Parents resign from disability service steering group over issues with strategy

Fuss Ireland's Rebecca O'Riordan said she and another campaigner felt 'that children with disabilities were not being consulted'. File Picture: Jim Coughlan

Two leading campaigners have resigned in frustration from a national steering group for improving children’s disability services, branding its new strategy “pure fantasy”.

Fuss Ireland's Rebecca O'Riordan and Aisling Byrne, of DCA Warriors, announced their resignation on Monday, leaving their roles as two of the three parent representatives on the group they had been appointed to as part of the process shaping the HSE’s Roadmap to Improve Children’s Disability Services 2023-2026 document.

They said they felt ignored, that their concerns were not taken on board, and that children with disabilities were not consulted. They also claimed:

• The data being presented to ministers to shape the strategy was inaccurate;
• Families and staff delivering disability services were not consulted about the roadmap; 
• The HSE has created programmes for autism assessment which contravene children's rights under the Disability Act; 
• The HSE sought legal advice on what bare minimum contact they could make with a child to discharge their duty of care;
• Families are being punished with everything from service removal to Tusla referrals for making complaints against service providers;
• There is no governance or accountability in a system where a handful of people make all the decisions with little oversight;
• And a private consultancy firm, with no expertise in providing disability services, is being paid to monitor the implementation of the strategy.

In a statement, they said they knew that the work would be challenging but they were excited to get involved and hopefully make a change.

“We could never have envisioned that we would be sitting here two years later, standing over a system which is actively regressing,” they said.

Ms O’Riordan said: “We realised quickly that a seat at the table is not the same thing as a voice, and we consistently lowered our expectation.

We tried to effect change, and we kept pushing, and pushing and pushing but you just don’t get anywhere

“We wanted to move together in partnership with them [the HSE], but they have shown they’re not interested, and that’s fine. We’ll move on without them.

“We will continue our campaigning and this will be a major issue at the next general election.

"Now we are informed by our experience both inside and outside the system. We now know where the cracks are.

“It’s clear to us now that politicians don't understand why the children’s disability service doesn’t work."

It’s not a money problem. It’s a governance problem

The two women, who are mothers of children with disabilities, applied for and were appointed in 2022 as parent representatives on the national steering group — which was set up to help improve the children's disability services system.

The roadmap was launched last October by the Children's Minister Children Roderic O’Gorman, minister of state Anne Rabbitte, and HSE CEO Bernard Gloster, with actions they said would enhance the services.

But Ms O’Riordan and Ms Byrne said the first time they saw it was at the launch in Dublin.

The HSE has been asked to respond.