Simon Harris (Wicklow, Fine Gael)

I thank Deputy Catherine Murphy and Members of the Technical Group for tabling the motion and affording us the opportunity to debate the issue of the domiciliary care allowance in the House. More important, it provides parents with an opportunity to tell their stories in the AV room of Leinster House and through the media. Some of them are in the Visitors Gallery.

I particularly want to acknowledge the parents who are here tonight from all around the country. No parent of a child with special needs is a natural protester; they simply do not have the time to be a protester and raising a child with special needs does not lend itself to finding that time. Therefore the fact that they are here in the Visitors Gallery tonight says more than any of us ever can about how much this issue means to them and how determined they are that their voices are heard but more important, perhaps, the voices of their children. I thank those parents in the Visitors Gallery and I acknowledge that although they are here in large numbers, it is probably a small representation of the concerns of many families throughout the country.

Collectively, parents of children with special needs are owed an apology by this institution, by my party, by other parties, by people of no party, because even in the years of plenty, even in the years when the Celtic tiger roared, many of the issues and the challenges that families of children with special needs are facing now, they were facing then. Admittedly, while the recession has posed additional challenges, this idea that everything was rosy in the years of economic well-being, is a myth and this says much about how this institution, these Houses of Parliament, treated people and children with disabilities and their families. As a Member of this institution, I want to record my regret and my apology that this has happened.

There is no doubt in my mind that we need an urgent review of the domiciliary care allowance scheme and how it operates. The delays are unacceptable, the inconsistencies in decisions are unfair and the system of reviewing cases can, at times, be cold, illogical and ill-timed. I welcome the fact that the Government has now undertaken to carry out this urgent review. This in itself has moved the matter on because it has dispelled the myth that everything is all right with the scheme and that has been the response we have been getting from this Government and from previous Governments in response to parliamentary questions and Topical Issue matters in this House that everything is fine with the system. Last night, the Minister shifted that position in a very welcome direction by conceding that all is not well and that there is a need for an urgent review and this is to be welcomed. As my colleague, Deputy Regina Doherty said, it is vital that any such review has a way for parents and carers to input into that review. It cannot simply be some form of technocratic, bureaucratic, Civil Service review, with all due respect to all of those individuals under those terms. It has to involve parents because so much of what goes on in the life of a child with special needs happens behind closed doors. Parents are the experts.

I wish to address an issue with which I am very familiar and with which I have worked closely with others, the issue of autism. The current system is not addressing the needs of children on the autistic spectrum in an adequate manner. It is almost impossible for parents to explain to the Department the needs of their child. It is almost impossible for parents to be able to put across the needs of their child in the current application system. This needs to be addressed. In addition, autism does not go away; there is no cure. Parents, teachers and families can work with children with autism. Progress can be made, coping skills can be developed. I have seen it in my own relatives. However, the autism is still there, it does not go away. If one goes into the home of any child with autism, in addition to the many gifts that child has and the joy and the love he or she brings to the family, the challenges remain. The pressures on families remain and all too often, the support systems are not there. We need people in the Department, regardless of political affiliations, to understand this.

While I appreciate that cases need to be reviewed - as do many parents - this needs to be done in a much more structured manner. Parents need to be given ample time and I agree wholeheartedly with Deputy Murphy's motion in this regard. The reviews need to take place at a sensible time in the child's life. It is not right to put the family through the stress of a review at a pivotal moment in that child's life, for example, at the transition from one school to another. There need to be compassion and common sense needs to be evident throughout the Department.

I received an e-mail from a constituent family today who told me they were informed in November 2010 that an oral hearing would take place at a date yet undecided. In summer 2011, they were given the date for that oral hearing. They went to the oral hearing not knowing what to expect.

This review cannot be open-ended, it has to be meaningful and it has to involve parents and there has to be an implementation. On a final point, it is totally unacceptable that any Department sends out a letter with the anonymous signature, "DCA Section". The very least families of children with disabilities deserve is that if a civil servant sends out a letter on behalf of a Department, that letter is signed by a named person and that somebody is accountable for that file. There are people behind these decisions and we need to know them.

I welcome the review but we must deliver on it and I thank Deputy Murphy for the opportunity.

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