A TD HAS described being “beyond embarrassed” about insufficient responses to parents’ requests for supports for autistic children.
The Oireachtas Committee on Autism met this morning to discuss autism policy, with TDs and senators raising concerns about the provision of resources and system gaps that create difficulties in accessing support.
Fine Gael TD Jennifer Carroll MacNeill said she is “beyond embarrassed” by cases of problems being raised by parents that are then highlighted to the HSE, in the Dáil, or to the Public Accounts Committee, but never actioned.
MacNeill told Minister of State for Disability Anne Rabbitte, who came before the committee, that the challenges for service delivery in her area are “acute”.
“I’m at the point Minister where I don’t even know how to go back to parents anymore, so often I have raised their issue with your office and the HSE and the answers that I get back – no disrespect to you, I know you’re bona fides and I know how hard you’re working on this – but to the HSE, some of them are outrageous. Some of them are outrageous.”
MacNeill outlined an instance of receiving a letter from the HSE on 1 February in which the HSE told her that a particular child had undergone an assessment of needs on 10 May 2021 and was subsequently referred to the HSE school age team on 25 May 2021.
“I went back to the parents and said that’s great, isn’t it? They came back to me and they said we’ve read your letter and we’re a bit confused. She has never been assessed by the HSE.
MacNeill reverted to the HSE and informed it the child’s parents had said the assessment had not been completed.
The HSE apologised and told the TD it was an error and that it would come back to her with an update.
“I’m still waiting, still waiting. And that’s just one case… Minister, I have a pile of these on my desk as you know that I’ve raised with you directly,” MacNeill said.
“I can’t imagine how difficult it is to be the parent of an autistic child with acute needs having to navigate that on a day-to-day basis and to try to support their child and at the same time to have to navigate the HSE and trying to get assessment of needs and delivery of services for their children.
“I am beyond, at this point, beyond embarrassed to go back to parents. I didn’t even tell them I was raising this today because I’m too embarrassed that every time I have raised it, whether by QPL [Questions on Promised Legislation in the Dáil], the Public Accounts Committee or directly with the HSE, I go back and I say well, I’ve 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 so long.”
Minister Rabbitte apologised and said she could not apologise on behalf of the HSE but that “as minister with responsibility for disability, it is absolutely soul-destroying that sort of response that somebody doesn’t know who’s on the system or isn’t”.
In her opening statement this morning, Rabbitte outlined progress on a policy currently being developed known as the Autism Innovation Strategy.
The strategy, which is meant to identify ways of addressing relevant challenges and barriers that aren’t covered already by other national strategies, was open to submissions from the public in May that are now being reviewed.
“For me, engagement and consultation with autistic and neurodiverse people and their representative organisations is key in developing any new policy measure in line with our commitments under the UN Convention on the Rights of Persons with Disabilities,” Rabbitte said.
“It is critical that the strategy be co-designed and informed by the lived experience of people with autism, their families and their representatives.”
Another public consultation is due be held on the strategy before it is finalised.
On service provision, the minister said that a “particular priority is ensuring timely and equitable access to therapies and support for children with autism to enable them to achieve their full development potential”.
“Having met with many families, I’m acutely aware of the current frustrations in relation to the lack of services for children and young people, including those with autism.”
“I am aware there is need for additional measures to support the health, education, employment and other needs of autistic people in Ireland.
“It is my intent that the Autism Innovation Strategy would provide an effective mechanism for addressing these gaps in an integrated manner with wider disability support and will pave the way for Ireland to become a more autism-inclusive and neurodiverse-friendly country.”
Adam Harris, CEO of autism charity AsIAm, also addressed the committee, outlining the need for an inclusive society for autistic children and adults.
“Across Ireland, autistic people daily are deprived of the same chance to go to school, to access healthcare, to get a job, to live a long, healthy, and happy life,” Harris said.
“In many respects, ours is a community in crisis. We need to see policy change but critically we need to see policy resourced and implemented and we need this to happen urgently.”
He pointed to challenges in accessing supports in education and work as well as mental health services, assessment, speech and language therapy and occupational therapy, with some forced to pay for private services at significant cost.
“When services are available, they are too often aligned with a medical and behaviourist approach which focus on compliance or imply the challenge is with this individual, as opposed to validating different ways of communicating, thinking and experiencing the world and supporting a person to participate and develop in life as their autistic selves,” Harris said.
He asked the committee to “think radically”.
“The time for local solutions and sticking plasters must pass. We cannot continue to stumble from one crisis to another whilst our community suffers.”
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