Mary Ann O'Brien (Independent)

The little boy is unable to speak. His sister is healthy and well, and he also has another little sister. There are children aged three, four and under in the home. The Jack and Jill Children's Foundation supports children from birth to four years of age. The Jack and Jill Children's Foundation is struggling to meet its commitment to the children we mind, but we cannot simply drop this child whose father also suffers from epilepsy. The Dad is a porter in a hospital in Limerick. He has to get the bus to work every day because he cannot drive due to his epilepsy. He is getting an average of four hours sleep per night because this child must be tube fed.

We have to find a way to help this child. The family is looking for eight and a half hours per week, which will cost the State approximately €300. The correspondence to date was on 23 June of this year when the Jack and Jill foundation liaison nurse wrote to a senior HSE disability public health nurse with direct responsibility for JJ, and the assistant national community care director, outlining JJ's immediate need for home support care once he reached his fourth birthday in September. The HSE provided a wholly inadequate one additional hour under the home support service, bringing the hours provided to three. On 28 September 2011, Jonathan Irwin, CEO of the Jack and Jill foundation, wrote to the HSE and put forward solutions for the situation. First, he requested that the HSE put a carer into the Ryan home who would provide respite for the family and give them a break, just as the Jack and Jill foundation carer does today. The HSE stated that this is not an option in south Tipperary. Why not? JJ's current carer, who is funded by the Jack and Jill foundation, is more than happy to sign up with any agency funded by the HSE. Second, he requested the HSE to put in a home care package. It seems that home care packages in this country are exclusively for the elderly, contradicting the HSE's own policy to provide care in the home for anyone who needs it. We know for certain that caring for people at home is much more cost effective than caring for people in hospital. Again, this appears to be a no-brainer. Third, he requested the HSE to make direct payment to the Jack and Jill foundation to continue with the current arrangement. This is the last resort option and only on the table because the foundation will not abandon this family.

On 21 November 2011, the HSE south director of operations, Pat Healy, rejected these solutions. Instead he suggested that the family consult with the Brothers of Charity to examine relocating resources already provided to JJ in a different way. This means that JJ's parents have to make a decision every day on whether he is well enough to attend the day services. This is not a workable solution.

The Jack and Jill Foundation has made a complaint on JJ's behalf to the Ombudsman for Children, Emily Logan, who has appointed an investigative team to examine JJ's case.