Caroline Roche’s daughters brought her out for coffee and put the question to her straight. What was going to happen to their 31-year-old intellectually disabled sister when Caroline could no longer look after her?
“I burst into tears and started asking questions such as: ‘Who would give her Bunny at night except me?’ My daughters felt terrible, but I told them they were right to raise it. I needed to face this.”
Four years ago, Caroline’s husband Michael dropped dead. At 62, Caroline now cares full-time for Helena, who has Down syndrome, autism, epilepsy, and finds it increasingly difficult to walk.
Helena, devastated by her dad’s death, clings to her mother “like a sticking plaster”.
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“It’s beginning to feel like a life sentence,” admits Caroline.
Helena goes to a St Michael’s House day service in Dublin, but currently has no firm prospect of ever leaving home.
Caroline sees other widows and widowers living free lives, while she is stuck at home, except for a few hours helping on a bus for children with special needs in order to make ends meet. What concerns her more than that, however, is that if something happens to her, Helena will lose her home and her only caregiver at the same time.
Caroline’s story is not unusual. In Ireland, hundreds of intellectually disabled adults are cared for full-time by ageing parents. A new lobby group with the self-explanatory name Before We Die claims that more than 1,500 intellectually disabled adults are living full-time with a parent who is over 70 years of age – and, of these, 450 live with a parent who is over 80. The group’s founder, Tony Murray, says he is aware of three full-time carers in their 90s.
Tony (70) and his wife Susan Corrigan (69) care full-time for their 42-year-old daughter Aoife, who is intellectually disabled due to a rare chromosomal disorder. Aoife needs help with every aspect of her life.
Susan describes the plan for Aoife’s future as “a void”. She compares this with the care shown to her late sister Aileen, born in 1965, who had an unrelated chromosomal disorder. “There was a complete ethos of care. But care is illegal now. It’s all about inclusion. ‘Let’s pretend everyone is the same’ has become embedded as an ethos in this country.”
A Government response to a recent parliamentary question by Naoise Ó Muirí, Fine Gael TD, allows that “in many cases, a person with an intellectual disability may require full-time residential care following the passing of their primary carer”.
The scene this bland statement paints is stark: elderly men and women struggling with the intense task of caring for someone until death, and intellectually disabled men and women in late middle age devastated by the twin catastrophes of losing their emotional mainstay and their home at the same time.
“I don’t know when it became the norm that you care for your loved one until you die,” says Sinéad McGrath.
Her twin boys, Alex and Lee Farmer (23), who have a mild intellectual disability, want to have their own place – living separately but safely, in a supported setting. They’ve been on Cork County Council’s housing list for five years and, as things stand, they could stay on it until Sinead dies.
It may not even end there. Susan Corrigan says she was told it was a pity she didn’t have a second daughter to become Aoife’s carer. All of the parents interviewed for this article were adamant such a scenario will not happen in their families, but they have all seen it happening around them.
Yvonne Byrne, whose non-verbal 35-year-old son Lee has an intellectual disability, is keenly aware that a local woman was forced back to Ireland from Australia to care for a sibling.
It is hard to believe this situation has been the outcome of a process to move disabled people out of institutions that began internationally in the 1970s. The HSE’s national policy, Time to Move on From Congregated Settings (2011), describes the need to move intellectually disabled people out of such settings as “beyond debate”, though a 2018 HSE Lensus Research Review cautioned: “Improvements in outcomes upon moving into the community cannot be assumed to be inevitable.”
Responsibility for housing disabled adults in Ireland now resides somewhere between local authorities, which are meant to provide the houses, and the HSE, which is meant to provide the care package.
In practice, says Tony Murray, provision falls between these two stools. He is campaigning for a “one stop shop” providing housing for disabled adults.
Murray says the HSE has never even defined what “congregated settings” are. Do campuses of group homes qualify? Research cited in the HSE’s 2011 document does show worse outcomes on some measures from placements in campuses of houses, rather than houses scattered “in the community”.
“There is no such thing as ‘the community’,” says Tony. “Aoife needs care. Care is not a bad word.”
Maria Moran (68) dreams of a purpose-built “village”, offering her daughter Jessica (27) “wraparound care”. She and her husband Jimmy (70) are full-time carers for Jessica, who has autism and a moderate intellectual disability. Maria is a cancer survivor, has had a hip replacement, and both she and her husband have pacemakers.
Most of the time, Jessica is gentle, but Maria wants to give the full picture: “When she loses the plot she just doesn’t care any more. She’s 6ft tall. She got her dad by the neck. There’s times I’m afraid of her.”
Maria and Jimmy are, she says, on the alert at all times, with her daughter “ruling the roost”. The two nights of the month Jessica goes to respite are the only times Maria can relax. And, even then, she lies awake thinking: “What does the future hold for Jess?”
While families wait for the stars of local authority housing and the HSE to align, the fate awaiting their intellectually disabled loved one when a parent gets sick or dies is a nursing home bed or a bed in a for-profit private care home, which could be many kilometres away. Between 2020 and 2024, capacity in the far more expensive for-profit sector rose 120 per cent, while HSE capacity and HSE-funded not-for-profit capacity declined.
Such an unhomely setting is Yvonne Byrne’s ultimate fear. She is 59 and her husband, Paul, who is 62, retired early after surviving cancer and a stroke.
“I want him to be in a little place with two or three pals. I want him to be with familiar faces, people who’ll listen to him, celebrate his birthday and Christmas.
“If they don’t”, she warns, “I’ll come back and haunt them.”
