Simon Harris (Wicklow, Fine Gael)
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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.

Joan Burton (Dublin West, Labour)
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The domiciliary care allowance, DCA, is a monthly payment to the parent or guardian of a child with a disability so severe that the child requires care and attention and-or supervision substantially in excess of another child of the same age. This care and attention must be provided to allow the child to deal with the activities of daily living, and she or he must be likely to require this level of care and attention for at least 12 months. Responsibility for the administration of new claims to the allowance transferred to the Department from 1 April 2009, with the existing customer base transferring on 1 September 2009.

The allowance is currently paid to over 24,000 parents or guardians in respect of 26,000 children at a cost of approximately €100 million in 2011, with the accompanying respite care grant costing a further €45 million, a total of €145 million. The respite care grant is an annual payment of €1,700 automatically paid to DCA parents in respect of each qualified child, provided it is in payment at the beginning of June in the particular year.

The application process for the allowance is exactly the same for children with autism as for those with any other disability and involves the completion of a claim form which includes details of the medical condition of the child and the level of care and attention the child needs to deal with normal day to day activity. This information can be provided by the parent or guardian of the child, the child's general practitioner and any other professionals who have dealt with the child. There is a section on the application form which allows for the detail of referrals to any of nine professional services to be listed and reports relating to these referrals can be included with the application.

Applicants are also free to submit any other information they feel will inform the Department's deciding officer in making his or her decision. All the information submitted is assessed by designated departmental medical assessors. Decisions are made by doctors, not departmental administrative officials. Medical assessors are qualified and experienced people who meet regularly to ensure best practice and consistency of approach. As the medical diagnosis is not in dispute, it is considered that the medical assessor is in a position to perform the role of assessing the additional care required for the child by way of desk assessment using the detailed information supplied.

Based on the information available, the Department's medical assessors give their opinion to the deciding officer as to whether the child's disability is such, as Deputy Harris said, that it requires him or her to need continual or continuous care and attention substantially in excess of that required by a child of the same age. They also advise as to whether the disability is likely to last for at least 12 consecutive months.

The range of disabilities that could qualify a child for the allowance is not prescriptive and, as such, each case is decided on its merits, taking account of all the available information. The current application form allows for the applicant to submit as much information as he or she may wish and from as diverse a group of professionals as possible. This ensures that the medical assessor has all the relevant information available before giving his or her professional opinion in each case.

The decision as to whether a child satisfies the qualifying conditions for DCA is made by the deciding officer, having considered all the circumstances including the opinion of the Department's medical assessor. In this context, the Deputy should note that the percentage of children on the autism spectrum that are refused DCA is in line with the overall refusal rate. DCA cases are reviewed to ensure that the conditions for receipt of the payment continue to be met. Scheduled reviews, on the recommendation of the medical assessor, are based on the prognosis of the child's disability and how his or her condition may or may not improve over time.

Parents and guardians are involved in the review process as reviews are initiated with the completion a review of medical criteria form by the parent, which also requires medical input from the child's doctor. The parent returns this form, together with any additional recent reports of medical or therapeutic services the child may be receiving. This information is then sent for review by one of the Department's medical assessors who will provide an opinion to the deciding officer on whether the child still meets the medical criteria for receipt of the payment. DCA remains in payment during the review process until a revised decision is made.

Simon Harris (Wicklow, Fine Gael)
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I thank the Minister for her comprehensive reply which sets out the technical nature of the DCA scheme. From dealing with the issue in my clinic and my involvement with autism charities - many Members of the House will concur - it is not being matched with the reality.

In an effort to be constructive I will highlight some issues. One is the 21 day period of appeal that families are given. In many cases families cannot access the support services they need to back up their appeals within 21 days. Families depending on access through the public service wait for a longer period of time. As I am sure do many other Members, I meet people who come to my clinic in a panic to return the form within 21 days but have not seen medical experts within that period to back up their complaints.

The Minister referred quite correctly to the disabilities the Department's medical experts examine and whether a disability will last longer than 12 months. In the case of a condition like autism, it is lifelong and there is no cure. Some of the reviews I have come across happen at the most bizarre times, such as when an autistic child turns 13 years of age, moves to secondary school or commences puberty. They are very sensitive stages in the life of a child with a disability and a family living with an autistic child. Such reviews can be insensitive.

The problem I and the families I talk to see is that autism is not, strictly speaking, a medical condition. It is a neurodevelopmental condition. It is not the same as being in a wheelchair, with the many challenges that poses. It is different and varies from child to child.

Representatives of autism support groups have met with Department officials and have expressed concern about the DCA operational guidelines for deciding officers. I understand the officials acknowledged there may be an issue and it might be an area the Minister can examine. The Minister might also provide us with up-to-date data on the period of time it takes to assess an appeal, particularly if it has been refused.

Joan Burton (Dublin West, Labour)
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I want to discuss what is happening in terms of numbers. Some 55% of the claims for children with autism-related conditions were allowed from 1 April 2009 to 31 March 2011. These statistics are based on a total of 920 DCA applications processed during that period, with a stated medical condition within the autism spectrum. Of these, 507 were deemed to satisfy the qualifying criteria, and 413, or 45%, were deemed ineligible. Approximately 46% of all claimants are awarded the allowance. The success rate does not vary significantly between claims relating to an intellectual disability and those relating to a physical disability. This must be emphasised in the context of the Deputy's concern that children with an autism spectrum problem may be dealt with differently from other children whose parents submit claims.

The Department took over the scheme in 2009, before which the eligibility criteria were set out in a circular from the Department of Health and Children. The medical criteria, as set out in the circular, referred to children with a severe disability requiring continual or continuous care and attention which is substantially in excess of that normally required by a child of the same age. The medical criteria in the Social Welfare Act are almost exactly the same. There were no agreed national guidelines for the scheme when it was under the Department of Health and Children and the HSE. An expert medical group was established when the scheme was being transferred to the Department of Social Protection. The primary purpose was to set out consistent and objective guidelines for use nationally in determining the eligibility of children for the scheme. The assessment structure developed from the recommendations of that group.

If at the time of a child's assessment there is a recommendation to award an domiciliary care allowance, a review date is often indicated by the medical examiner. I presume the review's appropriateness is based on his or her medical expertise related to the condition the child presents with. The structure is in place. While I appreciate what the Deputy is saying about families being concerned, we are not treating children with an autism spectrum disability differently from others. The circumstances of children who qualify at a certain age for the allowance may improve or change. The expert medical group gave advice on the structure.