Friday 28 July 2017

'My son has the condition but he nearly looks after me, it's draining'

Battle-weary parents, don't trust the State to look after their disabled children, says Maeve Sheehan

IN a community hall in Dundalk last Wednesday, a group of parents met to discuss their children's future. Their children are disabled to varying degrees, but the parents are united by a common goal: they do not trust the State to take care of their children when they reach 18 so they plan to do it themselves. They will fundraise and lobby through their association, Special Needs Active Parents, (SNAP) to somehow set up their own residential and day-care facilities.

It will no doubt be another monumental battle but as carers of disabled and vulnerable children, they are veritable war-mongers. Most parents in the hall that night saw the Prime Time Investigates documentary chronicling the hellish tales of carers who had reached breaking point because of the scarcity of resources.

All were in admiration of those who were brave enough to speak up. Few enough are willing to. They are afraid that if they do speak out, one parent said, they might risk further delays to the new wheelchair or the home-help hours their child has already been waiting months for. There is understandably much tongue-biting: but make no mistake, they say, every day is a battle and it is fought with bureaucrats.

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