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(Ireland) Schoolgirl tells official to end ASD waitlists; 2 siblings with autism

July 4, 2023, Irish Examiner: HSE boss told child autism waiting lists are a 'disgrace'
HSE chief executive Bernard Gloster has been told by a schoolgirl campaigner that waiting lists for treatment and therapies for children with autism are a "disgrace".

\During the 55-minute "pretty frank" face-to-face meeting Cara Darmody told Bernard Gloster the HSE is “a big, bad ugly monster”.

The meeting, arranged by her local Labour TD Alan Kelly, was in advance of another meeting she has with Taoiseach Leo Varadkar on Wednesday afternoon.

Cara, whose campaign has led her to address the Oireachtas and appear on the Late Late Show, wants the HSE to pay for the private assessment of children waiting more than three months to be assessed by the HSE.

The schoolgirl, who also wants the provision of services after an assessment to be speeded up, has also called for more State funding for autistic services and for a full review of the means-tested weekly carers allowance.

Cara, from Ardfinnan, Tipperary, has two brothers with autism, Neil, 10, and John, 6.

She sat — and later passed — her Junior Cert maths last summer in a bid to help raise awareness and €73,000 in funding for better services locally and nationally.

This year, she even sat Leaving Cert maths, making her the youngest child to ever sit both Junior and Leaving Cert maths papers.

The HSE apologised to the Darmody family in June 2022 for not having followed up on a recommendation in 2020 by one of its own child psychiatrists that Neil’s autism was so severe he needed to be reassessed “as a priority”.

The family arranged for a private psychologist to reassess Neil in 2023 because the waiting list for assessments was so long, and the €1,700 bill was covered by the HSE, which has set a precedent for other families in the same situation.

“The meeting started very well,” Cara told the Irish Examiner.

Mr Gloster was very straightforward and to the point and he apologised for the way Neil had been treated.

He asked me what I thought the HSE should do about the problems Neil and other children like him with autism are having in the HSE.

“I said the State needs to pay for those who have to get an assessment of their child done privately if they can’t get the HSE to do it.

“I also said they need to clear the waiting lists and they need to put resources into the treatment and therapies autistic children need.”

She added: “He agreed with me and admitted that what is going on at the moment is unacceptable.

She said Bernard Gloster complimented her on her campaign and she decided to tell him what she really thinks of the HSE.

It was towards the end and I just came out with it. I told him the HSE is a big, bad, ugly monster.

“I said the waiting lists are a disgrace and I told him it’s just not good enough what’s going on.

“I made sure he didn’t think I thought he was a big ugly monster because I was very impressed with him and I thought he was very genuine.”

In July last year, the schoolgirl met Micheál Martin in his offices when he was taoiseach to raise awareness about the lack of autism support.

Later, in an impassioned speech to the Joint Committee on Autism, she urged health officials to “just do your job

Cara Darmody, 12, met with then taoiseach Micheál Martin last July. Picture: Micheál Martin Twitter

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