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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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They’ve known this for years but still have done nothing about it. Forward thinking and Irish Government don’t go together in a sentence.
@Ciaran Farrelly: they don’t shine at any kind of thinking really
What about using windfall money to invest in infrastructure like our decrepit water pipes?
@Phil O’ Meara:
or housing;
or roads;
or schools;
or hospitals;
or trains;
or giant printers!!
Why has the journal not reported any of the recent good news on the economic front? Lower unemployment again, higher tax receipts, evidence that one of the multinationals based her pays more than the headline 12.5% rate?
If you only read the Journal you’d swear that the country is struggling while in fact it’s booming!
@joe:
But you can’t complain if booming is about!
@joe: booming fot the few..
@joe: that wouldn’t fit with the Left Wing bias.
@joe: less people on the dole can easily be made to look well when you see people being dumped into the likes of seetec or tus, and the fact is the higher tax receipts are coming from people already over stretched with crappy pay packets and stealth tax after stealth tax……you might want everyone to be all happy because in your eyes its a wonderful time, but sadly for lots of people there is no recovery and most are barely keeping their heads above water
@Michael Patrick Newell: Well you have that because one million people in Ireland pay little or no tax at all.
@Michael Patrick Newell: look around you and open your eyes. There are jobs for anyone who wants them. You have to start somewhere, start in a low level job and work your way up.
The prospects that come from having a job are much greater than those that come from not having one.
Life is what you make it!
@joe: its a false economy.
More in work than a few years ago but also more shitty jobs. Far less permanent jobs, lower real wages. Unaffordable rent.
When a person earning an average wage hasn’t a hope of buying a house the society is in serious trouble.
The rich poor divide is growing rapidly we are heading towards having a lower income tier of society who can never own property with a very small proportion owning everything….
sound familiar? Is should because we have had it here before with the landed gentry. We are heading for a return to feudal times with pesants and elite.
@joe: What is booming Joe ? does that mean theres a bust coming too..
Its Booming for bankers and Property Owners .. while people with even decent jobs struggle to pay rent
@joe: Yeah, all those cribbing and moaning should “commit suicide”.
@Gowon Geter: there’s always a busy coming. It’s just a question of when! That’s how economics works!
@Gowon Geter: tourism, restaurants, bars, tech, construction. A knock on from that is a load of support jobs in the wider services sector.
@joe: Ok Joe. You get a job in the service sector, then try to afford rent (haha), health insurance (because wouldn’t want to wait a week on a trolley or a year for a scan), groceries, utilities, you’ll probably need a car because good luck finding suitable accommodation within walking distance from your wonderful new job and public transport is just not a viable option in many places so then there’s motor tax, car insurance, petrol, (a carbon tax coming down the tracks, and if you own a laptop, phone or TV you’ll probably be hit for a TV licence eventually too), oh and also try to save for a mortgage that you’ll never qualify for on your salary from this wonderful job but don’t worry, as you put it it’s all about work ethic and Ireland is a bountiful land of plenty for those who don’t want to just sit on their ass on the dole, why, work your way up in that job and in maybe 10-15 years you won’t be in the red every month. Hurrah. Seriously, have you actually been paying attention to the state of this country and challenges workers face, how expensive it is just to live here? or are you in some sort of little wealthy bubble where none of this affects you so you look down at the great unwashed and assume they must not be as smart or talented as you are, sure why else would they be struggling?
When the shinners get into power they will bring in a sustainable corporation tax policy that will cover everything…. bring forth the shinners
@Tony Henry: tell you what muppet, look around the country its in a terrible mess, and guess what it’s not SF in government!!
@Tony Henry: well they cant be any worse than the role over for a brown envelope or cushy job FFG circus act who would rather pucker up to large corporations and then expect the joe soap tax payer or irish business to pick up the tab……bring fourth the clowns of the FFG clown college
@rumug: don’t SF have majorities on councils?
@milton friedman: here and there they are. What’s your point? County councils have little to no power.
The first paragraph says it all about this Government, “reliance on using corporate tax receipts to plug spending overruns”
Why is there so many spending overruns is the first place. Tax payers money been wasted every day while so many worthy causes are crying out for extra funding. Disgraceful
The people’s money trough can add more and more tax under FFG rule…
@Willy Mc Bride: What?
We’re a high cost economy that can’t afford itself anymore they should of let the troika sort out the place before the kicked them out ,
Possibly but, when all you have is a hammer, everything starts to look like a nail.
Strange I didn’t hear a peep from the IFAC when the government were signing off on the dodgiest of dodgy deals in relation to the 3 billion euro broadband. Cos if they think that made any economic sense given how its been done and where it will be sold to after, then these lot really aren’t good with numbers. Don’t worry lads in order to avoid the multinationals from ever paying the full amount they are meant to, we will just lump another tax on the irish and label it something to do with the climate or health, that usually works and gets a nice juicy tax robbery i mean take
Same old story the have and the have nots , the poor are been forced to pay even if it leaves them hungry as the rich continue to feed their bank accounts .
It’s cool, we have an entire population of idiots who will continued to vote FFG and pay a whole battery of new income taxes, stealth taxes, property, water, carbon taxes, air, death etc so that the poor, struggling mega-corporations aren’t out of pocket.
have your say