickmacross (in Monaghan), which is over two-and-a-half hours away. That’s just not realistic.
“The whole situation here is very poor,” says local Sinn Féin TD Martin Kenny. “Respite for older people here has gotten very hard to get. It seems to be that going forward the HSE thinks respite should happen at home, which isn’t the same thing. There has to be a sense of providing families with a break away from the stress and tension that comes with these difficult lives. It might work in some cases, but not all.”
John Doyle believes services in his area are ‘going out to tender’. It’s a belief the HSE has now confirmed.
“Respite facilities within the Sligo Leitrim area are currently being reconfigured in order to provide a suitable respite service which will respond to the needs of all the people,” a spokesperson for HSE CHO1 (Community Healthcare Organisation) told TheJournal.ie.
Arrangements are now in place to outsource the respite service to an external service provider/non-statutory agency that has the appropriate professional capacity, experience and expertise to provide this service. This will involve the HSE engaging in a tendering process with relevant non statutory agencies. It is expected that this process will be finalised by the end of the third quarter in 2017.
And in the meantime?
“In order to address families need for urgent respite, arrangements have been made for an external service provider in Carrickmacross, Co Monaghan to provide respite in the interim.”
Carlow/Kilkenny
Many of the issues surrounding respite care in Ireland stem from existing centres not matching revised HIQA (Health Information and Quality Authority) standards, with beds vacated by residents who go home at weekends or for holidays no longer considered as being acceptable for respite care.
The Carlow/Kilkenny area has been without a dedicated respite centre since the closure of the Tír na nÓg centre in Carlow town in December 2015.
35-year-old Linda Comerford has four children with her husband. Michael, her eldest, has cerebral palsy. He is profoundly deaf with moderate intellectual disabilities. Linda has never experienced respite care. Michael is on a waiting list for such care, a list that is getting longer.
“We’ve been led down the garden path a bit,” she says. “A developer in Carlow donated a property purely for respite. An architect donated his time and energies, but the HSE wouldn’t staff a house that wasn’t theirs.
Then the idea came up before Christmas to rent a house in Bagenalstown for two years for children’s respite. We were told that signing the lease would be the easiest part, that the Health Ministers were looking to fast track HIQA approval, that it would be done in four months. Then two weeks ago we were told we wouldn’t be getting that house.
And we’re back to square one. Now the HSE is telling us they’re going to build a house for 2020. But we’ve looked up the service plan for that house – there’s no mention of either temporary or permanent respite in there. Simon Harris and the HSE categorically promised respite last September. It’s like we’re offered a glimmer of hope, and then we have it swiped out from under us. Families are devastated at this stage. We’re still without a vital service. We feel we have been strung along and treated appallingly.
We are families who care full-time care for our children. We are tired and burnt-out. We are only asking for a small bit of help.
“I was at that meeting two weeks ago,” says local Fianna Fáil Senator Jennifer Murnane. “I saw women crying over this. For so long they had heard about this house in Bagenalstown, and now that’s gone. I want to know who was at fault for this.”
At present, day-only respite is being provided at the Delta Centre in Carlow by the Holy Angels, the same group that had run the Tír na nÓg centre.
“We need overnight respite,” says Murnane. “To be told that we’d be open in the summer and then to hear it’s not happening, that’s just not on. The HSE says there’s money there, but sure if that’s the case why do we have to wait until 2020?”
“The matter of providing overnight respite services to families of counties Carlow and Kilkenny is of key importance to the HSE,” a spokesperson for Carlow’s CHO5 told TheJournal.ie, adding that it “has been challenging to source appropriate premises… which would be both compliant with HIQA standards and suitable for children”.
Regarding the failure of the Bagenalstown project, they say: “It was at all times understood that the external service provider (BEAM Services Carlow) owned the house in question. During this process it became apparent that the agency did not actually own the premises and, as such, the ability of the HSE to implement the agreement to utilise the premises for respite was compromised.”
As is the case in Sligo, the future of respite services in Carlow, the new house that has been earmarked to go live in 2020, has been put out to tender, with Enable Ireland securing the deal. In the meantime, the HSE “will continue to work in close collaboration with Enable Ireland to develop alternative models of overnight respite, ie holiday breaks and in home respite”.
Linda Comerford is not hopeful about the new project. “It’s not unusual for the HSE to buy a house and then leave it empty,” she says.
Or to use it for two or three years for respite but then transfer it to residential. They seem to be pulling respite out from under people’s noses across the country.
Long term plan?
All of which begs the question – what is the HSE’s overall plan for future respite services?
Martin Kenny suggests that in-home care is what’s on the table, “probably because it will cost less”. The opening of Kilmorna at weekends in Listowel would seem to contradict that as a national strategy however.
Is there a systematic doing-away-with of traditional out-of-home respite?
“I’ve heard that, and parents are worried about that,” says Marie Lenihan, chairperson of Kerry Parents and Friends.
I know HSE Kerry has been looking at other areas – the host family initiative for instance. And people may not want it, and one particular type of respite doesn’t suit everyone, but it does work well in children’s services.
It’s true it’s much different for adults. But when you look at all kinds of care, it can’t be one size fits all. I don’t know if there’s a larger plan from the HSE though – if there is I haven’t heard of it.
TheJournal.ie queried the HSE at a central, rather than regional, level as to what the executive’s plan for the future of respite actually is.
“As a result of a significant number of respite beds being utilised for long-term residential placements, the numbers of people with disabilities in receipt of residential respite services and the corresponding number of respite nights are down against previous activity,” a spokesperson said in response, adding that “the HSE is very much aware of the importance of respite service provision for the families of both children and adults with disabilities, including the impact the absence of respite service provision can have on other services”.
There are ‘changing needs’ due to the increase in the age of the disability population.
“The need for increased respite and residential facilities is acknowledged,” they said, adding that responding to that need would have to be achieved “in line with the budget available”.
Exactly what shape that response will take remains to be seen.
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