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Dáil
‹ Ceisteanna ó Cheannairí - Leaders' Questions

Autism services and Cara Darmody

Summary

Deputy Bacik pressed for better autism and neurodiversity services, highlighting long assessment delays and earlier commitments to reimburse families for private assessments. The Taoiseach welcomed the issue, agreed to meet Cara Darmody and her family, and said the new children, education and disability committee and the autism strategy were imminent.

The Government is failing neurodiverse children and their families. It needs to do more on autism services. One year ago, we in Labour put forward a Dáil motion on autism services for children. It included a call for action to end the lengthy delays, the backlog, in accessing assessments of need for children. Responding to our motion then, the Minister of State, Deputy Rabbitte, committed to reimbursing parents for private assessments where the State had failed to provide them after a certain time. That announcement was significant and very welcome.

As we all know, receiving a diagnosis is just a first step. It does not guarantee access to school places or therapies and cannot fix a society which is inaccessible and even discriminatory. Without a diagnosis, however, children and young people with autism are often deprived of access to the supports they need to thrive. Lack of diagnosis deprives them and their families of clarity and can delay detection of other conditions, such as ADHD. We therefore welcomed that announcement from the Government at the time, a year ago, because the HSE's waiting lists are a huge part of the problem and parents should not have to pay for something the State should be providing. In a cost-of-living crisis, many parents simply cannot pay, with the cost of an assessment often as much as €2,000. We were led to believe then that parents would begin to be reimbursed if the waiting lists had not been resolved by August 2023. Instead, since then, as one parent recently told me, things are not improving. "It's worse they're getting," they said.

I know the Taoiseach is aware of this because in his recent Ard-Fheis speech he said that the backlog in assessments of need must be unblocked. He committed to establishing and chairing a Cabinet committee to break down these silos and address this. Last week, that committee on children, education and disability was announced. Under the Taoiseach's predecessor, however, there was already a Cabinet committee on children and education, which the new Taoiseach sat on as a Minister. Does adding the word "disability" to the title constitute the height of the new ambition to focus on disability? If so, it is disappointing that the "new energy" we have heard so much about may have petered out already. If this was really a serious commitment, would the Taoiseach not establish a stand-alone Cabinet committee on disability? It is more than 25 years since Mervyn Taylor of the Labour Party first initiated legislation to end discrimination on disability grounds but the State continues to fail so many. It is hard to see how appending the issue of disability rights onto the existing committee will make a change. We need real ambition and movement.

I know that in June 2023, the Taoiseach met the amazing young advocate, Cara Darmody, only 13, who has worked so hard to raise awareness about autism and to ensure that children get timely access to assessments. We worked with Cara and her family on the motion last year but there has been no follow-up since. Will the Taoiseach meet Cara as soon as possible? I spoke to her father yesterday about this. When will we see that commitment from last year made good? When will the Taoiseach's Government start repaying families who have had no option but to seek assessments elsewhere? When will the Government vindicate the rights of all those waiting on assessments of need? Will the Taoiseach meet Cara?

Comment on this
Simon Harris The Taoiseach Fine Gael

I thank Deputy Bacik for raising this important issue. I will absolutely meet again with Cara Darmody.

Comment on this

I thank the Taoiseach.

Comment on this
Simon Harris The Taoiseach Fine Gael

It was a pleasure to meet with her last June. She would blow you away when you meet her, as the Deputy knows. She had a number of items on which she wanted to make progress. She has got some of them over the line and I know she wants us to do a lot more. I am very happy to meet her and her father Mark and I will be in touch with them to arrange that. She has written to me very recently as well. I am very happy to accept Deputy Bacik's invitation today to meet with her, so I will arrange that.

The Cabinet committee on children, education and disability will meet for the first time on Monday. The Deputy is right that we have decided to have children, education and disability together. The rationale behind that is that the Department of Education and the Department of children have responsibility for co-ordinating our national disability strategy and the like, and I just felt it was appropriate to use that structure to have them there. This will involve me chairing a Cabinet committee on disability issues once a month. That is a commitment I wanted to give to this issue because there is a lot of work to be done. The Minister of State, Deputy Rabbitte, has done really good work in this area. Deputy Bacik has acknowledged some of the good engagement she has had. The Minister of State will very shortly publish an autism strategy, which has been worked on for quite a significant period. I will follow up directly with the Minister of State on the issue regarding assessments and the payment of assessments because she gave that commitment in good faith - I have absolutely no doubt about that - on foot of the Labour Party motion, and I want to help her to be able to deliver on that in any way I can. I will come back to Deputy Bacik directly on that.

A couple of other things are worth mentioning. One thing I will want to look at quickly is the issue of workforce planning.

Whether one is paying for a private assessment or waiting for a public assessment, it is true to say that we are not training nearly enough people for therapy posts. I will task the Minister, Deputy O'Donovan, with working with universities to see how we can ramp up the number of training places in Irish universities for speech and language and occupational therapy and physiotherapy. We have started on an all-island basis. A number of places in therapies have been ring-fenced for students from here in Northern Ireland since September. I hope we can do more from next September in that space.

The second issue I would like us to look at and which I intend to look at is that of in-school therapies. This had worked well. There were a number of pilots, for want of a better phrase, that had worked in schools in which therapies were provided in schools. One was in my constituency and I was familiar with it. I would like to see if there are learnings from that as to how it could be embedded in the school and health service coming more closely together to meet the needs of the child. I am happy, as the body of work of the Cabinet committee gets under way, to have a debate in this House on what the scope of that work might look like and how people across the House can feed into it. I fully accept we have a lot to do in this space. I will meet Cara in the next couple of weeks and get her views as well.

Comment on this

I thank the Taoiseach for committing to meet Cara Darmody and her family. They will be really appreciative of that. As he said, that meeting will take place in the next few weeks. They have new information. They have been incredibly impactful - I must say that and pay tribute to them - in raising awareness about the lack of services, lack of autism services and services for neurodiverse children. I also thank the Taoiseach for clarifying that the new committee will meet on Monday and for committing to following up with the Minister of State, Deputy Rabbitte, on the issue of the reimbursement of payment for private assessments of need. I am also glad to hear that the Minister of State will soon launch the national autism strategy. It is long overdue. Will the Taoiseach give us a timeline on that? The reality, of which I think we are all aware in this House, is that parents of children with neurodiversity or autism have to fight hard for every service. It is not just about assessments of need, although that is the focus of what we are talking about today. The Taoiseach also referred to issues like in-school therapies, broader services and school places. Many children have to travel far out of their communities to access these services. Even when they have the diagnosis and even when the service is provided, it is not provided anywhere near where they live. It means they cannot have the same quality of life as their siblings. I appeal to the Taoiseach to give us a clear commitment as to what meaningful change the new Cabinet committee will make for those children and their families. I thank him again for agreeing to meet Cara Darmody.

Comment on this
Simon Harris The Taoiseach Fine Gael

I look forward to meeting Cara and working with Deputies who are like-minded on this issue across this House. It is an area in which we can make progress together but one in which we really need to do that. I will check with the Minister of State, Deputy Rabbitte, but my memory tells me the publication of that document is imminent. The strategy is much awaited and a lot of work has gone into it. I will confirm that in writing to the Deputy. I should also have said that in reconstituting this Government, I appointed my colleague, the Minister of State, Deputy Naughton, to have responsibility at the Cabinet table for special needs education. I thought that was another important lever we could pull in amplifying the voices of people with a disability, particularly from an education point of view.

Another area we can look at quite quickly is career guidance for children in special schools. I was kind of astonished to realise that this does not happen at the moment. I was, until very recently, the Minister for third level education. We now have courses for students with intellectual disabilities in third level but if you are in a special needs school, you do not have access to career guidance supports. The Minister for Education, Deputy Foley, and I just published a new strategy on career guidance. That is one of the actions in it on which I would like to see early movement. I take the Deputy's point about the geographic inequity and the need to map out properly the delivery of both our school and health services. I will keep in touch.

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