Resignation of mothers from disability service steering group 'should ring alarm bells', says TD

Rebecca O'Riordan (pictured) of FUSS Ireland and Aisling Byrne of DCA Warriors have claimed, among other things, that most outlined goals from the Roadmap to Improve Children’s Disability Services document have already been scrapped. Picture: Jim Coughlan

Alarm bells should be ringing in government and the HSE over the resignation of two campaigning mothers from the national steering group for improving children's disability services.

Solidarity TD for Cork North Central, Mick Barry, made the comment following revelations in the Irish Examiner on Tuesday about the resignations of disability campaigners Rebecca O'Riordan of FUSS Ireland and Aisling Byrne of DCA Warriors as parents' representatives from the steering group which they hoped would shape the HSE’s Roadmap to Improve Children’s Disability Services document.

They said they felt ignored, that their concerns were not taken on board, and the voice of the service users themselves, children with disabilities, were not consulted. They also claimed:

• the data being returned and presented to ministers is inaccurate;
• most outlined goals from the Roadmap have already been scrapped 
• the HSE has created programmes for autism assessment which contravene children's rights under the Disability Act 
• families are being punished with everything from service removal to Tusla referrals for making complaints against service providers;
• the HSE sought legal advice on what bare minimum contact they could make with a child to discharge their duty of care;

Mr Barry said the two advocates have made a series of important criticisms of the way the children's disability service plan was formulated and is being implemented and that those criticisms should be taken seriously.

“I would be very concerned about what is going on when I read about the resignation of these two campaigning mothers from the steering group,” he said.

“The criticisms they have made about the way the State's policy is being formulated and implemented are very serious and need to be listened to. There should be alarm bells going off this morning in Government departments and the HSE.” 

HSE response

The HSE was asked to respond to the resignations, and each of the claims.

In a statement, which did not deal with the specific criticisms, it said it was disappointed that two parents have resigned, it thanked them for “their support and work”, and said it it is “deeply committed” to including parents in the Roadmap.

“The Roadmap Service Improvement Board and its working groups includes six parents. We are committed to maintaining the voice of parents in the Roadmap for Service Improvement," a spokesman said.

“The Roadmap is 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 and their families.

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“It 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.” 

The spokesman also insisted the voice of parents in the process is facilitated though 90 family forums, each of which elects two representatives onto a group which meets with the children’s disability network manager to discuss the local service.

An independent review of the forums and the family representative groups has been commissioned.