A leading advocacy group made the claim yesterday on World Down Syndrome Day, warning the issue is a sign of the ongoing failure of people to listen to what those with the condition need.
Speaking at the launch of an awareness campaign to highlight ongoing gaps in continued education, employment, and information support services, Down Syndrome Ireland CEO Pat Clarke said the medical cards issue is damaging lives.
He said thousands of people in Ireland’s Down syndrome community had their cards removed as part of an ongoing HSE “review” of the system.
And despite Health Minister James Reilly’s repeated claim that no one who needs the support is losing it, Mr Clarke said people are still falling through the cracks.
“I would estimate up to 50% of the families would have lost it, or the medical card is at risk at this point in time. There has been a sea-change in terms of lack of access.
“I do believe there is a better information flow from the HSE now [compared to last summer when the issue emerged], they are doing their best to keep people informed.
“But at the same time I don’t see any improvement in the overall circumstances. There hasn’t been a change of heart, just better PR.”
His claim follows previously highlighted cases over services being taken away from people living with the condition.
This is despite the fact it is a life-long medical issue which leads to increased GP visits, more chance of illnesses and other health-related costs that will not improve over time.
Mr Clarke’s comments came as the advocacy group launched a campaign to encourage the wider public, and politicians, to take on board the views of people with Down syndrome instead of resorting to what the body terms “tokenism”.
According to the document, the key section in society is being blocked from “fundamental human rights” such as education, employment opportunities, and accessible information on public issues due to barriers which precede the current government.
The “2014 manifesto” is targeted at candidates in the upcoming local and European elections.
Offaly native Katie Troy, a service user and 25-year-old member of the National Advisory Council, said among the key frustrations for people living with Down syndrome is that fewer than 5% gain employment, despite being able to perform the work.
She said education service options also reduce significantly after second-level, with college courses focusing on general themes instead of subjects students will be interested in, while politicians are ignoring the problems by failing to provide information pamphlets in easy-to-read formats.
* The full report can be read atwww.dsi.ie.