Tuesday, 26 September 2023
Nithe i dtosach suíonna - Commencement Matters
The Minister of State is very welcome. I am holding in my hands the final report of the Joint Committee on Autism, which was launched last June. There are 109 recommendations in the report. The committee met over 15 months, holding 23 public sessions and 32 private sessions. The Minister of State was one of the witnesses at our committee and we met families throughout the country.
One highlighted area is the lack of services and therapies for children in particular. One of the recommendations in the report is that we provide financial supports to families to access assessments and supports privately due to unavailability in the public system until such time as the roles are filled within the children's disability network teams, CDNTs. There are over 800 positions, which are fully funded by the State, unfilled in the various CDNTs due to a lack of professionals being available to work in the system. I know the Minister for Further and Higher Education, Research, Innovation and Science and his Department have done a lot of work in this area and additional places were found for September 2023, both here and in Northern Ireland.We have seen new post-leaving certificate courses in the ETBs to train speech and language assistants, with over 120 places available. In 2024, we hope there will be scope to have more positions throughout the colleges across the various therapies. However, those people will not be qualified for four years at a minimum. We cannot wait four years. That is the reality. We have over 100,000 children on a waiting list at present. Some 30,000 have been waiting for a year. If we compare the HSE data from May 2022 with May 2023, there are an additional 13,000 children on waiting lists from newborns up to age 17.
As a Government Member, I have done an awful lot of work and am very proud of the work we have done over the last number of years. We have led our economy through Covid back to full employment. However, we have failed tens of thousands of families across the country. I am calling for us to put a national treatment fund in place to help parents and families who have to go privately. I am sure the Minister of State has met numbers of them in her constituency and in her work. I meet them on a regular basis. I was only talking to a lady from a different part of the country last night who has spent thousands getting assessments. People have had to give up work and are struggling.
The committee spoke with Dr. Áine Roddy and Professor Ciarán O'Neill from Atlantic Technological University, ATU, in Sligo, who have done numerous reports working out the costs for a lot of families with regard to having a child with ASD. Their evidence to the committee indicated that of the parents surveyed, 74% stated their autistic child had an unmet service need in the previous 12 months. Of those, 39% stated the reason their child had an unmet service need was that they could not afford to pay for the service privately.
We have funding in place for the positions on the children's disability network teams, CDNTs. We do not have the people to work in those roles. We should access the private therapists who are there. This is what parents are doing at the minute but at a significantly high cost to themselves where they are already in difficult circumstances. There are difficulties even in getting domiciliary care allowance, DCA, for a lot of families. I was looking at a report from a family last night who were turned down. There are people who cannot afford it. We have families giving up jobs. As I said, I am very proud of what the Government has done but I feel this is one area where we have let down thousands of families. One way to deal with this is to put a fund in place in budget 2024 to refund parents who access services from properly-qualified, CORU-registered practitioners.