The head of Down Syndrome Ireland has said people living with the condition should automatically be entitled to medical cards.
DSI said 50% of children with Down Syndrome who have discretionary cards have either lost them or are at risk of losing them.
The group's CEO Pat Clarke has criticised the HSE's handling of their cases, and said that for those living with the condition, the fear of losing their medical card was an "undue burden".
He said the health service was not considering the added cost of care for people with Down Syndrome, including frequent GP visits, resource hours and speech and language therapy..
"Our initial demand would be for an automatic entitlement to a medical card for people with Down Syndrome and Motor Neurone Disease etc," he said. "The HSE does not take into account the attendant cost of having a disability.
"Parents are just at the end of their tether."