Jillian van Turnhout (Independent) | Oireachtas source

I submitted question No. 17 on the issue of medical cards for children. Ireland is going to be examined before the UN Committee on the Rights of the Child in January 2016. The NGOs, including the Children's Rights Alliance, will come before the committee in June, along with the Ombudsman for Children and the Human Rights and Equality Commissioner. Article 24 of the UN Convention on the Rights of the Child states:

States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services.

My question referred in particular to children with life limiting or life threatening conditions. All of us are aware of the work being done by the Jack and Jill Foundation, LauraLynn and many other organisations. I meet parents who are fighting to get a medical card at a time when they should be with their children. I was particularly distressed and shamed in recent weeks after hearing about the case of nine year old Lucy, who is battling cancer. As a society we are not providing the cards that would allow parents to focus on their child. Lucy's case is illustrative but I am sure there are other such cases. Why are we not systematically upholding the right to health care of children in this situation by ensuring they are not deprived of access to treatment? I am not happy with the response to my question because I do not think we are going far enough on this issue. I hope it is not a case of waiting until Ireland goes before a UN committee before we make any progress but that is usually what happens. Instead of waiting for people from outside of the country to make us do what is right, we should just do it.

In regard to question No.18 on early supported discharge, I have raised this issue on several occasions, most recently under the committee discussions on emergency departments. Everybody seems to agree it is what needs to be done but we do not seem to have any plans to extend it. I will be following up separately on the issue with the Minister for Health.

Question No. 19 pertains to the budget for disability services. The question that arises for me is why it is not being implemented. The programme for Government proposed to allocate 5% for this area. Some 50% of the current budget in disability services goes to five organisations and 80% goes to 50 organisations. The reality is that three quarters of the current budget is being spent on services that are no longer appropriate. We are back to doing what we used to do even though we know more about what we should be doing. Everybody agreed that the situation in Aras Attracta was not on its own. We have to do much more in respect of congregated settings. The answer I received to this question was unacceptable. If it is in the programme for Government and a political priority, why are we not allocating 5% to 8% of the budget to support innovative approaches? The word "innovative" may be a misnomer because I am simply referring to bringing us to the current practice that has been developed in other countries. Why are we not creating a momentum for change so that people have the services they want? I know of one family who adapted their home but because we do not have the necessary systems, they are basically captive in the congregated setting. It is a question of dignity and equality. The best way to deal with the issue is to apportion 5% of the budget for a new way of doing things in order to create momentum over the next three years. I think we would see a huge difference. It is unacceptable to keep delaying. The closure of congregated settings was due to take place from 2018 onwards but that target will not be met unless we do something radical. It makes common sense to allocate 5% to 8% of the budget towards this. I would like a stronger commitment but I think the issue is being blocked in the HSE - I am sorry to say that to Mr. O'Brien. It is a Government priority but I think it is being actively blocked. I do not know what hold the services have, especially those which currently receive 50% of the money, but it is unacceptable. These are people's lives. I would like clear answers on this. I would prefer shorter answers rather than the cut and paste replies I have repeatedly heard on these issues.