Oireachtas Joint and Select Committees

Tuesday, 18 October 2022

Joint Oireachtas Committee on Autism

Autism Policy and Health: Health Service Executive

Photo of Catherine ArdaghCatherine Ardagh (Fianna Fail)
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I thank our guests for coming in today. I appreciate Mr. O'Regan's comments conveying regret to families. Many families who are at their wits' end are watching proceedings. They feel helpless because they have not been able to get services for their children. They do not know to where to turn. They are turning to us politicians and we do not have the answers either. Our guests have the answers. I am not sure whether any of our guests are the architects of the CDNT model but that is the system within which they are working. It is not a system that is working very well. I am glad that it is being reviewed and that changes are being made.

We know anecdotally that 55,000 children are waiting for an assessment of needs. Our guests might update that figure and tell me where we are and how many children nationwide are waiting for assessments of need.

It is great that Professor MacLachlan is bringing in a new system and protocol around the assessment of need but it is ridiculous that it was not done previously. It is clear that assessment does not take 100 hours for every child. What the professor said is welcome, and it was great to hear. That type of practical vision is needed across the HSE.

My colleague, Deputy Buckley, reported on a constituent of his. It is definitely cheaper to supply a laptop in such a situation than to pay professionals to carry out an assessment of need. Some parents are told to go to the High Court and their children will then get an assessment of need within a month because the HSE moves to a different budget to respond in such cases. There must be more practical ways to look at these issues.

If I were to look at the CDNT model from the perspective a cost-benefit analysis, as someone such as Michael O'Leary would, I would say of course we should have people working from community centres. We could have therapists working 12 months of the year. They would not be in school settings. That could be considered the way to get the most out of them. However, we also must consider the journey for parents. Many working parents have children with autism and other disabilities and it is very difficult for them to take time out of work to bring their children to all the different appointments necessary. I know many parents who tell me their places of work have given up on them and they are unable to take any more days off. Those parents then have their own journeys whereby they are almost being bullied by their employers because they are taking time off and perhaps are working less hard than they were previously. It is difficult.

I am glad that Professor MacLachlan mentioned educational engagement, which is crucial. That is the missing link here. The CDNT network is there but it must be redirected towards schools around the country. Therapists must be in the schools because parents cannot be dragging their kids to therapy appointments. Many parents do not have the means or wherewithal to do so. It is unfair. For a child from a family at a social disadvantage, it is not going to be a priority to bring that child to an appointment with an occupational therapist or a speech and language therapist. We have a super education system. It is ingrained in us that people need to bring their children to school. Therapies must be delivered in a school setting. Our guests much push for that delivery.

There is a one third vacancy rate. I asked a few occupational therapists and speech and language therapists why they do not want to work in the HSE or the CDNTs. They told me they do not like it and they do not like the politics involved. They said they do not get much interaction with children because there is a concentration on family engagement and teaching the parents. Those young therapists want to be working directly with kids. They like the idea of working in a school-type environment. These are young women who are not motivated by money and are not going to be whipped into providing an enormous amount of hours. They would love to work in a school-type environment where they know their children and environment. The children are happier because they are not being dragged to appointments. We must consider the ethos within the CDNTs. Why do people, the majority of whom are women, not want to work in the CDNTs? The education piece is the answer to that. We need to push therapists back into the schools via the CDNTs, because that is the structure in place. It would allow therapists to have a school they know and attend. They could build up a rapport with other staff members. That is crucial.

I agree with much of what my colleagues have said about AON, but that is a monster in itself. My message today, which our guests might pass on, is that we should redirect our resources, or as much as possible, towards the schools. We are always going to have children who are not in school settings and who will have to be given therapies in the community. However, for the majority of children, especially considering the increase in ASD classes and early intervention classes, the key is delivering therapies in a school setting.

Professor MacLachlan referred to a diagnosis and, unfortunately, a diagnosis is crucial in Ireland because a child cannot get into an early intervention class or an ASD class without a diagnosis. Nobody needs a diagnosis. The only reason a diagnosis is necessary, as my colleague said, is to access the necessary tools because no matter what, those tools cannot be accessed without a diagnosis. The education piece is key. Diagnoses are required for early intervention, home tuition and level 7 support under the access and inclusion model, AIM. That is key. The diagnosis cannot be downgraded.