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Dáil
‹ Ceisteanna ó Cheannairí - Leaders' Questions

Autism supports and school-age services

Summary

Mary Lou McDonald raises the case of Lexi Forde and wider failures in autism and additional-needs supports, criticising State practices and delay. The Taoiseach defends the Government’s record, says the allegation of file-keeping is being taken seriously, and the Chair repeatedly enforces time limits.

Friday is World Autism Awareness Day. This marks a moment when we should be focused on raising awareness of the challenges facing those on the autistic spectrum and discussing how best to support them. Instead, we find ourselves discussing again how badly the State treats and fails children with additional needs.

Yesterday, we heard the harrowing story of a seven-year-old called Lexi Forde, whose parents have been told she will have to wait until 2026 for school-age support. They said they have been left crying and literally begging for services for their daughter. Lexi’s story is not unique and comes on the back of shocking revelations that the Department of Health was compiling dossiers on children with autism and their families involved in legal actions against the State. It is important to understand that the legal actions being taken were around the State’s failure to provide these children with vital supports and services. The State set out to gather information that could be used to exert pressure, damage reputations, stall and silence these families.

On the very day the "RTÉ Investigates" programme aired, families were in front of the High Court fighting for their children’s right to a school place. The truth is that the State makes families of a loved one with special needs feel like a nuisance when they look for support. They face a closed door. The truth is that the State only gives begrudgingly and withholds services and supports begrudgingly.

Those who take on the system and the State in the courts and refuse to be silenced find that the State goes on the attack and vilifies them. This is a story we know only too well. It was faced by brave people like Brigid McCole, Louise O’Keeffe and Sergeant Maurice McCabe. The fact that this malicious behaviour on the part of this State now extends to the collection of data on the families of children with autism is scandalous and shameful. Inclusion Ireland and the Disability Federation of Ireland have condemned this practice. The Ombudsman for Children has expressed deep anger at how the State treated those whom he described as some of our most vulnerable children. However, the Secretary General of the Department of Health has sought to defend these practices. He says it acted within the law and the HSE goes so far as to describe these practices as "normal" - its word, not mine.

It is alarming that they do not get that the real scandal is that these practices were happening at all. Lawful or not, this was deeply unethical. I do not believe this Government or the State has the consent or support of citizens and taxpayers to attack families and vulnerable young people in this way.

Were these practices under way when the Taoiseach was Minister for Health and Children? Will he indicate whether these practices continue today as we meet? What steps have been taken to make full disclosure to the families on whom these dossiers were compiled and kept? Can the Taoiseach answer those three very direct questions?

Comment on this

First, I state unequivocally that the Government I lead is one that sees as its fundamental objective advocacy for children and providing services for children in education and health in the most comprehensive way possible.

All my political life, I have fought for children with special needs in whatever capacity I have served. I do not intend to change now. When I became Minister for Education and Science in 1998, I introduced groundbreaking change to education services for children with special needs, in particular children with autism. It is hard to credit that in 1998, children with autism were not even recognised as being a specific educational category deserving of specific educational supports. We changed that. I led that change by providing pupil-teacher ratios for the first time for all children with special needs and specifically for children with autism in respect of special classes, with one teacher and special needs assistant, SNA, for every six children, and providing supports for children with autism in mainstream and special classes.

I respect the Deputy's right to raise issues but she should not dare ever accuse me of trying to attack children with autism. That is not what I or my colleagues in government are about. The State has failed in the past and it can do better right now in terms of providing additional places for children with special needs. That is something on which I am particularly focused right now. The Deputy should cut out this kind of thing, saying she is somehow in some virtuous world and everybody else here on the Government side has no empathy or no desire or policy focus to do better for children with special needs, or children more generally. That is just not accurate or correct. There has been an explosion and expansion of services for children with special needs in education. That is incontrovertible. I would like to do more, however, particularly in terms of children having access to more therapies in a timely manner. That is something on which we are currently focused in both education and health.

I watched the "RTÉ Investigates" programme and I would not, in any set circumstances, support any Department seeking, for example, to breach patient-client confidentiality. That would be intolerable, unacceptable and unethical. The Department of Health does not accept that assertion, however, and is conducting a rigorous review of it. As I said, the Government will appoint a multidisciplinary team to assess that situation and give the full story around it. The Deputy has made assertions and damned the officials in the Department of Health without allowing them an opportunity to give their perspective on it. They are parents too and have children as well. They are not immune or somehow unfeeling, unethical people. It is easy to brand people in that manner in this House but is it fair to do so without full knowledge of the situation?

I repeat that there should never be any attempted breach of patient-client confidentiality. No Department official or anyone in government should ever seek to approach clinicians, for example, seeking files in respect of children on which there are legal cases. I am not clear yet as to whether that happened in any systemic way. The Deputy used a phrase about compiling dossiers. That has been denied. A report was compiled on this. Perhaps we need to pause and get the full story. It is unacceptable that it would happen. I assure the Deputy that the Government's commitment and its role and function are to advocate and provide for children.

Comment on this

As I said, on the very day this programme setting out these shocking revelations aired, families were before the court bringing the State to account for a failure to provide places for their children at school. Let me repeat my branding of the practice of compiling and holding files and dossiers on children with autism and their wider families by the HSE, the Department of Health or any other organ of the State for the purposes of facing off legal challenges as absolutely scandalous and shameful. It is a practice that should not be indulged in.

Rather than engaging in distractions, the Taoiseach might answer the questions I put to him. I asked him whether, when he was Minister for health, this practice of compiling files and dossiers of this nature was under way? I also asked him to confirm or deny that this practice continues as we meet here today. I also him to indicate, with regard to the families on whom these dossiers and files were held, whether that has been disclosed to them at this stage.

Comment on this

I thank the Deputy. Her time is up.

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The Taoiseach relies heavily on the report that he cites. Can he confirm that this report will, in fact, be published? I thank the Ceann Comhairle for turning off my microphone.

Comment on this

I did not turn off your microphone or anyone else's.

Comment on this

Lexi Forde, the child referenced by the Deputy earlier, will not have to wait until 2026. We will make sure that is the case. No child should have to wait that length of time. I do not want to comment on specific individual circumstances. It was raised, however, and we will see to it that that does not arise in that case.

The allegations made in the "RTÉ Investigates" programme are being taken very seriously.

Comment on this

I asked three specific questions.

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There was no practice. It was not a practice when I was Minister for health of deliberately going out either to authorise the collection of data in respect of individual children or families. From my understanding of litigation, what normally happens is that pleadings are made and in the course of the interaction between legal teams, the plaintiffs will often provide information to obviously justify the necessity for additional educational and health supports.

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I thank the Taoiseach. His time is up.

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As I said very clearly, any breach of patient-client confidentiality or any attempt by any official or anybody to ring up a doctor or consultant, as happened - they had documentation in respect of one case - would be-----

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We cannot go into this any further. The time is up.

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-----totally wrong and unethical.

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Time is up, please.

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