Catherine Murphy (Kildare North, Independent)

I thank the Technical Group for agreeing to table this Private Members' motion, which we have worked on together.

The domiciliary care allowance was never an automatic award. As we often hear from parents, many people found out about it by accident. A person must apply for it. To qualify for the monthly payment of €309, the person caring for a child, usually the mother, had to prove the child had a disability and needs substantially in excess of those of a child of a similar age. The payment was in recognition of the fact the child needed assistance to deal with many of the activities of daily living. Proof was usually in the form of expert opinions or, in some cases, the HSE reviewers actually seeing the child.

Until 2009, the allowance was processed by the HSE. However, new applications from that year were made to the Department of Social Protection. In recent months, parents have been telling us how much they dread the postman arriving with the letter that tells them the domiciliary care allowance is to be reviewed. This is particularly so if a parent's child is on the autism spectrum. There is mounting evidence that children with autism or other intellectual disabilities are being targeted. I acknowledge that those affected are not exclusively in those categories, but they seem to comprise a disproportionate number. That a Department named "Social Protection" is doing this is cynical. It is certainly not offering protection to the most vulnerable group of children and parents.

The process appears to be flawed, in that it follows a medical model when it should be a more holistic one. There is also a social aspect to this matter. We are seeking a short-term solution to the current crisis in which many families find themselves as well as a more inclusive system, one that adopts a social model as opposed to a medical model purely.

There are always choices to be made in politics. I doubt that the top 10% of earners would feel good if they knew that their incomes were being protected at the expense of vulnerable children. Top earners increased their incomes by 8% last year according to the CSO. An additional tax on high earners could have been imposed without any loss in their living standards.

The Minister for Social Protection needed to find savings of €680 million in her budget. The main objective was to protect the headline rate of social welfare recipients. To those who are not dependent on social welfare, this translated into no cuts in social welfare, yet this cannot be achieved because the money needed to come from somewhere. The Government repeatedly made the point that there were to be no tax increases or reductions in headline rates of social welfare. The sin of omission was in not specifying how the savings would be achieved. The changes to the domiciliary care allowance, cuts in the number of people who qualify for carer's allowances, etc. have become evident. Although the Government claimed it was seeking to protect the most vulnerable, it was more concerned with merely giving that impression. Some families are being hurt badly.

The domiciliary care and carer's allowances are not being cut. Rather, they are being eliminated as payments. We have seen a continuous escalation in application refusals based on desk assessments carried out by administrators and medical assessors, none of whom is required to be a qualified specialist in the relevant areas of disability. One parent to whom I spoke last week was refused recently following a departmental review. She told me her six year old son was not toilet trained, attended a special school, was a danger to himself and a flight risk, could not feed or dress himself and could not tie his shoe laces. The list went on. He was turned down. Obviously, he was regarded as having no more need for care than an average six year old. Clearly, this is wrong.

No matter how bad a situation is, parents always hope that matters will improve for their children. However, many tell us that the process is cruel. Many complain about the short turnaround time for reviews. Often, they must obtain medical evidence from private sector sources because it is not available from public sector professionals within the allocated timeframe. In one case, a mother recently told me that it cost €1,000. Someone else told me their professional fees ran to €1,300. If these people did not have the accompanying proof, they would lose their allowances.

Not only is it a costly process for families, it is emotionally hurtful to read about what their children will not be able to do or what challenges they will face. The blackest picture must be painted. We all remember the effort made and the change in people's attitudes during the Special Olympics, where the focus was on the child's ability rather than disability. This review process turns that attitude in reverse and it is taking a toll on many families. One woman described the loneliness of life with her autistic son as he progressed through school. Her days have closed in around her and her circle of friends has, for the most part, dwindled away, unable to meet for coffee or chats even for half an hour. People do not understand and eventually give up trying. On 1 March, the woman's domiciliary care allowance review was submitted and a cloud of panic descended on her household. That cloud has not since lifted and may not until the review has been completed. According to her, the reality of life without it is too great a burden to bear.

The domiciliary care payment is often used to procure therapies that should be available through the public system. As most of us know, however, availability can depend on one's address because of the lopsided and incomplete distribution of health care professionals. One father told me of his five year old son Conor, who has an autism spectrum disorder. Since it is a neurological condition, it cannot be determined by a medical test. Conor has significant issues with communication and is still non-verbal. He needs occupational therapy to satisfy his sensory needs. As the occupational therapy service provided by the HSE is inadequate, Conor attends a private therapist at significant cost to the family. The domiciliary care allowance payment helps to fund these interventions. Were it removed, it would result in the stunting of Conor's development and place his family under tremendous stress and anxiety. These are real children. They are not just statistics.

Once a person appeals the refusal of the domiciliary care payment, the appeal can take approximately nine months or longer to be decided. Not only is the €309 monthly payment discontinued, but the associated carer's allowance is removed from those who qualify for this means tested payment. If proof is needed of the unfairness of the process, it can be seen in the level of success on appeal, with more than 50% of those who appeal being successful. Appeals are made more difficult because of the lack of information. If people are to appeal successfully, they need to know the basis for their refusal. Families are struggling with everyday challenges, including inadequate public services. This additional burden is not fair.

In many cases, a parent must leave work to care for his or her disabled child. In some cases, the carer's allowance is used to pay mortgages. For many families it is difficult enough to struggle with the emotional fall-out of having a child with special needs, without the further cruelty of adding to their financial burdens.

Many parents believe the current treatment of the domiciliary care allowance is a backdoor approach to denying the carer's allowance, the annual respite grant, the home care package and the disability payment for the child when he or she becomes eligible for it. The transfer of the payment to the Department of Social Protection has changed the application process from being a health centred support to a soft target for cuts. Some of those who originally welcomed the move in the belief that it would be considered in a wider context now believe it should be moved back to the Department of Health so that decisions can be made by those who have expertise in the field, including child protection and disability social workers.

Reviews must allow sufficient time for those who care for the child to commission expert reports through the assessment of needs procedure under the Disability Act 2005. Restrictions placed on HSE experts should be lifted. I understand they have been instructed not to recommend in their reports the payment of domiciliary or carer's allowance. That instruction needs to be reversed. The general details of decisions on social welfare appeals ought to be published, while ensuring the anonymity of those concerned, to satisfy the guarantee under Article 34.1 of the Constitution that justice shall be administered in public. We need to see the number and basis of appeals. There is a need to introduce a streamlined and human rights-focused domiciliary care allowance system which is administered in a way that understands the uphill struggle of everyday life for those seeking the allowance and does not exhaust their precious time and resources in a lengthy application, review and appeals process. We must prioritise 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.

We all understand that the economy is in a weak state and that we need to prioritise our expenditure. However, vulnerable people seem to be first in the firing line when it comes to cuts. We are not seeking to end the review process for domiciliary care allowance. We are seeking an end to a dishonest process that is targeting vulnerable children who deserve our protection. This is a flawed process which needs to change if we are to get good outcomes. Our motion does not reject the need for reviews but the system has to be coherent and fair. The parents of these children are in the age cohort which has been hardest hit by the economic collapse. Their hopes and aspirations for better lives for themselves and their children have been dealt a harsh blow from an economic point of view but their hopes have been further eroded by the extra burden of caring for a child with special needs. They need and deserve the support of a caring society.

We were told this afternoon that an official from the Department of Social Protection asked while conducting a review whether a particular child with autism had gotten better. This type of question is hurtful to people who are struggling with the everyday challenge of caring for these children. Too many of us are hearing the same stories. This system is flawed and cruel. There is an urgent need to change it.

See this speech in context