Simon Harris (Wicklow, Fine Gael)

I welcome the opportunity to raise the important need for the Minister for Social Protection to address urgently the problems being encountered by parents of autistic children seeking to receive or retain the domiciliary care allowance. I thank the Minister for her presence in the Chamber. According to the Department of Social Protection document, Medical Eligibility Guidelines for Domiciliary Care Allowance, domiciliary care allowance is a payment made in respect of the extra care, attention and supervision needs of the child. It is a monthly payment of €309.50, paid until the age of 16 and is also linked to eligibility for respite care grants and carer's allowance. I know many families living with conditions on the autistic spectrum, as do all Members. These children require extra care, extra supervision, extra attention and, in many cases, dominate a family's life.

Conditions on the autistic spectrum manifest themselves in many ways. To the outside world, a child might seem almost typical but behind closed doors a family could be experiencing severe challenges in meeting the care needs of their son or daughter. When it comes to autism and assessing need, nothing is black or white. It varies from child to child, from family to family. Domiciliary care allowance does not remove the challenges and it does not provide a cure because there is no cure. However, it provides some recognition, some help and some acknowledgement that the parents of a child with autism spectrum disorders, ASD, are meeting those extra care needs. It is a small help in what can be a difficult family life.

It now seems that parents of children with autism are meeting more and more obstacles in their efforts to receive domiciliary care allowance or, for those already in receipt, to retain it. I will give an example in the words of a parent:

I was one of the first to be hit with the refusal letter after Christmas having been in receipt of DCA for a little over 2 years. Apparently the reason they gave for refusing to continue payment was, "your child doesn't require any more care than a child of the same age who doesn't have a diagnosis".

That is earth shattering and insulting to the family of a child with a special needs diagnosis. That child was diagnosed two and a half years ago with ASD.

The child has toileting and feeding issues and can be prone to meltdowns. They have a full-time SNA in school, yet the Department had the audacity to say that the child does not have additional care needs.

I do not expect the Minister for Social Protection or any other Minister to respond to individual cases in a debate - I would not raise any individual case - but I want to assure her that the comments of this parent are replicated by dozens of others who have contacted my office. Fear of the postman delivering a brown envelope with the State harp through the door, informing families with autism that their child does not have extra care needs, is a real worry for many. I implore the Minister to take the opportunity of this debate to talk with her officials in her Department and revert with an update on the issue. Why are so many children with autism being subjected to reviews all of a sudden when their needs have not changed? Why are so many families of children with autism being refused payments they and their doctors know they need - they supply medical evidence in support of them.

I will conclude with a comment from another parent: "I am at my wits end trying to put together enough paperwork to prove what is clearly obvious to anyone who spends time with my children. I cannot tell you how soul destroying this process is." The parents of children with autism have to constantly fight a bureaucratic war with paperwork to prove a need they and their doctors know exist and they do not have time to be fighting. I would be grateful to hear anything the Minister can do to help address the situation.

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