Parents of children with disabilities 'insulted' by budget, says Cork campaigner

Rebecca O'Riordan and her daughter Emmy at their home in Douglas, Cork. Picture: David Keane.

Parents of children with disabilities "do not feel seen" by Budget 2025 with many left “insulted” by the lack of forward planning, Rebecca O’Riordan from FUSS Ireland said.

The disability budget for next year comes to €3.2bn but the Cork mother and advocate said this and other changes still do not meet historic gaps in funding.

“We were told ‘carers will feel seen’ but I don’t know a single person who’s had that reaction,” she said.

“They say ‘don’t you feel so seen’ but no I don’t, I feel insulted beyond belief. It’s absolutely egregious what they have done with these one-off payments.” 

Parents are made to feel an “awful begrudger”, she said, if they raise negative concerns.

“This is the problem we have in disability — we talk about individual cases so people talk about that one child on a waiting list, or one child waiting on a piece of equipment or that one school that needs ‘the thing’,” she said.

“What we actually need is systematic, structural change that is based on evidence. It’s the same in the budget.” 

Many full-time carers do not qualify for payments based on their partner’s income, she said, including in her case.

“I also know people who were cut off because their daughter sent them €50 on their birthday, they rake through every single penny you have and how you spend it. It’s unbelievably degrading,” she said.

Ms O’ Riordan and Aisling Byrne of DCA Warriors resigned in July from a national steering group for improving children’s disability services, saying the strategy was “pure fantasy” then.

She noted government funding announced last week for a special school in Cork providing therapy for one term as an example.

“I’m delighted for them but this is a short-term thing. This is for one term so it is basically ‘shut up until after Christmas when we’ve had the election, that’s what that is,” she said.

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She said instead “the long-term safety and equity of the service” needs regular funding.

Ms O’ Riordan said in their case: “we spent our house deposit – €40,000 – on early therapies for Emmy, we spent our deposit on her care as a baby.

“We were privileged to be able to do so and I don’t regret that.” 

They recently paused expensive private therapies to begin saving again in fear of losing their rental property in the uncertain market.

They had to decide, she said, “what’s more disturbing for her, living in a hotel or going without therapy". 

She urged Minister of State Anne Rabbitte to act on these concerns, saying: “Don’t feel sorry for me, we are flying compared to other families. There is a real lack of understanding of the challenges people face.”