Dr. Niall Muldoon:

This report, Unmet Needs, is about assessment of needs, but we recently presented a report about a young girl called Molly, who was born with a serious disability and was in foster care, unable to care for herself in any format. We continuously recommended to various Departments that there is an ability to plan ahead for children like that and recognise what they will need on an ongoing basis. If children are severely or profoundly disabled, it will be known whether they will need wheelchairs or hoists, and as they get bigger or older, the parents will need different transport. All those things can be planned for. It is time to move in that direction. The HSE needs to get multi-annual budgets for such children. We fought long and hard with regard to Molly. There were more than 400 children in foster care with severe and profound disability, and the HSE and Tusla are going to work on a ring-fenced budget for that.

Last week, we presented a case regarding Jack, where we are looking for a ring-fenced budget for a child who was in hospital with severe disabilities, and stayed there for more than two years because the HSE and Tusla could not organise or agree who was going to look after the child. We now have commitments from both the Minister for Health and the Minister for Children, Disability, Equality and Integration that that ring-fenced support will be there between the two agencies. I always give the example that if the parent of a child sues the State and wins, the High Court will come up with a figure of €5 million, €6 million, €10 million or whatever it might be. We can produce that figure from the first day and say that we will allocate as it is needed and support the child, whether it is with a medical card, transport or education. We do not need to make it as difficult as we do if we plan ahead and ring-fence those budgets. It is a matter of rearranging how we plan things.

At present, we have a system from 30 or 40 years ago that has never caught up with the real world and children's rights at the centre of our system. Reducing them to their impairments allows a person to be impersonal and make decisions that just relate to the system and say that a child does not tick the box. We have to put the child at the front of every decision that public servants make, so they see the child, whether Jack, Molly, Sarah or any child in a case study in this Unmet Needs report, and make decisions accordingly. The essence of children's rights and of human rights is that decisions are made based on the needs of that individual. If a child is born with a disability, those needs are predictable. While we will not get it right all the time, if we budgets €100,000 for that child and it is not used this year, then it will roll over to next year. The parents can come and say that their car is five years old and ask for help, or that they need a new wheelchair, and we can say yes to those requests, since it is in the budget.

Those sorts of things can make life so much easier for children and their parents. There is a fallout for siblings and other members of the family as well when families have to fight and struggle for these things. It is heartbreaking for other family members to see this and to see their parents struggling to get basic needs for their child. I would say that we need to start revamping the system so that we can budget for the predictable needs and put them in place. Obviously, the members, as politicians, like to be able to adjust budgets accordingly, which is fair enough. We all work to long-term budgets and then reduce them as circumstances change. Again, the principle is established that if one is born with a disability, one is entitled to X, Y and Z and that should be a given. It can be discussed from there on in as opposed to fighting every two years, when a medical card needs to be renewed, to prove that one's child still has a short foot or still needs the use of a wheelchair. These are distressing things that do not need to be there and are not in the essence of children's rights. Perhaps I will leave my comments there.