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TODAY IS THE first day in 30 years that Damien Douglas has received full carers allowance for his twin daughters, Una and Ailish, who both suffer from the life limiting genetic disorder, Wolf-Hirschhorn syndrome.
The means test limit, which was increased in Budget 2025, came into effect today, providing Damien with €260 weekly. However, carers say much more support is needed.
Damien said his daughters Una and Eilish, who are non-mobile, non-verbal and cannot eat or drink, operate at the level of a “nine-month-old”.
“They cannot do anything for themselves in any way. Everything that they need done for them has to be anticipated by us, 24 hours a day, seven days a week, 52 weeks a year,” Damien said.
Doctors told Damien his daughter would not survive beyond the age of two. “Now they’re 30, and that itself is a miracle. They’re the most gorgeous girls in the world,” he said.
Damien said “huge inequalities” exist for home carers. “If I was an artist struggling, I’d probably get €325 a week, the most carers get is €260. There’s an inequality in that which doesn’t ring through. It devalues what we do”, he said.
Now aged 68, Damien’s worries constantly about what will happen to his girls if he and his wife pass away. “No way do I ever want my other children, to have to do what we have to do. We do it because we are parents, they don’t have to do it and nor should they ever have to do it”, he said.
“I dread when I’m another 10 years older and the girls are 40. How are we ever going to manage? Are we going to put them on a waiting list for accommodation? I have no idea. I’m terrified. In 10 years’ time, I’ll be 78 years. I will not be able to do what I can do now, he said.
Damien said he and his wife have to fight for everything the girls need. “We shouldn’t have to fight, there should be a system in place whereby the needs are recognised both of the carers and other people who need care”, he said.
Damien was speaking with other carers at the Family Carer’s Ireland Pre-Budget Submission “Ensuring No One Has to Care Alone”, which outlines eight reforms put forward to support family carers, including:
Catherine Cox of Family Carers Ireland, said home carers are experiencing a “crisis” and are at “breaking point”.
“According to our most recent State of Caring survey, almost 70% of carers face financial hardship, nearly a third cutting back on essentials such as food and heating. Over 72% have never received respite care, severely impacting their physical and mental health. Moreover, more than 15,000 children face unacceptable delays, often over a year, for essential assessments and therapeutic supports.
She said family carers save the state over €20 billion each year, and Budget 2026 presents a “vital opportunity” to deliver on their election promises and support family carers.
Aisling McEniffe said she has also had to fight every day to access the care needed for her son Jack, 18, who has Down Syndrome and complex medical needs. “I feel very tired, and I’m only 20 years in,” she said.
“I used to be terrified that he’d die, now I’m terrified I’ll die”, Aisling said, explaining that her own health problems make her live in fear for her son’s future.
“My beautiful son is who I care for. I love him, and I will fight till I die for him. I don’t want to die before him, because I know that there’s nothing in place”, she added.
Aisling said the transition into adulthood for children with additional needs is “horrific” as they change to adult services, often leaving them without necessary services. “It’s not as if the disabilities go away. It’s not as if they’re going to get better. In fact, the reality is that caring gets harder because we are getting older. Our kids are getting more complex”, she said.
She said there are no appropriate care options for her child, who at age 18 was offered respite in a nursing home.
She added that the maximum €260 carers allowance, which is her only source of income, is insufficient. Last week she spent €345 on private appointments for her son alone.
Aisling believes the Fianna Fáil and Fine Gael government has played home carers with promises such as the abolition of the means test for the carers allowance. “We can’t trust anything they say anymore,” she said.
“It’s just pure discrimination, and the government needs to acknowledge that they discriminate against carers and they discriminate against people with disabilities.”
Aisling emphasises that carers are “ordinary people”, and they need “proper support” which is different for each carer, rather than to be “put on a pedestal”.
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