Deputy Mary Lou McDonald - speech from 15 Oct 2024

There are more than 11,000 children with disabilities waiting for an assessment of needs to be completed. As you know, they are legally entitled to that assessment within six months. Yet over the last decade, we have seen a frightening lack of progress from government in getting children access to their assessment on time. A parliamentary question in response to my colleague David Cullinan shows that less children had an assessment of needs completed in 2023 than almost 10 years ago in 2014. So waiting lists have ballooned and capacity has flatlined. Taoiseach, when you became Minister for Health, there were 4,000 children awaiting completed assessments. By the time you finished, that had risen to 5,000. And now, four years later, on your watch as Taoiseach, that figure has more than doubled. This figure of 11,000 doesn't count the thousands of children who were subjected to illegal, substandard assessments under a shortcut procedure devised during your time as Minister for Health. As you know, a procedure that was subsequently struck down by the High Court. Two years on, and you still don't have a plan to stop the state from breaking the law and to ensure the children get their assessment of need within the six months as is their legal right. The therapists needed to meet demand haven't been hired. Persisting pay inequality between the HSE and Section 39 organisations means that many children's disability teams simply cannot retain experienced staff. This has serious consequences. A child needs a completed assessment of needs to access an appropriate school place, to get the right mix of health, social care and educational supports, and for many guardians and parents and carers, for access to social protection supports. So, the excruciating weight and uncertainty causes real distress for children and their parents. Jayden from Dublin is one of these children, Taoiseach. He is five years old. Jayden has an intellectual disability, epilepsy, autism and he requires a feeding tube. He is due to start primary school next September, but his mother, Ciara, was told by his psychologist that Jayden must have a completed assessment before starting. So, she sent off the assessment of needs form last January. That is ten months ago, and still she has heard nothing back. Ciara says she is now very worried that Jayden won't be able to start school on time, that he won't get the supports that he needs to progress, to fulfil his potential. This is a really horrible situation for any child or any parent. I am the one who is involved in this year. I am the one who is responsible for this year. I do not know that the other family will be able to get the benefits of this year. I do not have the benefits of what people are doing. So, delayed assessments mean parents not having full information, families going unsupported, and delayed development for children. development for children. I am asking three things of you Taoiseach. Firstly, hire the therapists that are needed. Secondly, resolve the pay inequality between different children's disability network teams. And finally, please set a date for meeting the legal rights of these children to ensure that no child waits longer than six months for their assessment of needs to be completed. Deputy Macdonald for raising this important issue, an issue that I know is close to all our hearts and all our priorities. I note your private member's motion on this week, which does apply an appropriate degree of focus to this important issue. We have taken a number of steps in recent weeks alone to try and make significant progress in the lives of children with a disability. We have launched a new autism innovation strategy. We have commenced the restoration of in-school therapy supports for children in special schools. When you talk of Jayden and whilst I do not know all of Jayden's needs, it is so important that we put the therapies back in schools so that the education system and the health system are working much more closely together. We have provided the funding for that. We have also quite rightly provided a significant degree of additional funding to procure additional assessments of needs. The issue that you rightly highlighted, I think it was the Labour Party in this House who tabled a private member's motion on this quite a while ago, inspired by Cara Darmody, where they said we should look to use private capacity and support the use of the private sector. We have tried to do that in a slightly different way, albeit, but now procuring capacity in the private sector as well as the public sector to significantly increase, and I will come to that in a moment, the number of assessments of needs. We have published a new €15 million respite investment plan, and quite rightly as you called for in your private member's motion, we have also agreed, under the leadership of Minister O'Gorman, to opt into the optional protocol to the UN Convention on the Rights of Persons with a Disability. I am very clear there is a lot more we need to do in relation to disability services. I do get that, I appreciate that. That is why we now see, for the first time, additional funding bringing the disability services budget for next year to over €3 billion, with a total allocation of €3.2 billion. This represents an increase of €1.2 billion on disability services in Ireland in five years. It is a record allocation, it will ensure that more people can access more disability services more quickly, and it does also recognise a number of the pay pressures that you referenced in terms of service providers. In relation specifically to the issue of assessments of needs, I will just say a couple of things. Firstly, we have placed a real focus on this. In May we announced a decision to finance an assessment of needs waiting list initiative through the procurement of private assessments that I referenced. That is working. In the first half of this year, we have seen a 28% increase in the number of assessments of needs completed when compared to the same period just last year. The campaign led by Cara Darmody is making a difference and showing the positive impact that we can actually have by spending taxpayers' money rightly on using private capacity to go alongside the public capacity. 1,092 additional children got assessments of needs commissioned from private providers and assessors during the months of June, July and August, so 1,092 more assessments done as a result of that decision we took in May. I am very pleased to say that we have now allocated, because it is working, we have allocated a further €10 million funding in our budget only a few weeks ago to continue this initiative into next year and actually to grow the scope of it as well. Work is also ongoing to increase the capacity of our children's disability network teams through several recruitment campaigns. Currently these teams, called CDNTs, are providing services and supports for over 46,000 children. Disability services were protected during the HSE recruitment embargo and while recruitment and retention of staff is a challenge, there is significant work ongoing to fill vacant posts on each of the 93 CDNTs. It is positive that we see the number of people now working in these teams increasing year on year and the disability workforce increasing year on year as well. New posts have also been funded in the budget for CDNTs, namely 20 senior grade and 20 staff grade therapists and 20 therapy assessments. The second point I would just make is this, I do think we need to have a very honest conversation around how we respond to that decision in relation to court and the court judgment. I very much respect the independence of the court, but from a policy point of view I do not agree that the laws of our land should dictate such rigidity in terms of the length of time and assessment of needs required. That is not just my view, it is the view of countless parents and countless disability representative organisations across this country. Deputy MacDonald. The only problem with that perspective, Taoiseach, is that the legal obligation for an assessment of needs within six months is set out in law and as we speak now the state continues to break the law. You will concede and accept that. I hope you also accept that that is not a tolerable situation and that has to change and for it to change you need to name a date in my opinion. That is also the opinion as you know of Cara Darmody, of her father Mark and everybody who has campaigned very very hard on this issue. I mentioned Jaden and Ciara to you Taoiseach. Ciara is like many many parents, she is not on her own. There are 11,000 waiting and waiting for their assessment of needs. She is frantic with worry now, she completed the forms in January, she is waiting, it is 10 months on and they are left in a state of limbaugh. I am sure you will accept that that is also unacceptable. So I want to put the question to you again and I might write to you specifically on Jaden's case, although he is not an exception, there are many many others in that situation. Rather than questioning the commitment for the six-month rule Taoiseach, can you make a commitment that the law will be respected and that that six-month rule will be upheld? You know that that is the campaign of Cara Darmody in the end. Yes, private provision in the meantime and the finance for it, but she said loudly and clearly to you as you stood in photographs with her, obey the law, get the state to obey the law and respect and enforce the six-month rule. Thank you very much Deputy Chair. I smile supportively there because definitely Cara does not need you or I to speak for her because she has been very clear in being able to speak to me directly and I have appreciated those engagements, blunt and frank as they have been, she is an incredible young woman. But what I would say directly to Jaden's mum, Ciara, and I would be very happy to engage with you further on this Deputy MacDonald, what I would say directly is we have a pathway now to make significant progress on assessments of needs, and it is not just me saying that, I genuinely believe it on the basis of an initiative we started in May. I saw the difference when we put several million, I think seven million from my memory, through Minister Rabban, Minister O'Gorman, into the assessments and needs waiting list initiative. I saw 1,092 additional children get the service. That is why we have now increased that pot by a further 10 million euro. I agree with you, it is to happen only alongside building capacity for the CDNTs. But I do say this, and I said this directly to Cara Darman and I said it directly to Mark, we will map out exactly the impact that that will have on the sixth month and I am happy to engage with you on that. We will do it in the context of the service plan. But I still stand over the view from talking to many parents around the country that many parents want access to the therapies rather than an elongated assessment of needs. Of course they want an assessment of needs, but they want that to be as short an amount of time as necessary to give them the answers as to the therapies the child requires. And that's the bit that I think we should return to in terms of changing and reforming the law. And I'm very happy to work with you on reforming the law in that area if that's something we can share a view on. Deputy Batchett, please.