St Gabriels Childrens respite house for children with the most severe, life-limiting disabilities remain unopened despite been completed 12 months ago. Picture: Arthur Ellis
€2.9million St Gabriels Childrens Respite House remains closed one year after completion
A purpose-built €2.9million respite house for children with the most severe, life-limiting disabilities remain unopened despite been completed 12 months ago.
Lack of funding for the St Gabriels Childrens Respite House, located in Mungret on the outskirts of Limerick, means that children with significant physical disabilities in need of overnight respite care must be driven to Dublin to avail of an overnight break. Parents of the children say is untenable and unfair, not least with children who are on oxygen, suction and/or PEG fed.
The St Gabriels Childrens Respite House, which was built on time and on budget and comprises six beds, would add 2,184 new respite bed nights to the Mid-West for children’s residential respite.
A briefing of media and General Election candidates today at the centre heard what was described as heart-rending testimonies of parents.
Said Lorraine Tierney, mother of 13 year-old Dylan, who attended today’s event with her: “What the people at St Gabriels have done in developing this centre for our children is incredible. At the moment, though, it is so frustrating for parents. I drive by here daily clinging onto hope that it will be open, and I shed tears.
“We are being told we have an economy on the up and you would imagine that the first to be looked after would be the most vulnerable. We are so desperate for this and you feel like crying every day because you see the Respite House, which we’ve been waiting for so long, built and ready for us. But there’s no money from the government. We love our son dearly, but it is round the clock care, getting up even every night multiple times due to seizures or to reposition Dylan as he is non-mobile. Even this morning before this event began, he had up to 15 seizures.
“We’re not on our own. There are so many others with the same story and we’re all just hoping and praying that what is built here will finally open. Day by day, however, our faith in the system is being challenged and our hope eroded.
“In the broader scheme of things, €1.3million is not a huge amount, not least when it comes to the most vulnerable people in our country. That type of money is being found week in and week out for projects, not least in the run-up to the election. We are so grateful to St. Gabriel’s team. They are incredible and what they have done here for us is mind-blowing. But the concern I have as a parent is that regardless of the fact that the children involved here are the most vulnerable in society, we are small in number and clearly don’t have a voice. It would appear we are not being listened to.”
Her comments were echoed by Sr. Helen Culhane of the Children’s Grief Project, a supporter of the project. “In the 1930s, Gandhi said that the true measure of any society can be found in how it treats its most vulnerable members. That was a long time ago, but I think it’s more pertinent than ever today.”
The HSE locally has granted one-off funding in 2019 to appoint a manager and to buy essential equipment at a total of €195,000 but this is just 15% of the overall €1.3m cost of operating the centre for a full year. The manager – a Clinical Nurse Manager III – is now in place and working full-time on the detailed application to register the house to HIQA but no other staff have as yet been put in place.
“The respite house cannot open,” CEO of St. Gabriel’s Marie O’Leary stated, “and will not open until a budget is provided. €5 million in additional respite funds were announced from Budget 2020 but none of the monies are coming St. Gabriel’s way.
“We are so proud of what we have achieved here. We have put a state-of-the-art facility in place to provide much-needed respite care for, undoubtedly, the most vulnerable young people in our region today. We did this after thorough consultation with parents, who said it was the number one need they have today. And we also had many, many conversations with the HSE locally who left us in no doubt as to the need for this centre and, indeed, have validated that by giving us funding last year for a manager.
“However, at this stage there is no additional national funding for new developments in residential respite for children with significant physical disabilities who have additional complex medical needs in the Mid-West. This is despite an additional €5 million for respite services being made available in the last budget. We have seen none of that.
“The problem is that the HSE locally, who have been very supportive of the Respite House development, just don’t have the funds. Acute-needs projects such as this are funded year in year out across the country from the HSE nationally, but nothing has come our way. We have an amazing, purpose-built facility completed, 120 children across our region with the most severe life-limiting challenges who badly need it and yet it’s unoccupied.”
She added: “The need for this centre is so grave. Parents become exhausted as children with such complex needs require 24-hour daily presence and care. We have parents attending our service who never get a night out together. They are not able to even do everyday things like watching their other children in school plays, sports, etc. together because one of them absolutely has to be at home all the time.”
The new Respite House is totally in keeping with the Sláintecare 2019 programme. When the Minister for Health published the Sláintecare Action Plan 2019 Laura Magahy, Executive Director of the Sláintecare Programme, said: “Slainte Health Care 2019 will see us putting in place some essential building blocks to ensure that by the end of the reform programme, the right care is being delivered in the right place, at the right time.”
The CEO added: “This is what this Children’s Respite House is trying to achieve. The whole premise of this new service is to keep children in their own homes in the long term and the respite house will provide overnight breaks from time to time and allow their parents to recharge and get going again.”
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