Families fear closure of vital respite care
Solas respite care is under review and the cutbacks mean patients now have nowhere else to go
A mother of a severely disabled 19-year-old has revealed she has only received one night's respite care so far this year, and just 10 nights in total for 2016.
This was despite written reassurances from the HSE that she qualified for at least 6 nights respite a month. Carmel Branley from Collooney now fears that the Solas respite care service where her daughter Clara attends may close for good.
The state of the art, purpose built facility was opened in 2009 and provided much needed respite care for families across the North West for the past seven years. But a question mark now stands over the future of the facility. Staff cutbacks has resulted in the Ballytivnan based centre not offering respite to parents who so desperately need it.
Carmel explains: "The manager of the centre rang me two weeks ago to say it is not offering respite as the facility is currently under review."
She adds that there are fears among parents who rely on this vital service that the plan for Solas is to transform it into a residential facility.
"That means only a certain amount of people will benefit. Residential care is not an answer for us. We are just looking for a few nights off a month."
Looking after Clara is a 24/7 job as Carmel explains: "It is like having a 19-year-old toddler in the house but the problem is she is so strong now and the older she's getting the stronger she is. Clara can be very aggressive and she has never slept through the night in her life. I thought the older she got, things would start to get easier, but in actual fact they have got harder. She does not sleep, she will not go to bed unless I get into the bed with her, she runs out and switches on the TV, she is very difficult to settle."
Clara displays classic toddler symptoms because she does not know any better. "The HSE are fully aware of how difficult Clara is to manage. She absconds. She has left the house and ran out onto the road in front of cars. We have to keep all of the doors locked. She has no concept of danger. She needs 24 hour care."
Clara is also non-verbal and is not toilet trained. Although she attends Cregg House day care facility for people with intellectual disabilities, she is at home every evening and Carmel says without respite, the rest of the family suffer.
"I have two other teenage children and a husband and we can never even get to go on a family holiday - just a week would be a nice thought," she says.
Civil Servant Carmel says every evening is spent looking after Clara.
"When Clara was younger we had a lot more services in Sligo available to offer us respite. She used to attend a HSE centre on Pearse Road - but that is now a residential unit. All we are looking for is the odd night and maybe one week in Summer.
"I was promised six nights a month and I was told funding was set aside for that, but in reality I got about 10 nights in an entire year, and that is after me begging for it, not them offering, and we got nothing over any holiday period.
"Since the start of this year we got one Wednesday night in January. Clara is no longer a child and compared to what we would have had things have got very bad over the last two years. And it is now we need respite more than ever because of her strength," says Carmel.
Dad threatens to picket HSE
John Doyle from Grange is in a similar situation to Carmel. The father of four has a severely disabled 21-year old son. Evan has spastic quadriplegic cerebral palsy and is non-verbal and double incontinent. The last time the Doyle family got respite was one night in May 2016.
John has tried to organise a weekend away for his wedding anniversary and despite six months notice the HSE at Solas could not guarantee him a couple of nights respite.
"I rang in January looking for a weekend in late May and I was told 'do not book a hotel or plan anything because if one member of staff goes sick we will be ringing you to cancel'," John says.
He has been fighting for respite since 2008, when he says things got really bad.
"We must have got about 20 nights respite since 2010. It is shocking. We are not looking for much. Looking after Evan is 52 weeks of the year, 7 days a week. We used to get 3 to 4 weekends a year in the good times at a unit in a facility on Pearse Road. Then Solas opened for respite for children but it soon became respite for adults too. We thought the service would improve with this 1.4million euro worth of a building, but it deteriorated.
"If we could get a couple of weekends a year, we would be happy. But we can't even get that. Unless you are living with this you can not imagine how bad the service is.
"We cannot afford to get sick. I was in hospital for surgery last year and my wife could not even visit me as she had to look after Evan."
Evan needs full-time care. He cannot do anything for himself. As John explains: "It is like having a one-year-old child in front of you. We have to feed, wash, medicate, dress and change Evan."
He admits: "It's hard work when you do not get a break. We can't do simple things like go for a walk on Streedagh beach or have a lie in on a Saturday morning or plan anything."
Behind the scenes John has been desperately trying to get some respite for his family. He has written to the HSE on numerous occasions: "They will not even answer my emails. They just do not want to interact with us. We do not exist. I got one email response from the HSE saying they were reviewing our case."
He has even written to the Minister of State for Disability Issues Finian McGrath TD but says he got a standard response. "He said he cannot get involved in individual cases. I know of two other families who got the exact same letter. The HSE are just fobbing me off. They massage figures to make their services seem better than they are. I have had enough and my next move will be to set up a picket outside Markievicz House."
As for the immediate term, John had plans to go to his first cousin's wedding in Cork this month. He requested that weekend respite in December last year but has had to RSVP that he won't be able to attend.
John also fears that the respite care in Solas is being replaced by residential care.
"Without Solas, there is no other alternative for respite in Sligo. It's been practically non-existent for years."
Local TD Eamon Scanlon last week raised the issue in the Dáil. In a question addressed to Finian McGrath TD he asked: "Can the Minister ensure that the HSE does not reduce the availability of services at the Solas respite centre in Sligo?"
His response was to arrange for the question to be referred to the HSE for direct reply to the Deputy Scanlon. Eamon Scanlon is still awaiting that reply but he did say: "Finian McGrath told me he had provided specific funding for respite services in Sligo. Yet this does not seem apparent as Solas is both under staffed and under resourced."
He went on: "I think there is a national attempt to get away from respite care to privatise it. The HSE is proposing to give cash grants to families for respite so they can buy care in the home, but this is not respite. These are vulnerable people who deserve a break and I intend to keep this issue on the agenda until we get proper answers."
Deputy Scanlon adds: "This is an extremely important service for parents of children with a learning disability or autism in the Sligo-Leitrim area.
"Demand for these services has increased year on year, but now there are serious concerns that cutbacks are imminent.
"I have had a number of parents contact my office, distraught at the prospect of losing respite hours. It is extremely regrettable. These cutbacks will deprive families in the North West of essential respite.
"I have been in touch with HSE management who have told me that they have applied for funding and are waiting for a response. I am calling on Minister Simon Harris to examine this case and ensure that funding is allocated to this much needed service"
Parent protest at Solas
Parents who use Solas yesterday (Monday) gathered outside the Ballytivnan facility to protest at the cutbacks in the service.
In a statement the HSE confirmed: "In the past five years Solas has experienced a significant decrease in resources due to retirements and resignations and alternative arrangements have had to be made."
It continued: "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. In 2016 there were a total of 28 families supported by Solas Respite Service.
"A reconfiguration is due to be finalised in the coming months and all options are currently being explored. In the interim period on an individual basis, families are currently being supported through alternative arrangements of increased packages of home support."
The statement concluded: "The HSE can confirm that Solas is currently not being used as a residential facility."