Ireland parents fear care crisis for disabled adult children

Aging parents caring for adult children with intellectual disabilities face acute anxiety over who will provide care after they die, with families warning that inadequate state planning pushes vulnerable adults into emergency private placements. Older caregivers across Ireland are speaking out about concerns regarding residential options, leaving many to fear that their children will face institutional care or exploitation by the for-profit sector.

The Crisis Facing Aging Caregivers in Ireland

Gerry and Geraldine Conroy, both in their 70s, have cared for their son, Donal, who has Down syndrome, for 40 years. Donal needs help with all personal care, is nonverbal, and lives entirely in the present moment, unable to understand spoken language. An estimated 2,300 adults with an intellectual disability are cared for at home in Ireland by parents aged over 70. Gerry Conroy stated that if he and his wife can no longer manage, It is then that our family will be thrown into a crisis situation.

The Conroys are alarmed by the prospect of Donal being treated as an emergency case upon their death or failing health. Gerry Conroy noted that under current practices, individuals in that situation are put into respite care and advertised out to private providers, leaving families with no say in where they go or who cares for them. The couple hopes for nearby step-up accommodation for two nights a week to prepare Donal for future living arrangements and give them needed rest, noting they can retire from their own jobs but cannot retire from caregiving.

Illness Deepens Parental Fears for Adult Children

Other families are already confronting critical health crises. Paul and his ex-wife Hazel, both in their late 60s, are struggling with serious illnesses while caring for their daughter Susan, who is in her late 20s and has Down syndrome. Hazel was diagnosed with stage-four cancer, and Paul was subsequently diagnosed with stage-four chronic kidney disease requiring dialysis within one or two years.

In one fell swoop, Susan loses her dad, her carer, her home, her community. She loses her choice because she’s placed in there. She loses her buddies, which is the big thing for her, and she loses her voice because I’m no longer there to represent her.

Paul

Paul is associated with Before We Die, a parents group lobbying the Government to fund and deliver residential places for adults with intellectual disabilities. The group argues that Budget 2027 provisions of 212 residential places continue a crisis-first policy because 112 of those slots are ring-fenced for emergencies. Derval McDonagh, chief executive of Inclusion Ireland, noted that Ireland signed the United Nations Convention on the Rights of People with Disabilities in 2018, which gives voice to every person’s right to live in their local community. McDonagh added that nearly 200 people have been housed more than 100km away from their families, which she called utterly devastating.

Government Budget Allocations and Future Care Planning

In response to queries from The Irish Times, the Department of Children, Disability and Equality emphasized that increased emphasis on longer-term planning for residential placements remains a key focus for the Government and the Health Service Executive. Officials pointed out that Budget 2027 brings total disability services funding to over €4 billion for the first time. The department disputed claims that only 100 places are available for transitions out of family homes, stating that funding will also support new placements into existing vacant spots with necessary enhancements, while government departments work with local authorities to set disability housing targets.

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