Mary Ann O'Brien (Independent)

I am here to express the need for the Minister for Health to give an assurance that adequate home care of a minimum of eight and a half hours per week will be provided for Mr. JJ Ryan thus continuing the level of care he receives from the Jack and Jill Children's Foundation and allowing that charity to step back from this case, which should have happened when JJ turned four years old on 12 September 2011. I also ask the Minister to explain the reason there are regional discrepancies in the provision of care by the Health Service Executive for children in similar cases and the reason the Irish State still does not have a budget for paediatric home nursing care.

The key consideration that goes to the heart of this problem for the family is that the Jack and Jill care team were reminded by Mr. Pat Healy, the HSE's regional director of operations, on 21 November of this year that regarding the HSE providing a home care package, it should be noted that while the package of care for the elderly is to keep people in their own home and out of hospital and nursing homes, with children the emphasis is on ensuring that the children are provided with all the therapeutic and intervention services required while supporting the family.

I urge the Minister to help the HSE to rethink home care for children, the way it is funded and the delicate balance between keeping the child comfortable at home, particularly when the child, like JJ, is prone to infection, and giving the child access to all the therapies they require. Children like JJ need and are entitled to both.

Mr. Healy from the HSE also reminded all concerned in JJ's case that none of the disability services within the HSE are demand-led, something I find difficult to believe. It is imperative in this economic climate that all services operate within their allocation. That goes to the crux of the problem, namely, the budget allocation for paediatric home nursing care and when that will be delivered in line with the programme for Government.

JJ Ryan is from Tipperary town and was born prematurely in 2007 with a hole in his heart and chronic lung problems. A brain bleed at birth meant he also suffers from quadriplegic cerebral palsy, deafness and epilepsy, and J.J. is unable to speak.