Parents concerned for son's future as children's charity ends support
LIAM HALL from Co Roscommon celebrates his fourth birthday today. It may be his last at home.
He has severe cerebral palsy, suffers constant seizures, is almost blind and has never spoken. His seizures can happen at any time and can be particularly bad during the night.
“On a good night he wakes three times,” says his mother Áine. As today is his fourth birthday, the 12 hours per week homecare he has had from the Jack and Jill Foundation since birth will end.
The charity, which provides homecare to infants and children with severe neurological conditions, does not provide homecare once the child reaches four years.
The Health Service Executive provides 10 hours a week to Liam but these hours must be taken up between 8am and 8pm.
In contrast, the Jack and Jill hours can be taken up at night allowing his mother and father, Brian, to get a night’s sleep or to socialise.
The couple have two other children – Seán (5) and Niamh (16 months) – and are expecting another baby in December.
The HSE has been notified on several occasions since September last year that the family would need a homecare package to enable Liam to remain in the home.
In her last letter, Ms Hall asked what the family were to do when the Jack and Jill hours ended this week.
“The letter said ‘siginificant resources are provided’. But they included the Jack and Jill hours we are about to lose which shows they didn’t even read my letter.”
Liam never sleeps through the night, cannot sit up unaided and is peg-fed with a feed made up for him.
“No, he cannot be left alone at all, even in a room for a few minutes,” said Áine.
“That’s where Jack and Jill come in, allowing us to get just simple things done like going to the supermarket or bringing the other two out somewhere.”
A life outside the home, particularly to spend time with Seán and Niamh or as a couple, would be “impossible” without the hours from Jack and Jill.
Mr Hall was hospitalised last year after collapsing due to exhaustion.
“I don’t think we would be able to cope in the long term without the help from Jack and Jill. I do worry Liam will end up in a hospital because we won’t be able to care for him.
“We need a lot more support from the HSE to keep this up. Liam doesn’t have a voice, but if he did he’d say: ‘Minister please do your job and help my Mam and Dad who are so tired and upset on my birthday. It shouldn’t be this hard’.”
Jonathan Irwin, chief executive of Jack and Jill said: “This culture of cuts in homecare has got to stop. Otherwise children like Liam will end up back in hospital unnecessarily.
“It’s time to take stock at a national level and the complete lack of a national paediatric home-nursing care budget has got to be addressed by Minister Reilly before the situation gets much worse.”
A spokeswoman said the HSE did not comment on individual cases. “The HSE continues to work with individual families to make every effort to ensure that services to people with disabilities are protected to the greatest possible extent in the current financial circumstances,” she said.
“In addition to the funding the HSE provides to the Jack and Jill Foundation, a range of other services such as nursing in the home, respite and public health nursing are available to families with children with disabilities,” she added.