Aideen Hayden (Labour) | Oireachtas source

I second the Government amendment. The issue before us concerns the care of children with life-limiting conditions, particularly those in end of life scenarios, and I thank my Seanad colleagues for bringing this matter before us. I thank the Jack and Jill Children's Foundation and the Irish Hospice Foundation, which have played a major role in highlighting the needs of children with life-limiting conditions, particularly children who are approaching the end of life. No one in this Chamber is unaware of the grief felt by a parent who has lost a child or who does not understand the fear we all face as parents of losing a child. When my children were small, I would go into their bedroom at night just to hear them breathing and make sure they were still alive. I know the anxiety of parents facing life with a child who is terminally ill, when they fear any local children getting the measles, flu or a temperature.

We are being asked today, however, to decide if what we do is good enough for children who face the end of life. This is not about the Jack and Jill Children's Foundation or the Irish Hospice Foundation, but about what our national health system is doing to support parents and children with life-limiting conditions. One of the difficulties I have is with the NGO model is knowing where the charitable model ends and State responsibility begins. I note in the background documentation I obtained for this debate that families supported by the Jack and Jill Children's Foundation were worried about what would happen to their support structure once their children reached four years of age and beyond. Children with life-threatening illnesses do not cease to have those needs when they go beyond four, seven, eight or even 17 years.

While we can recognise the contribution of a particular group, this issue goes beyond children with severe disabilities and extends to children with cancer and other long-term acute illnesses. In reality what has happened here is that the NGO has stepped into the breach and done what the health system should have been doing with little State support when overall costs are taken into account. The Jack and Jill Children's Foundation raised ¤35 million in charitable donations as against ¤4.5 million it received from the HSE since 1997. As Senator van Turnhout said, in the implementation of Government policy on palliative care for children with life-limiting conditions, phase one calls for the appointment of a children's palliative care consultant and eight outreach nurses to support care at home, of which the cost of the consultant post is to be fully funded for five years and five of the nursing positions for three years by the Irish Hospice Foundation. The HSE is to fund only three of the nursing positions. It is clear that while official documents talk about a spirit of partnership, public generosity allows the State to abdicate its obligations.

One may argue about the methodologies but the reality is clear. It is far better for a child to be cared for in his or her own home for as long as possible in most circumstances. The evidence also is clear that it is cheaper for the public purse. For example, the report published in 2010, There?s No Place Like Home ? A Cost and Outcomes Analysis of Alternative Models of Care for Young Children with Severe Disabilities in Ireland, estimates there is a saving to the public purse of approximately ¤120,000 if a child is cared for at home. Obviously, there is some disagreement with this figure and the HSE estimates that a service similar to that provided by the Jack and Jill Children's foundation would cost ¤23 per hour if delivered through the executive. What really is important is what is in the best interests of the child, his or her immediate family and, in particular, a group that is often forgotten, namely, the siblings.

Many NGOs save the State money and, unfortunately, that is the nature of the job. What is also unfortunate is that where an NGO has demonstrated the need for a service, the State does not act to mainstream that service, being content instead to let the voluntary effort lead the way. The role for voluntary effort is to show by example in setting up new services and exploring new ways of meeting public needs. The Irish Hospice Foundation and the Jack and Jill Children's Foundation have done this but as a society, we must go further as the charitable model is not enough. Children deserve to live and die with their families around them and this service should be fully funded through public taxation and, while I mean no disrespect by this comment, not by recycling mobile phones or drinking coffee.

I support the Government amendment because I believe a properly funded public health system is what is needed, not a piecemeal system that addresses particular needs at particular times. Again, I mean no disrespect to Senator Mary Ann O'Brien when I state that social solidarity is not helped by proposing the removal of funding from one organisation dealing with overseas funding, such as Dóchas, in favour of supporting vulnerable children. The bottom line is that services to children, vulnerable young people and all of society should be properly funded by public taxes and any support to the charitable model should be for extras, rather than for fundamentals within the system.