Parents' plea to HSE for homecare for ill son

THE OMBUDSMAN for Children is examining the case of a severely disabled four-year-old boy, who is being refused a homecare package by the HSE.

His family also now fear they will lose their home as their family income supplement will fall by €148 a week – or €7,696 a year – from June.

John James Ryan, who lives with his family at Scallagheen, Tipperary town, was born prematurely at 25 weeks. Although his twin sister Lucy developed well, and is now a healthy four-year-old, JJ developed complications immediately. He had to be resuscitated three times after his birth and had a bleed on the brain.

“He has cerebral palsy, he has never spoken and has constant, chronic lung infections,” his father James said yesterday. “He is profoundly deaf and has no use of his limbs: he can’t grasp things or play. His world is his through his eyes.”

He has been in hospital nine times this year with infections and needs constant care and regular physiotherapy. Since he was a baby he has been receiving 8½ hours’ home nurse care a week from the Jack and Jill Foundation.

This was due to cease at JJ’s fourth birthday, in line with Jack and Jill policy, but it is continuing while the foundation helps them in their fight to get a package from the HSE.

“JJ loves to see the nurse arriving. His eyes light up. She works with his disability and keeps him limber,” Mr Ryan said. “He needs that care. If he wasn’t getting it he’d go back badly, and we aren’t trained.”

The couple also have a two-year-old daughter, Ciara. Mr Ryan has written to the HSE and politicians over the past five months, as has Jonathan Irwin, chief executive of Jack and Jill, to no avail.

In a letter to Mr Irwin, Pat Healy, director of operations for HSE South East, said it was not the regional HSE policy to provide homecare packages for children, in the way it does for the elderly.

“With children, the emphasis is on ensuring that the child is provided with all the therapeutic and intervention services required. The funding of all services would be via the present disability budget so, in effect, this is already being done.”

The HSE could not comment last night.

According to Rhona Kett-Sheridan, the Jack and Jill nurse who cares for JJ, he is “prone to infection during the winter so an out-of-home respite is not an option”.

Mr Ryan said he and his wife Michelle were “exhausted, very worried and very emotional”.

Mr Ryan works as a night porter in a hotel in Co Clare, which earns him €425 a week. Calculation of the family income supplement is complicated, but as a family with three children, their entitlement is based on an income of up to €703 a week.

The FIS entitlement is 60 per cent of the difference between, so they get €166 FIS a week.

Following the budget, Michelle’s carer’s allowance of €248 a week will now be taken into account as income. As a result their FIS entitlement will, from June when their application is due for renewal, fall to €18 a week.

“I’m really afraid we are going to lose our home,” Mr Ryan said. “Our mortgage is €800 a month, we have car finance of €100 a week and there are all the usual bills. I feel like we are being forced to put JJ into care. All we need is six hours a week homecare, which I’m told would cost the HSE about €300 a week.

“I think this Christmas will be like the last supper. God knows where we will be next Christmas.”

A spokeswoman confirmed that the office of the Ombudsman for Children was looking into the case.