'We were completely ignored': Disabilities parent rep resigns from national steering group

One of Cork’s leading disabilities campaigners has resigned from a national steering group for children’s disability services, saying that her contributions had been “completely ignored” and the current model of disabilities services was “completely unworkable”.

Rebecca O’Riordan, of FUSS Ireland, has resigned from her role as a parent representative on the steering group, which shapes the HSE’s Roadmap to Improve Children’s Disability Services 2023-2026 document.

A second parent representative, Aisling Byrne, of DCA Warriors, also resigned.

Ms O’Riordan told The Echo that she and Ms Byrne felt that they had been “brushed off” and “treated as a tick-box exercise” to rubber-stamp the HSE’s Progressing Disabilities programme.

“Progressing Disabilities is completely unworkable,” Ms O’Riordan said. “There’s no other country in the world with a system like this, there’s no comparative data, there’s no comparative model, no other country links health and social care in this way.”

Ms O’Riordan claimed that Progressing Disabilities had gone ahead despite the concerns of groups such as the Irish Association of Speech and Language Therapists, and of social workers who had strong reservations.

“We’re years into this now, and there are fundamental flaws in how it is rolling out,” she said.

Ms O’Riordan claimed that data being presented to ministers was incorrect, and that families and staff supplying disabilities services had not been consulted in the preparation of the roadmap.

She further claimed that the HSE had created autism-assessment programmes that contravened the rights of children under the Disability Act, and that the HSE had sought legal advice to establish the bare minimum engagement it would need with a child to discharge its duty of care.

Ms O’Riordan further claimed that:

- Most outlined goals from the roadmap have already been scrapped;

- Families who make complaints against service providers are being punished with everything from service removal to TUSLA referrals;

- Unpaid family reps are being asked to carry out literature reviews for policy creation;

- There is no evidence base to the Progressing Disabilities service model;

- There is no governance or accountability in a system where a handful of people make all the decisions with no oversight.

“Whenever we tried to bring up our concerns, we were just brushed off, we were completely ignored, we were just seen as a tick-box exercise, and we were getting to the point where we felt we were complicit in the denigration of the services supplied to our own children,” Ms O’Riordan said.

Ms O’Riordan’s allegations were put to the HSE, but its spokesperson did not specifically address the claims.

The spokesperson said the executive was disappointed that Ms O’Riordan and Ms Byrne had resigned and thanked them for their work.

They said the HSE was committed to maintaining the voice of parents in the Roadmap for Service Improvement, which it said was “a targeted service-improvement programme to achieve a quality, accessible, equitable and timely service for all children with complex needs as a result of a disability”.

They added that the roadmap “sets out the overall aim for children’s disability services, provided by the HSE and its partner agencies, that for every child to have a childhood of inclusive experiences where they can have fun, learn, develop interests and skills, and form positive relationships with others in a range of different settings.”

Asked for a comment on the resignations, Disabilities Minister Anne Rabbitte thanked Ms O’Riordan and Ms Byrne for their contributions.

“The role of parent representatives is an extremely important one in the development of children’s disabilities services and the implementation of the PDS Roadmap, and both myself and Minister O’Gorman are appreciative of the time, effort and input of both Rebecca and Aisling on behalf of families countrywide since 2022,” Ms Rabbitte said.

“Whilst I regret the decision made to step down from their respective roles, we are committed to maintaining the voice of parents, with the Roadmap Service Improvement board and its working groups maintaining a total of six parent representatives.”