Ann Phelan (Carlow-Kilkenny, Labour)
Link to this: Individually | In context

I ask for an update on the position of domiciliary care allowance and the way it is to be administered. This is a monthly allowance which is paid to the parents or guardians of children under the age of 16 who have severe disabilities which require continuous care and attention.

I recently met three women to learn about the plight of their children. They also outlined to me the changes they would like to see in the way the domiciliary care allowance is administered and allocated. These women represent families in my constituency and across the country who are caring for their children as best they can in the face of cutbacks in almost every area.

Further consideration needs to be given to the way in which this allowance is administered, including the means by which children are assessed and the process through which decisions can be appealed. I welcome that the Minister for Social Protection increased the time allowed for preparation of appeals from 21 to 60 days earlier this year. I fear, however, that we may not be treating children who receive domiciliary care allowance in this country the same as children in other countries which operate similar allowance schemes. Reviews should be conducted by those who are most knowledgeable about the area, have experience of working with these children and are able to make the appropriate decisions in order to make life easier for those concerned. Any change to the system should be based the input of people on the ground, namely, the parents and guardians of these children, because they deal with the problems arising on a daily basis.

Matters that we may consider trivial or meaningless can amount to major events for those who are forced to cope in these circumstances. Domiciliary care allowance may not solve all these families' problems but at least it eases the burden of everyday life and allows them room to breathe. It must be noted however, that the number of children accessing the scheme has increased by more than 3,000 over a three year period. It is expected that expenditure this year would be in the region of €146 million. Any review of the scheme would be welcome for these reasons.

Simon Harris (Wicklow, Fine Gael)
Link to this: Individually | In context

I thank the Ceann Comhairle for allowing us to raise the issue of the domiciliary care allowance. I welcome the review of the scheme because it is what parents and Deputies on all sides of this House have been seeking. It is clear that the current system is not working for many families. Officials can hide behind statistics but the parents who protest outside the gates or visit us in our clinics know that something has gone wrong.

It was politically courageous of the Minister, Deputy Burton, to heed the calls by parents and groups like the DCA Warriors by announcing a review. However, I ask for more detail on what the review will entail. It is vital that it starts from an acknowledgement that the current system needs to be overhauled rather than being seen as a box ticking exercise. I note that the Minister will appoint three representatives from NGOs to the review body. How are these representatives to be selected? It is vital that parents are allowed to play a key role. I draw Members' attention to the work of the DCA Warriors, the members of which are warriors for their children's rights.

The Secretary General of the Department of Social Protection gave a commitment to the Committee on Public Accounts that no family would lose its domiciliary care allowance while the review is ongoing. In other words, payments will not be ceased until the policy review is complete. I ask for clarification on this commitment. When will the process be concluded? Yesterday the Minister referred to consultations with parents. What mechanism will be used for the consultation process?

Regina Doherty (Meath East, Fine Gael)
Link to this: Individually | In context

I welcome the announcement by the Minister, Deputy Burton, on a review of the domiciliary care allowance system. I ask for clarification on the role to be played by the NGO representatives. In the recent debate on this issue, speakers approved of the terms of reference for the review but stressed the importance of including parents' representatives. These are the people who have everyday experience of raising children with disabilities. The officials and the bureaucrats do not seem to understand the hidden problems that arise. This is borne out by the type of questions asked not only during the paper review but also subsequently in oral hearings.

In regard to the NGO representatives, who will they be, from what sectors will they be drawn and will they include parents of children who are in receipt of the domiciliary care allowance and have gone through the review process? Such parents could share their real life experiences of what is wrong with the process, as well as provide examples of the amazing achievement of living relatively normal lives despite the huge stresses faced on a daily basis by virtue of having children who are on the autistic spectrum or have Asperger syndrome or Tourette syndrome. When will the review commence, when will it end and how long will it take for the results to be announced?

John Perry (Sligo-North Leitrim, Fine Gael)
Link to this: Individually | In context

I am taking this topical issue on behalf of the Minister for Social Protection, who conveys her apologies to the Deputies for not being here to respond in person.

The domiciliary care allowance, DCA, is a monthly payment to the parent or guardian of a child with a disability so severe that he or she requires care, attention and 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 requirements of daily living. The child must be likely to require this level of care and attention for at least 12 months.

The allowance is currently paid to over 24,000 parents and 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. Parents in receipt of domiciliary care allowance also qualify for carer's allowance and household benefits, subject to fulfilling certain criteria, and some 40% of those on the scheme receive these payments. Those who receive the carer's allowance and household benefit package, in addition to domiciliary care allowance and respite care grant, each receive a total of almost €17,000 per annum from the Department.

The review of the domiciliary care allowance announced by the Minister in May is due to commence in early July. The working group to review the scheme will be chaired by Ms Sylvia Langford, retired director general in the former Office of the Minister for Children. The working group will include representatives from the Departments of Social Protection, Health, Children and Youth Affairs and Public Expenditure and Reform, as well as from the National Disability Authority. It will also include three representatives from key NGO organisations representing parents and guardians of children in receipt of the allowance along with other members with relevant expertise. The review will examine and report on the policy objectives and legal provisions underpinning the domiciliary care allowance scheme. It will review the current administrative, medical assessment and appeals processes underpinning the scheme, including an examination of the duration of review periods for the scheme based on the medical condition of the children involved and taking account of other priority demands on the medical resources of the Department.

The medical guidelines and the report of the expert medical group will be reviewed having regard to the three years operational experience since the scheme transferred to the Department. As part of the review, a consultation process with parents and representative groups will be undertaken to ensure parents and their representatives have an opportunity to make their concerns known in respect of the administration of the scheme. Reviews of individual claims are suspended while the review is ongoing. A report and recommendations emerging from the review are to be submitted by the end of December 2012.

In separate work, the availability of supports and services for children with disabilities will be mapped to see if there is an opportunity for greater linkage and consistency in the assessment for such support and services. This work will be led by officials in the Department, in conjunction with other relevant Departments and is expected to be completed in the autumn.

I am aware of the heroic efforts of parents to support their children and of the vital role played by the income supports paid by the Department in enabling people to live with dignity and to support their children. It remains my primary concern to ensure that parents of children who continue to meet the qualifying conditions continue to receive the allowance.

Ann Phelan (Carlow-Kilkenny, Labour)
Link to this: Individually | In context

I warmly welcome the response of the Minister of State and I warmly congratulate the Minister for Social Protection on her plans for this review. One of the best things set to happen under the review is the fact that the new working group, which will be staffed by the most appropriate people, will meet parents and guardians of children. Legislators may form the law in Leinster House but the ordinary people must live with it. Quite often, legislators do not gauge people's feelings. This review affords people in receipt of domiciliary care allowance the opportunity to have their wishes heard and to make their opinions known. This is welcome. I am sure the new review will be carried out with zeal by the working group. I thank the Minister for Social Protection for the response. It is great to see that she listened and went a long way to give the parents what they wanted.

Simon Harris (Wicklow, Fine Gael)
Link to this: Individually | In context

One of the key points I asked for was clarification that no current claims will be suspended during the review. It is very important that the Minister of State has provided that commitment, on behalf of the Minister for Social Protection. It will be welcomed by thousands of parents in receipt of domiciliary care allowance who are fearful of the review.

I am still seeking an answer on the fact that three NGOs will be represented on the review group. Above and beyond consultation, that ensures there will be representatives of parents groups sitting around the table. I am eager to work out how they will be selected so they are real-life parents, as Deputy Regina Doherty suggested, who have been in receipt of domiciliary care allowance or are experiencing issues with it.

I welcome the fact the review will be completed in the autumn. The domiciliary care allowance is paid to children with extra care needs. The issue with the current system is that it does not recognise extra care needs that become apparent behind closed doors. When examining the application process and the application form, it is important to consider children with conditions such as autism spectrum disorder.

Regina Doherty (Meath East, Fine Gael)
Link to this: Individually | In context

I join with my colleagues in welcoming the response. I do not want to be petulant but I will ask again about the three representatives bodies. Who will they be and what criteria will be used to select them? Given that a myriad of organisations represent some but not all parents of children with particular disabilities, we need to ensure the three NGOs chosen and the relevant people within the NGOs are representative of the people who have gone through the review process. I will not name any of the NGOs and I hope I am making sense. Otherwise, we will learn nothing except how it should be in a textbook. The reality of what people live through and the current description of the review process are poles apart. The merits of the review are marvellous. I concur with Deputy Ann Phelan that the Minister for Social Protection is incredibly brave for doing this as a response to the issues raised over the past couple of months. It is imperative that this is worthwhile and that, at the end of the process, people who walk the walk get to sit down and devise a new review process to make life easier for people in the future.

John Perry (Sligo-North Leitrim, Fine Gael)
Link to this: Individually | In context

Regarding Deputy Phelan's point on consultation, consultation with parents is important. The Minister for Social Protection has a clear determination to listen to and co-operate with the people most affected, namely, the parents. This will be a review with straight talking and action. Hopefully we will end up with results.

Deputy Harris's point, that no payments will be suspended, is correct. Consultation and evaluation of children with extra care needs is important. The Minister for Social Protection is determined to make a difference because this has been promised for quite a while. The review is meaningful and will come up with a clear plan of action. Deputy Regina Doherty referred to representative bodies. The Minister is open to suggestions and recommendations. She welcomes recommendations from each Deputy directly or via the Secretary General. It is important we get the views of parents and Members representing their constituents.

Deputy Regina Doherty referred to the parent representative bodies. If she contacts the Minister directly with suggestions on bodies that should be represented, I am sure the Minister will take her views on board.