Disability Minister Finian McGrath has agreed to travel to South Kerry to view the centre for the intellectually disabled that parents desperately want to keep open.
St Mary of the Angels, which is run by St John of Gods, is planning to move its 78 high-need adult residents from bungalows on its Beaufort campus into the wider community.
They plan to rent houses in Milltown, Tralee, and Killorglin when they “decongregate” the residents.
However, most of the parents believe the transition into regular housing from a community will cause upset and emotional distress to their children.
Parents say that their children are used to their much-loved setting; and they will not have the services they need in isolated homes, scattered around Kerry towns and villages.
Ina O’Dwyer says her son Bernard will be “traumatised at being removed from his familiar surroundings” and will lose out on the “safety, security, and access to facilities” that St Mary’s gives him.
“Instead he will be isolated in a house, in a town, where he has no connections, friends or family. Familiar staff may also be gone, in all likelihood replaced by agency staff.”
But according to St John of Gods, the St Mary of the Angels centre is “not up to Hiqa standards” and is “inappropriate accommodation” for some residents who lack privacy. It also said in a statement that decongregation, a stated HSE policy nationwide, “would only be done if it improved the life of the individual”.
St John of Gods management said “the environment and group mix contribute to overcrowding which, in turn, leads to challenging behaviour among some groups”.
Another 41 St Mary of the Angels residents already live in the community but “12 of these are inappropriately housed”, according to St John of Gods.
At family forums, families expressed concerns their family members were not suitable for such a move and that many had lived most of their lives in the Beaufort campus, beyond weekends. They also complained St John of Gods was not communicating with parents. St John of Gods said decongregation was “being done on a phased basis through the use of community transition plans”.
The policy was defended by Mr McGrath in the Dáil on Wednesday. He said he wants to end the whole idea of persons with disabilities in institutions.
Mr O’Donnell regularly visits St Mary of the Angels when he performs in Killarney. In a video posted on the Radio Kerry Facebook page, he said he wanted to send “a wee message” to all at St Mary of the Angels: “I was really sorry to hear of the struggle you are having to keep the place open.”
On his visits, he said he was so impressed with the care everybody got, but more than that, with the atmosphere and the homely feeling. “I hope things will be allowed to remain as they are for many years,” he said.
‘Bernard will suffer’ due to policy
My brother Bernard Fitzpatrick is 40 and for 35 years has lived at St Mary of the Angels — coming home at weekends and for holidays, always smiling broadly on his return to Beaufort.
Bernard is a happy, loving person, with the purity of an angel. Due to brain injury at birth, meningitis, and seizures, Bernard is profoundly intellectually and physically disabled, requiring 24-hour support and care. He can’t talk and is spoon-fed.
At five years of age, my parents eventually managed to get Bernard a place in St Mary of the Angels. Before this, he couldn’t sit up on his own.
Through the love and care of St Mary’s amazing staff, Bernard learned to sit up by himself and manoeuvre a wheelchair. The village, with its acres of trees and landscaping, has a heated hydro-therapy pool, school, chapel, sensory room, and so importantly for Bernard and many of his friends, it has the scope and safety they need to travel freely on quad bikes, bicycles, and wheelchairs.
In a world that is too often far from safe, Bernard and his friends have a place they call home, that serves all their needs; and buses that take them regularly to local diners, coffee shops, concerts in the Gleneagle, trips to see Fungie, and much more besides.
Unfortunately for Bernard, his 77 friends, and us, their families, Bernard and his friends are due to be moved “into the community”.
Instead of the heated private pool that Bernard now enjoys at his home, Bernard’s dignity, I am told, is better served by him being bussed into Tralee to use the public pool. A hoist will be provided, I’m assured, and after a while the funny looks will stop and people will get used to it. Bernard is 40, he wears nappies, hates screaming children, and hates cold water.
I am not saying the “Time To Move On” decongregation policy does not have its place. For those who have the ability to enjoy “ordinary life”, it is the perfect solution. However, for my brother and his 77 friends, this policy is rubbish. Its aspiration to make Bernard and his extraordinary friends be “ordinary people, living in ordinary places” won’t work. He has thrived in his community and will suffer if he is taken away from what has been a very happy home for him.