May 23, 2024, (Ireland) Irish Examiner: Looking after a child with autism in Ireland is a constant fight for support
Why do parents and educators have to fight tooth-and-nail for the promised State services for their disabled children? It’s time for the HSE to be pressured into doing what it is claiming to do, writes David O'Mahony. [Asst. editor, Irish Examiner]
Why is everything around disabilities so hard in this country?
Not only has the re-organisation of State services been disastrous, our children aren’t even getting access to the school-based therapies they’re supposed to be getting.
My 10-year-old son Jacob has autism. Several years ago I wrote in these pages about our struggles to find him a school place. That wrong was, miraculously, righted thanks to St Killian’s school in Mayfield, Cork.
He is happy there, he has developed there, he has friends, he can count large groups of items at a glance, as I’ve seen him using apps. I’ve even joined the board of management (as one of two parent reps, not as a journalist or editor).
But St Killian’s, as a special school which has been taking in more and more pupils who have autism, is supposed to be getting therapeutic services several days a week — occupational and speech to be precise, both things that Jacob needs.
He is not much for speech. I asked him why he didn’t talk to me once and he told me “it’s shit”. He’s also told me he finds it hard. But he can when he wants to, albeit occasionally with a French accent. . . .
Now though, scale that up to as many as 90 families in just one school; some kids will be able to do more than others, as is the case for neuro-typical children too, but the challenges can be steeper, more numerous, more prevalent.
He has had no State services for years, bar the recent help of a paediatrician through his disability network team (a three-word horror story if ever there was one). That paediatrician is already making a difference in treating some of Jacob’s sleep and intestinal issues, both of which are common in people with autism, and it goes to show that when services are provided they can have tangible benefits quite quickly.
It's just another reason why the country’s disabled children should be getting what they are entitled to in their schools. They should not be seen as second-class citizens. . . .
A lobby group, St Killian’s Parents Unite, has been engaged in a vigorous letter-writing campaign with Cork politicians of all stripes. On the back of this, the school — and the ongoing lack of therapy funding for same — was raised in the Dáil by Sinn Féin’s Thomas Gould and Donncha Ó Laoghaire.
It has been brought to Finance Minister Michael McGrath’s attention so he can pursue it with the relevant ministers. The TDs Colm Burke, Padraig O’Sullivan, and Mick Barry have been actively helping. Other TDs and councillors have also voiced their concern. Barry raised it directly with Taoiseach Simon Harris in the Dáil in recent days. Harris promised to seek an update from Anne Rabbitte. We shall see what comes of it. . . .
Parents Unite and the principal met with Disabilities Minister Anne Rabbitte last year. They were promised that, if they could source a private contractor, then the funding for therapy would be released. There is a precedent for this in Wicklow.
They sourced the contractor. The fees are agreed and, in the grand scheme of things, are not excessive. It’s the kind of thing that should be considered an investment in children’s future, not a burden on a Kafka-esque bureaucratic monolith.
The HSE has not released funding, and instead keeps saying that there are therapists in-situ in schools. I assure you there are not, at least not in the schools I’ve heard of.
The Irish Examiner last week reported that two schools on the southside of the city, in Carrigaline and Rochestown, are in a similar predicament, and that the HSE is making similar claims. That’s just three schools in a relatively small geographical area.
Let’s scale up again. How many other schools might be affected? If there are more than 90 pupils hit in just one school, then how many hundreds more are also being deprived of necessary services and supports?
Jacob has had no State services for years.
Why do we accept this as a republic?
Why do parents and educators have to fight tooth-and-nail for what they’ve been promised?
There is no excuse or justification for this. I know it, you know it, every politician in the country knows it. It’s time for all the pressure to be brought to bear on the HSE so it actually does what it is claiming to do.
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