Few people relish the prospect of ending up in a nursing home in old age. The thought of ending up in a nursing home in your 20s or 30s is incomprehensible, but that is exactly what is happening to young people in Ireland because of a serious failure to fund community support services.
Julia Thurmann was 34 when she found herself moving into a nursing home back in 2008 with two boxes of personal belongings.
Originally from Berlin, she was working and living in Dublin when she contracted the Adem (Acute Disseminated Encephalomyelitis) virus that attacked her brain stem and spinal cord, leaving her paralysed from the waist down.
She remembers deteriorating quickly with a high fever and then nothing until she woke from a coma three weeks later.
After spending a year in the National Rehabilitation Hospital (NRH) in Dún Laoghaire, her attempts to live independently came up against obstacle after obstacle.
She couldn’t return to the shared apartment she had been living in as it was up a flight of stairs. She was refused funding for a personal assistant that would have enabled her to move into wheelchair-accessible accommodation.
Without an assistant, she could not get a place in the Irish Wheelchair Association’s transitional apartments either.
Brain injuries
Finally, she was turned down for social housing and the only option left was to take a bed in a nursing home in north Co Dublin where she now lives with 120 others – elderly dementia patients and people who have suffered traumatic brain injuries.
She says it was an extremely difficult time in her life.
“It was desperate. I came here and went to the dining room . . . no one said a word and people just stared at me. I came back and sat here in this bare room and thought, ‘God no!’ I was the only person of sound mind.”
Her case is not a freak occurrence and within the last 12 months a man in his 30s moved into the home under similar circumstances.
Five years on, she has become resigned to her lot.
“Maybe you should have come in the first few years and I would have talked differently. I’m sick fighting, I have this [gesturing to her wheelchair] to deal with. I know it is not the right place for me but you have to make peace with the situation. I would love to live somewhere independently, have my own little apartment with help in the morning and evenings. That’s all I’d need pretty much.”
Her employer, car rental firm Hertz, has been very supportive since she returned to work three days a week. She has good friends but senses they don’t like to visit. “There is a stigma, like ‘oh, she is in a home’. I know it is not the greatest place to come into.” Relationships are difficult. She met someone recently and calls the situation “delicate”.
Anne O’Loughlin, principal social worker with the NRH, frequently sees young people inappropriately placed in nursing homes.
Transitional housing
A small number do need 24-hour care but in the majority of cases, they end up in homes because other services simply aren't available. Ireland has a shortage of step-down rehabilitation facilities and transitional housing for people with spinal or brain injuries.
Funds to make houses wheelchair accessible and for personal assistants have been obliterated by austerity budgets.
“The first time people realise that Ireland isn’t geared up for the problem is when it happens to their relative and they are very shocked,” says O’Loughlin.
“They are trying to get their head around their son or daughter being paralysed, or having a brain injury, and we have to gently say that we need to fill out an application for a nursing home bed for a young person. It is a terrible thing.”
Although Government policy documents such as the Congregated Settings report make all the right noises about moving away from institutionalised care, in practice the system is inadvertently trapping young people in nursing homes.
With €974 million allocated to the Fair Deal nursing home support scheme in 2013, it is one of the last sources of funding available. “In fairness to the people who drafted that legislation, I don’t know if they ever envisaged that it would be used so much for young people.
“The only access anyone has to funding is the Fair Deal, so they are nearly being encouraged into nursing homes” she says.
People with brain injuries are especially vulnerable to becoming trapped in nursing homes as they often have complex needs. For those unlucky enough to live in an area without specialist services – which is vast swathes of the country – nursing homes are the default.
Access to services
As elderly care homes are not set up for rehabilitation, young people do not get enough access to services like physio and speech therapy that they need to get back to independent living.
Niall McGrath, now 43 years old, has been living in St Joseph’s nursing home in Longford since he was 21. He was working in a bar in London in 1989 when he fell down a flight of stairs and was left with a severe brain injury.
No one expected him to live very long after he was brought back to Ireland, so it is only in the past few years that his family began to question the appropriateness of him being placed in a nursing home for the past 22 years.
Since 2010 they have been pushing to get more suitable help.
They were told there is no brain injury unit in the midlands but got him into the NRH for two months of rehabilitation, secured a mobility allowance and a personal assistant for six hours per week.
The extra help has resulted in a big improvement in Niall, making his mother Mary wonder if things could have been different if he had received rehabilitation earlier.
“There is a big change in him. If he had the proper care and was in a facility for people with brain injury, I think he would come on leaps and bounds,” she says.
"The nursing home is all dementia patients and he is the youngest person there. It is not the place for Niall."
Community activists
Acquired Brain Injury Ireland (ABII) was set up by the family of a man called Peter Bradley because of this very issue.
They were so shocked to see 43-year-old Peter placed in a nursing home after a brain injury that they set up the charity to supply services the State isn’t providing.
"He would have been left in there for the rest of his life and unfortunately that is still the situation today," says ABII regional manager Donnchadh Whelan.
It is the only organisation going into Irish nursing homes and taking young people back out to normal life.
“There is a huge gap [in services],” says Whelan.
“Brain injury affects mainly young people. Your life has been devastated after an accident, you have years ahead of you and you spend the rest of your life in a bed in a nursing home. That is how low the bar has been set.”
ABII conducted a non-scientific study in 2011 and found 91 young people living in nursing homes in the Dublin region.
Advised to apply
Asked to comment about the issue of young people being placed in nursing homes, the HSE replied: "If a person requires long-term residential care, they are advised to apply for support under the [Fair Deal]. However, it is a matter for the individual whether they do or do not actually apply."
Only option
This seems to suggest young people are choosing to go into nursing homes rather than being compelled to because there is no where else to go.
According to the HSE, “under-65s” make up almost 5 per cent of the numbers living in nursing homes in Ireland.
However, they could not supply a breakdown of age categories as they are not collecting this information.
Nor is there data on the diagnoses of young people in nursing homes and whether anyone is case managing them back out into the community when they improve.
“That is one of our concerns,” says O’Loughlin. “Who is following up? We have no idea whether they ever get back out again.”
