The chief executive of St Michael's House talks to David Labanyi about caring on a budget
Earlier this month, the Taoiseach turned the sod on a €3.7 million swimming pool designed for people with some of the most severe disabilities in the State.
Paul Ledwidge, chief executive of St Michael's House, says the pool was commissioned after people with severe disabilities in St Michael's House were asked what would most enhance their lives. "This is what they wanted above all else," he says.
Despite the funding for the pool being made available, the sector is under pressure due to a lack of resources. St Michael's House caters for more than 1,400 people with intellectual and physical disabilities, 600 of whom are under 18. It is one of the largest disability service providers in the State. Ledwidge says trying to secure funding for residential places is a struggle and one that frustrates him. Residential care is used for people whose primary carer, usually a parent, dies or is no longer able to provide care.
"This year we got funding for 14 residential places. But already this year, 14 parents have died," he says.
"Last week I was trying to explain to a widow of 85 why we don't have a place for her son. She has looked after her son for 57 years. I assured her that her son would not be left on the side of the street when she dies - but, the truth is, there is no place for him. Right now, four people whose parents died recently are blocking our respite beds. We just cannot provide residential care except in absolute necessities."
Nationally, some 1,900 people are awaiting a residential care place, 357 of which are on the waiting list for St Michael's: "There is no slack in the system. The pressures are huge, particularly for residential care which is a very expensive business, costing about €100,000 per annum per client." For 2007 he has requested funding for 70 additional residential cases, but he expects to get funding for only 15.
Ledwidge is also frustrated by what he describes as the arbitrary nature of value-for-money-cuts. "They don't come in and audit your services. That would be fair. No, they just say we are taking X amount off your funding. Basically they reduce the amount by about 5 per cent and say 'go and provide the same service with less funds'.
"The value-for-money-cuts are not unique to St Michael's. Everyone in the health service is suffering them," he adds.
About 95 per cent of the €68 million required to run St Michael's this year comes from the State, with fundraising and voluntary contributions making up the remainder.
Ledwidge says the HSE has still not made good on an agreement to fully staff St Michael's. "The HSE accepts we are short 59 staff, but won't give us funding for them."
St Michael's House aims to provide "cradle to grave" services for people with intellectual disabilities and its focus is on integrating people with the community. Its services include education, assistance with employment, recreational activities and even specialised care for Alzheimer's sufferers.
"You probably wouldn't recognise a St Michael's House if you passed one and that's the intention. We don't want a big sign on the door saying, 'people with disabilities here'. It is about giving people the opportunity of living as normal a life as possible and integrating with their community."
The organisation has more than 140 premises across the northeast and south of Dublin.
St Michael's House was formed in 1955 after an advertisement placed in The Irish Times by the mother of a boy with Down's syndrome led to the formation of a parents' group.
Since then St Michael's has steadily grown in size and in the services it provides. "The ethos and the concept is 'normalisation'." The purpose is to assist people with a learning difficulty to be able to play a role in society, Ledwidge says.
About 150 St Michael's clients attend standard schools and a further 200 are in outside employment.
The decision-making process behind the swimming pool - asking the clients rather than just asking staff what they wanted - is integral to this ethos: "We are trying to set up the organisation in such a way so that we devolve power from the centre." Parents remain centrally involved in the running of services at a management level, holding half the seats on the board.
As part of its expansion, St Michael's House set up a college in 1992. "There was no specialised training for staff at that time so we set up the Open Training College. It's a distance learning system. We employ international experts to design the course modules."
Students can study for a degree, diploma or certificate and the qualification is conferred by the Higher Education and Awards Council.
Ledwidge feels that sometimes the organisation is so focused on what it is doing, "we tended to forget to tell people about it. For example, we were given a two-year quality accreditation by the Council on Quality and Leadership last year. That is a great achievement."
Last November, St Michael's received publicity of a less welcome kind following a report into the death of a man shortly after he was transferred from St Michael's to Leas Cross nursing home. While Ledwidge says the report is flawed, and is unhappy with much of the subsequent press coverage, he says "a huge issue remains around the transfer of patients, when adequate facilities are not available in-house".
Given the resource demands of the sector, Ledwidge says he would not object to private sector involvement, once the "services being provided actually met the needs of the people with disabilities. However, if you are talking about putting 20-30 people into one location and providing a very cost-effective service, then I would have serious objections."