Deputy Mary Lou McDonald- speech from 23 Nov 2022

Taoiseach, I recently met with 12-year-old Cara Darmody from Tipperary. I know you also met Cara in July. Cara is an amazing young person who campaigns tirelessly for better autism services for her brothers Neil and John and for so many other children failed by the system. Cara spoke to the Oireachtas Committee two weeks ago and she said, My brothers Neil and John have been treated disgracefully and I'm here to stand up for them. I'm also here to stand up for the almost 18,000 children who have been left to rot on waiting lists. Cara's family have been through a nightmare, fighting to get proper services for her brother Neil in particular, an experience that her father Mark describes as horrific, humiliating and inhumane. Neil is 10 years old. In 2016 he was diagnosed as having a mild to moderate autism spectrum disorder. In 2020 with little progress or development, Neil was referred to a HSE child psychiatrist who was adamant that his disability was in fact severe. The psychiatrist's recommendation was that Neil be reassessed. Despite this recommendation being sent to three separate HSE managers, it was never actioned. So two years on, Neil has still not been reassessed. He hasn't received the services that he needs. Mark says that he was told that his son Neil will be on a waiting list indefinitely, but the local children's disability team refused to put that fact in writing. No explanation has been given. Mark has made numerous complaints to the HSE, but he has been stonewalled and the family is being ignored. The impact on Neil's development has been catastrophic. He bites and punches himself all day. The child is non-verbal. He needs to be brought on long drives to calm down and he has to sleep with his parents every night. Mark, his dad, says the lack of intervention has done his son irreparable damage. By contrast, his brother, John, has shown real progress. John received earlier intervention, you see, after the Dharmedys paid for him to be assessed privately. The pressure on this family is immense. Both children need full-time care, which has resulted in the loss of employment for both parents. Neil's story is shocking, but it is not unique. In fact, I spoke to families last night in Waterford who are in very, very similar situations. As Cara said, there are more than 18,000 children on waiting lists just for initial contact with the children's disability team. Thousands more go without the services they need. There are 2,500 children whose assessments are overdue. More than a quarter of children's disability posts are vacant, equating to over 480,000 lost therapy hours. This is a result of a failure to plan and invest in the specialised workforce and in services for children with disabilities. Cara told the Oireachtas committee, she said, I am sick of adults who just talk. Why can't you all do something about this and stop the damage being done to children with disabilities? So, Taoiseach, what Neil urgently requires is a psychometric assessment as recommended by his consultant psychiatrist. This is necessary to ensure he is in the right school and that he gets the right health and educational services he needs. Taoiseach, when will Neil get his assessment? Thank you. Taoiseach, please. First of all, I did meet with the Dermody family and with Cara some time ago. We had a very good, frank discussion and a very useful discussion in terms of services for children with additional needs, particularly children with autism. I have been very clear on two fronts. There are two aspects to this. There is the education dimension and there is the health dimension. I am not satisfied and not happy with the services provided through the HSC in respect of children with autism. It is not at a scale and level that it should be at. It is not a funding issue. The resources have been allocated. The HSC are saying it is a recruitment issue. When I came into government, I would have had issues with the Progressing Disability Programme, which has been advanced by the HSC now for nearly over a decade but has really only come into, in terms of additional resources in the last four to five years. But in some respects, and I have met with many disability organisations to try and support service providers and users to get to the bottom of this Progressing Disability initiative. In my view, and I have made it very clear, and we have had this in terms of special schools where Progressing Disability, you would have known in your own constituency, took therapists out of the special schools to have a general pool available diluting the service. We made it very clear that we wanted the therapists back in the special schools as a first step. That has been agreed, although we are following through in the implementation of that with the HSC. There has been resistance. There are different perspectives on this, but I am very clear that in special schools, the multidisciplinary approach is best, and I want the therapists in the special schools. Now, on the education front, over the last two years we have made rapid progress on education, in terms of additional special schools, additional special classes and additional resources. We have more to do. We have also legislatively placed an obligation every single school in the country to do its bit in respect of special needs, and that the schools have to be fully inclusive in terms of children with special needs, and that there can be no refusal of children with special needs in terms of access to schools. That has also been worked through by the Minister for Education, and there is very clear progress to be seen. Now, in terms of therapies, it is not satisfactory in terms of the availability of therapies. Now, it is one of the different, as I say, service providers. In some areas, I am going to be balanced here. The progressive disability seems to be working because there are a lower catchment or a lower number of children or young people being covered by a given area, and the workload seems to be manageable in respect of some CHO areas. In other areas, the load seems to be excessive, and the key issue that the HSE are seeing is the capacity to recruit. Now, that is of no consolation to children and families trying to access services. If you look across the HSE, they have had far greater success in recruiting therapists for a whole range of other services, such as enhanced community care, or indeed, I was at a stroke unit the other day. No issue in terms of recruiting therapists, speech and language, physio, and so on. In terms of children and in terms of the progressive disability area, there seems to be a particular difficulty in recruiting and, indeed, in retaining therapists across the board, and that is a key issue. I have convened two meetings so far with all of the ministers responsible for special needs to deal with this issue, and we have to, in the interim, develop more accelerated means in terms of assessment of needs and in terms of what, on the clinical side, that is a matter of services for Neil, and, in this case, the individual child here, and the services. But the key issue is recruitment of a sufficient number of therapists to provide not just assessment but interventions for children who require an ongoing service. The Taoiseach, Deputy MacDonald. The Taoiseach, there is undoubtedly a big, big problem in terms of recruitment and, indeed, retention of those therapists and specialists. As you say, can I suggest to you that much of the difficulty is self-inflicted by government and the HSE if you are not prepared to pay and reward people in terms of their take-home pay and also their pension entitlements in line with statutory standards, well, then you are going to have a problem in holding and recruiting and holding staff. But I asked you specifically about Neil. So, you have given me a very general, global picture. I know how bad it is out there. My God, every family, every family dealing with this knows how deep the nightmare is, how deep the quagmire is. But I asked you about this child, this 10-year-old child, who two years ago the consultant psychiatrist said the child needs to be reassessed because he is not on the mild spectrum. He is, in fact, profound and severe. He bites himself all day. The household is chaotic. The child needs constant care and is not getting the services he needs but has not even been reassessed. And the HSE are stonewalling the family. That is the fact. So, I asked you, when will Neil get his assessment? I would like an answer to that question, particularly since, as you said, you met the family yourself directly last July. Thank you very much. In fairness, Deputy, I am not going to individually get involved in every case that comes before us in respect of the services in terms of the need for the HSE to provide services to Neil, for example. We will make representations. We will talk to the HSE in respect of the case. But there are other children as well that require access to services, to assessments. We have had a recent legal case which has impacted in terms of the model of assessment that was ongoing at that time by the HSE then, which has to be factored in in terms of how we deal with that. But suffice to say the resources have been made available in terms of the recruitment of all the clinicians and indeed the therapists. It is not about paying conditions, in my view, in terms of, sorry, in many instances there are. And again, Deputy, you know, there has been recruitment, but there needs to be far more recruitment in respect of therapists, particularly in terms of special needs, both through the HSE. As I say in education, we have made very good progress. This area in terms of access to therapies is a key area where we need far more significant progress. Thinking that lives are still missing. I Mr. Mayor The Press. Thank you. The executive Commissioner of the Devoteers. He