Tipperary girl goes to the very top to highlight shortcomings in autism services

An 11-year-old Tipperary girl has gone to the very top to highlight unacceptable waiting times for therapies and services for people with autism.
Cara Darmody has two younger brothers with severe autism and her wish to meet with Tánaiste Leo Varadkar to highlight the issues was granted last Thursday.
Cara accompanied by her parents, Mark and Noelle, they arrived at Leinster House for formal meetings with the Tánaiste and the Minister for Special Education, Josepha Madigan. They were there after Cara requested on national radio to speak to either the Tánaiste or Taoiseach.
That call was heard loud and clear by Senator Garret Ahearn, who urgently sought and arranged the meetings.
The Darmody family were met by RTÉ and Virgin Media news cameras outside Leinster House.
“We are here, not just for words, but to see clear action,” Mark Darmody told the waiting media.
“The waiting lists for children seeking autism-related therapies are now 3+ years – it is absolutely unacceptable. Even if you had a million euro, and were paying privately, the wait time for an occupational therapist in south Tipperary is now 8 months. The whole thing is a disgrace,” stated Mark.
“If you are a parent of a special needs child that requires help, or in our case a lot of help, then you need therapies and services in a very timely manner. That is not available at present,” said Noelle Darmody.
“There are windows of opportunity in a child’s development that are being lost at present. A family can wait for several years before their child is even assessed,” stated Mark.
In the Darmody’s case they were oblivious to the damage that could be done while waiting for assessments. “Parents are not the experts on this, so you do not realise the damage that can be done by being on a waiting list . Our second boy John was then diagnosed at one and ¾-years-old privately, but we waited until he was four-years-old for the HSE to diagnose him. We would have lost that window of opportunity if we had waited for the HSE,” said Noelle.
“We can directly compare in our family, between the two boys, the difference when one gets services and the other doesn’t. It is a disgrace that anyone has to pay privately for services that the state is mandated to provide,” said the Tipperary father. Mark, who is an education consultant and possesses a specific Diploma in Education Law said the family brought up many legal and technical issues with the Tánaiste and Minister Madigan and had certainly left Leinster House more optimistic than when they entered.
The Darmody’s secured various commitments, including that the SERC report which allocates SNAs to schools, will now be reviewed as disability has changed massively since that report was authored in 1993.
The issue surrounding who recommends whether a child actually requires a special school or not will also be examined.
Cara had an incredible day, getting to sit in the Dáil Chamber and the Seanad, where she was commended by the members present.
Her meeting with the Tánaiste started brilliantly as he actually donated to her fundraiser as he walked down the stairs.
“It must be the coolest donation of all time,” said Cara. The young girl told everyone in Leinster House that she might become a politician when she grows up.
Funnily, she first told Senator Ahearn that he was her favourite politician, then told Minister Madigan the same thing later, and finally, when she met Leo Varadkar, she told him that he was her favourite politician.
The Darmodys have further meetings planned in the coming weeks including a crucial one with the Minister for Disabilities, Anne Rabbitte, to further discuss the lack of services issue, as well as engaging with the newly formed Committee on Autism going forward.
Senator Garret Ahearn, who arranged the meetings, was very pleased with how the Darmodys made their case.
“Cara, along with her parents Mark and Noelle, outlined in very direct language the challenges their family face every day with the lack of services for Neil and John. I was so pleased to see the positive engagement with Minister Madigan and of course with the Tánaiste Leo Varadkar.
“Several commitments were made at those meetings, and I will continue to work with the Darmody family to ensure those promises are kept,” said Senator Ahearn.
Cara is doing a fundraiser for Ardfinnan National School and Scoil Chormaic Special School in order to raise funds for the various therapies required, therapies that the HSE is not providing.
“It really makes me angry, not with my brothers, but with the fact that they can’t get the proper services that they need. My Mammy and Daddy are friends with so many others who are the same.
“It gets me really mad sometimes,” said Cara.
Cara has two severely autistic brothers, Neil (9) and John (5), who are both non-verbal. Neil in particular displays extremely challenging behaviour.
Cara decided to do something about it.
“I decided last September that I would sit the Junior Cycle Maths paper to raise money for those that need it the most,” said Cara.
Fast forward eight months and Cara will now sit that exam on June 10.
“I think I’m ready to go,”said Cara.
She now has a phenomenal €20,000 raised in a GoFundMe campaign.
“I hope people continue to donate as those kids just need help so badly,” added Cara.
It will be the first time a national school pupil has ever sat a Junior Cert exam o in the history of the country.

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