Pearse Doherty (Donegal South West, Sinn Fein) | Oireachtas source

Cuirim fáilte roimh an mBille atá curtha chun tosaigh ag an Teachta Finian McGrath ó thaobh an cheist iontach tábhachtach seo. Ba mhaith liom fosta mo chomhghairdeas a chur in iúl do thuismitheoirí na bpáistí le siondróm Down a bhí ag eagrú ar fud an Stáit ionas go mbeadh an cheist seo i mbéal an phobail agus pléite sa Dáil inniu. They deserve our commendation for the way in which they have carried out the campaign to ensure the rights of children with Down's syndrome will be central stage. The number of Deputies who wish to speak in this debate is testament to their hard work.

I welcome the opportunity to support the passage of this legislation to Committee Stage. Sinn Féin is of the view that the Bill needs to be amended on Committee Stage. I note that in his concluding remarks Deputy Finian McGrath referred to other children with more rare syndromes who needed to be accommodated. Without a shadow of doubt children with Down's syndrome have proved that the list system is inequitable. The Minister of State has said the Bill will be permitted to progress to Committee Stage when it will be discussed in the context of the recommendations of the NCSE. He has also said the stated position is not to tinker with the list. I am concerned about what will happen in the next four or five years while the recommendations of the NCSE which are the right ones in the long term are being rolled out.

Professor Sue Buckley is the expert in this part of the world on Down's syndrome. In her contribution at the Joint Committee on Education and Social Protection she stated:

If I had a five year old with Down's syndrome, I would be very worried. There is a danger that there will be a group of children who are not getting enough support who will struggle and fail quite quickly in school before one gets to that point.

I think we are all agreed on the NCSE's long-term recommendations, but we need to deal with the short-term issues. Will the Government make a decision to ensure children with Down's syndrome and those children with other rare syndromes will receive the resource allocations they require?

I again refer to Professor Buckley's contribution at the joint committee on the definition of IQ, which is at the centre of this discussion. She said:

I emphasise that IQ is no longer used in many countries, including the United Kingdom. Most studies show that the distribution of IQ for children with Down's syndrome is in the average range of 50 to 55, but it goes down with age. This needs to be considered when using measures of moderate or mild intellectual disability as main criteria for support.

In this specific profile the children experience more delay in spoken language development and working memory development than would be predicted for their IQ. A child with Down's syndrome who is eight years old may have a non-verbal IQ of a four year old, but his speech, language and working memory skills will be more like those of a two and a half year old. In other words, their spoken language and memory development do not even keep up with their ability to understand and learn things they see. I could talk about this issue all afternoon as it is a very important one.

We need to deal with how the system works by introducing amendments on Committee Stage. For example, Professor Buckley has encountered parents who do not toilet-train their children and stop providing them with stimulation because they want to ensure the child is given sufficient help in the school system, which is the case if the child is regarded as low-functioning. This is one of the unintended consequences. She has said she is a professional and that this would make her want to cry. Other parents have testified that this is what happens. Parents believe they need to make their child as bad as possible in order that they can receive sufficient support. Deputy Regina Doherty referred to a parent who had asked why the system was making parents feel like this. It is abnormal for any mother or father to wish his or her child to fail in order that he or she can get the necessary supports from the State and which they deserve.

I have received a letter from parents who write about their four and a half year old child with Down's syndrome. They want the same for their son as their other two children. They write about the child's health difficulties, including open heart surgery and the fact that the child missed out on the first year of early intervention. The child is a fighter and resilient and approaching his psychological assessment. They say one would presume they would be hoping for the child to perform very well, for his assessment to confirm the progress made and for him to be assessed as having a mild learning disability. However, this is far from the case. Owing to the complete lack of resource hours available for those children considered to have a mild disability, the parents were hoping for a diagnosis of a moderate learning disability in order that their son would have access to resources to give him that necessary boost, a chance of holding his own in mainstream school. Coming up to the assessment they became more distressed about the possible implications of a mild diagnosis, especially with the prospect of there being no resources available in mainstream school. This would mean that they would have to send him to a special school. They describe the scene of their two children going to the mainstream school while a taxi collects their Down's syndrome child to take him to the special school one hour away. No parent should be trying to buck the system in order to ensure his or her child fails in the assessment. The international evidence is available.

Let us not bury this Bill on Committee Stage. I ask the Minister of State to confirm that there will be a change in September for children with Down's syndrome because that will be the test of the Government's generosity. I acknowledge that many backbenchers on the Government side of the House are arguing in the same way.

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