TD ‘beyond embarrassed’ by lack of action on services for autistic children

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A TD HAS described being “beyond embarrassing” at the insufficient responses to parental requests for support for children with autism.

The Oireachtas committee on autism met this morning to discuss autism policy, with TDs and senators raising concerns about the provision of resources and gaps in the system that create difficulties in access to support.

Fine Gael TD Jennifer Carroll MacNeill said she was “beyond embarrassed” by cases of issues raised by parents which are then reported to the HSE, Dáil or the Public Accounts Committee, but never dealt with.

MacNeill told Minister of State for Persons with Disabilities Anne Rabbitte, who appeared before the committee, that the challenges to service delivery in her area are “acute”.

“I’m at the point Minister where I don’t even know how to get back to the parents anymore, I’ve raised their issue so many times with your office and the HSE and the responses I get back – no disrespect to you, I know you are in good faith and I know how hard you work on this – but for the HSE some of them are outrageous Some of them are outrageous.

MacNeill described a case of receiving a letter from the HSE on February 1 in which the HSE told him that a particular child had undergone a needs assessment on May 10, 2021 and was subsequently referred to the care team. HSE school age on 25 May 2021.

“I went back to the parents and said that was great, right? They came back to me and said we read your letter and were a little confused. It has never been assessed by the HSE.

MacNeill returned to the HSE and informed them that the child’s parents had said the assessment had not been completed.

The HSE apologized and told the TD this was a mistake and would get back to them with an update.

“I’m still waiting, I’m still waiting. And that’s just one case…Mr. Minister, I have a stack of these on my desk, because you know I’ve spoken to you directly about this,” MacNeill said.

“I can’t imagine how difficult it is to be the parent of an autistic child with acute needs, to have to deal with it day to day and to try to support your child and at the same time to having to navigate the HSE and trying to get a needs assessment and service provision for their children.

“I am beyond, at this point, beyond the embarrassment of going back to the parents. I didn’t even tell them I was raising this today because I’m too embarrassed that every time I’ve brought it up whether by QPL [Questions on Promised Legislation in the Dáil]the public accounts committee or directly with the HSE, I come back and I mean, I raised it and I hope we get an outcome and nothing ever happens.

“I’m too embarrassed to tell them. It’s been going on for so long.

Minister Rabbitte apologized and said she could not apologize on behalf of the HSE but that “as Minister responsible for disability it is absolutely soul destroying this kind of response that anyone one does not know who is on the system or not”.

In his opening statement this morning, Rabbitte highlighted progress on a policy being developed known as the Autism Innovation Strategy.

The strategy, which aims to identify ways to address relevant challenges and barriers not already covered by other national strategies, was open for public submissions in May which are currently under review.

“For me, the engagement and consultation of autistic and neurodiverse people and their representative organizations is essential in developing any new policy measures consistent with our commitments under the UN Convention on the Rights of Persons with Disabilities,” said Rabbit.

“It is essential that the strategy is co-designed and informed by the lived experience of people with autism, their families and their representatives.”

Another public consultation must be organized on the strategy before its finalization.

On service delivery, the minister said a “particular priority is ensuring timely and equitable access to therapies and support for children with autism to enable them to reach their full developmental potential”.

“Having met many families, I am acutely aware of the current frustrations with the lack of services for children and young people, including those with autism.”

“I am aware of the need for further action to support the health, education, employment and other needs of people with autism in Ireland.

“My intention is that the Autism Innovation Strategy will provide an effective mechanism to address these gaps in an integrated way with wider support for people with disabilities and pave the way for Ireland to become a more inclusive and respectful country. of neurodiversity.”

Adam Harris, CEO of autism charity AsIAm, also addressed the committee, stressing the need for an inclusive society for children and adults with autism.

“Across Ireland people with autism are denied the same chance every day to go to school, access healthcare, find employment, live long, healthy and happy lives,” said said Harris.

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“In many ways, ours is a community in crisis. We need to see policy change, but we absolutely need to see policy resourced and implemented and we need that to happen urgently.

He pointed to difficulties in accessing education and work supports as well as mental health, assessment, speech and occupational therapy services, with some forced to pay for private services at a significant cost.

“When services are available, they are too often aligned with a medical and behavioral approach that focuses on compliance or implies that the challenge is with that individual, as opposed to validating different ways of communicating, thinking and acting. experience the world and help a person participate and thrive in life as autistic,” Harris said.

He asked the committee to “think radically”.

“The time for local solutions and plasters must pass. We cannot continue to stumble from crisis to crisis while our community suffers.

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