‘Our children are citizens of the State, but they’re being left in limbo’

Damien Douglas’s twin girls, Una and Ailis, can light up a room with their smiles.

“They are so happy,” he says, “They love music and sensory stimulation, and are very social in their own way. A lot of energy goes into looking after them.”

Both are intellectually disabled and have complex needs. School has played a crucial role in helping them to fulfil their potential. But now that his daughters have reached 18, uncertainty prevails.

Their constitutional right to an education has ceased and the State is under no obligation to provide them with any services. Yet they are the same girls, with the same complex needs.

The girls have a chromosomal abnormality known as Wolf-Hirschhorn Syndrome.

“As a result of this they can’t do anything for themselves,” says Douglas. “They can’t eat or drink, are incontinent, can’t walk or talk, can’t look after their own needs in any way, yet they have the loveliest of smiles and laughs.”

The syndrome also leads to other complications. They have epilepsy and multiple joint problems and require specialised seating. They have to be lifted any time their positioning requires changing.

“Day services are very important to us and the girls themselves,” says Douglas. “They would help share that burden, and, as you can imagine, having two children with such complex and profound needs puts a lot of pressure on us as a family.”

Douglas isn’t the only parent wondering what the future holds for his children.

Funding cuts mean many of the 880 intellectually disabled teenagers who are reaching adulthood will not have the kind of day service which meets their assessed needs.

Day services have traditionally provided activities or occupation over a five-day period.

Reduction in services
Latest national figures show that no services have been identified for about 60 young people, but hundreds more face a reduction in this service from five days to two or three days.

Douglas took early retirement. He didn’t want to leave the burden of full-time care to his wife. “I’ve a fairly good pension, but I felt I had to give up the job I love,” he said.

“Without a day service, we are prisoners in our own homes. You can’t take the kids for a walk on your own. It needs two of you to manage . . . Those kinds of sensory experiences – feeling wind in their faces – mean an awful lot to them.”

For 14 years, Una and Ailis spent five days a week at Stewarts, a service provider in west Dublin for children with disabilities. Douglas is at pains to point out that Stewarts has always been supportive of his children’s needs.

He has been offered a limited day service for his daughters, but it is nowhere near what they require.

“We understand that, as of now, they may be in a position to offer us a five-day service by the end of October, but it’s dependent on a number of things happening,” he said.

“We shouldn’t have to do this – we shouldn’t have to bare our souls and go public like this. Our children are citizens of this State. They are entitled to have their rights respected. These are children being left in limbo, through no fault of their own.”