The issue was raised with the Taoiseach by Deputies Lisa Chambers and John Curran on Tuesday. Deputy Lisa Chambers just hosted a meeting to which every Member of the House was invited, and there are several hundred people outside the front gate of Leinster House, so the matter should be on the Tánaiste's radar. I do not have to give him notice of questions I ask. He says he wants the best drugs available on the market. We want that too, and that is why we supported the initiative. Why, however, are we the only country in the initiative where this drug is not being made available? Why do children living in Belgium, the Netherlands, Luxembourg, Austria or at least 20 other countries have the future that is being denied to these 25 Irish children? It just does not make any sense. Biogen has submitted a new proposal to the HSE, which, as I said, is delaying a proper analysis. There is no time for delay. Families see the life-changing possibilities of this drug. They are being denied these possibilities by a bureaucracy that does not understand what it is like, a bureaucracy that should go out to the front gate, talk to these children, talk to Grace, Cillian and Sam, see how strong they are and how determined they are to live their lives and put the bureaucracy aside and put these children first.

I was not suggesting we change precedent and that the Deputy give me notice of questions. I am just saying I would have liked to have given him a more accurate answer. I am conscious of this issue. It is being considered by the HSE for approval right now but it needs to go through the process to ensure that the same procedures apply to this drug as to others. I am very familiar with the pressures that families are under while waiting for decisions such as this. That is why they come to Leinster House on days like today to try to push that process along. I hear that and I will speak to the Minister, Deputy Harris, who is not the decision-maker here. There is a process that needs to be gone through for a drugs approval. As I said, many other drugs have been approved through a similar system this year, and a decision will be made on this drug as soon as we can make it.

Yesterday, RTÉ aired a piece that can only be described as shocking about the provision of assessments of need for children with a disability.

Figures released by the HSE show that there are 3,850 children across the State with a disability or suspected disability who are overdue an assessment of needs. Children with signs of autism make up a large part of this number. The Tánaiste knows that under the Disability Act 2005, any child suspected of having a disability is eligible to apply for an assessment of needs to identify his or her health requirements. He will also know that such an assessment is legally required to be completed within six months of the making of the application. However, nearly 4,000 children are being denied this right. They are being failed by the health service and the Government. The parents of children who find themselves in this situation are at their wits' end. They are desperate to find out why their children are displaying such symptoms and for a diagnosis in order that their children can access the services they need.

They are not the only children who are being failed by the health service. Others are also being treated disgracefully. I want to talk to the Tánaiste about Sophia McGuinness. Sophia is 12 years old. She has scoliosis and cerebral palsy and has been waiting for surgery for almost a year and a half. On Tuesday her father, Aaron Daly, delivered a letter to the Tánaiste in which he outlined Sophia's case, in addition to the plight of another 188 children in need of spinal surgery. Sophia is one of more than 50 children who do not feature on the scoliosis waiting list because they have had their surgery suspended. Her father says the waiting lists are an exercise in manipulation. My colleague, Teachta Louise O'Reilly, recently met Sophia. It was heartbreaking. Sophia cannot speak, but she can communicate with her eyes using assistive technology. The first thing she said to Teachta Louise O'Reilly when she went to visit her in her home was "I am in pain." Children like Sophia are living in agony and their parents are exhausted from battling the system. They are worn out from fighting for their children's needs day in and day out. It is a battle they should not have to fight. No father should have to come to Leinster House to look for a meeting with the Minister. We all watched in horror last year when RTÉ aired its programme "Living on the List". It gave us an insight into the struggles faced by these children and their families on a daily basis. In the aftermath of that programme the Minister for Health, Deputy Simon Harris, offered an apology and made promises. Those promises have been broken again and again.

When is the Tánaiste going to do right by Sophia and the other 188 children who are waiting for spinal surgery? When will he do right by the 3,850 children who have a disability or suspected disability and are legally entitled to an assessment of needs but who are being failed by the State? Will he ensure Sophia's father who travelled to Leinster House on Tuesday to meet the Minister will have that meeting? Will he ensure the Minister will meet her father and listen to the agony, pain, trauma and upset the family have had to go through? The same is experienced by many other families in the State.

When I met Sophia's father on the way into Government Buildings on Tuesday, I spoke to him about the matter. I experienced some of the frustration which I am sure the Deputy has also experienced when speaking to him at the pressures he, his family and daughter are facing as a result of having to wait for surgery.

The long-term strategy to develop sustainable scoliosis services from 2018 has been prioritised by the Department of Health and the HSE in the 2018 HSE national service plan. An additional €9 million has been provided for the HSE in 2018 specifically to develop paediatric orthopaedic services, including further increasing access to scoliosis services. The Children's Hospital Group continues to progress the move towards implementation of a long-term, sustainable and safe paediatric orthopaedic service, including scoliosis services for children and young people. In July the group published the redesigned scoliosis ten-point action plan and an orthopaedic implementation group has been established to oversee its implementation. The action plan was developed with the participation of professionals, families and advocates. Importantly, it has ensured the voices of the children involved have been incorporated into it. The action plan contains commitments that the HSE and the Children's Hospital Group will, in 2018 and beyond, maintain the four-month target, which is international best practice for all patients who are clinically deemed to require surgery. In 2018 the Children's Hospital Group aims to deliver 447 procedures, compared to 321 in 2017 and 224 in 2016. The 2017 figure rises to 371 when 50 outsourced procedures are included. Activity levels to the end of August show that the Children's Hospital Group has delivered 279 surgeries, of which 135 were spinal fusions. Activity levels in the year to date are running slightly ahead of target.

Progress is being and will continue to be made. We will continue to put funding into these services, as necessary, in order to get back to where we need to be - a point at which we can meet international best practice standards in waiting times in order that we will not again hear the hugely emotive and difficult stories of Sophia and many other families who are traumatised and being damaged by the inability of the State to date to provide the services they should be expecting to receive.

As I said, Sophia does not appear on a list because, as her father said, the lists are a manipulation. As her surgery has been suspended, she does not appear in the figures the Tánaiste is presenting to the House.

I have not presented figures.

What is real is that Sophia and other children like her are in pain. They are in pain today and will be tomorrow until the surgery is provided. What we do know is that the Minister for Health, Deputy Simon Harris, gave a commitment in 2017 that no child would wait longer than four months for surgery. Sophia has been waiting in pain for a year and a half. We can collectively lift her pain if we make sure we will have a system that is fit for purpose and which will not allow children like her to go month after month living in pain and agony because of her condition. What assurances can the Tánaiste give to Sophia and the other 188 children who are waiting for spinal surgery? The Tánaiste did meet her father who wants to meet the Minister. Will the Tánaiste give a commitment that the Minister will do the right thing and meet him? He should not have to attend at the gates of Leinster House to try to flag down a Minister. I appreciate that the Tánaiste stopped for a moment to talk to him, but there are things that he wants to say and proposals that he has put forward. For example, he proposes the opening of theatres five days a week, up from three. He wants to ensure there will be intensive care unit beds available in order that his child can recover properly. These are measures that could be put in place, but the Government is failing the children concerned and breaking its promises. As all of this goes on, children are waking and suffering in pain.

I understand Sophia's family have a meeting in the hospital today.

They have just had it and there is no date for surgery.

I did not give figures for waiting lists, but I will. Waiting list figures at the end of August show that there are 188 patients on the waiting list for spinal surgery, of whom 109 are awaiting a spinal fusion. A total of 90 of the patients are actively waiting; 14 are come-ins, which means that they have a date for surgery; 40 have had surgery suspended; while 44 are on a planned procedure list. This represents a reduction from a figure of 299 last year, but it is still far too many. I am sure many of us in the House have worked with the families of children with scoliosis who need a spinal fusion procedure or rod extension, are waiting and should not be, given the fact that they are growing and need the extensions. I do not need to be told how difficult this is for families, with whom I have worked, as has the Deputy. What we need is a system that can provide services for all families in a much more effective and timely manner than is the case. The Minister for Health is setting about doing this and prioritising it in terms of a policy change and financial commitment.