Half of children with Down’s lose vital aid

Up to half of the country’s children with Down’s syndrome have lost their discretionary medical cards, and the group has been “disproportionately” hit by a recent clampdown, a leading advocacy group said.

Down Syndrome Ireland estimates around 1,000 children with the disability have lost the medical benefit, and that the practice of providing them with discretionary medical cards at birth — based on health needs rather than income — has ceased.

It is estimated that there are 2,000 children aged under 16 with the condition, but such information is not gathered by any government department.

Despite requests from TDs, the HSE has been unable to provide figures on the number of children with Down’s syndrome who have lost their cards. It said medical cards have never been awarded on medical need, but that a review has resulted in those who were not entitled to the cards, having them withdrawn.

At the Dáil’s Public Accounts Committee on Nov 14, HSE officials could not provide answers to questions on how many of the 6,324 discretionary medical cards removed following review, were from children with Down’s syndrome.

Committee chairman John McGuinness then requested a written response.

The HSE wrote to the committee in the days running up to Christmas and said: “There is no legal basis for the gathering of data which is not required for the review procedure.

“Medical cards are not awarded on the basis of illnesses or medical conditions and therefore the requested information is not available.”

Pat Clarke of Down Syndrome Ireland said, based on the organisation’s own internal research, close to 1,000 children with the condition have lost their cards.

“I believe they are being disproportionately affected by this,” said Mr Clarke.

Around 100 to 120 children are born each year with the condition.

“In the past, parents would apply and usually would be granted a card.

“That is not the case anymore. What is probably happening is they are applying the rules and the various criteria more vigorously, whereas in the past they exercised discretion.”

Both the HSE and Department of Education confirmed last night they do not collate figures on the number of children with Down’s syndrome using their services. Mr Clarke said it would not be a “major problem” to keep such information, which would greatly help in deciding how resources are allocated.

“It’s a simple matter of setting up a database and ticking a box,” he said. “No arm of the State is prepared to do that.”

Fianna Fáil will table a Dáil motion calling for all children with the condition to have automatic entitlement to the card. However, without the necessary data, the HSE will not be able to assess what the cost of this would be, Mr Clarke said.