Dáil Éireann debate -
Tuesday, 19 Jul 2016

Vol. 918 No. 3

Domiciliary Care Allowance: Motion [Private Members]

Deputy Louise O'Reilly

I move:

“That Dáil Éireann:

notes:

— the inappropriate and burdensome full financial audit of the entire household and all its expenses as the sole route for a seriously ill child or a child with a disability to apply for a medical card;

— the onerous application process, the exclusive focus on 'financial hardship' and the failure to take account of medical need and the impact of a serious medical condition on a child and their family in the application for a medical card that currently exists;

— that the report of the Expert Panel on Medical Need for Medical Card Eligibility - the Keane report - concluded that it would be neither possible nor ethical to produce a list of medical conditions on which to base automatic entitlement to a medical card and that 'a listing approach risks inequity by diagnosis and a further fragmentation of services';

— that the Keane report recommended that the development of a more compassionate medical card system, which accommodates those with significant illness and disability, should be used as a 'stepping stone' to the implementation of the first phase of free GP care for all; and

— the Department of Social Protection's domiciliary care allowance scheme provides an example of an assessment model on which a new medical card eligibility test could be based, in that it is independent of both financial means and diagnosis titles; rather, eligibility is based on reaching a threshold of care needs;

acknowledges that:

— several campaigns, including the Our Children's Health campaign, were launched by families impacted by illness and disability who have first-hand experience of the struggle to secure and retain medical cards for their children; and

— the programme for Government states 'we will extend the entitlement to a medical card for all children in receipt of the Domiciliary Care Allowance in Budget 2017. Approximately 10,000 children would benefit from this initiative'; and

resolves to immediately extend a full medical card to every child qualifying for the domiciliary care allowance."

An Leas-Cheann Comhairle

I understand Deputy O'Reilly is sharing time with her colleagues.

Deputy Louise O'Reilly

I am sharing time with an Teachta Ó Caoláin. I will take ten minutes and he will take five minutes.

An Leas-Cheann Comhairle

You have 20 minutes.

Deputy Louise O'Reilly

I am also sharing with Teachta Munster.

An Leas-Cheann Comhairle

I will tell you when ten minutes has passed.

Deputy Louise O'Reilly

As health spokesperson for Sinn Féin, I would like first to welcome those parents with us here today in the Gallery and mention the many more who could not be here because they are caring for their children at home. I would also like to thank sincerely all the Teachtaí Dála, across the House, who have put their names to this motion. This is not just a Sinn Féin motion. It transcends parties and politics.

It is important that, as we rise for the summer recess, we remember that for thousands of families across the State there is no respite. They have sick children who need care and access to services. They battle every day for their children and, sadly, most of their battles are with the State. I think we all agree that that is fundamentally wrong. However, today I hope we can move to lifting one of the greatest hurdles these families are facing, access to medical cards.

What sort of system tells a parent of a young child with a disability or an illness that the granting or continuation of a child's medical card depends on the parents' jumping through bureaucratic hoops to prove they do not earn too much? Access to quality health care should be a right and not a concession to be granted or withheld by any Government, Minister or civil servant.

Let me tell the House about Réiltín. According to her nurse, Réiltín has had a particularly fragile start in life. Her mam has given me permission to use her name here tonight but it gives me no pleasure to have to share this story. Her nurse wrote in a letter:

This little girl has had a particularly fragile start in life and while she has hopefully come through very difficult surgeries for Duodenal Atresia and complex heart surgery, she has Downs Syndrome and [she] has recently been diagnosed as deaf and may require implants in the future.

She requires [a] CPAP [machine] at night for sleep apnoea [and] has significant developmental delay. Her road ahead remains very challenging and securing a Medical Card for her would certainly relieve some pressure for [her] family.

Needless to say, Reilitin’s parents, were very disappointed when Reilitin’s card was refused and [they] cannot understand why discretion was not applied to their daughters case.

A further communication from her nurse tells us that she was informed that Réiltín's continuous positive airway pressure, CPAP, machine is not covered by her long-term illness card. This has just added more stress for this family. The nurse describes Réiltín as a very deserving little girl and I do not think anyone would disagree with this, yet her medical card was not granted. We should not have to legislate for compassion but Réiltín's case proves that this is indeed what we must do. I, therefore, ask the Minister if he thinks it is right or fair that this deserving little girl has to wait. We do not think it is and the Teachtaí Dala who have co-signed this motion do not think she should wait either. We need to end the two-tier health care system and we need to move towards a system where every person who needs health care will have that need met.

I firmly believe that no Deputy in this House would disagree that children with a terminal or a life-limiting illness should have access to health care and adequate personal support irrespective of means. The public would be behind us. Anyone who has been through the medical card application process or who knows someone that has would tell us, as legislators, to simply do whatever is necessary. They would say we should forget about getting P45s, P60s, PAYE balancing statements, bank statements and evidence of mortgage payments and social welfare searches, etc. They would say that once a person's illness or disability has been confirmed and a medical need established the State should do all in its power to help and support that person and his or her family. There should be no means tests, financial audit or, as the expert group under its terms of reference were initially examining, a list of specified medical conditions. We believe that access to a medical card should be on the basis of medical need only.

We need to move to a system that shows due respect and compassion, taking fully into account not only incomes, but the burdens imposed by medical conditions, illnesses and disabilities. We must see an end to the disturbing and insensitive practice of the requirement for those with life-limiting illnesses and permanent disabilities to respond to review after review, despite the ongoing progression of their illness and the reality that there will never be a recovery for them. Some people with terminal illnesses cannot get medical cards. There is no such thing as recovering from a terminal illness.

For those of us who are fortunate to have good health or for whom there are no caring responsibilities, the importance of a medical card cannot be fathomed in terms of quality of living and quality of care. First, it meets the costs of visits to the GP, medication, aids and appliances. Whether it is one's own diagnosis or that of a child or a loved one, being dealt the blow that one needs a range of aids or medicines to deal with it, as well as the illness or disability itself, can and does cause grave hardship. When a person's household is just over the income threshold, or just straddling it, and thus unable to get a medical card, getting access to these can be next to near impossible. I spoke to one family for whom two pieces of critical equipment for their child was the equivalent of the full year's carer’s allowance payment one parent was receiving. They were over the income threshold for the medical card as a household. This is not right.

Second, the medical card is a passport to gaining automatic access to a range of community based and primary care services. This is a particularly challenging position to be in if one has a complex condition requiring ongoing multi-disciplinary support in the community. A number of studies have found that people suffering from an illness or a disability are more likely to fall into poverty than people in good health or who have debt problems due to health care costs. This is not the kind of Ireland that I think any of us want to live in. We should support vulnerable people and not exacerbate their vulnerabilities and hardship.

If the intention is to move to universal health care where access is based on need and not ability to pay and to remove the inequalities associated with that, it is right that people with disabilities, chronic conditions and distinct medical need are put to the fore of this plan. Our first step concerns the 10,000 medical cards for sick children.

Then we must legislate for a distinct, new, medical need ground for eligibility for the medical card with an associated application route, using the DCA assessment framework as a model, an assessment involving the establishment of a threshold of medical need and not tested against a household's financial means or against diagnosis titles. We must legislate for this. Reviewing previous Committee of Public Accounts deliberations on the issue, the Comptroller and Auditor General, the Secretary General and the HSE are very clear. A system whereby qualification for a medical card is on the basis of medical need alone can only be given effect by a change in the legislation, not by a change in the administration of the scheme by the HSE.

The Minister knows from his meeting with Our Children's Health that, for these worn-out parents, the medical card process is torture in slow motion, with constant form filling, endless reviews, rejection and appeals. For those who may get the medical card, discretionary or otherwise, which is a child's passport to the basic care plan, there is no relief. There is still the endless worry and anxiety. There is always another application and they are always waiting for the next review.

I know that the Minister, Deputy Harris, has issued a press release following our announcement of this motion, confirming that it is his intention to bring forward the legislation. Getting down to the practicalities, when do we envisage that those 10,000 children will see the benefit of this change? This, for many children, is very much a life and death issue and it cannot be long-fingered. If the Minister does not intend to announce the measure until budget day, when will the legislation be presented to the House? Looking at the swathes of support for this motion, I do not see any opposition to the legislation so its passage is going to be easy. We are on board already and want it to happen. If the Minister brings forward the legislation we will support it. The families need a timeframe and to know when the medical card eligibility criteria will be changed. They need certainty and the Minister should give us the certainty of a date by which the legislation will be enacted.

We welcome the Government's commitment but this group has had many false dawns. There is a track record of broken promises to these people and we should not waste any opportunity to give them the certainty they need. We will press the Minister and the Minister of State tonight to give us a date and to give the families who are watching in the Gallery and at home what they need. They cannot take another broken promise and need to know when the criteria will be changed. The Minister has support for the legislation. We have drafted it already and have attempted to table it. We can do this and we should make it a priority.

Deputy Caoimhghín Ó Caoláin

Severely sick and disabled children in this country have been grossly neglected for many years. Parents and families of these children have put in a lot of time and energy fighting to ensure that their young sick child has the right to a medical card. It is totally unacceptable and plain wrong to put any parent or family through such an ordeal when all they want to do is simply care for their child, not fight a system that refuses to recognise their plight and distress.

I welcome the parents who are here this evening and the representatives of the Our Children's Health campaign. Our Children's Health campaign was launched in May 2014 by families impacted by illness and disability who have first-hand experience of the struggle to secure and retain medical cards for their children. Its primary aim is "to ensure children with serious medical need are no longer subjected to the crude, unfair, lengthy and frustrating means test in order to be considered for a medical card". The campaign has condemned the onerous application process, the exclusive focus on financial hardship and the failure to take account of medical need and the impact of a serious medical condition on a child and their family. Our Children's Health has argued:

We cannot continue to have a situation whereby children with the most serious medical need coming from ordinary families with modest incomes and huge outgoings remain ineligible. This is simply wrong and unjustifiable.

It is high time that medical cards were granted to every child with a serious illness or disability. Sinn Féin believes that the Department of Social Protection's domiciliary care allowance scheme provides an example of an assessment model on which a new medical card eligibility test could be based, in that it is independent of both financial means and diagnosis titles. Rather, eligibility is based on reaching a threshold of care needs.

I acknowledge and welcome the fact that last week the Minister, Deputy Harris, met with Our Children's Health and committed to the automatic provision of medical cards to very sick children. It has been suggested, however, that this may not happen until 2017. That is too far away. This should happen now, as a matter of urgency. Let us not let any parent of a severely disabled or sick child have to worry a day more about their child's health needs. I repeat, we must act now.

The extension of an automatic medical card to all children in receipt of the domiciliary care allowance is only a stepping stone, albeit a very important one. Inequality is rife throughout the health system. Some pay more than others for the same care. Families in one part of the country get access to necessary services denied to those in a different region. The less well off die younger and live less healthy lives. The diminishing minority who can afford private health insurance get to jump the queue. Sinn Féin is the only party with a costed, credible plan for health. We would increase investment in the health system and use €3.3 billion of the money available to end the two-tier public-private system and deliver a new universal public health system for Ireland. Such a comprehensive system will not be achieved overnight but a beginning must be made and that requires political will and a fundamental change in the direction of policy, away from the current two-tier and increasingly privatised system. Ireland is the only EU health system that does not provide universal access to primary care. Free GP care should be available to the entire population. We are committed to the realisation of a world-class system of universal health care, accessed on the basis of need, free at the point of delivery and funded by progressive taxation in the Irish State.

I have no doubt but that every single Deputy in this House has been approached by a concerned parent of one of these children with a severe illness or disability who is at their wits' end trying to secure a medical card. Today, we have an opportunity to bring to a halt the distressing and cruel process that these families must go through. Let us get that ball rolling and ensure that those young children will have the automatic entitlement to a medical card that they are so deservedly entitled to. Iarraim ar Theachtaí na Dála seo a dtacaíocht a thabhairt don rún seo.

Deputy Imelda Munster

I am sharing time with Deputy Ó Laoghaire. I welcome the opportunity to speak on this motion on what is a very important issue. It is especially so when we consider the litany of disastrous cuts which families of children who are ill or have a disability have endured over recent years, such as the removal of medical cards and cuts to the respite grant. The Government eventually backtracked on these shameful policies but that was because of a public outcry. The difficulties for these families are huge and it was a shocking insight into the attitude of this Government towards the families. It now has an opportunity to put it right, however, with tonight's motion.

What will the Government do? Will it kick it down the road again like with so many other issues? Will it postpone it? If it does that, what does it say about the Minister? What does it say about this Government? Have they no compassion? Have they any idea of what these families and their sick children have been through?

Deputy Finian McGrath

We have lots of ideas.

Deputy Imelda Munster

If they have, I expect them to act with a sense of urgency. They can prove that when they respond to the questions asked by Deputy Louise O'Reilly. Will they expect families with sick children to wait even longer than they already have?

In the next year, will they expect families to continue to go through the rigorous application process and the household audit they have had to endure to prove their sick child is deserving of a medical card? There is no reason to allow this to be postponed for upwards of a year. I ask the Ministers to do the right thing by these families and their children and bring a sense of urgency to this issue. They should prove me wrong by not kicking it down the road. They should act on it, but do it this year.

Deputy Donnchadh Ó Laoghaire

The motion to extend medical cards to ill and disabled children would be an immediate, clear, simple and direct step to aiming the moneys of the State directly where it would have most effect and reach those who are most in need.

Tá an córas liúntais seo bunaithe ar riachtanais an linbh. Dá bharr sin, tá sé ag déileáil le páistí a bhfuil an-tinn agus tá cur chuige faoi leith ag teastáil. Caithfear an méid sin a rá freisin faoi na cartaí go mba chóir a bheith ar fáil tríd an bpolasaí seo.

The domiciliary care allowance is by no means perfect. According to the last annual report of the Social Welfare Appeals Office, 1,258 applications for domiciliary care allowance were appealed, with only 313 given a revised decision. In the context of the number of people who would apply for it, that is a substantial number. Anecdotally, I am aware that many families must go through a long and difficult process. Deputy O'Reilly referred to having to battle the State every step of the way to get this payment processed. In that context, it is worth recalling that to qualify a child must be deemed to have a disability so severe that the child requires care and attention substantially in excess of another child of the same age. That is a very high threshold. Many families have to go down the appeals route, which is a further hardship for parents who have been already seriously overburdened and put under pressure. That is a matter that needs to be resolved. I ask the Minister to take that up with the Minister for Social Protection.

In the context of this policy, I am encouraged that the Minister intends to support the motion, which is a vitally important step that needs to be progressed urgently. That being the case, the point Deputy O'Reilly made about this being available without a means test and immune from changes to household finances is crucially important. Already, these families have to fight every step of the way to ensure that their children get the services they deserve. They should not have to fight harder, and again, for those medical cards.

Minister for Health (Deputy Simon Harris)

I welcome the opportunity to address the House this evening on the Government’s commitment to extend medical card provision to all children in receipt of the domiciliary care allowance, DCA, as we set out in our agreed programme, A Programme for a Partnership Government.

I would like to acknowledge at the outset that there is broad agreement on this issue across the House, and I am very encouraged by that, but no one political party holds a monopoly of concern or compassion for the parents and children who need to see this policy implemented.

Deputy Finian McGrath

Hear, hear.

Deputy Simon Harris

While I genuinely welcome the Sinn Féin motion as an opportunity to outline the next steps, as I have already outlined them at a meeting with the members of the Our Children’s Health campaign, whom I would like to welcome to the Gallery, it is important to say that no Dáil motion was necessary to convince me or the Ministers of State, Deputies McGrath and Corcoran-Kennedy, to do this. I have been convinced by the people who are in the Gallery tonight. I have been convinced by the parents of children who are in receipt of domiciliary care allowance, the parents I have met in my own constituency, the parents of children with autism, among other conditions, whom I have worked with for many years.

In fact, on my way into what I think was my second Cabinet meeting, I spoke with Mark, who joins us here this evening, one of the Our Children’s Health campaigners, outside Government Buildings. On that occasion I took the opportunity to make very clear to Mark that this was a priority for Government and would be dealt with in the forthcoming budget. Many of us, as public representatives, have been struck by the practical challenges, as outlined by Deputy O'Reilly and others, that parents face in meeting the needs of their child with a severe disability.

As we discussed the issue that day, I came to further understand that, for many of these parents, meeting their child’s needs was the first time they had sought assistance from the State. The process of providing family financial information, expert or medical reports, and additional supporting information was and is a real burden on these parents when they were only seeking a medical card for their child. I am very clear that a core objective of the Government is to use the strengthening economy to make life better for the Irish people, and this is one such area.

The Government has committed to this significant improvement to the medical card system for a number of reasons. First, about one third of DCA children do not hold a medical card. Therefore, about 11,000 more children with a severe disability will qualify for a medical card under this measure. Second, in future, all 33,000 DCA children will automatically qualify for a medical card. Therefore, those children will not be subject to the medical card means test at any point in the future. Finally, the requirement to go through the medical card assessment process will be removed for about 30,000 families looking after a child with a severe disability. Those families will no longer need to complete a means test application form for their child and support that with expert reports and other additional information in order for their child’s case to be considered. Instead, mothers and fathers will be able focus on their primary objective of providing care and support to their child.

Last week, I held a meeting in the Department of Health with representatives of Our Children’s Health. At that meeting, I reaffirmed the Government’s commitment in its programme to providing medical cards to all children who qualify for the domiciliary care allowance. I confirmed that this commitment was a priority for me and the Government in the upcoming budget discussions and that my objective was to have legislation to enable it follow quickly after the required resources have been secured. I discussed at that meeting, and I believe there is cross-party agreement on this, the importance of doing this by legislation so that it makes it very difficult to be undone.

Deputy Louise O'Reilly

I am glad the Minister realises that.

Deputy Simon Harris

I am only ten weeks in the job, Deputy, and I am about to do it.

It is fair to say that all assessment systems have some limitations. It is probably practically impossible for a single assessment system to take account of all individual circumstances. If one tried with the best will in the world, it would probably become incredibly complex. While it is important that we acknowledge the limitations of the existing eligibility framework, it is also necessary to recognise the potential for improvements that we can make.

I believe that the recently established Committee on the Future of Healthcare will play a key role in this regard. It was set up to achieve cross-party consensus on a single, long-term vision for health care and the direction of health policy in Ireland, and to make recommendations to this House within six months. I firmly believe that the health service will benefit greatly from a single unifying vision that we can all get behind. A long-term vision, built on a cross-party or even a social consensus, can help to drive reform and development of the system over the next ten years.

I am genuinely excited that this new Dáil has come together with the aim of achieving long-term consensus on the fundamental principles of health policy. In striving for the optimal single-tier health service for Ireland, there are inevitable policy trade-offs to be confronted. These trade-offs often involve tensions between efficiency and equity or between comprehensiveness and cost control. In all countries, not just Ireland, the trade-offs centre around three basic dimensions of the health service which must be confronted when designing a health service: the proportion of the population to be covered; the range of services to be covered; and the proportion of the total costs to be met.

On the specific issue before us, Deputies may be aware that the domiciliary care allowance is administered by my colleague, the Minister for Social Protection. It is a monthly payment for a child with a severe disability, aged under 16 years, who requires ongoing care and attention substantially over and above the care and attention usually required by a child of the same age.

I accept, as others, including Deputy Ó Laoghaire, have said, that the DCA measure is not the perfect solution to our health eligibility framework. The latest available data indicate that about 33,000 children qualify for the DCA. By comparison, about 390,000 children under the age of 16 years currently qualify for the medical card. The DCA is not based on a type of disability or the medical need of a child. Under the legislation, it is based on how much extra care and attention a child needs because of it. The DCA also has a range of qualifying criteria. These include the disability being likely to last for at least one year, that the parent is providing the care to the child, that the child resides at home, and that the child meets the medical criteria of the scheme.

Recently, I visited the Health Service Executive's national medical card unit, which administers the general medical services scheme. Its functions include the processing of medical card applications. It was established in 2011 as part of the HSE’s primary care reimbursement service. I acknowledge the hard work of the staff I met. I know that they are committed to ensuring that anyone who is eligible for a medical card under the existing legislation receives their card, and that the system operates in a streamlined way. The medical card unit provides a single uniform system for medical card applications and renewals, replacing the different systems previously operated in local health offices. This ensures that people are treated in a similar manner irrespective of where they live.

The scale of the operations of the national medical card unit is enormous. In 2015 alone, the medical card unit processed almost 400,000 cases.

These included 107,000 applications and 92,000 full reviews of medical card and GP visit card eligibility as well as over 195,000 self-assessment reviews of eligibility.

Currently there are over 1.7 million people registered with a medical card and a further 450,000 people registered with a GP visit card. Under the existing health legislation the standard assessment for a medical card is based on the combined income of the applicant and spouse, or partner, if any, after tax, PRSI and USC have been deducted. In addition a further allowance is made for the costs of rent or mortgage, for the costs of travelling to and from work and the costs of child care that a family might face. In the assessment process the HSE can take into account medical costs incurred by an individual or a family. Where deemed appropriate in particular circumstances the HSE may exercise discretion and grant a medical card even though the applicant's means exceed the relevant threshold.

Deputies may be aware of a major report in 2014 by an expert panel on medical need for medical card eligibility which was chaired by Professor Frank Keane. The Keane report recommended that a person's means should remain the main qualifier for a medical card. Nonetheless, it is absolutely clear that there are people, including children, with medical needs and it is important that they should be able to access necessary assistance in a much more straightforward manner. On foot of the Keane report, the HSE established the clinical advisory group on medical card eligibility. This group is to develop a framework for assessment and measurement of the burden of disease and appropriate operational guidelines for the medical card scheme. The membership of the clinical advisory group includes clinical experts from specialist services and professions and, importantly, patient representatives. The group reports to the national director of primary care on a quarterly basis. It is expected that the group will make a report when it has completed its work in the near future.

As a result of the range of improvements implemented by the HSE on foot of the Keane report, the HSE is exercising greater discretion. There are now over 106,000 discretionary medical cards. This is the highest number of discretionary medical cards on record in the history of the State.

I shall conclude by saying that more needs to be done. I welcome this opportunity to address the House on the Government’s commitment to provide medical cards to all children in receipt of the domiciliary care allowance. This is a key commitment in the programme for Government and is a priority for me in budget 2017. I am privileged to have become Minister for Health at a time when we are in a period of reinvestment in the health services, which gives me the opportunity to address some immediate issues such as this. I will act and we will act, as I hope will all Members, with a sense of urgency. The money will be put in place in the budget in October and we will move forward with the legislation. There are parents currently sitting in the public gallery. These, and the parents of 11,000 other children, will receive an automatic entitlement to a medical card early in 2017. That is acting immediately and urgently. We must all move together.

Deputies

Hear, hear. Well done.

An Leas-Cheann Comhairle

I call on Deputy John Brassil. He has 20 minutes which he will share with Deputies Scanlon, Ó Cuív and O'Loughlin.

Deputy John Brassil

I thank Sinn Féin for this motion and I thank the Minister for his very positive response. This was a specific proposal Fianna Fáil had in its manifesto and I am quite sure it was part of the manifestos of all the main parties. I am glad that for once we can stand here as a group to deliver on a commitment we made to one of the most vulnerable sections of our society.

Access to a medical card for children who have a serious illness or condition is a fundamental requirement and is important to the families. I welcome to the Gallery tonight the group from Our Children's Health and parents of children who have disabilities. While welcoming the good news I hope in future that basic fundamental requirements such as this could happen without the need for sustained campaigns from groups, families and political parties, when it is blatantly obvious that it should have been done a long time ago. The parents work so hard in dealing with their children who have disabilities and their time would be far better spent looking after their loved ones rather than campaigning on such difficult issues. I hope it is a lesson for us all.

With regard to other issues affecting children with profound disabilities, it is concerning that when those children become adults the level of care and available budget are just not sufficient. I met a mother last weekend in my clinic. She has a 19 year old son with a severe and profound disability. Before he turned 18 years of age he had received respite care once a week. This service stopped as soon as he turned 18. There was no adult respite care available. Unfortunately his mother became exceptionally unwell last year and at one stage was at death's door. She was advised to spend at least two months recuperating. After nine days in hospital she had to return home to assist her husband in looking after their 19 year old son because they could not get respite care. Perhaps the Minister of State, Deputy Finian McGrath, and the Minister for Health, Deputy Harris, would ring-fence specific funding to assist young adults and people with profound disabilities to get respite care. It is an important call as an additional support to help these people.

Cancer patients could also benefit from automatic medical cards. This year some 30,000 people will hear the words "You have cancer". Once a patient is diagnosed, his or her life changes beyond belief and the last thing that person needs is to go through the arduous process of applying for a medical card. Once a consultant confirms that a patient has cancer, a letter presented to the HSE should automatically entitle that person to a medical card for at least 12 months. During that intervening period any paperwork that is necessary can then be put together. As a practising pharmacist who deals with patients daily, I assure the House that once cancer patients are diagnosed, they need to concentrate all their time and effort on getting better. They can get better, but having to worry about the costs of medication and GP visits and so on is something they should not be burdened with. As the Minister is aware, once a person is diagnosed with cancer his or her ability to work and earn changes fundamentally. An automatic medical card would go a long way towards easing the burden and towards helping the patients recover.

If we are to bring these fundamental changes to our medical card system, general practitioners are the one key group we must bring with us in this process. While we would all love a universal GP system with visits free for everybody - we will work towards that - it is not going to happen overnight. The process is going to happen over years. However, for the 10,000 people the Minister is bringing on board this evening, and for the cancer patients whom I hope the Minister will also look to bringing in to automatic eligibility in the near future, we also need the GPs to be properly resourced and fully supportive of our proposals so they can carry out their work. Many well qualified doctors are leaving the State because the necessary supports to allow them to practice and carry out their business professionally do not exist. Rural areas are losing GPs on a regular basis because of lack of supports. I urge the Minister to consider, in working towards universal GP care, that we bring this important group with us and that every decision we make is made in consultation and in agreement with them.

It is really good news to hear that the domiciliary care allowance recipients will avail of the cards easily and seamlessly. It is a welcome measure and we can be proud of it. I welcome the Minister's commitment to making this happen quickly. I also welcome the Sinn Féin motion in allowing Deputies to discuss the matter in the House. For once we can be proud of the commitments that have been made in the Chamber and that we, as a political body, have kept them and can stand over them.

An Leas-Cheann Comhairle

I invite Deputy Eamon Scanlon to speak and I ask him to note that there is over 30 minutes remaining for the three speakers.

Deputy Eamon Scanlon

I welcome the opportunity to speak on this motion. Fianna Fáil fully supports the Sinn Féin proposal to ensure the provision of a full medical card for every child in receipt of domiciliary care allowance. During the last Dáil this party was to the forefront in highlighting the Government's targeting of people on discretionary medical cards before the election.

We committed to ensuring a medical card for all children whose carer was in receipt of domiciliary care allowance. The Fine Gael and Labour Party Government promised people with disabilities that they would be the Government's No. 1 social justice priority. I am glad to say the Minister has tonight confirmed that that is the case.

It is truly regrettable that thousands of families had their medical cards withdrawn, causing untold misery and hardship. They were families who had assumed they would always receive that care. I recall many children with serious medical needs who required substantial daily care having their discretionary medical cards revoked. For two years the then Government denied that there was a deliberate policy to cut the number of discretionary medical cards. There are approximately 10,000 children who, I believe, thanks to the announcement made tonight, will receive a medical card which they truly deserve. The Minister’s announcement of the allocation of €20 million is welcome and I ask that the money be made available immediately, without having to wait for the budget which will be announced near the end of the year. The money should be made available now to take the burden off these families.

The campaign group Our Children’s Health established in 2014 by Mr. Kevin Shortall and Mr. Peter Fitzpatrick must be commended for its tireless campaigning for better access to medical cards for sick children. It remains imperative that we establish a flexible assessment regime for discretionary medical cards in order that the financial burden people with a serious illness or disabilities are forced to endure will be lifted. Fianna Fáil made it a provision in the confidence and supply agreement with Fine Gael that the more humane system for discretionary medical cards it had suggested in the run-up to the general election be fully maintained. Fianna Fáil does not believe in a two-tier health system. We are committed to creating a more inclusive society and dismantling barriers that prevent people with disabilities from participating in society.

Deputy Joe O'Reilly mentioned C-PAP machines. I have been using one of them for the past 15 years. I hired it initially for €70 a week. After seven or eight months I bought it at a cost of approximately €1,600. The Department of Health is paying €86 a month to lease one of these machines, which works out at nearly €1,100 a year. Approximately five weeks ago I purchased a new machine with a mask for €750. The machines have come down in price and are available. I suggest to the Government - I am glad that an official is present - that it is being ripped off in leasing these machines. What was costing €1,070 to lease or rent can be bought for €750. Anyone who needs one of these machines really needs it. I would not be here tonight but for it. They are crucial to those who need them. This issue should be examined because I imagine millions of euro is being lost as a result of what is happening.

Deputy Éamon Ó Cuív

I, too, welcome the motion and the fact that the Government has accepted it. As well as the obvious benefit for those in receipt of domiciliary care allowance who will receive the medical card automatically, the other great advantage is that it eliminates the unnecessary hassle of filling in forms, with a vast amount of paperwork attached, particularly where a person is trying to prove not only medical expenses have been incurred in treating a medical condition but also ancillary expenses. Many of those applying for medical cards do not realise that, for example, the cost of travelling from a rural part of Ireland to Dublin and staying overnight is a legitimate expense they can include when making their case for a medical card. I welcome anything that simplifies life.

There are other groups who do not necessarily receive domiciliary care allowance but who are clearly identified as having young people with medical conditions. The Minister should consider extending it to such categories as quickly as possible and obviating the necessity to make a case.

During the term of the last Government I knew of a young person who, on our first meeting, I thought was six or seven years of age but who was actually 14 or 15 and suffering from a rare genetic disorder. It took us a year to obtain a medical card. The first battle we had to fight was to retain the medical card held until a decision was made. It then went to appeal and went on and on. The parents had a modest middle income. The child needed care 24 hours a day, seven days a week, and a medical card was being held back at a time when children in the whole of their health were being given free general practitioner, GP, cards.

I live in a world where finance will always be finite. Some people seem to live in a parallel universe where there is unlimited finance and no choices to be made. I have disagreed with the Government’s policy of trying to give GP cards to everybody in the country and not giving full medical cards to those who really need them. We have our priorities upside down, given that very wealthy people are going to wind up with GP cards, while people who endure huge hardship cannot get their hands on a full medical card. As the Ministers of State opposite know from their time on this side of the House, many ancillary issues arise in not having a medical card.

Another practical point concerns the interminable reviews of the circumstances of people with discretionary medical cards or old people. How many old people, over the age of 66 years, does the Minister of State know whose incomes go up after they turn 66 years, unless they win the lotto? Is it worthwhile hassling them with forms and worry, year after year while carrying out these reviews?

Another habit of the Health Service Executive, HSE, is that when a person applies, it writes back looking for some information. There might be a delay in obtaining that information because the person might not understand what is required, or there are family circumstances and the HSE cancels the application, instead of holding it. The person concerned then has to reapply, receive the documentation again and new forms and fill them in again. That is lunacy, bureaucracy gone mad and totally unfeeling. I have had to table parliamentary questions to try to get a medical card application held over while going through this ridiculous process, when the HSE already had the information, to obtain the ancillary information required. I knew of a case where the information was not provided because the people in charge of the medical card section had not even asked for it.

Another simple case will show how crazy the system is. Somebody who lives 60 miles to the west of Galway city came to see me in the past few days. The person concerned has to travel into the city for dialysis and seeks transport in and out. The sensible thing to do is to arrange the outpatient appointment for the same day, but the taxi for dialysis patients leaves before outpatients are seen to. The people concerned have been told there is no financial support available. They cannot drive having been on dialysis. Their spouses cannot drive and they have to get by some miracle from Galway to the western tip of Connemara, Ballyconneely, at their own expense. Is that a humane system? That is common throughout the country and every Deputy can tell the Minister of State about such cases. The amount of money involved in these real hardship cases is very small. We need practicality, common sense and discretion to be brought back into the system.

Deputy Fiona O'Loughlin

I am very happy to see all-party consensus on this very important issue. I am glad to be a Member of an Oireachtas where all Members of the House are giving this issue such priority.

Domiciliary care allowance is defined as a monthly payment made by the Department of Social Protection to the carer of a child with a disability so severe that the child requires care and attention substantially in excess of another child of the same age to allow the child to deal with the activities of daily living. Surely this definition says it all. We are speaking about children with severe disabilities where a member of the family cannot go out to work because there is a requirement for the child to receive extra care and attention.

It should be a given that all of our children are cherished equally and equitably, but that is not the case. Surely those who are most vulnerable and have been identified as such by virtue of being given this allowance should not have to engage in another battle for a medical card. At this point, 10,000 children are affected by that to which I refer.

It must be recognised that families with children who receive domiciliary care allowance are apprehensive about the future and the State support, something I am happy is being acknowledged today. Families have felt the effects of the economic downturn, with rising prices across household budgets, leading to increased fuel and food costs and rising transport and school costs, as well as the introduction of the household charge and USC, to name but a few. However, families who have children with disabilities are feeling the squeeze even more, with research showing that they are more likely to be living in poverty than other families. In addition, it has been estimated to cost three times as much to raise a child with a disability than to raise a child who has no health problems.

It is clear that any family entitled to domiciliary care allowance for a child should automatically be entitled to a medical card. It is now accepted that for all children early intervention in order to develop their potential is not only humane and compassionate, but has real economic benefits for society. This allowance is designed to enable those children with substantial disabilities for whom normal family care and mainstream services do not suffice to develop their potential and to experience, as closely as possible, the benefits of normal family life.

Children who should qualify for domiciliary care allowance, therefore, have disabilities or conditions that, given the services available to them at their age, location and family circumstances, require extraordinary parental input and additional expenditure if they are to develop as they should. Some children have a diagnosis or condition that will require costly and ongoing care into their adult years. They should receive this allowance without the unnecessary burden of having to undergo lengthy procedures to qualify for a medical card. Often, children have to have medical appointments and parents are advised to get additional medical reports. This should not be an extra burden, financially or otherwise. The long drawn-out process for approval of domiciliary care allowance has implications in assessing eligibility for carer's allowance and the respite care grant. The parents of these children often face additional costs. The assessment process needs to be flexible in order to capture all areas of need. It should not just include a child's diagnosis. Rather, it should also consider the level of care and support needs as well as additional financial and emotional costs. The household income of a family should not be reduced because a child has been diagnosed with a disability. Domiciliary care allowance should help families to offset the financial and emotional costs relating to a disability.

Deputy Alan Kelly

I congratulate the Deputy on putting forward the motion. Everyone in the House is quite supportive of recognising the burden that so many families have had to undergo in terms of getting medical cards and the stress that has been caused to them by the process they have had to go through over a number of years. The fundamental underlying question in the motion is whether children with severe life-limiting disabilities or, unfortunately, in some cases terminal illnesses have the right to a medical card. The fundamental and unequivocal answer to that is "Yes".

I want to acknowledge the response of the Minister to the motion, the statement in the programme for Government and the clarification that has been given on extending the entitlement to medical cards for all children in receipt of domiciliary care allowance in the forthcoming budget. I acknowledge that 11,000 or so children will benefit from this initiative and it will certainly ease the minds of many parents and carers across Ireland who struggle to cope with the day-to-day costs of caring for a loved one with a disability.

I ask the Ministers present to clarify their intentions as regards the timeline for legislation. The House will, I presume, automatically pass any legislation. Therefore, there is no reason we not cannot pass it in advance so that we will not have to wait until later this year or early in the new year and payments can kick in as soon as possible once the budget has been passed. Legislation can include a timeline so that it automatically comes into force subsequent to the House passing the budget. That has been done before. The Minister might consider that. It is something that everyone in the House would probably welcome.

A number of issues have been raised. In the limited time available, I want to speak about them. Domiciliary care allowance is a vital resource for disabled children, their carers and their families. It is incredible that people in receipt of the allowance were not automatically entitled to medical cards without first undergoing a full household financial audit by way of the famous means test. I am glad the Minister spoke earlier about visiting a medical card unit. I am, like some other Deputies, a member of the Committee on the Future of Healthcare. It would be a good move for a number of us to visit such a unit, perhaps with a Minister, and discuss some of the issues that all of us in the House across the political spectrum face in terms of the onerous tolls on families engaged in the medical card applications process. In many cases, they have to repeatedly fill out forms. I do not blame the officials who are at dealing with the applications process. They work within the rules. Given the political process, we can pass on information to the medical card unit based on our direct experience and this could help the process.

Medical cards are a necessity for children who have disabilities as they allow parents to access publicly run health services free of charge. Their value is incredible to those families. I want to acknowledge the Our Children's Health campaign for the fantastic work it has done to highlight the difficulties in the medical card applications process. Everyone has learned a lot from the work it has done and the many horror stories it has highlighted in terms of the issues families face every day.

Greater flexibility must be shown in the provision of medical cards where there is an obvious long-term medical need on the part of the applicant. A strong ethical governance framework should direct all policy in this area. People should never have to live in fear of their medical cards being withdrawn as a result of a change in financial circumstances, particularly because those with disabilities understand that their circumstances will never change. The exclusive focus on financial hardship in the medical card application process is something that has to change. We must begin to move towards a system that takes a more compassionate and humanitarian approach to how we service the needs of those with severe disabilities. We discussed the Keane report, which examined whether eligibility for medical cards could be based on a list of certain conditions. We all know the outcome of that report. However, it is important that we continually assess the outcomes so that we can offer greater compassion and flexibility to ensure that people who need medical cards get them.

The motion also notes the Department of Social Protection's domiciliary care allowance assessment programme is an example of what a new, changed or tweaked medical card eligibility test could be based on. I concur that this process is much improved from the standard medical card application process as it prioritises the needs of disabled children first rather than the financial circumstances of their households.

We must remember that when we are allocating defined resources, in particular to those with disabilities, we are not just dealing with statistics. Rather, we are having a major impact on the lives of people who face significant obstacles which the rest of us would struggle to understand in our day-to-day lives.

We must, therefore, be cognisant, first and foremost, of the needs of people with disabilities and how we can best provide for their additional requirements in a way which treats them as equal participants in society, rather than just faceless applicants in an overly bureaucratic process, which we are all collectively trying to change. The current medical card application system provides insufficient flexibility in particular for the needs of those with severe disabilities who face a financial means test. We in the Labour Party, and Members collectively across the House, would argue that the economic status of a household should never prevent children in need, in particular, from availing of services to which they should be entitled as a right.

It is with all that in mind that the Labour Party will support the motion. We are delighted that everyone in the House supports the motion and that the Government is accepting it. I note what the Minister said earlier but I stress to both Ministers of State who are present that this was a commitment in the programme for Government. We now have a motion that is supported by all parties and all Members in this House. It would be another welcome step in the right direction for the Minister to outline at the conclusion of the debate the timeline for putting the change in place and if it can be done in advance of the budget. That has been done previously with a post date to the budget timeframe so that once the budget is passed by this House - I hope the budget is passed by this House - that the measure will kick in straight away. That would be a very positive endeavour. The House would welcome it very much if the Minister could come back with such news.

Deputy Gino Kenny

I will probably need a quarter of the time available to me. As the saying goes, less is more. I welcome this Private Members’ motion on the domiciliary care allowance and easier access to a medical card not based on financial circumstances, but on medical need. The hardship of an acute medical prognosis, which is then questioned and audited by unnecessary bureaucracy, leads to undue hardship.

I welcome the Government’s commitment to extend entitlement to a medical card to all children in receipt of the domiciliary care allowance in this year’s budget. I hope the day will arrive when all health care, regardless of income, is universal. Perhaps one day medical cards will be a thing of the past. Public health and access to public health services should be based not on an audit of one’s income, but on one’s health requirements. When one’s child or family member is very sick, one would do anything to make the pain go away. The added stress of having to justify and jump through legal hoops and bureaucracy to get something to which one’s child is entitled does not have a place in a society that calls itself “civil”. Begging and entitlement has no place in the health care system. Compassion and discretion do not have a price tag.

Deputy Thomas Pringle

I wish to share time with Deputy Joan Collins.

An Leas-Cheann Comhairle

Is that agreed? Agreed.

Deputy Thomas Pringle

I fully support the motion. It is laudable that the Minister has accepted it. It is very welcome that he has because it makes perfect sense and there is no reason for any Government to reject it. Perhaps it is a sign of new politics because if this motion had come before the House prior to February of this year, it would have been rejected out of hand by the previous Government and it would have been voted down. The fact that 11,000 children will now automatically get a medical card is very welcome. It is a great relief to the families of those children who have a lot to contend with and many difficulties in their way. The State should not compound the difficulties such families have to deal with and it will be a great relief to them for their children to automatically get a medical card. In many cases the parents are not looking for a medical card for themselves but in order to have their child’s needs looked after. Parents put their own lives on hold to ensure their child can have the best life possible and anything the State can do to facilitate that must be welcomed.

It is a pity we must wait for legislation, as Deputy Kelly outlined. The Primary Care Reimbursement Service, PCRS, could start to roll out the process now or the Government could bring legislation if it is necessary through the Houses as a matter of urgency given that it was a commitment in the programme for Government. I do not imagine the legislation would need to be complicated in order to bring about the desired result. Surely it could have been prepared and made ready in the ten weeks in which the Government has been in place.

The only problem I had with the motion was the proposal that the domiciliary care assessment would be used as a model for medical card assessment. I am pleased the Government has not accepted that aspect of the motion because it would have led to its own difficulties. In the previous Dáil, Private Members’ motions were tabled about the assessment process for domiciliary care allowance and the difficulties parents had accessing that allowance in the first place.

When one has been around this House for a long time, one might become a bit cynical. I am afraid the domiciliary care application process might become more difficult in the future. I hope that is not the case but I fear that it might, given that getting it will in future automatically mean the family will be entitled to carer’s allowance and a medical card. I hope that does not happen and that further motions on the issue are not tabled in the future on difficulties in getting the domiciliary care allowance itself.

Changes should be made to tweak the medical card application process and make it more responsive to people’s needs. All Members have people come to see them in their constituency offices who are applying for a medical card. We know right well they will not pass the means test, yet they have to go through the process even though they have medical conditions that would justify getting a medical card. They must go the entire way through the means assessment process and fail it in order to get to the point where their medical conditions are assessed. It would be a worthwhile change if the system allowed for the means test to be bypassed so that people could go straight to having their medical needs assessed.

Much of the discretion has been removed from the PCRS. In recent weeks, I am aware of a constituent who was refused a medical card because he was 19 cent over the limit on the means test assessment. In recent years if someone was up to €20 over the limit, he or she would have still been awarded a medical card. It is a disgrace that someone would be refused a medical card for the sake of being 19 cent over the limit. It might be a blip in the system but it happened and that should not continue.

Deputy Joan Collins

I am delighted to support the motion. I am very pleased the Minister has responded in a positive manner to this Private Members’ motion. I welcome the fact that Sinn Féin opened up the motion for others to sign it. That is a reflection of the general support in this House, in particular from the Opposition in recent years, for progressing such issues. I fully support the parents who are in the Gallery tonight in their call on the Government to accept the motion and to put the necessary measures in place.

The situation in this regard is another example of the dysfunctional nature of the health service. Some day we will get a Government which will dismantle our unfair, unequal, two-tier health service and introduce free health care as a universal benefit for all, paid for by progressive taxation. I am a member of the Committee on the Future of Healthcare. I hope we will progress the issue of free health care in the committee.

It defies description that a child suffering from a serious illness or long-term congenital condition is not automatically entitled to free health care. It also defies description that a family caring for such a child must undergo a complex means test in order to obtain a discretionary medical card. The test is crude and outdated. The changes to the test in 2013 represented a cruel austerity cut. It meant that repayments on a home loan were no longer taken into account and a previous standard travel allowance of €50 a week could no longer be taken into account. That forced many parents to apply for discretionary medical cards, which put those families at the mercy of the State and allowed it to decide if undue hardship was placed on the family due to the illness or disability of a child. What a horribly bureaucratic term that is, undue hardship. It would not be out of place in a Victorian workhouse.

The Keane report recommended the development of a more compassionate medical card system to accommodate those with significant illnesses or disabilities. I am pleased that we are moving to that point. Given that the programme for Government gives a specific commitment to extend the entitlement to a medical card to children in receipt of domiciliary care allowance, it should accept and act on this motion.

Again, when does the Minister think he can get that legislation through? Could it be worked on during the summer months and brought in quite quickly when we come back to the Dáil?

I want to raise one other point before I finish. An issue came up recently in my constituency office of a cancer patient who had the words "incurable cancer" as the description of her medical illness. The word "terminal" was not used because the consultant did not consider that it was an immediately terminal illness, although it was an incurable cancer, and the medical card was refused on that basis. It just shows that these are the issues that we must consider regarding medical cards. One should not have to write "terminal," if an illness is not terminal but incurable, to get a medical card. That kind of broader look at the whole medical card system, as has been said by Deputy Pringle, should be considered as well.

Deputy Mattie McGrath

Deputy Danny Healy-Rae also wants to contribute, but if he does not come in, I will do the best I can. I am glad that this motion was tabled but I am even more pleased that the Government has accepted it. It is a sign of new politics. People may scoff and laugh at the new workings of the new Dáil, but this is practical proof, and it is not the first time in recent weeks that it has happened.

As someone who sat through all the talks on the formation of a government for so many days, I was delighted that the Minister of State, Deputy Finian McGrath, my namesake - I know he has just left - was appointed. He was very passionate at those talks about issues to the fore, especially in areas such as this. I congratulate him and Deputy Corcoran Kennedy on their promotions to Ministers of State at the Department of Health, as I know how passionately they both feel about health issues. The Minister of State, Deputy Corcoran Kennedy, will forgive me if I talk about Deputy McGrath, but he was present at the talks and lobbied very hard, and this issue was included in the programme for Government. Action on this issue cannot happen fast enough. Sinn Féin obviously feels this way, as we all do, but Rome was not built in a day, and tosach maith leath na hoibre.

There should not be any question about domiciliary care allowance once one goes through the arduous process to get the allowance for the sickest of children and in the most traumatic of cases. I am involved with a number of organisations, such as the Jack & Jill Children's Foundation, Every Life Counts and One Day More. These are powerful, wonderful organisations that have done Trojan work and supported and given testimony to the reasons these special children must be nurtured, brought into the world and looked after. The State should not make it any more difficult or arduous for the families involved. The cruel terminologies must be removed from the discourse and the granting of the allowance should be automatic. I know a former Minister at some stage agreed something similar in a motion similar to this one. It is very important.

The fact that 11,000 special children, as I like to call them - very special children - will automatically receive this allowance is a good step, one that we should not have to boast about or fight for, but one that we should celebrate in 2016, the 100th anniversary of 1916. Something should be readily available to these children. I believe it will come, and it will work to the advantage of the families.

We must make a separation here, get a different ideological outlook and set the medical card apart from the domiciliary care allowance. Assessments of eligibility for medical cards are based on family income. A sick and special child should not be depending on this. There are extra burdens on such families. They love caring for their children and they step up to the plate, but the assessment should not be done in this way. The assessment should be based on the needs of the sick children who need those special medications and supports to live as best a life as they can with the disability they have, whether life-limiting or not and whether terminal or not. If a person becomes unemployed, he or she gets a medical card, and rightly so, for the whole family, but when a sick child needs a medical card, it should not be assessed based on the needs or the income of the parents, the household income or anything to do with the rest of the family. We must have clarity on that area and work and strive towards such an approach.

There is also the issue of the terminology used and the questions asked about reviews and medical cards. We have heard such issues recounted here. We heard of a case not so long ago in which the parents of a child with Down's syndrome were asked if her condition had improved. There is no room for such language to be used by officials in the medical card section of the HSE. They should understand that it is very hurtful, very silly and downright contemptuous of the people involved. As I said, for people with medical cards, cancer patients, the sickest of people trying to access the system, it is too onerous and arduous. I certainly hope that when these 11,000 people automatically get medical cards, they will not make the domiciliary care allowance any more difficult for the children who need it.

I salute the work of the Jack and Jill Children's Foundation, especially Jonathan Irwin, its CEO, for what it does for sick children and the continuous work its nurses provide and the hours they give.

As I said, I wish the two Ministers of State very well in their promotions and look forward to working with them on many other issues across the floor. I hope that issues will be taken and dealt with. Sensible motions were not tabled heretofore, during the terms of past Governments, but they are being tabled now because of the new situation here, and it is a welcome development.

Deputy Danny Healy-Rae

Each and every one of us knows that health is paramount to families, especially to parents who have children. Unfortunately, however, some parents have a heavy cost to bear and unfair burdens when their children become ill and may be ill for many months or many years. Maybe some of them will never get back to full health. When they look for domiciliary care allowance, to which they are entitled, I feel they have to wait much too long. I have had a case in recent times that has been going on for months now - since April - and we are told that maybe we will have an answer by the end of August. To give Deputies a small bit of an insight into the background of the case, it concerns a child who is about seven years old, one of a family of five, whose bowel and colon were removed. She has a bag and may have it until she becomes an adult, although hopefully it will be removed then and replaced with a more acceptable system for keeping her alive. In the meantime, however, the family applied for domiciliary care allowance last April and will be waiting at least until the end of August. I feel, as I suppose do all Members here and county councillors around the country, that a six-month wait is not good enough.

It must be about staff. I do not think any staff in any Department would hoard an application like this, but there are not enough staff to vet these cases. It is the same with the carer's allowance. I know Deputy Mattie McGrath and others have made the case about the medical card but I am glad of this opportunity to highlight the need to speed up domiciliary care allowances for children. A sick child is a serious burden to carry for parents and in the case I have mentioned it may be for the rest of her life. I ask the Government to do something and to staff these places to ensure that a speedier outcome is available to those parents who apply for domiciliary care allowance.

Deputy John Brady

First, I welcome members of Our Children's Health to the Visitors Gallery. They are very welcome, but to me it defies logic that any parent should have to go out and mobilise and organise a campaign group or sit in a public gallery at 10.10 p.m. on a Tuesday evening in the hope that their national legislators will do the right thing. Members of this group represent so many families right across the State looking in here this evening, but there is no legitimate reason for any Deputy in this Chamber to vote against giving a child who is sick a full medical card.

I have heard a number of announcements on this but there has been no action to implement it. In the most recent announcement, coming last week on foot of Sinn Féin tabling this motion, the Minister, Deputy Harris, said it would be implemented next year. However, next year is simply not good enough for many families, including children. These sick children need medical cards now, not next year. There are no excuses whatsoever. Sinn Féin has brought forward legislation which is in place, prepared and ready to go. Its implementation is all that is needed now. Unfortunately, the Minister, Deputy Harris, failed to give us a date when that legislation could be in place.

I do not agree with the Labour Party too often, but I agree with Deputy Alan Kelly that there is no reason that legislation cannot be put through now. I ask the Ministers of State present to provide us with a date when this legislation can be put through. The Government can rush through legislation when it suits it, be it the financial emergency legislation, property tax, water charges or a law to tackle head-shops. It has been done. If providing sick children with a medical card was a priority it could be done, too.

This is about political priorities and choices. The cost of doing this is a mere €9 million, which pales in comparison to the €14 million spent on ministerial transport costs from 2011 to 2014, or the €700 million spent on Irish Water. It comes down to political choices. Seriously ill children should never be left waiting for medical cards. Parents have to fight the system to get a medical card for their sick children, to which they are rightly entitled. This puts unnecessary pressures on parents. Those with disabilities have suffered hugely under the Government's austerity agenda - scrapping the mobility allowance, halving housing adaptation grants, cutting disability allowance and increasing prescription charges. The list goes on and on.

Not only is there a fight for medical cards in the first place but there is also a fight to get a medical card back when it has been taken from a child. In 2014, the Coyle family from my own constituency of Wicklow, had to go on national television to state their case before any notice was taken of their actual situation. Their child, Alexander, was the first person in Ireland to be diagnosed with Mowat Wilson syndrome, a profound intellectual and physical disability which brings life-threatening problems and seizures. Expenses include syringes and medication, nappies and other equipment, the cost of which exceeds €1,100 per month. Yet his medical card was taken away from him. At the time, Alexander's mother told how she had been forced to sterilise and re-use syringes which were meant for one use only.

This is not news to the Minister for Health, Deputy Harris, who has left the Chamber. He comes from the same constituency as Alexander. Yet, the Minister has no problem in telling us that we will have to wait for the implementation of this legislation. The Coyle family's position is replicated for so many families across the State who find themselves in similar situations. This Government is so far removed from the realities faced by so many families and the fact that we have to push for something such as this, proves it. Parents should not have to go on television to get a medical card for their sick child, nor should they have to battle with the system to get one when it is so desperately needed.

If we are all in agreement that sick children are entitled to a medical card, then we should see emergency legislation go through the Oireachtas now. It has been done before and it can be done again. It is a political choice.

This motion provides an opportunity for Fianna Fáil and Fine Gael to give something back to the cohort of people they have taken so much from. I hope this opportunity will not be not wasted.

Deputy Kathleen Funchion

Go raibh maith agat, a Leas-Cheann Comhairle. Comhghairdeas in your new role.

One of the key issues in my constituency of Carlow-Kilkenny is that of the domiciliary care allowance, DCA. Parents struggle to apply for and obtain the allowance, while there is the added pressure of not automatically getting a medical card.

I commend the work of parents who fight daily for their children and, in particular, a group called the DCA warriors who do fantastic work. They are an extraordinary group of people who fight tirelessly for parents in need of State support for children with severe illness or disabilities. However, the fact that this group is in existence, and is so heavily relied upon, is shameful.

Adding extra pressure on parents to wade through streams of paper and bureaucracy in order to prove their child or children's challenge or disability is inhumane and wrong. We should be creating a society that puts children and their needs first - a society that protects those children most in need. By supporting this Bill the Government would be sending a message that those children are a priority.

The messy delays that exist at the moment are playing havoc with children's lives. Unnecessary delays are an abuse of those children's rights to equal treatment in health and development. At the very least a medical card should come as an immediate right if one qualifies for the domiciliary care allowance. Immediately extending the medical card to children in receipt of the domiciliary care allowance would ensure that critically ill children who need urgent medical treatment, would get it.

In this centenary year, the words of our Proclamation are being repeatedly echoed across the country. Children have been learning about the meaning of those words in our schools as part of our centenary celebrations. The Proclamation "declares its resolve to pursue the happiness and prosperity of the whole nation and of all its parts, cherishing all the children of the nation equally." This is not the reality for so many children affected by the unjust system currently in place, however.

We need urgently to introduce and implement a schedule for the extension of full medical cards to people with serious illness and disabilities, without a means test and immune from changes to household finances.

I welcome the fact the Minister has said he is supportive of this legislation, but we need to see a timeframe and a date for rolling it out. Actions speak louder than words and if the Government is serious about this issue it is important not to pay lip service to it but to provide a timeframe for its implementation. It is the least that these parents and children deserve. It is difficult enough for families faced with a situation whereby their child or children might have a serious illness or disability, but it is humiliating for them to go into detail when completing the domiciliary care allowance application forms. In addition, they must go through the process again when applying for medical cards.

In this day and age, we should put a stop to that process. We need to see a date from the Minister also. While I appreciate his comment that this legislation is welcome, we do need to learn when such a Bill will be passed. I hope the Ministers of State will comment on that in their concluding remarks.

Minister of State at the Department of Health (Deputy Marcella Corcoran Kennedy)

I welcome this opportunity to address the House on the Government's commitment to extend medical card provision to all children in receipt of the domiciliary care allowance, DCA, as we set out in our agreed programme for a partnership Government.

I have listened carefully to the contributions of Deputies from all the various groupings. It is clear that the cross-party agreement that we have heard this evening shows that no individual or party has a monopoly on caring about the people of this country, and especially the young people and their families we are discussing here this evening.

Like many of my fellow public representatives, I have been struck by the practical challenges that parents face in meeting the needs of their children with a severe disability. Over the years, I have engaged closely with constituents, neighbours, with the Irish Wheelchair Association in my own county, the Carers' Association, and Laois-Offaly Families for Autism. I am well aware of the difficulties and challenges that parents are experiencing.

I also want to welcome Our Children's help group who have joined us in the Visitors Gallery.

As outlined earlier by the Minister for Health, there are good reasons for this Government commitment. Approximately one third of children in receipt of the domiciliary care allowance do not hold a medical card. Therefore, approximately 11,000 more children with a severe disability would qualify for a medical card under this new scheme. In addition, all 33,000 children in receipt of the allowance would not in future be subject to the medical card means test and approximately 30,000 families looking after a child with a severe disability would no longer be required to go through the medical card assessment process, leaving mothers and fathers to focus on doing what they do best and what they want to do, which is to provide care and support for their child.

I am convinced that the recently established committee on the future of health care, of which many Deputies here this evening are members, and which acknowledges my own specific remit of maintaining health and wellbeing, can be of great benefit to the future development of our health system. A single long-term vision for health care in Ireland, built on a cross-party or social consensus, can help to drive reform and the system over the next ten years.

I recognise that as a result of a range of improvements to the medical card scheme implemented by the HSE over the past two years it is now exercising greater discretion. This reflects how the economy has improved and that there is now funding available to ensure that people are looked after they way we all them looked after. The number of discretionary medical cards has more than doubled. There are now over 106,000 discretionary medical cards, which is the highest number of discretionary medical cards on record.

I acknowledge the difficulties that some of our citizens are experiencing including, as outlined by some Deputies earlier, discretionary medical cards being refused on the basis of a person's income exceeding the threshold by 19 cent; on the basis of whether a cancer patient is terminal or incurable; and interminable reviews in respect of applications by the elderly. These are all issues that I have come across. I know how frustrating this is for people. I will refer these matters to the HSE for consideration. In regard to the issue raised by Deputy Scanlon, I cannot understand why a decision would be made to rent equipment if it is cheaper to buy it. These are all questions that the HSE will need to answer. I know that they will be taken on board and given careful consideration. A visit by the health committee to the unit which considers medical card applications would be worthwhile.

Deputies will be aware that on foot of the Keane report, the HSE established the clinical advisory group on medical card eligibility. The objective of this group is to develop a framework for assessment and measurement of the burden of disease and appropriate operational guidelines for the medical card scheme. Membership of the group includes clinical experts from specialist services and professions, as well as patient representatives. The group is expected to complete its work and report on it in the future to the director general of the HSE.

I welcome this opportunity for Deputies to discuss this important issue that affects so many families in the country. The Government has given a clear commitment in its programme to provide medical cards to all children that qualify for the domiciliary care allowance. I am convinced that this will be a priority in the upcoming budget discussions. When the funding is in place we will aim to have the enabling legislation enacted as quickly as possible. I hope that this will reassure Deputies of the commitment of the Minister for Health, Deputy Harris, and all Ministers and the Government to deliver this scheme to the recipients of the domiciliary care allowance.

Minister of State at the Department of Health (Deputy Finian McGrath)

I welcome this opportunity to address the House today on the Government's commitment to extend medical cards to all children in receipt of the domiciliary care allowance, as outlined in our agreed programme for a partnership Government. I welcome most of the comments made tonight during this debate, some of which I will deal with later in my contribution.

This is a very important issue that affects many thousands of families throughout our country. Deputies may be aware that the domiciliary care allowance, DCA, is a monthly payment for a child with a severe disability aged under 16 years who requires ongoing care and attention substantially over and above the care and attention usually required by a child of the same age. It is administered by the Department of Social Protection in accordance with the social welfare legislation. As a parent of a daughter with an intellectual disability, I spent many years campaigning for disability rights and the domiciliary care allowance. Now, it is in the programme. That is action. I also spent many years campaigning for the restoration of the respite care grant. That was restored four weeks ago. That is action. It is important that people, when making comments, know what is going on and the difference between action and inaction. This commitment is stitched into the programme for Government.

It is important to note that the DCA is not based on disability or the medical need of a child. Under the social welfare legislation it is based on the how much additional care and attention a child needs because of a disability. There are a range of qualifying criteria in respect of eligibility for the domiciliary care allowance. These include the disability being likely to last for at least one year, that the parent is providing the care to the child, that the child resides at home and on the child meeting the medical criteria of the scheme. It is estimated that approximately 33,000 children currently qualify for the domiciliary care allowance. By comparison, approximately 390,000 children under the age of 16 years currently qualify for the medical card. I agree that when moving towards a universal health service we need to set priorities. Children that are sick and children with disabilities, and not children that are healthy, are my priority. By contrast, the medical card scheme, which is administered by the HSE in accordance with the Health Act 1970, as amended, is primarily a means based scheme. Under health legislation, medical cards are provided to persons who, in the opinion of the HSE, are unable without undue hardship to arrange GP services for themselves and their dependants. The legislation also requires the HSE to have regard to the overall financial situation of the family.

I listened to many of the comments from my colleagues in regard to the urgent need to deal with the reform of medical card system. In the assessment process, the HSE can take into account medical costs incurred by an individual a family. Where deemed appropriate, in particular circumstances, it can exercise discretion and grant a medical card even though an applicant's means exceed the relevant threshold. As a result of a range of improvements implemented by the HSE since mid-2014, the HSE is exercising greater discretion. Since then, the number of discretionary medical cards has doubled. There are now over 107,000 discretionary cards, which is the highest number of discretionary cards on record.

I share the hope of the Minister for Health that we will be able to get cross-party support for this measure. I also recognise that there are enormous demands and cost pressures on our health service. Health care continues to rise to meet the needs of our growing and ageing population, as well as the increasing incidence of chronic conditions and medical technologies and treatments.

We have secured a substantial increase in funding for the health services for 2016 but I do not underestimate the challenges involved in the delivery of a safe and efficient health service for our citizens. I welcome the attendance in the Visitors Gallery tonight of Our Children's Health group, which I have always supported and will continue to support. I am pleased that the House has discussed this important issue this evening. I am determined to prioritise this commitment as part of the upcoming discussions and to see it implemented as soon as possible after we have secured the required resources. The discussions on the Estimates will continue over the summer months.

Deputy Louise O'Reilly

I thank all Teachtaí Dála who took part in this important debate. It is important not just for us to state here that this issue is a priority, but that people outside know it is a priority for us.

We welcome that there is broad cross-party support for the motion. However, we must be cognisant of the fact that the Minister of State, Deputy Finian McGrath, has just uttered words that will strike fear into the hearts of those who have been battling in this area.

I am sure that was not his intention.

These children and their families need a date. They need to know that it will not be subject to the budgetary process and that the legislation is on its way. We have the legislation. I would not claim to be a master draughtsperson but it is very simple legislation. We have it and are more than willing to provide it. I raised this issue with the Taoiseach on the Order of Business on 31 May and his response was that legislation was not needed. It is great that the Government is acknowledging that legislation is needed and I am telling it that we have the legislation. As Deputy Kelly pointed out, it is possible to set the wheels in motion, put a date in place and ensure that we can give those families certainty so we are pressing the Ministers of State to give us a date and not to say that it will be subject to the budgetary process, the outcome of another review or a further delay because these families have been let down many times. The Minister of State, Deputy Finian McGrath, knows this because he knows children's health campaigners well. They have had many false dawns and they do not need another one. If there is cross-party support in this House, it is very simple. The legislation will sail through. The legislation is ready and enjoys cross-party support. I know we are about to rise for the recess but it is still possible for work to be done on this legislation even though we are not here. We know this and we know it can be done.

The misuse of drugs legislation will finish its passage through the House this week and will go to Áras an Uachtaráin to be signed by the President. That legislation was a priority. It was something that An Garda Síochána looked for. While we had some misgivings about it, we supported it and there was broad support in the House for it. It is on its way to Áras an Uachtaráin this week to be signed by the President. An Garda Síochána knows that if it asks for something, the Minister delivers and that is good but the Minister for Health and the Ministers of State who are here need to deliver for the families of children with severe and life-limiting conditions. It is very simple.

The Government has given the commitment, which is very welcome. It is supporting our motion and that is very welcome. The cross-party support for our motion is very welcome but the Ministers of State know that what we need is a date and some certainty. I know some families are following this debate. If they are on a discretionary medical card, they go to bed every night terrified that this medical card will be taken off them so we are going to press the Ministers of State for a date. We are going to press them to put some definable goals in place and to give certainty to those families who will go to sleep worried. We are going to press them because cases like that of baby Réiltín should not happen - not in a civilised society. I hope that because I have raised the case of baby Réiltín on the floor of the House that it might herald some action for this individual case but we cannot do that every time we have an issue like this. This is why the legislation and the certainty are needed. I have met these families, as have the Ministers of State. We know these people. They are people in our communities who come to us for help and are dealt with on an individual basis. That is not right. At at time in their lives when they least need to battle the system, it is an endless round of form filling, appeals and denials of application. That is not right. We know it is not right. There is cross-party support for our motion because we all know it is not right. We are going to press the Minister and Ministers of State to give us a date by which these families can know. It is not good enough in case anyone thinks it is to come in here and tell us that it will be subject to the budgetary process because these people have been subject to enough already.

Question put and agreed to.

The Dáil adjourned at 10.35 p.m. until 10 a.m. on Wednesday, 20 July 2016.