HALF of all parents of disabled children want help with caring for them, but in some areas fewer than two in a hundred get it, a new report says.
The most common way in which such help - called respite services - is given is in the form a week's holidays for the child every year and nothing more than that, the report says.
Health boards are strongly criticised in the report, Who Cares About Respite?, by Judith Kiernan, and published at the annual conference of the Disability Federation of Ireland this weekend.
Families need regular help, together with weekend and holiday breaks, it says. Help could include someone to turn a child several times a night for a few nights a week to allow parents to sleep.
Yet health boards have not developed a systematic way of providing these services, the report suggests. Among its criticisms are:
. No health board can say how much it spends on respite services for children.
. Health board grants for respite services are once off and only made to community based projects. This inhibits the longer term development of services.
. Health boards have no plans to improve respite services in the next year or to provide more of them. Neither do they have any medium term strategy for providing these services.
The report urges a national policy for providing respite services, and holiday schemes should be funded separately.
The need for respite care to give parents a break, or to help them with their tasks, is clear from these accounts in the report:
Julie's mother: "We never go to bed before midnight. That's because Julie needs assistance for turning. So last thing, at about midnight, we turn her and then we go to bed ourselves. She has to be turned a couple of times each night, usually at about 3 a.m. and again at 5 a.m. My husband and I take turns doing it.
"Very often early in the morning, after 5 a.m., she's restless and itchy and doesn't get back to sleep at all. So often we're up and down. Julie can get very tired from waking at night, particularly if she has a long run of very disturbed nights ... You never get used to never having a night's sleep. If there is a bad run, it can get very difficult."
Jim's father: "At this stage, Jim has no movement at all. So we have to be his hands for him. When he goes to bed, the first hour or so is the worst, he might need 20 or so different changes to get him settled. After that it depends, but on average he needs to be turned every hour and he can get quite itchy and he needs to be straightened out.
"We are all exhausted, my wife, myself and Jimmy ... So now we have the two nights' turning help. It makes a fantastic difference ... It means now that my wife gets four nights uninterrupted sleep and I get three ... Our other boy, Colm, who is eight, he has it, too. He's begun to fall a lot and he's asking to be put in a wheelchair. We're trying to hold on for as long as we can, but it's hard on my wife ..."