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.
I thank the Senator for his question. The Minister of State, Deputy Rabbitte, has asked me to thank him for raising this important issue for discussion in the House. She had a meeting this morning with one of the disability providers and she did not want to have to change it so I am taking this matter on her behalf. I also compliment the Senator, as Cathaoirleach of the Oireachtas committee, on its great work in respect of autism. It was really important having that specific committee. The Joint Committee on Health does phenomenal work but it has so much to cover. We have had the mental health sub-committee and the Joint Committee on Autism. Both did phenomenal work and I compliment the Senator on that. I was delighted to appear before the committee and I learned a lot that day about children who have complex care needs and who may have mental health issues as well as autism issues.
The Minister of State wishes to be completely clear that the development of any child with a disability to reach his or her full potential is of the utmost importance. Assessments and therapy interventions are vital pieces in the supports that can assist on delivering that potential. The principle and importance of early intervention are recognised by the Minister of State, Deputy Rabbitte. Additionally, the key focus of the HSE has been to develop a strategy for services that is, above all, child and family centred and reflective of best national and international practice.
With specific reference to the National Treatment Purchase Fund, NTPF, the NTPF is tasked primarily with reducing waiting times for inpatient or day-case treatment and does not have the statutory remit to arrange or fund any non-hospital services, including assessments of need for children with disabilities. However, the Minister of State recognises the financial challenges for many families in the context of the delays for families seeking to access assessments and therapies for their children. It is for this reason that she allocated over €11.5 million in funding in budget 2023 for the outsourcing of assessments.The ability of the HSE to outsource assessments can greatly assist the enhancement of the CDNTs by way of ensuring they have time and capacity to conduct therapy interventions rather than solely concentrating on assessments. In addition, the Minister of State, Deputy Rabbitte, awaits details on the work of the regional assessment hubs recently established across the country. The hubs are designed to provide a dedicated assessment function and seek to preserve the CDNT so each can continue to delivery therapy services. As a final point, the HSE has developed a tender process for the delivery of assessment of need from private providers. This process has recently been completed and the Minister of State looks forward to its outcome so the next stages of dealing with the waiting times can be progressed.
The Minister of State is fully committed to pursuing every avenue in order to improve access and reduce waiting times for children and families. She is eager to see the benefits arising from the above initiatives. A core benefit is expected to be that public services will be available in a timely manner. Like the Senator, the Minister of State, Deputy Rabbitte, and I are greatly concerned about the waiting lists for children with autism and I hope the HSE, having developed a tender process for the delivery of assessment of need from private providers, will help target that waiting list. When one is a parent of a child and does not have the funds to go private one will possibly be waiting a long time to get the support requested and it can be very difficult. I welcome this and look forward to hearing more from the Minister of State, Deputy Rabbitte, on it.
I thank the Minister of State, Deputy Rabbitte, for the phenomenal work she has done. Much work has been done to make changes, but these changes are not going to happen for possibly a number of years. In the meantime, we still have kids waiting over 12 months for assessment. Parents are getting private assessments themselves to get the early intervention that is needed. It states here the NTPF does not have the statutory remit, but we are in the Oireachtas that makes those changes and we can make that change if we want to. The supports here are of a higher need than a lot of things that are in the NTPF and that is extremely important. It is not a reason for not using it. It is there and there is a process and administration there. This could be administered very easily if an allocation of funding was put into it. As I said, it would only apply where somebody is on a waiting list, is not able to get the service and is going to a properly CORU-registered person. The system is there within the NTPF to do it. We make the laws here and we can change the laws and the remit of the fund to make it happen.
I thank the Senator for that. The NTPF is tasked primarily with reducing waiting times for inpatient day-case treatment. As part of my role as the Minister of State at the Department of Health with responsibility for mental health and older people, we looked at this specifically in relation to mental health to see whether it could work for us. What we are learning is it would be very cumbersome to try to work it out. It works really well for somebody who is waiting 11 months to have his or her hip done. That person goes under the NTPF and the hip is done. It is in and out and more than likely people will be well looked after and will have a good recovery. It works really well for cataracts and things like that. We looked at it specifically with respect to children waiting for access to the child and adolescent mental health services, CAMHS, and to primary care psychology to see whether it would work for us. The challenges are that no one case is the same, whereas with a cataract or other eye operation it is quite different. No one case is the same and we would not know whether we would be asking for eight, ten or 12 appointments. I am sure there are always ways around it. We explored it in my unit to see whether we could make it work for us. The avenue we went down instead was to secure funding from the Minister, Deputy Donnelly, to have targeted waiting list initiatives. We now have six CHOs across the country with waiting list initiatives for CAMHS and we also did it in primary care psychology, because we found that by the time we would have this over the line it was difficult.
I will bring the Senator's thoughts on this back to the Minister of State, Deputy Rabbitte. We always have to try to think outside the box to see what we can do.