The desperate family of a four year old Tipperary boy with profound disabilities who has been denied care costing less than €300 a month by the HSE have made an emotional plea for help.
The Ryan family are looking for six hours of home care assistance from the HSE, care that up to now was provided to their son JJ by the charitable Jack and Jill Foundation.
JJ’s neonatologist and paediatrician has written to the HSE describing the level of work involved in caring at home for JJ as horrendous and told the HSE that “there would be very few children with the level of handicap that JJ has been left with”. He asked the HSE to give JJ the maximum recommended home care hours to enable his parents to care for his needs.
Because JJ, who suffers from quadriplegic cerebral palsy, turned four in September he is no longer eligible for the support he had received from the Jack and Jill Foundation.
His parents James and Michelle hoped the HSE would step in while the Jack and Jill foundation also expected they would.
The family and JJ’s medical team have written to Health Minister James Reilly and HSE management.
However after a series of meetings with the HSE management locally, the Ryan family and the Jack and Jill Foundation have written to the Ombudsman for Children to take on the case.
As a result of the failure of the HSE to provide the care, the Jack and Jill Foundation are still supporting the family despite not being funded to do so.
“We are not looking for a lot. This home care service is something that JJ is used to having. It is doing him a world of good and it would be tragic if he was to lose it now after all of the work that has been put in. We are only looking for the very basic,” said his distraught mother Michelle.
In a statement, the HSE said it could not comment on an individual case. The HSE said it was working closely with all service providers, including the Jack and Jill Foundation, to ensure that the provision of services “was effectively managed in these challenging times”.
JJ has two sisters, his twin Lucy and younger sister Ciara, and the family live at Scallagheen, Tipperary.His father James, who has epilepsy which prevents him from driving, works as a hotel porter in Limerick.
JJ attends Tus Maith school in Tipperary and when he comes home every day at 3pm he loves to sit in front of the television to watch Thomas the Tank.
He is able to sit up in his chair more comfortably now after Michelle was able to order a neck support on line for JJ.
“He loves watching the television but it was hard on him because his head kept falling sideways. I saw this neck support on some television programme and I felt it would make JJ’s life a lot easier. I asked the HSE for one but they said it would take six months so I went on line and I had it within ten days, and it cost a total of €150.” said Michelle.
“JJ needs twenty four hour care. He cannot do anything for himself and will never be able to do anything for himself. The Jack and Jill Foundation have been absolutely brilliant to us. Only for them I just don’t know where we would be,” said Michelle.
The home care provided by the Foundation comes to their house for two hours on three days a week. JJ is given light physio work and the home care engages and stimulates JJ during that two hours.
“It is very good for him and if we don’t keep it up he will go backwards and all the good work will have been a waste. JJ really needs this service,” said Michelle.
“We have been forced into this situation of actually begging on our hands and knees for this service. If JJ does not meet whatever criteria there is for this six hours a week help given the range of disabilities he has then this country is in a shocking state,” said Michelle.
His father James, a native of Sologhead, said that they were very disappointed with the attitude of the HSE and Minister Reilly.
“We all know that the waste in the HSE is phenomenal and they can stand over not giving JJ six hours a week that he really needs. If JJ was left in care it would cost the HSE €1,000 a day. They are just not listening to us. We have written to Minister Reilly, Minister Kathleen Lynch, Minister Frances Fitzgerald and nothing has happened. We had to make this stand for JJ because we believe he is entitled to this and for other carers who find themselves battling for the very basic services,” said James.
The HSE said it was committed to enhancing community based care for its clients right across the health service and seeks to provide the best level of care for children and families. The HSE works with a wide range of voluntary organisations, such as the Jack and Jill Foundation, to provide such services. We acknowledge that voluntary organisations face challenges in delivering efficiencies to ensure that services are delivered within the allocated budget.
Home support services are discretionary (not demand led) and the number of hours allocated is determined by an individual assessment which takes into account the other support services already being provided to a child and their family. This service has to be flexible to address needs within a defined budget.
“Reflecting the current economic situation the HSE must manage service levels within existing resources. Similarly, voluntary organisations face challenges in delivering efficiencies to ensure that services are delivered within the allocated budget. This is a challenge for all of us in the current environment but by working together and finding innovative ways to make savings we can help to protect services,” said the HSE.
Anybody wishing to help donate to the Jack and Jill Foundation can text the name of their county followed by 57034. (Calls cost €5 with 4.95 of that going to the Jack and Jill Foundation.