Louise O'Reilly (Dublin Fingal, Sinn Fein) | Oireachtas source

I welcome the parents who are watching this debate at home. They cannot be here because they are caring for their children. I also join the Minister in acknowledging the very good work done by Our Children's Health, which has fought tirelessly. I am very proud to be one of its supporters. It deserves credit for bringing this about because it was only through its hard work that the matter got the attention it deserves.

I welcome this legislation and hope we will be in a position to expedite its passage as well as ensuring the provisions of the Bill take effect as quickly as possible. This is not the first time today that the Minister and I have had a conversation about how quickly things should happen. This is one of those rare occasions when peace and unanimity will break out in this Chamber because we are all agreed that this measure is important, necessary and should be taken quickly.

Last year the House passed a Sinn Féin motion calling for all children in receipt of the domiciliary care allowance to get an automatic entitlement to a medical card. I am concerned, however, to read in the legislation and the accompanying press release that parents will not be able to use the new medical card until 1 June 2017, almost a year since that motion and further on from commitments made in manifestos. It is important that as we discuss this Bill and the welcome provision regarding medical cards we remember that for thousands of families in the State there is no respite. They have sick children who need care and access to services and they have to battle every single day for their children. They have waited a long time for this legislation. They welcomed the programme for Government commitments, the words of the Minister following the passage of the motion last year and the budget 2017 commitment but as they welcomed all of these milestones they still wait for their medical cards. Last July the Minister said:

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.

Unfortunately, however, it is not early 2017 when they will get it. The first of June is the middle of 2017. What was the delay in drafting the Bill and introducing it to the House when the money was put in place in the budget? Why is it June 2017?

It is a blot on our society that for so long we have had a system that withheld medical cards from children with severe disabilities or life-threatening or sometimes terminal conditions. It is a cruel society that perpetuates a system that tells the parents of a child with such a disability and illness that granting or continuation of a child's medical card depends on those parents jumping through a lot of bureaucratic hoops. Access to quality health care should be a right and not a concession to be granted, withheld or withdrawn by any Government, Minister or civil servant. The provision to grant children in receipt of the domiciliary care allowance a full medical card is acknowledgement of this fact. We need to end the two-tier health care system and move towards a system where every person, child, man or woman who needs health care can avail of it.

I am not alone in having sat down with families to help them work their way through the myriad forms and proof needed to apply for a medical card. Those people tell us, as legislators, to do whatever is necessary. Those 9,800 families who will benefit from this legislation can tell us at first hand that the process is both cruel and degrading.

In addition, it happens at a time when parents are least able to handle dealing with bureaucracy. When one's children are sick, one wants to be at home caring for them. The last place one wants to be is standing in a queue to photocopy one's P60 for the third, fourth, fifth or sixth time. Parents who have gone through this would advise us to forget about requiring people to get P45s, P60s, PAYE balancing statements, bank statements, evidence of mortgage payments and everything else that goes along with the current approach. When a person's illness or disability has been confirmed and a medical need has been established, the State should do everything in its power to help and support him or her. However, as the Minister knows, that has not been the case. Many hurdles are put in the way of parents of children with disabilities at the precise time when they are least able to deal with any of those hurdles.

When this House debated a Sinn Féin motion on this issue last year, I told the Minister about baby Réiltín, who was a very sick little girl. I had spoken to baby Réiltín's mother, who was facing a bureaucratic nightmare involving mountains of paperwork. I am a mother but I do not presume to have any monopoly on sympathy, experience or anything like that. After my daughter was born and when she was still small, I would not have been fit to write my own name, never mind fill out all the paperwork baby Réiltín's mother had to go through. Thankfully, she got her medical card very soon after her case was discussed here. The current system is not right. It is cruel. We need to move towards a system that shows respect, decency and compassion to people who are sick and who need to use our health service. We have to put an end to the disturbing and insensitive practice that requires people with life-limiting illnesses and permanent disabilities to respond to review after review, despite the ongoing progression of their illnesses and the reality that there will be no recovery for them. Some people with terminal illnesses cannot get medical cards. As the Minister knows, there is no such thing as recovering from a terminal illness.

The Minister might argue that my criticism of the delay in this legislation and the wait for the day when it will come into operation and parents will be able to use these medical cards is an example of the Opposition playing politics on a positive news day, but far from it. The importance of a medical card, in terms of the quality of life and quality of care given to children, cannot be fathomed by those of us who are fortunate to have good health and no caring responsibilities. The delay in bringing this long-promised proposal to fruition is having a real impact on people's lives. I remind the House that medical cards cover the cost of things like GP visits, medication and aids and appliances. It can cause grave hardship for someone to be dealt the blow that he or she, or his or her child or loved one, needs a range of aids or medicines to deal with a diagnosis. This is in addition to the difficulties associated with the illness or disability itself. These circumstances can be absolutely catastrophic for the mental well-being of those involved. It can be nearly impossible for someone who is unable to get a medical card because his or her household is on or just over the income threshold to get access to these services. The drawn-out wait for these services piles more worry and pressure on families that are already heading towards breaking point.

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 multidisciplinary support in the community. As the Minister knows from his meetings with representatives of Our Children's Health, the medical card process is torture in slow motion for worn-out parents. It involves constant form-filling and endless reviews, rejections and appeals. Although this proposal will go live in June, the parents to whom I refer would like it to be a matter of urgency tonight. Will there be any flexibility in the interim period to enable the 9,800 children involved to access the services, aids, appliances and supports that come with a medical card? In light of the stated aim and purpose of the legislation before the House, I ask the Minister to give a commitment that he will ensure these children are able to get the medical services they need while their parents wait for the official date of 1 June 2017.

What is the reason for the difference between the figure presented last year and the figure presented last week? The Minister advised us last July that 11,000 children would be affected by this Bill, but he has said today that the correct figure is 9,800. Where have the other 1,200 children and their families gone? Is it the case that having fought tooth and nail in the interim period, they have received medical cards? Has the wait been too long for some of these very sick children? I would also like to ask about the operation of the scheme. Will the Minister confirm that when parents register for the scheme online, by means of a paper-based form or otherwise, there will be no delay in issuing medical cards? There should not be any slippage between saying it in here and making it a reality for parents as they watch the postbox. Will the Minister ensure the necessary resources and personnel are in place to process these registrations as quickly as possible? He must ensure no further unnecessary ordeal is visited on these families by further bureaucracy or delays in processing their medical cards. Similarly, I urge the HSE and the Department of Health to ensure a high-profile public campaign is launched.

This legislation is welcome. We need to ensure the smooth passage of the Bill through the legislative process so that these measures can be put in place without further delay. That will be the true measure of the success of this initiative. The Minister will forgive me if I withhold my congratulations until the 9,800 children he mentioned receive their medical cards.

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