Posted February 7th, 2012
Fine Gael TD for Wicklow, Simon Harris, has today (Tuesday) called on those with an interest in and expertise on autism to harness their energy towards the huge body of work which needs to be done in this area, rather than making unhelpful and sensational comments in the media.
“I was shocked to read a recent article in the national media where a health care professional was purporting that autism could be brought about due to the behaviour of parents and carers around children. This is an out-dated and ludicrous theory which is extremely offensive to parents of children with autism.
“These hurtful and ill-informed comments do nothing to help families living with autism. In fact, they undermine the excellent work which so many families, medical professionals and advocacy groups have worked to progress in recent years. The parents of autistic children have worked extremely hard to put support structures in place for their children, which has been an uphill battle for many years.
“Now, during a time when resources are scarce, any sort of suggestions that autistic children don’t require resources and support is extremely unhelpful. There is so much work to be done in the area of autism and in the area of disability as a whole. Many challenges remain for Government and society in terms of meeting the needs of autistic children, be they in the area of education, health, social welfare, employment opportunities etc.
“These are the issues that I am determined to contribute to and I know anyone with a sincere interest in autism will put their time, attention and energy into achieving these goals. This Thursday, the Dáil will be discussing disability issues and I look forward to playing my part in this important discussion.”
Posted February 7th, 2012
Calls for submissions to Department’s Advisory Group on tax and social welfare
Fine Gael TD for Wicklow, Simon Harris, has advised people with disabilities, the parents of children with disabilities and any other interested groups to make written submissions to the Department of Social Protection’s Advisory Group on Tax and Social Welfare. The group is also inviting submissions on social insurance cover for people who are self-employed.
Deputy Harris said, “Like many people, I was deeply concerned by the changes to the Disability Allowance proposed in Budget 2012. These changes have now been put on hold, and there is an opportunity for all interested parties to make submissions to an Advisory Group.”
“The group is looking for submissions on Disability Allowance and Domiciliary Care Allowance relating to eligibility criteria, rates of payments and age thresholds. The deadline is Wednesday, February 22.”
“I will be making a written submission to the group, but it is very important that people interested in this area take the opportunity to have their voices are heard. I know the importance of these payments to people right across the country, and I trust the Minister will engage constructively with the findings of the Advisory Group, which has been tasked with looking at the operation and interaction of social welfare payments.”
“Submissions can be emailed to AdvisoryGroup@welfare.ie or posted to Joan Gordon, Secretary to the Advisory Group, Department of Social Protection, Áras Mhic Dhiarmada, Store Street, Dublin 1.”
Posted February 2nd, 2012
Deputy Simon Harris: I welcome the opportunity to raise the important need for the Minister for Social Protection to address urgently the problems being encountered by parents of autistic children seeking to receive or retain the domiciliary care allowance.
I thank the Minister for her presence in the Chamber. According to the Department of Social Protection document, Medical Eligibility Guidelines for Domiciliary Care Allowance, domiciliary care allowance is a payment made in respect of the extra care, attention and supervision needs of the child.
It is a monthly payment of €309.50, paid until the age of 16 and is also linked to eligibility for respite care grants and carer’s allowance. I know many families living with conditions on the autistic spectrum, as do all Members. These children require extra care, extra supervision, extra attention and, in many cases, dominate a family’s life.
Conditions on the autistic spectrum manifest themselves in many ways. To the outside world, a child might seem almost typical but behind closed doors a family could be experiencing severe challenges in meeting the care needs of their son or daughter. When it comes to autism and assessing need, nothing is black or white. It varies from child to child, from family to family.
Domiciliary care allowance does not remove the challenges and it does not provide a cure because there is no cure. However, it provides some recognition, some help and some acknowledgement that the parents of a child with autism spectrum disorders, ASD, are meeting those extra care needs. It is a small help in what can be a difficult family life.
It now seems that parents of children with autism are meeting more and more obstacles in their efforts to receive domiciliary care allowance or, for those already in receipt, to retain it. I will give an example in the words of a parent:
I was one of the first to be hit with the refusal letter after Christmas having been in receipt of DCA for a little over 2 years. Apparently the reason they gave for refusing to continue payment was, “your child doesn’t require any more care than a child of the same age who doesn’t have a diagnosis”.
That is earth shattering and insulting to the family of a child with a special needs diagnosis. That child was diagnosed two and a half years ago with ASD. The child has toileting and feeding issues and can be prone to meltdowns. They have a full-time SNA in school, yet the Department had the audacity to say that the child does not have additional care needs.
I do not expect the Minister for Social Protection or any other Minister to respond to individual cases in a debate – I would not raise any individual case – but I want to assure her that the comments of this parent are replicated by dozens of others who have contacted my office.
Fear of the postman delivering a brown envelope with the State harp through the door, informing families with autism that their child does not have extra care needs, is a real worry for many. I implore the Minister to take the opportunity of this debate to talk with her officials in her Department and revert with an update on the issue.
Why are so many children with autism being subjected to reviews all of a sudden when their needs have not changed? Why are so many families of children with autism being refused payments they and their doctors know they need – they supply medical evidence in support of them.
I will conclude with a comment from another parent: “I am at my wits end trying to put together enough paperwork to prove what is clearly obvious to anyone who spends time with my children. I cannot tell you how soul destroying this process is.” The parents of children with autism have to constantly fight a bureaucratic war with paperwork to prove a need they and their doctors know exist and they do not have time to be fighting. I would be grateful to hear anything the Minister can do to help address the situation.
Minister for Social Protection (Deputy Joan Burton): The domiciliary care allowance, DCA, is a monthly payment to the parent or guardian of a child with a disability so severe that the child requires care and attention and-or supervision substantially in excess of another child of the same age.
This care and attention must be provided to allow the child to deal with the activities of daily living, and she or he must be likely to require this level of care and attention for at least 12 months. Responsibility for the administration of new claims to the allowance transferred to the Department from 1 April 2009, with the existing customer base transferring on 1 September 2009.
The allowance is currently paid to over 24,000 parents or guardians in respect of 26,000 children at a cost of approximately €100 million in 2011, with the accompanying respite care grant costing a further €45 million, a total of €145 million. The respite care grant is an annual payment of €1,700 automatically paid to DCA parents in respect of each qualified child, provided it is in payment at the beginning of June in the particular year.
The application process for the allowance is exactly the same for children with autism as for those with any other disability and involves the completion of a claim form which includes details of the medical condition of the child and the level of care and attention the child needs to deal with normal day to day activity.
This information can be provided by the parent or guardian of the child, the child’s general practitioner and any other professionals who have dealt with the child. There is a section on the application form which allows for the detail of referrals to any of nine professional services to be listed and reports relating to these referrals can be included with the application.
Applicants are also free to submit any other information they feel will inform the Department’s deciding officer in making his or her decision. All the information submitted is assessed by designated departmental medical assessors. Decisions are made by doctors, not departmental administrative officials.
Medical assessors are qualified and experienced people who meet regularly to ensure best practice and consistency of approach. As the medical diagnosis is not in dispute, it is considered that the medical assessor is in a position to perform the role of assessing the additional care required for the child by way of desk assessment using the detailed information supplied.
Based on the information available, the Department’s medical assessors give their opinion to the deciding officer as to whether the child’s disability is such, as Deputy Harris said, that it requires him or her to need continual or continuous care and attention substantially in excess of that required by a child of the same age. They also advise as to whether the disability is likely to last for at least 12 consecutive months.
The range of disabilities that could qualify a child for the allowance is not prescriptive and, as such, each case is decided on its merits, taking account of all the available information. The current application form allows for the applicant to submit as much information as he or she may wish and from as diverse a group of professionals as possible. This ensures that the medical assessor has all the relevant information available before giving his or her professional opinion in each case.
The decision as to whether a child satisfies the qualifying conditions for DCA is made by the deciding officer, having considered all the circumstances including the opinion of the Department’s medical assessor.
In this context, the Deputy should note that the percentage of children on the autism spectrum that are refused DCA is in line with the overall refusal rate. DCA cases are reviewed to ensure that the conditions for receipt of the payment continue to be met. Scheduled reviews, on the recommendation of the medical assessor, are based on the prognosis of the child’s disability and how his or her condition may or may not improve over time.
Parents and guardians are involved in the review process as reviews are initiated with the completion a review of medical criteria form by the parent, which also requires medical input from the child’s doctor. The parent returns this form, together with any additional recent reports of medical or therapeutic services the child may be receiving.
This information is then sent for review by one of the Department’s medical assessors who will provide an opinion to the deciding officer on whether the child still meets the medical criteria for receipt of the payment. DCA remains in payment during the review process until a revised decision is made.
Deputy Simon Harris: I thank the Minister for her comprehensive reply which sets out the technical nature of the DCA scheme. From dealing with the issue in my clinic and my involvement with autism charities – many Members of the House will concur – it is not being matched with the reality.
In an effort to be constructive I will highlight some issues. One is the 21 day period of appeal that families are given. In many cases families cannot access the support services they need to back up their appeals within 21 days.
Families depending on access through the public service wait for a longer period of time. As I am sure do many other Members, I meet people who come to my clinic in a panic to return the form within 21 days but have not seen medical experts within that period to back up their complaints.
The Minister referred quite correctly to the disabilities the Department’s medical experts examine and whether a disability will last longer than 12 months. In the case of a condition like autism, it is lifelong and there is no cure.
Some of the reviews I have come across happen at the most bizarre times, such as when an autistic child turns 13 years of age, moves to secondary school or commences puberty. They are very sensitive stages in the life of a child with a disability and a family living with an autistic child. Such reviews can be insensitive.
The problem I and the families I talk to see is that autism is not, strictly speaking, a medical condition. It is a neurodevelopmental condition. It is not the same as being in a wheelchair, with the many challenges that poses. It is different and varies from child to child.
Representatives of autism support groups have met with Department officials and have expressed concern about the DCA operational guidelines for deciding officers. I understand the officials acknowledged there may be an issue and it might be an area the Minister can examine. The Minister might also provide us with up-to-date data on the period of time it takes to assess an appeal, particularly if it has been refused.
Deputy Joan Burton: I want to discuss what is happening in terms of numbers. Some 55% of the claims for children with autism-related conditions were allowed from 1 April 2009 to 31 March 2011. These statistics are based on a total of 920 DCA applications processed during that period, with a stated medical condition within the autism spectrum.
Of these, 507 were deemed to satisfy the qualifying criteria, and 413, or 45%, were deemed ineligible. Approximately 46% of all claimants are awarded the allowance. The success rate does not vary significantly between claims relating to an intellectual disability and those relating to a physical disability.
This must be emphasised in the context of the Deputy’s concern that children with an autism spectrum problem may be dealt with differently from other children whose parents submit claims.
The Department took over the scheme in 2009, before which the eligibility criteria were set out in a circular from the Department of Health and Children. The medical criteria, as set out in the circular, referred to children with a severe disability requiring continual or continuous care and attention which is substantially in excess of that normally required by a child of the same age.
The medical criteria in the Social Welfare Act are almost exactly the same. There were no agreed national guidelines for the scheme when it was under the Department of Health and Children and the HSE. An expert medical group was established when the scheme was being transferred to the Department of Social Protection.
The primary purpose was to set out consistent and objective guidelines for use nationally in determining the eligibility of children for the scheme. The assessment structure developed from the recommendations of that group.
If at the time of a child’s assessment there is a recommendation to award an domiciliary care allowance, a review date is often indicated by the medical examiner. I presume the review’s appropriateness is based on his or her medical expertise related to the condition the child presents with. The structure is in place.
While I appreciate what the Deputy is saying about families being concerned, we are not treating children with an autism spectrum disability differently from others. The circumstances of children who qualify at a certain age for the allowance may improve or change. The expert medical group gave advice on the structure.
Posted January 16th, 2012
Sunday Independent, 15 January 2012
No matter how tight money is, we must now deliver to people with disabilities, writes Simon Harris
GREAT outrage without reform never gives a good result. That’s exactly what happened in December.
The Government announced planned cuts to young people with disabilities. People with a sense of social justice rightly reared up. They realised that this group often have to pay more just to go about their daily lives — taking a bus, making a phone call, going to the shop.
This outcry caused the “pausing” of the proposed cuts. Problem solved? No. We need more than outrage if we want to give disabled young people a better deal.
Governments, one after the other, have neglected people with disabilities in the years of economic plenty. No matter how tight money is, we must now deliver. And we must deliver directly to people with disabilities.
Why, for example, should almost 75 per cent of public money spent on disabilities be paid to service providers rather than directly to people with disabilities? Just because you have a disability doesn’t mean you’re not a citizen or a consumer, and you’re entitled to be treated as both. People with disabilities should be able to choose what services they want to avail of, what training suits them best or what residential accommodation they would prefer.
Secondly, the Government needs to act on the desire of people with a disability to work. The ESRI did some research showing that two-thirds of young adults with a disability want to work if the circumstances are right. It is a myth and an insult to suggest that young people with a disability want to remain on social welfare. They have just the same ambition and drive as the rest of the population.
But to date, this country has done little to help them get into the workforce. We need appropriate training, education and job supports to be put in place. Give these young people the tools they need to access the workforce. This is the right thing to do and, as if that wasn’t enough, it also makes economic sense.
Some people with a disability may never be able to work — and they must be supported. But we need to differentiate between that group and those who can work but need the Government to realise that they don’t want a social welfare cheque thrown at them. Instead they want the same chance to prosper and thrive as everyone else.
The Government must also address the poverty trap in which many people with disability are caught. This is a well-documented reality. In 2008, a survey across the OECD revealed that more than 30 per cent of people with a disability in Ireland were living in poverty. Shamefully, this is more than two-and-a-half times the figure for the population in general. What a shocking indication of the way our country is failing people with a disability.
A classic example of such a poverty trap is the loss of supports such as a medical card if a person with a disability obtains employment. If you have a disability you are more likely to face higher medical costs than other people of your age. Long-term medication, regular check-ups and being prone to illness are realities for many with a disability. In these cases, the prospect of losing that medical card to take up a paid job is too high a price to pay.
Why not make these safety nets, such as the medical card, independent of employment status for people with a disability? This would set about closing off poverty traps and enabling people to work without fear. This sort of reform is essential if we are serious about bringing down these poverty figures and tackling disability issues with more than platitudes.
It is possible to save money in the disability sector — as it is right across society — but Government needs to recognise that these savings must be secondary to delivering upon the challenges facing people with disabilities in Ireland. It is targeted reform, and not blunt cuts, that will produce the real savings, while delivering full citizenship to a disregarded minority.
One of the biggest problems facing that minority is that the media and the public tend to — rightly — get outraged when they spot an injustice like the cutting of supports to people with disabilities. But once the outrage dies down, the caravan moves on and the group in need of action is left behind. We need to turn outrage into action.
Posted January 13th, 2012
Hugely important for early intervention
Fine Gael TD for Wicklow, Simon Harris, has today (Friday) welcomed the announcement by the Minister for Health, James Reilly, that an allocation of €1 million in additional funding will be made available to address the needs of children with autism this year. A further €1 million over the next two years, totalling €3 million will also be made.
“I am very pleased with today’s announcement. Every parent of an autistic child knows that early intervention is crucial for their child’s development and to see this additional funding targeted at the roll-out of early intervention schemes is hugely encouraging.
“Supporting children with autism is an issue very close to my heart. I first got involved in politics when I set up a support and lobby group for children with autism. We are all well aware of the challenging economic times we are living in and to receive this good news on a like today, will do two things. First, it will make a real difference to providing services to children with autism and second, it will send out a very clear message that Fine Gael in government is determined to do all that it can to support families living with autism.
“This funding, which will be reflected in the HSE’s Service Plan, will be focussed on addressing waiting times for specialist therapy services for children and on developing Early Intervention Teams.”
Posted January 6th, 2012
Fine Gael Wicklow TD, Simon Harris, has undertaken to pursue disability issues as a priority when the new Dáil session commences, on Wednesday (January 11).
Deputy Harris said, “I believe the Programme for Government agreed between Fine Gael and Labour outlines a vision which will significantly improve the quality of services available to people with disabilities. Many of measures proposed are cost neutral, such as the plan to allocate service users with a ‘personal budget’.”
“At present, private service providers are paid a flat rate directly by the state, but giving consumer choice to service users will require providers to respond to the needs of their individual clients, leading to a reduction of waste within the system. Another measure long overdue, but also cost-neutral, is the introduction of Mental Capacity legislation, to update the out-dated laws currently in place.”
“Over the course of the coming term, I will be following up on these and other concerns affecting people with disabilities as an issue of priority. As part of this process, I will be consulting widely with people with disabilities, carers and service providers. I would ask anyone with experience of disability issues who would like to feed into this process to contact me directly on firstname.lastname@example.org.”
Suspension of changes to Disability Allowance creates opportunity for real and meaningful debate & consultation
Posted December 8th, 2011
Fine Gael TD for Wicklow, Simon Harris, has welcomed the decision by An Taoiseach to postpone the changes to the Disability Allowance in Budget 2012.
“I welcome the decision to postpone the changes to the Disability Allowance in Budget 2012, and I hope that the media and political focus this matter has received over the last 24 hours will bring the issue of disability in this country into focus.
“I hope the spotlight will now focus on the issues surrounding disability as there are many real challenges that people in this country with disabilities face across a range of areas, including access to the workforce. During the years of the Celtic Tiger so many issues around disability were ignored or sidelined. Now, as we work to rebuild our country, we must ensure this is never again the case.
“The time space now created by today’s decision must be used to have a meaningful debate and engagement on disability issues in this country. The Programme for Government makes a range of commitments on the issue of disability including publishing a new National Disability Strategy, as well as the creation of personal budgets for services relating to disability.
“Lessons must be learnt by us all based on the last 48 hours or so. Many people with disabilities face a huge struggle to go about their daily lives. The discussion on issues around disability must go well beyond a narrow debate simply confined to one or two social welfare payments. There is a huge body of work to do and I look forward to doing my utmost to progress work in this area.
Posted November 24th, 2011
Fine Gael Wicklow TD, Simon Harris, has welcomed the publication by the National Council of Special Education (NCSE) of an information booklet to help parents understand the supports that are available in schools for children with special needs.
Deputy Harris said, “I welcome this publication, which, for the first time, clearly and comprehensively outlines the assessment process, the types of education available, and the supports in place for children with special needs. I think this is a positive step forward in helping parents make informed decisions concerning their children’s education.”
“I believe the allocation of special needs supports for children should be a fully transparent process. I have asked my colleague, the Minister for Children, Frances Fitzgerald, to extend the remit of the Children’s Ombudsman to include the NCSE, so that parents will be able to ensure the best interests of their children are at the heart of every decision. I am continuing to pursue this issue in the Dáil.”
“Recently I also met with the Special Needs Parents Association and I am continuing to work with them in the interests of children with special needs.”
Posted September 15th, 2011
Wicklow TD looks forward to busy Dáil session with legislation on a range of issues, including ending upward-only rent reviews, protecting children, improving road safety, introducing electoral reform and, of course, pursuing a vigorous economic agenda.
Wicklow Fine Gael TD, Simon Harris, has said that more than 30 Bills will be published by the Government in this new Dáil session dealing with a range of issues and concerns for people.
Reacting to the new legislative programme published this week, Deputy Harris said, “The legislative programme for this Dáil session balances the need for the Government to meet its economic commitments whilst also ensuring that issues of major national importance such as child protection are prioritised.”
“This is going to be a massively busy Dáil session and I am looking forward to contributing to the legislative process and the debates on the many issues which will come before us in the next 12 weeks or so. From an economic perspective, legislation will be published to finally address the issue of upward-only rent reviews and a temporary credit guarantee scheme for small and medium businesses will be introduced. These two measures should be of assistance to the many local businesses throughout county Wicklow,” stated Deputy Harris.
“In addition to pursuing an economic agenda, it is important that other major issues do not get forgotten about and that is why I am pleased to see that our legislative schedule prioritises child protection, the establishment of a Human Rights & Equality Commission, introducing electoral reform and measures to further improve road safety in Ireland” continued Deputy Harris.
“As well as participating in these legislative measures, I look forward to a busy few weeks ahead as a member of the Public Accounts Committee with many important meetings scheduled to examine a number of issues including social welfare fraud, the black economy and the operation of the Revenue Commissioners,” concluded Deputy Harris.