Domiciliary Care Allowance: Motion (Resumed)
The following motion was moved by Deputy Catherine Murphy on Tuesday, 8 May 2012:
That Dáil Éireann:
notes the grave injustice that is the current assessment, review and appeals system for domiciliary care allowance (DCA) which has, since its transfer to the Department of Social Protection in 2009, seen:
-- a continuous escalation in application refusals based on desk assessments carried out by administrators and medical assessors neither of which are required to be qualified specialists in the relevant area of disability;
-- an upsurge in reviews of DCA recipient eligibility which often result in extortionate costs to parents who must, at short notice, obtain expert medical evidence to support the defence of their much needed claim (evidence for which they are often forced to pay private sector experts given the unavailability of public sector options within the short timeframes set out by the Department of Social Protection for such reviews);
-- the development of a staggering 38 week wait period for those seeking an oral appeal of an unsuccessful application or a finding of ineligibility upon review;
-- a situation arise whereby 2,420 applicants and recipients subject to review appealed the Department's negative decision in their case during 2011 alone, 52% of which were successful in their appeal;
-- the unnecessary imposition of an additional emotional burden upon families as a result of being forced to embark upon a lengthy and costly appeal process which, in 52% of cases, upholds the original claim for DCA and proves the injustice of the initial refusal;
-- a persistent failure to inform families of the specific reasons a child does not qualify for DCA, thereby preventing parents from appealing a decision on specific grounds rather than causing a lengthy and costly review of the entire process; and
-- the placing of formal or informal restrictions upon Health Service Executive (HSE) experts precluding them from recommending the provision of a DCA to an individual on the basis of a diagnosis they have made;
deplores:
-- the emergence of a backdoor approach to denying additional supports such as carer's allowance, the respite care grant, the household benefits package and sibling supports as a result of a finding of ineligibility for DCA; and
-- the apparent development of a cynical policy to routinely refuse DCA applications and categorise recipients ineligible in the short-sighted hope of making savings – adding greatly to the anxiety and hardship endured by some of the most marginalised and vulnerable families in the State; and
calls on the Government to immediately reform the DCA system by:
-- returning the administration of this system to the Department of Health;
-- insisting that medical assessors are competent to assess the medical information submitted and are on the relevant specialist medical register (e.g. paediatrics or child psychiatry), remove the "Guide to the Normal Age of Attainment of Certain Activities" currently in use by medical assessors (as compiled by the Office for Population Censuses and Surveys study on Disability in Childhood in the United Kingdom) and ensure that all decisions on DCA applications and existing claims are made by child protection or disability social workers;
-- providing DCA applicants and recipients with access to all documentation held in relation to their claim upon request and within a reasonable timeframe;
-- affording recipients sufficient notice of an upcoming review in order that they may obtain the requisite expert evidence through public sector sources as should be provided for through the ‘Assessment of Needs' procedure under the Disability Act 2005;
-- revoking any and all restrictions placed upon HSE experts precluding them from recommending that individuals and/or families require specific supports such as the DCA;
-- limiting to 7 weeks at most (the Department's target time for the processing of DCA applications) the total time it takes to hear and adjudicate over summary and oral appeals on DCA;
-- publishing the general details of decisions on social welfare appeals (while ensuring the anonymity of those concerned) in satisfaction of the Article 34.1 constitutional guarantee that justice "shall be administered in public" in view of the quasi-judicial status of such appeals;
-- introducing a truly streamlined and human rights focused DCA system which is administered in the understanding of the uphill struggle that is everyday life for those seeking DCA and does not actively exhaust the precious time and resources at their disposal in lengthy application, review and appeals processes; and
-- prioritising the delivery of all necessary resources, supports and funds to children with special needs in order to facilitate them in attaining their full potential as equal citizens of Ireland.
Debate resumed on amendment No. 1:
To delete all words after "Dáil Éireann" and substitute the following:
"recognises that the Domiciliary Care Allowance (DCA) scheme represents a very important support to people who live with and care for children with disability and notes that:
— the allowance is now in payment in respect of 26,000 children, an increase of over 2,000 since the Department of Social Protection took over responsibility for the
scheme from the Health Service Executive in April 2009;
— spending on the scheme and the Respite Care Grant, which is automatically paid to all recipients, has increased from €138 million to €145 million between 2010 and 2011; and expenditure on both in 2012 is expected to be in the region of €146 million;
— parents of children who receive the DCA also qualify for Carer's Allowance and the Household Benefits Package, 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 Benefits Package, in addition to the DCA and Respite Care Grant, receive a total of €16,742 per annum from the Department of Social Protection;
recognises the vital role played by spending on social welfare in enabling people to live with dignity and the importance of the DCA in supporting families with children who need substantial levels of care and attention;
notes that the DCA is now a statutory scheme as provided for in the Social Welfare and Pensions Act 2008. The medical criteria set out in the legislation requires that the child has a severe disability requiring continual or continuous care and attention substantially in excess of the care and attention normally required by a child of the same age and the disability is such that the child is likely to require full-time care and attention for at least 12 months;
acknowledges that the Department of Social Protection has in place an equitable standardised application and assessment process whereby all cases are examined and dealt with on an individual basis;
notes that the application process operated by the Department involves the submission of a detailed statement by the parent or guardian of the child, as well as a detailed statement by the child's own general practitioner and any other relevant evidence from qualified experts who have examined the child. This evidence is then assessed by designated Departmental Medical Assessors who have received training in the area of child disability;
notes that the DCA supports 24,000 families and some 26,000 children at a cost of €100 million per annum. This along with the Respite Care Grant payment amounting to €45 million in 2011, represents an increase in spending of some €7 million over 2010;
further recognises that:
— against the backdrop of significant reductions in expenditure on social protection that there have been no cuts in the level of spending on the DCA and that this scheme has been specifically protected from cuts by this Government and that it continues to be paid at the monthly rate of €309.50;
— reviews are paid at the monthly rate of €309.50;
— reviews are an integral part of all social welfare schemes and are necessary to ensure that payments continue to be made only to those who meet the qualifying conditions and acknowledges that there is a structured and fully functional review process for DCA cases in operation in the Department which includes parental and medical input; and
— all social welfare schemes have set conditions and that the receipt of DCA is a prerequisite for the receipt of Carer's Allowance, Respite Care Grant and the Household Benefits package where this is claimed in respect of care given to a child under 16 years old;
acknowledges the considerable steps that have been taken to improve communication with parents and notes the improvements that have been made in this regard resulting in:
— parents now being informed by the Department of Social Protection of the review date that will apply in their case when their claim is initially awarded; and
— parents also being afforded 60 days in which to obtain and return evidence following notification of review. This will address the concerns of parents on the time frame allowed and will provide them with additional time to gather supporting documentation or medical reports they may wish to submit in advance of the review date;
acknowledges the significant steps that have been made to speed up the appeal process for all social welfare appeals and notes that the success rate on DCA appeals, at 46%, is broadly in line with that on other social welfare schemes;
affirms that copies of documents are made available to parents on request within a reasonable timeframe;
and further notes that:
— the Minister for Social Protection has instructed the Department of Social Protection to liaise with other relevant Departments, namely the Department of Health, the Department of Education and Skills, and the Department of Children and Youth Affairs, who have a role in providing supports and services to map the availability of services and to examine the scope for greater linkage and consistency in the assessment for such supports and services;
— the Government has established an Advisory Group on Tax and Social Welfare to examine and make recommendations on a number of issues around the operation and interaction of the tax and social protection system to address how employment disincentives can be improved and better poverty outcomes achieved, particularly child poverty outcomes and that the Group is currently examining the area of disability;
— the Department of Social Protection will urgently undertake a policy review of the DCA in order to clarify its objectives, consider whether legislative change is required, and consider whether the current administrative and medical processes need further refinement in view of the outcome of this; and
— as part of this review, the Department will consider the question of the duration of review periods for the DCA, based on the medical condition of the children involved, whilst taking account of other priority demands on the medical resources of the Department."
- (Minister for Social Protection).
Ba mhaith liom fáilte a chur roimh an rún seo atá os ár gcomhair inniu mar go bhfuil sé tábhachtach go ndéanann muid plé ar an cheist seo. Táim i gcoinne an leasaithe atá curtha os comhair na Dála ag an Rialtas ar an cheist seo mar measaim nach bhfuil an Rialtas ag glacadh leis go bhfuil botún á dhéanamh agus go bhfuil an córas, mar atá sé faoi láthair, maidir le domiciliary care allowance míchothrom.
To prevent some Government Deputies from putting words in my mouth, as they have done in the past, I will begin by acknowledging that the Department does need to employ control measures, including assessment and review procedures, to ensure domiciliary care payments are made only for eligible children. I would say the same for any other social welfare payment. A certain degree of control is required to ensure nobody is in receipt of a payment he or she should not receive. However, the current application, assessment and review processes are not fair. They place parents under undue stress that could and should be avoided, particularly given the circumstances. As my colleague Deputy Sandra McLellan indicated last night, Sinn Féin welcomes the spirit behind the Technical Group motion, although we do not agree with all of the specific proposals.
The domiciliary care allowance scheme requires significant reform and Sinn Féin has proposals of its own in that regard. I have put some of those suggestions to the Minister, Deputy Burton, and last week I put some of them to the Minister of State at the Department of Health, Deputy Kathleen Lynch. In the past weeks and months I have highlighted these issues and I am happy to be able to say that some of my suggestions have been taken on board by the Minister and the Department. Notably, I recommended during debate on Priority Questions recently that the notice period for the review needed to be significantly extended. I am glad she has now arranged for that.
I note from the Minister's speech last night that from now on, claimants are to be informed of any scheduled review date at the commencement of their claim. This is welcome. In future, when people's claim is accepted, they will be told whether to expect a review and given an approximate date for the review. However, the Bill does not address the fears growing among the 24,000 parents already in receipt of the payment. As I said to the Minister of State last week during a Topical Issue debate on this issue, I took some time to peruse the on-line discussion forums for parents of children with special needs. I strongly suggest that Ministers, backbenchers and Deputies should do likewise. The issues of domiciliary care allowance applications, reviews and appeals are hot topics on forums like MagicMum.com,
rollercoaster.ie and various other Facebook causes pages. The level of both confusion and fear to which these reviews give rise is something of which the Minister should take heed and to which she should respond. The fear is fed by the unfairness and the lack of transparency in the system currently. It is also fed by confusion. Some people seem to think everybody will be reviewed imminently and assume that every review will result in the withdrawal of payment. This incorrect assumption requires a response, but it has arisen due to the fact that the system is not as transparent as it should be.
I suggest the Minister should arrange for a letter to be sent to all domiciliary care allowance recipients, informing them whether a review has been recommended by a medical doctor who decided their cases. If so, they should be informed when that review is scheduled to arise. The letter should also include advice on what supporting evidence, letters or reports should be gathered in advance of the review and advice on writing a diary of the extra care needs of their children. This is a simple message to go out in 24,000 letters and it is not beyond the Department to do that in order to allay the fears of the many parents who have contacted me and many other Deputies.
The Government amendment to the motion and the Minister's speech last night seem to suggest the Government thinks the domiciliary care scheme and the procedures around it are fine as they are and that the small steps that have been taken with regard to notice period and the like are all that are required in terms of review. The Government states that the application and assessment process are equitable and fair, but the tone suggests that the review the Minister suggested in her contribution may not be as genuine a review as suggested and may not be a genuine effort to ensure the scheme is fair and transparent to all. Her conclusions appear to be pre-drawn, which would be wrong. Is her review just another fig leaf to cover another government failure. Hopefully not.
The amendment and the Minister's speech also fail to address a point I raised last week with regard to domiciliary care allowance being cut off while individual reviews are still in progress. It has been brought to my attention that due to a backlog of reviews, a number of domiciliary care payments have been cut off before the Department reviews have been completed. That is a scandal. The parents had been written to and told the review was to take place and they were asked to submit their forms and supporting documentation. They complied with this, but when the notice period concluded, their payment was cut off, although the Department had not yet fully assessed their documents. This is a serious concern and indicates that the overriding concern of the Department may be the need to reduce costs or spending on this scheme and as a result fair procedures and the needs of the disabled children are falling second to this. Surely, any Minister or government would agree that no payment should be in advance of the completion of a review. This is a simple request to which I hope the Minister will agree.
In addition, I strongly urge the Minister to ensure that no domiciliary claim in payment is stopped without the Department first meeting the claimant and affording him or her an oral hearing. When I suggested this to the Minister previously, she - purposely I suspect - misunderstood my meaning. I do not suggest that the Department's medical officers should take on direct responsibility for diagnosing or clinically assessing the children. Rather, I suggest that no claim should be cut off without the parent being offered an oral hearing with a deciding officer and given the opportunity to explain in person the additional care needs of his or her child.
The guidelines for deciding officers are a problem and need to be changed. First, the normal age of attainment lists do not go beyond four years and this is something to which I will return at a later dater. Second, the two lists in appendix 8 of diagnoses that are more or less likely to give rise to eligibility seem to create unfair presumptions in the minds of deciding officers. This means that parents of children with certain diagnoses, including most forms of autism, have a higher barrier to jump to prove eligibility than a child with an equivalent level of care needs but a different diagnosis. The Minister denied, in response to parliamentary questions I put, that appendix 8 is unfair. However, subsequently classic autism was shifted from one list to another, a tacit acknowledgement that the list is unfair. It is only a matter of time before somebody successfully convinces the courts to make the Minister eat her words on this. Therefore, I implore her to save these families the heartache and to reform the system now of her own volition because it is the right thing to do.
As mentioned, Sinn Féin does not fully agree with a number of proposals in the motion moved by the Technical Group. I do not have the time to go into these now, but I will inform Deputy Murphy so that she understands my concerns. Given the Minister's speech last night, I cannot support the Government amendment.
The Minister for Health, Deputy James Reilly, is sharing time with Deputies Ciara Conway, Regina Doherty, Damien English, Simon Harris and Michael McCarthy.
I ask the Chair to indicate to me when I have a minute of my time remaining. I am very grateful for the opportunity to speak on this important issue. I understand the tremendous frustration and upset it has caused to many parents of children with disability. Many constituents who have been in touch with me and my office are experiencing great difficulty in regard to the domiciliary care allowance. Some of the core problems relate to the time since it transferred to the Department of Social Protection and also to the fact that reviews are being carried out more frequently. To my best knowledge, neither the Department of Health and Children nor the HSE used to carry out reviews once the allowance had been granted.
A situation, suggested by some, whereby there is a 52% success rate upon appeal would be a cause of great concern and, if it is the case, cannot be allowed to continue. It is a clear indication that the original decision-making process contains flaws and difficulties. I would also be very concerned about the expense families must occur in having to pay private facilities large sums of money to have assessments carried out in the timeline required by the Department, if these services are not available in the public system. Any review of the system must take cognisance of this.
An important point to be made in respect of disability is that it covers a wide range. Taking the autism spectrum disorder in particular, this is written into its definition. It is a spectrum, a range of disability, that goes from being so severe that, sadly, the only real option is institutional care, to being so mild that many children are in their 20s by the time they are diagnosed and the condition picked up. In a situation where we have limited budgets and an economic downturn we have to ensure the resources are focused on those who need them most. The point has been made that the total fund for the domiciliary care allowance has not only been maintained, but has increased.
There is also an issue around support for disability, in particular for children. I believe we have been looking at this in isolation. There is funding going through the Departments of Education and Skills, Health, Social Protection and Children and Youth Affairs. Perhaps we need more joined-up thinking in order to ensure the funding goes to those children who have the greatest need. On the side of the Department of Health, we have taken a number of initiatives. In regard to autism we have initiated a review of services so that the current scenario of very uneven delivery of service can be addressed from within our existing budget. We also seek to examine new ways of delivering the services in order that children's needs can be met in a more cost-effective fashion. Another initiative we have taken is that we now have a named person, at principal officer level, across the Departments of Education and Skills, Health and Children and Youth Affairs with the aim of ensuring proper cohesion between the services for children with autism and other communications disorders. Next year, Ireland will have the EU Presidency. My Department has made the issue of autism and children with communications difficulty a priority for our Presidency.
The great work parents do with children with disability is certainly recognised by me and the Government and we seek to support it. I have had meetings with the Minister for Social Protection on a number of occasions and am very pleased her Department is undertaking a policy review of the DCA in order to clarify whether legislative change is required and, in particular, to examine whether the current administrative process needs further refinement. Part of this review will also examine the regularity with which reviews are carried out, taking into account the impact on families in regard to the need for fresh reports, which are often made at great personal expense.
Two years ago, the Department of Social Protection took over the administration of the scheme - which I believe to be proper. It is consistent with Government policy on having a person-centred approach to the delivery of services income and other supports to people with a disability. The DCA scheme is now a statutory scheme with primary legislation provided for in the Social Welfare Act and the Pensions Act 2008.
I wish to place on the record of the House my acknowledgment of the extraordinary commitment of parents to their children, especially those with disability. All they seek is that their child is allowed to reach his or her full potential. I want to support them, as does this Government. I welcome the review by the Minister for Social Protection, Deputy Burton, of the domiciliary care allowance. I hope it will clarify the administrative process and address the difficulties being experienced by many parents who are struggling to provide for their children.
I welcome the opportunity to speak on this issue and also welcome the comments of the Minister in regard to the joined-up thinking that needs to happen in dealing with and meeting the needs of children, an approach for which I have long advocated. With the publication of child protection legislation we see that each Department now has a role and responsibility in this regard. This is the kind of different thinking and service-led approach we must endeavour to pursue in order to meet the needs of children, in particular those with special needs.
The statistics from the Department of Social Protection show that throughout the island of Ireland the domiciliary care allowance supports 24,000 families and 26,000 children at a cost of more than €100 million a year. Since the Department of Social Protection took over the scheme from the HSE in April of 2009, as mentioned by the Minister, this move takes children with special needs out of a medicalised model and treats them as individuals with individual needs. The Department of Social Protection is best-placed to continue to administer this payment, rather than transferring the responsibility back to the Department of Health.
It is worth remembering that in spite of reductions in expenditure on social protection there have been no cuts in the level of spending on domiciliary care allowance although savings have had to be made across a wide range of other areas in order to meet with the cost savings required as a result of the legacy of destruction left by the Fianna Fáil-led Administration. The Minister for Social Protection, Deputy Burton, mentioned this last night, but it is important to point it out again because it was raised in the House by a number of Deputies.
Every Deputy present is fully aware of the situation because of the kind of work that comes across our desks in our constituencies. It concerns reviews, the time they take and the short window parents have in their engagement with the Department. Reviews are an unfortunate if necessary evil but we must allow adequate time for a review to take place. To this end the Department of Social Protection has taken a number of steps to improve communication with parents and guardians. Every Member, across the House, will welcome this as we know the criticism often levelled against big bureaucracy, namely, its inability to access accurate and timely information. For example, the parents and guardians concerned are now being told by the Department of Social Protection the review date that will apply in their case after their claim is initially awarded. They are also given 60 days in which to find and return evidence for the review. This will address some of the concerns about the timeframe allowed and will provide extra time to gather supporting documentation and medical reports they wish to submit in advance of the review.
The Minister for Social Protection has instructed her Department to work with all the other relevant Departments, Health, Education and Skills, and Children and Youth Affairs, each of which has a role in providing supports and services for families and children with special needs. These Departments are to work together to map the availability of services and examine the scope for greater linkage and consistency in the assessment for such supports and services. This is a much overdue reform, one that will give us a working integrated Government that does not work in independent silos and allow children's needs to fall between the cracks. This is a welcome development.
I thank the Leas-Cheann Comhairle for the opportunity to speak on this subject. Although I understand the Minister intends to make much needed changes to the DCA and its processes, which I truly welcome, I wish to make some points about which I feel very strongly.
I am a representative of the people of Meath-East but my involvement in the political process started with the special needs division of the National Parents Council. Involvement in politics is the way most people seek to influence decision makers, through dialogue, negotiation and by debating on the floor of the Dáil, something we all do on a daily basis. We must examine our society in terms of the human rights of children and families with disabilities. These are children who cannot live independent lives. While sitting in the Chamber, I often look at the flag and think about what it means. The same flag must cherish all children to be equal, to have equal living conditions and full participation in community life. I have fundamental problems with the delivery of services to our sick children. The responsibility to make changes to services rests with the Minister and the officials. Some of our children are very sick and need 24-hour care, seven days a week. The vast majority live at home with their families and some of them will never play soccer, Gaelic football or rugby. Most of them will never write a letter of complaint to a Minister. Some of the children will never work and some will never attend a mainstream school yet the flag in this Chamber says there must be equality for all our children. We are not talking about people who make fraudulent claims for social welfare, those who fake disabled parking permits or exaggerate mild injuries to claim benefits. We are talking about sick and vulnerable children.
On behalf of the children, I ask the Minister to make two changes to the process. The first concerns the review, particularly the language in the documentation and the questions asked during the review process. I welcome the parents in the Visitors Gallery. Those involved with children, particularly those with special needs or particular family circumstances, understand the stress of everyday life. At times of total chaos, any little hope of an improvement in the child is a huge milestone. To sit in front of an administrator in a review process and to be asked flippant questions, although not deliberate, is extremely hurtful and disingenuous in respect of the efforts and enormous stress most of those parents go through. I want the review process to examine the language in the paperwork and the approach of the people behind the interview and the review process.
I welcome the review to which the Minister agreed last night. In any review, we will draw on medical professionals and departmental officials who have been, and will continue to be, trained to conduct reviews but the process must involve parents. Parents know what they go through on a daily basis and can relay information. More important, they can relay how the slightest change to services, domiciliary care payments or access to respite has a major impact on families and children. Direct experiences enrich the review process and make it valuable. I urge the Minister to ensure parents are involved.
While I do not agree with everything in the motion, I welcome the debate. I read some but not all the speeches on this topic. We can all agree on a number of key areas. What families go through when applying to the domiciliary care allowance is something for which they can never be rewarded sufficiently. The carers, loved ones and the person they are minding need all the help they can get. We must constantly try to improve the system of dealing with applications and what we can offer. There is an issue with trying to maximise the use of budgets but we must strive to improve the system. I accept, as does the Minister, that we must try to improve elements in this motion. We can never do enough for any family that needs extra help and attention. In opposition and in government, I always said that I wish we could do more. We cannot do enough but we must try to improve it.
We can certainly try to improve how it is administered. I was struck by the comments of Deputy Pringle, who said that families should not have to wait weeks or months for the appeal process. Deputy Pringle also said that it is vital the system quickly recognises the children and the family. Deputy Pringle is correct that the system does not do so at present and we must recognise when parents and children need more help and additional support. This must apply to the Departments of Health, Social Protection and Education and Skills. It cannot always be a fight and the earlier we make intervention, the better.
I agree it should not always involve massive cost. The Minister for Health, Deputy Reilly, touched on this issue. I do not accept an application or appeal should involve massive cost although it does. There is an onus on everyone involved - the Department and especially GPs - to step up to the mark and do more. Constituents come to Deputies' offices on a daily basis looking for help with applications. On many occasions, it is an application for domiciliary care allowance. I am disappointed with the effort made by GPs on behalf of patients. Their word is better than any Deputy's word to convince people in the Department that someone needs extra help. Hopefully we can make progress on the point. Perhaps this issue will be dealt with in the review process referred to by the Minister last night, so we have better engagement between those who are supposed to know best and the patients.
I am happy the Minister agreed to the 60-day period. It is something we had to move to and I commend the Minister on the change. Families have 60 days to provide information, which should be ample time. It is important everyone retains the payment when the review is finished but this does not always happen. We work must work on it. People will now be told the date of the review if the claim is successful. We would rather there were no reviews but there must be control measures. During the meeting of the Joint Committee on Jobs, Social Protection and Education we had a debate on the need for reviews and control measures. In this area, it is obvious in some cases that the child does not need review. We need more cases where decisions are made that no review is required and the case is put to one side. That can be dealt with in the Minister's review of the system.
Some people talked about transferring this function to the Department of Health. With no offence to the Minister, who has just left the Chamber, that would be a retrograde step. We must give credit to the Department of Social Protection. In opposition and as a member of the Government party, I will say when things are wrong. Not everything is perfect but many positive changes have been made in the Department, which has taken steps in the right direction. If we switch the function to another Department, we will delay the process of change without achieving anything. While I accept some element of the motion, I could not agree with the proposal to return the function to the Department of Health. It is unfair to the Department of Social Protection, which is doing a good job.
I am happy that there is a standard system even though the application form must be changed. There must be room for the family to tell a story. I urge parents to write out the full story over four or five pages, to get across exactly what happens in the house on a daily basis to the decision maker. The application form does not allow for that. I am happy the process is standard throughout the country. My colleagues in County Meath agree that, previously, an address decided the service or grant one received. That is unacceptable because people need to know if they are entitled to something, irrespective of where they are. This is a grey area and we must improve on it and try to get some standards. We must do better in this area and I hope the Minister's review will be timely so that we can make progress. Let us not pick on the wrong staff; this issue concerns volume and the fact that we can never do enough. Let us work together.
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.
Will Deputy Harris be voting for the motion in that case?
When Deputy Halligan is finished playing politics I will still be dealing with it.
The issue of domiciliary care allowance has attracted much attention in recent weeks and I welcome the opportunity to highlight aspects of the current situation which have been deliberately misrepresented. I unequivocally reject the charges made in this House that the Government is targeting children with autism. It is a tasteless and cheap charge designed to whip up people's fears and it ignores the positive progress made in this area since we entered office one year ago.
Some of these progressive measures include a commitment by the Minister for Health, Deputy James Reilly recently to allocate €2 million in additional funding for early detection and treatment services for people with autism over the next two years; Ireland's first ever international conference on autism took place in Galway in January; the opening of the State's first dedicated research centre into autism in February; the publication of the HSE's national review of autism services in February, the recommendations of which will be implemented shortly.
Earlier today I raised a Topical Issue matter in the House about the need to introduce autism-specific laws in this country. I was pleased to be informed that some positive moves are afoot in this regard. Therefore, the charge that the this Government is not steadfastly committed to assisting children with autism is disingenuous.
The protection of children is a critical issue for this Administration. The motion expresses a concern for children's needs and welfare and in that context it is to be welcomed. There is no doubt that all parties in this House agree that there is a need to ensure that State services, such as the social welfare system, adequately respond to children's needs. Lest anyone question the Government's broader commitment to the protection of children in the State, I remind the House that the children's rights referendum which will take place later this year in order to change the current situation whereby the Constitution does not contain an explicit reference to children's rights, which in the view of experts, works against the welfare of vulnerable young people. Unlike successive Governments who dragged their feet on this issue, this Government is taking the matter firmly in hand and is taking decisive action. However, we cannot ignore the fact that many parents of children with autism, children who require extra care, supervision and attention, feel they are being confronted with an increasing amount of obstacles in their efforts to receive or to retain domiciliary care allowance. It is never pleasant to have to reject any appeal but we are operating within an extremely strained climate of limited public finances and unfortunately, for every entitlement there is a rigorous evaluation process.
Critically, the number of domiciliary care allowance payments has steadily increased over the years as the claim system has made the transition from the Department of Health to the Department of Social Protection. In 2001, over 11,000 claims for payment were made and this had risen to over 23,000 in 2009, at the time the Minister's Department took over the scheme. The number of payments has since increased further to the current position whereby 26,000 claims are in payment. From the outset, there have been no cuts made to the domiciliary care allowance scheme in recent budgets and the rate of payments remain at €309.50 per month.
On the anniversary of 100 days in office, the Taoiseach and the Tánaiste gave a commitment that the budget for 2012 would not see a reduction in basic rates of social welfare. The efforts made by this Government to ensure that basic rates of social welfare were maintained need to be acknowledged.
The window for returning a medical review form has been extended under the Minister's remit from 21 to 60 days, in response to concerns from parents. Last year, 46% of the 2,420 appeals against rejection were successful. I welcome the Minister's ongoing review into the scheme which is considering whether the current system is appropriate in terms of processing applications and medical guidelines. It illustrates how the Minister and the Government are willing to listen to the concerns, be they from civic society groups, people on the ground or political parties. The policy review intends to clarify its objectives, consider whether legislative change is required and consider whether the current administrative and medical processes need further refinement. Along with my colleagues I will be supporting the Government amendment to the motion. It is essential that we recognise this Government's commitment to children with special needs or otherwise. It is a commitment dear to the hearts of members of this Administration.
I call on Deputy Clare Daly who is sharing time with Deputies John Halligan, Mick Wallace, Stephen Donnelly, Luke ‘Ming' Flanagan and Tom Fleming, all of whom have five minutes.
It is quite humbling for us to be here in the presence of so many parents and warriors who have done an enormous service to this issue by putting a spotlight in recent days and weeks on the lives of parents and families who care for children with serious disabilities. It should mean the appalling negligence that has been perpetrated on some of our most vulnerable citizens has to stop. These people have exposed it and now the knowledge is there to be seen. These parents and families do not want a pat on the back. All they want is that to which they are entitled. They want something that is not too much to ask for - the right to raise their children with dignity and support. We are a long way from that type of society, however.
The individual stories people have told are important, although it is not possible to address them all in this debate. The parents and families have told us loudly and clearly about their stress, exhaustion and despair. They have also demonstrated the constant battle, isolation and the 24-7 commitment, 365 days a year. It is something that was never planned for or expected but has been dealt with by loving parents. The least they expect is a bit of support in that battle. We have failed in that and we must be honest about it.
I acknowledge the Government did not cause the problem, which predates it. If it does not address it urgently now, however, the Government will be just as guilty as the last lot. Today's message is that the ball is in the Government's court. It must answer the fear of those who wait for the postman. They feel that if they incorrectly fill out forms or do not provide enough information, their allowances for domiciliary and respite care will be cut.
The Government must take on board the significance of the information in the motion. The facts highlighted confirm the problem in the system. The numbers being refused on initial application compared with the numbers eventually approved months or even a year later can lead to no other conclusion than they are being excluded deliberately. They are being forced to jump some sort of convoluted obstacle course at enormous additional financial and emotional cost. That is simply not acceptable and it has to stop.
I accept the point made by the Minister for Health, Deputy Reilly, that there is a responsibility to mind public money. The implication is that by refusing some people there will somehow be a bigger pot for everybody else, but that is not the case. There is no justification for the current system of refusals. Neither is there any justification for letters telling parents their children did not require any more care or attention than a child of the same age who did not have that diagnosis. What an absolute insult that is to people like the parents of Danielle. She is six years of age with the verbal skills of a two year old. In addition, she has needs such as developmental verbal dyspraxia, hypermobile joint symptoms, hypersensitivity syndrome and 50% hearing. All of this requires massive intervention under the care of a special needs consultant, but her parents have been told her IQ is too high which means she attends a mainstream school. As a result, she will be refused the necessary allowances.
The reality is that the domiciliary care allowance is not much - not even €100 a week - to access the vital supports and treatments these families need. I respect the title "warriors" that many of these people have given themselves because they have shown from day one they must fight for diagnosis, access to resources and back-up. The system is the wrong way around.
I am glad the Minister is committed to a policy review. Unless parents and the organisations are involved in this review, however, to ensure a proper and transparent system, it will not work. The Minister has the opportunity to do that now and I hope he does so. We should be talking about changing the entire culture and moving towards a system where we support children and their families rather than excluding them from vital early intervention which would enable them to develop towards independent living and reducing their long-term care needs.
I can honestly say that these people have begun to organise. The lid has been lifted, they are not going got go back into their box, and the Government would do well to heed them now.
I have no hesitation in saying this Government and its predecessor have been playing with the lives of already marginalised families in their attitude towards the application review and the appeals process for the domiciliary care allowance. I know times are hard but it says a lot for a country when vulnerable people are being treated like this. For a few short gains, the Government is creating a situation whereby children with disabilities will be more dependent on the State in the long term. We should be focusing on the strength of a disabled child to help him or her become a productive member of society. The entire application review system for the DCA payment is fundamentally flawed and should be overhauled. In addition, full administration should be returned to the Department of Health. There are a shocking number of anomalies in the system, with allowances being withdrawn without a face-to-face evaluation. Parents are being reviewed for the payment just 12 months after their initial qualification.
I addressed a meeting in a Waterford hotel last week which was attended by more than 70 parents. One of their arguments was that after being approved, they were brought back into the system 12 months later to be humiliated. I use the word "humiliated" because that is exactly how they felt.
Parents whose child has been diagnosed with autism or Asperger's syndrome are dealing with one of the biggest crises of their lives. It is a confusing and highly anxious time for a family. On top of this emotional roller-coaster, they are facing a child's diagnosis. It is very difficult for a family. They also have the frustration and disillusionment of being made to feel they are defrauding the system. It is despicable that many such parents are made to feel that way when they go through the system.
There are inherent flaws in the application form that contribute to an unnecessarily low success rate. The medical section of the form, for example, does not allow for a full description of the care needs of a child with autism that has to be met by parents. Is the Department of Health or the Department of Social Protection aware of that? The Minister should look at the form because parents argue there is nothing in it to allow them to explain their child's problem.
The average rate of successful first applications across all disabilities is shockingly low at 38%. One third of all those who go for review are allowed. These are significantly high numbers. A norm is emerging whereby many people are refused the domiciliary care allowance, DCA, on first application, but may be successful following an oral hearing. The current waiting time for an oral hearing, following a rejection of the initial DCA application, is on average 38 weeks. This adds insult to injury. The persistent failure to inform families of the specific reasons a child does not qualify for the DCA means a parent is prohibited from appealing the decision on specific grounds. The lengthy and costly review of the entire process is a ridiculous waste of time and resources. We must examine that.
Within the review process, the Department clearly lacks the appropriate level of expertise to assess the eligibility of claimants. The Minister has said previously that if a DCA payment is stopped on medical grounds, the applicant is able to submit additional information in support of the case. Why is it, however, that many who have been reviewed have long-term disabilities? That question needs to be answered by the Government. This is a disgraceful waste of State resources not to mention the unnecessary stress of a lengthy process being imposed upon families who are already struggling to provide round-the-clock monitoring for their children. Can somebody explain why a person who has been diagnosed with a long-term disability by a specialist and a doctor still has to go through a review process? It is absurd and outrageous.
The Deputy is taking time from his colleagues.
I will only take one minute. It is heartless and outrageous to ask a parent who has spent 18 months trying to get domiciliary care allowance to have to relive that process again.
It was good to hear the Minister for Health admit that the application and assessment process leaves too much to be desired and that change will have to happen. It is shocking to think that 52% of appeals are successful. One would wonder how in God's name that can be the case. The Minister said there is limited funding available, and we know that. He said the money must go to those who need it most. I would like to think that it should go to those who need it, not just those who need it most, and that everyone who needs it would get it. We know money is scarce but decisions are made on a daily basis. The Government spends money every day and it makes choices as to how it spends it.
I have heard many stories from people caught in this situation and I do not know how they cope. The level of self-sacrifice involved is mind-boggling. Most of the points on this issue have been made by different speakers. My time will best be used by putting some of the experiences of these heroic people on the record, as others have also done.
A girl called Linda from Wexford wrote to me. She is currently appealing the Department's decisions to refuse her domiciliary care allowance. She wrote:
I gave up my full-time job last August to be at home to care and help my little boy who is four years old and who has only started becoming verbal in the last six months. He is on a waiting list for Occupational Therapy .. and Speech and Language Therapy ... since last March and it will be at least another two years before he will be seen. It is €110 per month for private ... [speech and language therapy] and the nearest SLT qualified [to care for] ... Autism Spectrum Disorder children to Wexford is in Dublin. It is heart-breaking that ...[the Government] is making us beg to get and then keep an allowance of €309 per month to help us provide services that the State isn't providing to our special needs children.
Two parents, Rod and Jane, who have two children with autism outlined to me the daily realities of protecting and supporting their two boys. They wrote:
Like many parents of special needs children, we are in a situation that we neither asked for, or bargained for. An 18 hour day is typical for us and this applies 365 days per year. The children can present with extreme behaviours or engage in acts that are very dangerous which could result in injury or worse.
They also wrote:
We deal with situations like this every day and the DCA at least acts as an acknowledgement from the State for the work we do and the work we have no choice but to devote the rest of our lives to. This we do out of love for our children and all we ask is for the continuation of the supports we receive to help us to facilitate this.
Parents of special needs kids are currently under attack from this Government on two fronts. Not only is DCA under review for many families, but SNA support in our schools has been and will be cut again. We find it astounding that any Government in this day and age could even contemplate victimising one of the most vulnerable sectors in society in order to save money and enhance their reputation abroad at the expense of its own young citizens.
This situation is the cause of extreme concern for parents who are already under immeasurable strain. DCA is well earned by those who qualify for it and we ask the Government this; are our children not worth 309 Euro per month, or based on a typical 18 hour day, 55 cents an hour!
They further wrote that they challenge autism on a daily basis in their home and they support their boys in every way they can in order for them to eventually become the best that they can be. They wrote that for the majority of the time they do not even think of the boys in terms of their disability; to them they are simply Evan and Daniel who, far from being the stereotypical socially withdrawn children, are affectionate and interactive and they and their big sister, Ciara, are the centre of their world, but their boys are a labour of love and they work hard every day for their very survival as a family.
They also wrote that their lives are not like other people's lives, they are among the families who live in semi-isolation, spending endless hours with children who need their constant care and attention. They further wrote that they ask only that they be left alone to do the job that nobody imagines that they will have to do. They wrote that they are already exhausted from just getting through the day, yet they find themselves constantly having to find the energy to fight in order to maintain the support which they worked so hard to receive.
They also wrote that the ongoing reviews on DCA and SNA support for their children represent an attack on their family and families like theirs all over the country. They further wrote they had no part to play in the economic crisis. They wrote that the Celtic tiger never knocked on their door. They also wrote that they worked hard then as they do now and they only ask that the Government maintain their rights and entitlements. They further wrote that they are now at their most vulnerable and any further cuts to them in terms of social protection or education might just be too much.
When I was 23 years old I broke my back - I snapped my coccyx clean off. I was out of work for quite a while and I was in a lot of pain. One day I had to get a form from the Department of Social Welfare in Summerhill. As I did not have the money for a taxi, I walked there and the journey that would have taken me ten minutes normally took an hour. By the time I got there I was in agony. I said to the guy behind the counter that "I need this form" and he said: "that is fine; we give out the forms between 10 a.m. and 12 a.m; come back tomorrow and you can have one". I said: "do you have them there" to which he replied "yes" and put his finger on a pile of them and said: "This is them." I explained to him that I had just walked there with a fractured spine, that it would take me an hour to walk home, another hour to walk back and the same again tomorrow. I asked him would he please just give me one of the forms. He said he would between 10 a.m. and 12 a.m. the next day. I walked out onto the street, rang the Department and spoke to a very nice lady who said she was appalled. She said: "I will ring him; go back inside and get the form." I went back inside and said: "Did somebody call you?" to which he replied "Yes". I said: "did they tell you to give me the form" to which he replied "Yes". I said "can I have the form?" and he said: "you can - tomorrow, between and 10 a.m. and 12 a.m." The pain that I was in for both journeys had me in bed for about two weeks.
Yesterday evening we heard from four mothers who have children with special needs. What struck me was the parallel in dealing with the system. When people are in pain like I was, or exhausted like they are, or broke like so many people are dealing with the system, they are disempowered and vulnerable and need the system to work for them. The system is not charity. It is an insurance policy into which every single one of us pays. It is our right, and it is our right to be treated with dignity.
What was clear to me last night from those parents and from the parents I have met during the past year is that they are not being treated with dignity. They are not being treated with respect and the system is not working for them. One parent spoke of an ongoing battle with a community or public health nurse who refused to recognise that her child was autistic. Several years later a new health nurse arrived and instantly agreed that the child was autistic and after years the parent got the support she had needed right from the start.
We heard another example of identical twins born with the same condition. For some administrative reason, one child went through the HSE and the other child went through the Department of Social Welfare. The HSE said that the child had a problem and gave the parent a package of support but the Department said that the other child did not have any problem and that the parent was not getting any support.
The Minister took exception to members of the Technical Group criticising officials in the Department. Deputy English said here a few minutes ago that it is not their fault. It is their fault. It is the fault of the people who work in the Department. The 52% appeal ratio is their fault. The ridiculous decisions that are being made are their fault. In the case of the mother who was asked by an official if her child still had autism, that is the fault of the officials. We should not shy away from criticising them when they fail in their duty.
I imagine the officials were involved in drafting, with respect, the drivel that is the Government's counter amendment. The Members opposite should read it. It says everything is fine, look at all the good work we have done and that there will be a review. Not a single word in the Government amendment recognises the difficulties with which the parents of these children are dealing. It is not acceptable. We in opposition cannot hold these officials to account but were I the Minister, I would be asking a number of questions. Why do some health professionals or officials give different diagnoses to the same children? Why do identical twins get different diagnoses from different State departments? What audit system is in place? What management information system is in place? How are these officials being held to account for their decisions? The Technical Group's motion does not ask for extra money; it asks, on behalf of the children and their parents, for a process which is fair, transparent, quick and which treats them with dignity.
I congratulate Deputy Donnelly on his phenomenal speech, I do not know how one follows it. As the Deputy said, the State is there if needs be when one is on one's knees and needs help. My experience when I needed help was not that great either. Many people who come to my office express the same feeling, particularly with regard to domiciliary care allowance and similar allowances. When I was a local authority member a mother asked me why she had to go to a hospital to prove her son's arm had not grown back in order to continue to claim the allowance she was receiving. This sounds daft but apparently it was normal. When one hears a story such as this, particularly with regard to domiciliary care allowance, and one hears about delays and the inability of officials to put together a form on which one can explain what one wants, one feels useless because having dealt with umpteen similar other issues over the past year one wonders whether anyone cares. This is why this Private Members' motion is brilliant; it gives me a chance to express my frustrations about the fact there is no way to deal with this issue as this is a way of dealing with it.
The Minister stated there would be a review. This is great if there really is a proper review and things change and it does not take forever. However, at this stage I must say the cynicism has been beaten into me. I look forward to the day it disappears and I hope the Government will be the one to do it. I keep hearing about reviews on everything and usually the review is about kicking the can down the road and delaying doing something about an issue. Certain aspects such as the form will be reviewed as it is fairly obvious it must be changed and it should take only a millisecond. Why does one need to review the 38 week waiting period? It is fairly obvious it is too long.
The only reason that 52% of applicants successfully appeal is because the attitude of the State is that one is considered some type of a con artist and one is guilty until one is proven innocent. This is not the way to treat people. It is not the way to treat people who are in the fullest of health and full of energy and who do not have all of these burdens and problems. I have two children and they are a challenge, but they do not face the same challenges as the children about whom we are speaking. Parents worry, probably to the extent it hurts them physically and mentally, about anything going wrong or happening to their children. I find it very hard to get my head around what it would do to me if my child was in the situation these people's children are in and I went to the State to be kicked around the place. It is astonishing. One does not need to review this; one needs to get rid of it.
One can blame the system all one wants, but people in the system who obviously do not care, and have a bit of a prejudice against those who might be getting something off the State because they pick up their pay packet and think their money is going to them, need to be kicked out of the system. I met them when I was on the dole. I was dirt when I went to sign on. This needs to be got rid of from the system. The review needs to happen ASAP and it is fairly obvious what should come out of it. All of this needs to be changed and everything in the motion needs to be done. The State needs to be fair to the people involved because they are the best people in the country.
Parents play a crucial, selfless and devoted role in raising children afflicted with disabilities. It is very obvious that since the Department of Social Protection took over the administration of the domiciliary care allowance from the HSE three years ago the number of children whose applications are rejected has soared dramatically. It is ironic that statistics show that of the 2,420 appeals against rejection 52% succeeded, which is a ridiculous reflection on the system. The statistics also place a huge question mark over the credibility and validity of the adjudication of these applications. The success of approximately half of the appeals demonstrates the extremely harsh attitude to a category of people in society who are severely disadvantaged, and the intolerance and insensitivity to their rights and needs is of great concern.
I seriously request the Minister of State, Deputy Kathleen Lynch, who is in the Chamber and the Minister for Social Protection, Deputy Joan Burton, to urgently review the system of processing applications and examine how appropriate the medical guidelines are. The parents of these vulnerable children make huge sacrifices and give constant care and support to their affected children. They do their utmost 24 hours a day to ensure their children's well-being, quality of life, safety and security and they assist them with their educational needs to give them an equal opportunity in life. In almost all cases these parents endeavour to make up for the deficiencies in support and professional services which are or should be the responsibility of the State.
The Government needs to focus on the health and social care provision for children and families, and welfare entitlements are paramount for their daily needs. Intellectual and physical disability services are completely inadequate with a lack of speech and language therapists, occupational therapy, physiotherapists and psychology. Most of the parents of domiciliary care allowance recipients use the €309 a month to access and pay for these services privately. This should be a matter of priority to be provided by the HSE. Many of these disciplines have waiting times of up to six or 12 months which is completely unacceptable.
There are clear indications of indiscriminate targeting of these vulnerable children. As a double blow, when the domiciliary care allowance is stopped the carer's allowance and the respite care grant are also automatically stopped. The parents and guardians must still cope with their responsibilities and must give full attention and care to their children around the clock. It is crazy that in many cases this happens without rhyme or reason and they are left high and dry, cut off from all their financial supports and therefore not in a position to buy the intervention or supports to which I referred earlier. Imposing further hardship on these people is totally unacceptable and at least while they are awaiting adjudication on appeals an emergency fund should be provided to enable the family to maintain the services they may be receiving in the public service for their afflicted children. The other matter is the extremely long waiting time, which can be up to 12 months. This must also be addressed as a matter of urgency. Nobody should be put through the current regime of huge waiting times.
I thank the Deputies for raising this issue, in which I have a particular interest even though it is now the responsibility of the Department of Social Protection. I, along with my Government colleagues, fully recognise that the domiciliary care allowance, DCA, scheme represents a very important support to parents and guardians who live with and care for children with disability. As the Minister, Deputy Joan Burton, said, the State pays the domiciliary care allowance to parents or guardians to recognise the heroic and selfless role they play in raising children who are experiencing some form of disability.
The 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 what another child of the same age might need. The allowance is paid at the rate of €309.50 per month. This rate has been specifically protected by the Government from any reduction over recent budgets. This is against the backdrop of significant reductions in expenditure generally. The Department now pays DCA for 26,000 children, an increase of over 3,000 since the Department took over responsibility for the scheme from the HSE in April 2009. Spending on the scheme and the respite care grant, which is automatically paid to all recipients, has increased from €138 million to €145 million between 2010 and 2011. Expenditure on both payments in 2012 is expected to be approximately €146 million.
Reviews are an integral part of all social welfare schemes and are necessary to ensure that payments continue to be made only to people who meet the qualifying conditions. In this context, DCA cases are routinely reviewed to ensure that all the conditions for receipt of the payment continue to be met. I fully accept that children have particular conditions which mean the child will never progress. We all accept that and when that is the case we need to consider that the type of review expected by the Department should not occur. There are certain conditions that will never disappear and the child will not progress.
I believe that the operation of the scheme on a statutory basis ensures consistency of approach to all claims. The medical criteria, as set out in the Social Welfare and Pensions Act 2008 is almost identical to that in use when the scheme was operated by the HSE, requiring that "the child has a severe disability requiring continual or continuous care and attention substantially in excess of the care and attention normally required by a child of the same age". It is worth recalling that prior to taking over responsibility for the scheme in 2009, the Department of Social Protection convened an expert medical group to draw up a set of consistent and objective guidelines for use in determining the medical eligibility of children for the scheme. The group was chaired by that Department's chief medical adviser and comprised senior medical personnel from the HSE as well as eminent professionals in the areas of physical disabilities which affect children and child psychiatry and psychology. I can confirm that the Department of Health and the HSE had an active involvement in the preparation for the transfer of the scheme to the Department of Social Protection and that both are of the view that the DC A scheme is best placed within that Department.
I understand that very effort is made to process claims as quickly as possible and the Department's target is to process DCA claims within seven weeks. I recognise that the target is often not met. Currently, the average time frame to process a DCA application is eight weeks, and again I recognise that this is not often met. It is impractical and not in the best interest of either the child or the service to place a limit on the time to be allowed to process claims, particularly in the case of appeals. The Minister has agreed to an extension of the time in that regard.
I understand that a number of changes have been made to the operation of the scheme in recent times with a view to providing more time for parents to prepare for reviews of their claims. Parents are now being informed by the Department of the review date that will apply in their case when their claim is initially awarded. They are also being afforded 60 days in which to obtain and return evidence following the notification of review.
Before concluding, I remind the House that two key developments in the scheme were outlined by the Minister last night. Officials in her Department will be liaising with colleagues in the Departments of Health, Children and Youth Affairs and Education and Skills who have a role in providing supports and services to children with disabilities to map the availability of services. This is with a view to seeing if there is any opportunity for greater linkage and consistency in the assessment for such supports and services. I am very keen to see the outcome of that work.
It is fully recognised that the strains on the family of a child with a disability are enormously greater than those on a family that does not have such difficulties. We will have to examine the scheme. Since I have taken office and taken responsibility for disability issues, one of the things I have found most difficult to deal with is the inconsistency in the application of different services and schemes. It is important that there is consistency. Whether one lives in Donegal or Dingle, there must be the same criteria. The only way to provide for that is to locate it in a single Department. The type of linkages that are needed for dealing with disability are entirely different, but with regard to assessment there must be a single assessment tool.
I am sharing time with Deputy Boyd Barrett. My view is very simple. The needs of people with mental health issues and disabilities, and their loved ones, should be sacrosanct when formulating budgets. The word "cuts" should never be used for people who have a disability or a mental health issue. They have enough stress to deal with in their lives without having the additional stress of wondering about their income. Government Departments and services should be making life easier for those people, not more difficult. However, it is clear from the calls we have received and the meetings we have attended that life has become much more difficult since the transfer of assessment, review and appeals to the Department of Social Protection.
I acknowledge the work of Deputies Catherine Murphy, Richard Boyd Barrett, Thomas Pringle and Finian McGrath in bringing this very serious matter before the Dáil. Life has been made more difficult for these people because assessments are being carried out by people who do not have specialised knowledge of disability. It is also more difficult due to the appeals process and the extra expense parents must undertake to get medical evidence. It is also more difficult due to the waiting period of 38 weeks for an oral appeal.
Our motion refers to the number of successful appeals, which amounts to 52%. I am delighted those appeals were successful but one must ask why those applications were turned down in the first instance. I am sure the 52% are also delighted with their successful appeals but consider the cost to them emotionally, psychologically and even physically of having to go through that process and the extra stress and burden it imposed on them. The initial refusal must have been devastating for them. That was followed by the appeals process and the wait. I also wonder about the other 48% and how their lives are now. What were the grounds for turning down their appeals? The motion calls for decisions on applications not qualifying to state the specific reasons. Another part of the motion calls for the details of decisions, while preserving the anonymity of the applicants, to be complaint with Article 34.1 of the Constitution, which states that "justice shall be administered in public".
The Minister acknowledged that the domiciliary care allowance is an important support for people who live with and care for children with a disability. The amendment refers to the extra 2,000 recipients, the €100 million cost and the respite care grant. They sound like considerable amounts, but they are not when one looks at the overall budget for social protection. If the scheme was working as well as the Government's amendment suggests, we would not be having this debate. However, we have been hearing the opposite from the groups and the parents. They tell a very different tale.
Every expectant parent hopes for the arrival of a healthy baby but, unfortunately, life does not always turn out that way. Babies are born with a variety of disabilities, physical, mental and sometimes both. When one listens to the parents, it brings home the implications of supporting and rearing a child with a disability. There are Members of the Dáil and Seanad, as well as parents in the Visitors Gallery this evening, who have children with special needs. They know it is a 24-hour-day, 365-days-a-year task and they are lucky if they get some respite. They deal with children who have no communication skills, no concept of danger awareness, sensory deprivation and compulsive behaviours. It is interesting to listen to parents refer to themselves as warriors and stating it is like going into battle for one's child because the services are not adequate. One must fight for everything, including resource hours, special needs assistants, occupational therapy and speech and language supports. Life definitely is not being made easier for such people. I met parents yesterday for whom the story was the same. They were obliged to fight and struggle strenuously to get the resources their children needed. Members see the flaws in the system, including the diagnostic codes, the sheer bureaucracy and the delays.
On the call for the review, I add my voice to those who state the voices which must be listened to are those of the parents and groups who are actively involved with such children. In the case of a child with autism, dyspraxia or Asperger's syndrome, there is no cure and consequently their lives will not change. While they might be provided with strategies to help them to cope with life, the needs will always remain. A particular issue in this regard is that for parents who have a child with Down's syndrome or a physical disability, the condition is visible but this is not the case for autistic children and not sufficient cognisance is given to this aspect. I support the call by the Autism Rights and Equality Alliance for the Government to develop a comprehensive autism lifespan strategy for those concerned, which would eliminate the need for crisis interventions or the obligation to telephone one's public representative to get one's entitlements, because one's needs would be addressed.
First, this issue is not being debated in the House this evening because of the actions of the Technical Group, Independent Members or the United Left Alliance. It is being debated because of the tremendous commitment, bravery and determination of the families themselves and their concern to vindicate the rights and needs of their children. The Technical Group Members are merely acting as their agents in bringing forward these issues. I pay tribute to the DCA Warriors and all the other families of children with disability and special needs who have forced this issue onto the agenda. Above all, I urge them to keep going, to keep protesting and to keep fighting.
I was extremely disappointed both by the Minister's speech last night and that of the Minister of State, Deputy Kathleen Lynch, this evening because there has been virtually no acknowledgement of the desperation, frustration and anger being felt by the families of children with disability and special needs, which have forced this issue onto the agenda. As Deputy Donnelly noted, the Government amendment is disappointing and frankly disingenuous in the extreme. It implies there really is not a problem, more money is being spent, more people are in receipt of domiciliary care allowance, DCA, and while everything really is fine, the Government will have a review and will have a look at the issue. This is not good enough and it is particularly disappointing that the Government quoted figures on the absolute numbers of people in receipt of DCA and the absolute quantum of money that is spent. That is the oldest trick in the book, namely, covering up something of which the Minister of State is well aware. Moreover, it leads me to believe the Government is being disingenuous on the issue because the reason more people are in receipt of DCA and more has been spent is that each year, 10,000 additional children reach school age. As Ireland has a demographic bubble of young people coming online, therefore the demand for DCA and other supports for children with disability and special needs is increasing.
However, this simply is not the issue Members on this side have raised. The issue is whether there is a bureaucratic and cost-cutting approach to dealing with people who make applications for DCA and other supports for their children. Members, and most importantly the parents, are asking whether a stealth cut has been instructed politically from the top but which has not been announced. I refer to a bureaucratic cost-cutting measure in which people who make applications for DCA are being treated in a callous, brutal, humiliating and inhuman way when they seek supports they need, deserve and should have. Is it the case they are being put unnecessarily through further hardship, stress and humiliation because of a political decision to tighten up, cut back or to have a bureaucratic and cost-cutting approach to dealing with human beings and families who have special needs, are vulnerable and who need support, not hardship? Moreover, the figures bear this out. The point being made is that in 2009, only 25% of those who applied felt the need to appeal while in 2011, some 50% did so. The number of people who were forced to appeal has doubled in two years and has increased significantly since this Administration came to office. When one then discovers that 50% of those who then go through the arduous and difficult process of appealing actually succeed, this means that huge numbers of families are being put through such hardship unnecessarily. They should not have been forced to appeal in the first place. They needed the support but did not get it because they were dealt with badly. This is the issue and it is not addressed or acknowledged in any way by the Government amendment. As a result, families are being put through this additional hardship and humiliation, as well as the additional expense of being obliged to gather evidence to make the appeal. Moreover, people are being contacted in the context of reviews and are being asked questions like whether their child is cured even when the child in question has permanent disabilities. This is an unbelievable situation.
I will turn to what is being sought in the motion, by Members on this side and, most importantly, by the parents and families. While the Government should carry out a review, for which there is an urgent need, it should be real and the stakeholders, that is, the families themselves and the organisations representing them, must be absolutely central to such a review. However, there is no need to await the outcome of such a review to take action. Nothing in the Technical Group's motion could not be acted upon immediately by the Government, while still carrying out its review to improve the position even further. The Government could take action right now to alleviate the unnecessary hardship and suffering that vulnerable families and their children are being put through. I disagree slightly with Deputy Donnelly on the question of who is responsible. There is an old saying that the fish rots from the head and the buck stops with those at the top, namely, the Ministers and Government. I believe this is part of cost-cutting by tightening up instructions. In addition, instructions appear to have been issued either formally or informally to those working in the public health services that they no longer are allowed explicitly to recommend that people get DCA and other such supports. This appears to me like pressure for cutbacks in order to justify them. In addition, the savage staff cuts in the public service must explain the dramatic increase in outstanding appeals. Why has the number of outstanding appeals risen from one in 2009 to 900 in 2011? This unquestionably pertains to cutbacks. The Technical Group's request is very simple and the Minister of State should accede to it. If there is serious evidence from social workers or GPs that a child has needs over and above those of a child of the same age without a disability, this simply should be accepted. One can decide immediately there will be no reviews of those who have permanent disabilities, for whom no such review ever would be necessary.
The Government can also ensure that people do not have to wait 38 weeks for appeals and that resources are provided to ensure this do not happen. It can do this immediately, following which it can have its review to make the situation even better. I appeal to the Minister to do so.
Amendment put:
The Dáil divided: Tá, 81; Níl, 41.
Tá
- Bannon, James.
- Barry, Tom.
- Breen, Pat.
- Bruton, Richard.
- Burton, Joan.
- Buttimer, Jerry.
- Byrne, Eric.
- Cannon, Ciarán.
- Carey, Joe.
- Collins, Áine.
- Conaghan, Michael.
- Conlan, Seán.
- Connaughton, Paul J.
- Conway, Ciara.
- Coonan, Noel.
- Coveney, Simon.
- Creed, Michael.
- Daly, Jim.
- Deasy, John.
- Deering, Pat.
- Doherty, Regina.
- Dowds, Robert.
- Doyle, Andrew.
- Durkan, Bernard J.
- English, Damien.
- Farrell, Alan.
- Feighan, Frank.
- Ferris, Anne.
- Flanagan, Charles.
- Flanagan, Terence.
- Griffin, Brendan.
- Harrington, Noel.
- Harris, Simon.
- Hayes, Tom.
- Heydon, Martin.
- Howlin, Brendan.
- Humphreys, Heather.
- Humphreys, Kevin.
- Keating, Derek.
- Keaveney, Colm.
- Kelly, Alan.
- Kyne, Seán.
- Lawlor, Anthony.
- Lynch, Ciarán.
- Lynch, Kathleen.
- Lyons, John.
- McCarthy, Michael.
- McEntee, Shane.
- McHugh, Joe.
- McLoughlin, Tony.
- McNamara, Michael.
- Maloney, Eamonn.
- Mathews, Peter.
- Mitchell, Olivia.
- Murphy, Dara.
- Murphy, Eoghan.
- Neville, Dan.
- Nolan, Derek.
- Noonan, Michael.
- Ó Ríordáin, Aodhán.
- O’Donnell, Kieran.
- O’Donovan, Patrick.
- O’Dowd, Fergus.
- O’Mahony, John.
- O’Reilly, Joe.
- O’Sullivan, Jan.
- Perry, John.
- Phelan, Ann.
- Phelan, John Paul.
- Ryan, Brendan.
- Shortall, Róisín.
- Spring, Arthur.
- Stagg, Emmet.
- Stanton, David.
- Timmins, Billy.
- Tuffy, Joanna.
- Twomey, Liam.
- Varadkar, Leo.
- Wall, Jack.
- Walsh, Brian.
- White, Alex.
Níl
- Adams, Gerry.
- Boyd Barrett, Richard.
- Broughan, Thomas P.
- Browne, John.
- Calleary, Dara.
- Collins, Joan.
- Cowen, Barry.
- Daly, Clare.
- Doherty, Pearse.
- Donnelly, Stephen S.
- Flanagan, Luke ‘Ming’.
- Fleming, Tom.
- Grealish, Noel.
- Halligan, John.
- Healy, Seamus.
- Healy-Rae, Michael.
- Higgins, Joe.
- Kelleher, Billy.
- Kirk, Seamus.
- Kitt, Michael P.
- Lowry, Michael.
- Mac Lochlainn, Pádraig.
- McConalogue, Charlie.
- McDonald, Mary Lou.
- McGrath, Finian.
- McGrath, Mattie.
- McGrath, Michael.
- McLellan, Sandra.
- Murphy, Catherine.
- Naughten, Denis.
- Ó Caoláin, Caoimhghín.
- Ó Cuív, Éamon.
- Ó Snodaigh, Aengus.
- O’Brien, Jonathan.
- O’Sullivan, Maureen.
- Ross, Shane.
- Smith, Brendan.
- Stanley, Brian.
- Tóibín, Peadar.
- Troy, Robert.
- Wallace, Mick.
Tellers: Tá, Deputies Emmet Stagg and Fergus O’Dowd; Níl, Deputies Aengus Ó Snodaigh and Catherine Murphy.
Amendment declared carried.
Question put: "That the motion, as amended, be agreed to."
The Dáil divided: Tá, 79; Níl, 41.
Tá
- Bannon, James.
- Barry, Tom.
- Breen, Pat.
- Bruton, Richard.
- Burton, Joan.
- Buttimer, Jerry.
- Byrne, Eric.
- Cannon, Ciarán.
- Carey, Joe.
- Collins, Áine.
- Conaghan, Michael.
- Conlan, Seán.
- Connaughton, Paul J.
- Conway, Ciara.
- Coonan, Noel.
- Coveney, Simon.
- Creed, Michael.
- Deasy, John.
- Deering, Pat.
- Doherty, Regina.
- Dowds, Robert.
- Doyle, Andrew.
- Durkan, Bernard J.
- English, Damien.
- Farrell, Alan.
- Feighan, Frank.
- Ferris, Anne.
- Flanagan, Charles.
- Flanagan, Terence.
- Griffin, Brendan.
- Harrington, Noel.
- Harris, Simon.
- Hayes, Tom.
- Heydon, Martin.
- Howlin, Brendan.
- Humphreys, Heather.
- Humphreys, Kevin.
- Keating, Derek.
- Keaveney, Colm.
- Kelly, Alan.
- Kyne, Seán.
- Lawlor, Anthony.
- Lynch, Ciarán.
- Lynch, Kathleen.
- Lyons, John.
- McCarthy, Michael.
- McEntee, Shane.
- McHugh, Joe.
- McLoughlin, Tony.
- McNamara, Michael.
- Maloney, Eamonn.
- Mathews, Peter.
- Mitchell, Olivia.
- Murphy, Dara.
- Murphy, Eoghan.
- Neville, Dan.
- Nolan, Derek.
- Ó Ríordáin, Aodhán.
- O’Donnell, Kieran.
- O’Donovan, Patrick.
- O’Dowd, Fergus.
- O’Mahony, John.
- O’Reilly, Joe.
- O’Sullivan, Jan.
- Perry, John.
- Phelan, Ann.
- Phelan, John Paul.
- Ryan, Brendan.
- Shortall, Róisín.
- Spring, Arthur.
- Stagg, Emmet.
- Stanton, David.
- Timmins, Billy.
- Tuffy, Joanna.
- Twomey, Liam.
- Varadkar, Leo.
- Wall, Jack.
- Walsh, Brian.
- White, Alex.
Níl
- Adams, Gerry.
- Boyd Barrett, Richard.
- Broughan, Thomas P.
- Browne, John.
- Calleary, Dara.
- Collins, Joan.
- Cowen, Barry.
- Daly, Clare.
- Doherty, Pearse.
- Donnelly, Stephen S.
- Flanagan, Luke ‘Ming’.
- Fleming, Tom.
- Grealish, Noel.
- Halligan, John.
- Healy, Seamus.
- Healy-Rae, Michael.
- Higgins, Joe.
- Kelleher, Billy.
- Kirk, Seamus.
- Kitt, Michael P..
- Lowry, Michael.
- Mac Lochlainn, Pádraig.
- McConalogue, Charlie.
- McDonald, Mary Lou.
- McGrath, Finian.
- McGrath, Mattie.
- McGrath, Michael.
- McLellan, Sandra.
- Murphy, Catherine.
- Naughten, Denis.
- Ó Caoláin, Caoimhghín.
- Ó Cuív, Éamon.
- Ó Snodaigh, Aengus.
- O’Brien, Jonathan.
- O’Sullivan, Maureen.
- Ross, Shane.
- Smith, Brendan.
- Stanley, Brian.
- Tóibín, Peadar.
- Troy, Robert.
- Wallace, Mick.
Tellers: Tá, Deputies Emmet Stagg and Fergus O’Dowd; Níl, Deputies Aengus Ó Snodaigh and Catherine Murphy.
Question declared carried.
The Dáil adjourned at 9.20 p.m. until 10.30 a.m. on Thursday, 10 May 2012.
