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Irish Examiner
23-06-2025
- Health
- Irish Examiner
Young people do not belong in nursing homes
One man with early onset Parkinson's is climbing the Himalayas active, empowered and supported. Another is trapped in a care home among residents twice his age, paying €3,000 a month while his savings and spirit drain away. He can't even go for a walk out of the grounds without permission. I've met these men — both under 65 and both with lives worth living. The man living in a nursing home is not merely another wasted life, he is a person too. Prime Time Investigates exposed what we've known for years: the shameful institutionalisation of people under 65, leading to rapid physical and mental decline. Today, 1,227 remain in nursing homes. In 2025, the HSE asked for €8.5 million to relocate 40 people — sounds like progress, right? Until you realise only €4.8 million was allocated, enough to move just 24 people. Over four years, 104 people have been moved out of nursing homes, while 32 more are added every month (Wasted Lives Update, 2024). The maths doesn't add up — and neither does the morality. I've lived with early onset Parkinson's for a decade — a condition affecting 10–20% of people with Parkinson's, with members of our organisation symptomatic as young as 20 years old. With 18,000 living with Parkinson's in Ireland, as many as 3,600 people aged 18 to 55 are at risk of being sent to a nursing home should they experience rapid progression, or symptoms become unmanageable alone. This is not to mention the countless others living with neurodegenerative conditions. I've met people living this nightmare — like a man in his 30s with Cerebral Palsy, placed in a nursing home alongside residents his parents' age. With both parents in long-term dementia care and no community supports available, he was sent there. His fear? That he might never get out. And what about the families? Under the Fair Deal scheme, 80% of a person's assessable income and 7.5% of their assets per annum, are paid towards nursing home care. In the case of early onset conditions what happens to the mortgage, the family left behind, the children still in school? The financial devastation affects everyone. I'm lucky to have a supportive husband, four amazing children, family and friends. I'm doing my best to live well. But many I've met aren't so fortunate. They're institutionalised, cut off from vital therapies like physio, exercise, and neurology that could slow disease progression. Their savings vanish, they're isolated from peers, and their mental and physical health decline as their independence slips away, day by day. This practice is not new. Nor is it an accident. The Wasted Lives report in 2021, laid bare the systemic failings, and since this, the Government repeated promises to end the institutionalisation of young people in nursing homes. What do these promises mean to the young man in his 30s with Cerebral Palsy? Nothing. His life hasn't changed. The government has, but his reality has not. Slow erosion of dignity Having just retired from my role as a dementia adviser in Clare, I have seen how the system fails people. I've seen the heartbreak, the isolation, and the slow erosion of dignity. I've also seen community workers and healthcare staff stretch every resource and contact to find funding and support often forcing them to act first and ask forgiveness later in the hopes of a better outcome. It appears that the €4.8 million allocation is a one-off fund, as there is no indication that funding has been committed for the many years that would be required to solve this crisis. That is not a strategy. It is an insult. Especially when the Government claims its commitment to ending this practice. What happens next year? What happens to the hundreds still living in no man's land. Fiona Staunton: 'Having just retired from my role as a dementia adviser in Clare, I have seen how the system fails people. I've seen the heartbreak, the isolation, and the slow erosion of dignity.' We need real, long-term investment in community supports, as promised in Sláintecare. Clear exit pathways must be created for those already institutionalised and we need transparent, updated data on how many of these people are wrongly placed in nursing homes — including those stuck in hospital beds waiting for nursing home spots. We need full, informed consent — because I can tell you now, no young person willingly chooses this as a long-term path. This shameful practice must end. Being diagnosed with a neurodegenerative disease should not mean your human rights are stripped away. We are not statistics. We are people with hopes, with families, friends, and with futures. One of the myriad symptoms of Parkinson's is a softening — and even loss — of one's voice. However, on this issue, we will continue to shout until our voices are heard, until there are no more wasted lives. Fiona Staunton is a Board Member, EOPD Ireland Dementia Adviser (retired), The Alzheimer Society of Ireland Person living with Early Onset Parkinson's Disease Parkinson's Advocate
RTÉ News
17-06-2025
- Health
- RTÉ News
HSE warns of risk to nursing home exit plan for under-65s
The HSE has warned of a "significant" risk to its programme aimed at reducing the number of people under 65 living in nursing homes. In a letter to the Ombudsman's office, seen by Prime Time, the HSE said it requested €8.5 million to relocate 40 people under the age of 65 from nursing homes in 2025. It was allocated only €4.8 million — enough to fund just 24 moves to more appropriate settings in the community, including group or individual houses or a return to their family home. Separately, in an interview with Prime Time, Ombudsman Ger Deering criticised funding relating to younger people in nursing homes, describing it as "completely unacceptable." "We've seen time and again where ministers and Taoisigh come into the Dáil and they actually apologise for our failings in the past," Mr Deering said, "this is a failing that's happening today, and it's happening because the government is not putting the funding into this programme that is required." The current Programme for Government commits to ending the placement of young people with disabilities in nursing homes. A similar commitment was also made by the last government. But progress has been slow. The number of people under-65 currently living in nursing homes stands at around 1,227, the HSE told Prime Time. Since 2021, just 104 have been moved to more appropriate settings. The HSE letter from last November also said its budget for transitioning younger people from nursing homes to the community would be fully committed by March 2025. "With no security of funding," it stated, "the transition plans for many individuals will either cease or be delayed until further funding can be secured in 2026." The HSE was granted just 32% of its overall requested budget for under 65s, which includes services to those who are in nursing homes and for whom there are no immediate relocation plans. The HSE letter, written by an Assistant National Director of the HSE's National Disability Team, added that "the risk to the overall U65 programme is significant." There is widespread agreement that nursing homes are not appropriate places for under 65s, many of whom are in homes because of brain injury. In 2021, the Ombudsman's office produced a lengthy report on the issue called Wasted Lives. Then Ombudsman, Peter Tyndall, stated that "people who could and should be living in our communities, contributing to our society, are left without hope or futures." Medical professionals who spoke to Prime Time agree. "It is a completely abnormal situation for a younger person to be living in a nursing home often with much older adults who may have conditions like dementia," said Raymond Carson, Medical Director of the Brain Injury Programme at the National Rehabilitation Hospital. "People have said to me how lonely they feel, how imprisoned they are in that context, often far from home and without access to stimulation and support," Mr Carson added. Wasted Lives After the 2021 Wasted Lives report from the Ombudsman the HSE set up its U65 Programme to move younger people to more appropriate settings. Figures supplied to the Labour Party's health spokesperson, Marie Sherlock, in March showed that there were 176 people in nursing homes aged in their 20s, 30s and 40s. One of those is William Scott, a former truck driver who suffered a brain injury after a cardiac arrest in 2013. He was left with short-term memory problems, poor motivation and initiation, and limited mobility on his right side. Now 49, William has spent a decade in a Donegal nursing home which specialises in caring for elderly people with dementia. He is neither elderly nor does he have dementia. He says he feels he is in the wrong place and that he spends his days "in the room, bored out of my mind." William wants ultimately to live more independently, ideally in Dublin where he is from. He receives assistance from the Acquired Brain Injury Ireland charity each week, five hours split over two consecutive days. "It's not near enough" says Gregory Harris, a Community Rehabilitation Assistant with the Acquired Brain Injury Ireland charity. Mr Harris brings William out for social activities – visits to the cinema, friends or family. But two days a week of community rehabilitation are not enough to prepare William to be able to live more independently outside of the nursing home, Mr Harris says. "We get a certain distance with him and in a few days' time, he has gone back again." It needs "to be more consistent," Mr Harris added. For those who remain in nursing homes, there is also the HSE's Enhanced Quality of Life Supports Programme, aimed at providing benefits to those living in nursing homes, such as regular hours with a personal assistant, or devices like an iPad, an exercise bicycle, or a powered wheelchair. The HSE applied for €1.7m from the Department for Disability to fund those supports in 2025, but that application was rejected. So, the HSE has to dig into its overall budget, which is for moving under-65s from nursing homes. It declined a request for interview, but in a statement, it said that its Enhanced Quality of Life Supports funding for under 65s in nursing homes "has not been cut entirely for 2025." It added that it will pay €251,000 from its overall under-65 Programme budget towards the quality-of-life supports. That's less than one-third of the €812,000 allocated in 2024. "If the government wanted this programme to progress, it would progress," Ombudsman Ger Deering said. "It's the Government who sets the standards, the Government who sets the budgets. If the Government decide that people with disabilities actually matter and that people with disabilities are entitled to live the same lives that the rest of us want to live, then the funding would be made available," he added. An Saol One non-governmental charity is stepping in to fill the gap in services provided by the State. An Saol, which supports people with brain injuries, was founded by German national Reinhard Schäler after his son Pádraig was hit by a truck while cycling in the United States. Pádraig, then 22, suffered a serious brain injury. A university graduate and Irish language enthusiast, he can no longer walk or speak, but remains acutely aware of the world around him. "He can understand four languages," Reinhard says. "I speak German to him, his friends speak Irish to him. My wife and I speak Spanish, and he understands that. He has a Spanish carer that talks Spanish to him," he added. Pádraig lives at home with his parents and regularly attends An Saol in Dublin's Santry for therapies. He communicates responses to questions using a beeper. An Saol plans to open a larger facility in Ballymun, including step-down accommodation that could help people avoid nursing homes. 'Bureaucracy' Dublin City Council has made a site available, but Reinhard Schäler says the project is now mired in HSE bureaucracy. "A year and a half ago, we were nearly there" he says. "Then everything stopped." Reinhard says he is now filling in a new set of forms "for the same purpose" as forms he filled in previously. "It's very hard to understand, and it's very frustrating," he said, noting that the HSE is in full support of the proposed project and has highly evaluated the current An Saol service. He says that there is no time to waste. "We have an urgency here. We have the people here who need this now, not in five years or 10 years." In its statement, the HSE said it was "proactively engaged with An Saol Foundation and making significant progress regarding securing a site for a proposed development project. It is anticipated a full submission will be in place for a National HSE Capital Steering meeting in late 2025 or early 2026."
