As World Down Syndrome Day is being celebrated, a Tallaght mother, is frustrated that her son has not had any state speech and language therapy or occupational therapy in three years.
Eileen Birchall, mother to six- year-old Christopher, says without Down Syndrome Ireland, she doesn't know how they could cope.
Christopher has not had any State Speech and Language Therapy or Occupational Therapy in 3 years. He receives subsidised SLT and OT through Down Syndrome Ireland’s Dublin branch for €55 a fortnight. Down Syndrome Ireland’s Dublin branch pays the remaining costs.
Ms Birchall said: “Without Down Syndrome Ireland, I really don’t know where Christopher would be. It’s extraordinary how little State support we’ve received for Christopher these past few years. Not just that, we worry about his future. My boy is a citizen of this country and put simply, he’s been forgotten about. What happens when we’re not around to fight for him?."
Down Syndrome Ireland has marked World Down Syndrome Day today by highlighting the fact that thousands of children with Down syndrome are being denied their right to communicate and develop their skills. They are forced to wait years to access vital services such as Speech and Language Therapy and Occupational Therapy though the State.
The charity, which relies almost entirely on public fundraising, is urging the Government to increase these vital services for children with Down Syndrome.
Due to a lack of State early intervention and school based services, parents have to fund private therapists to help their children communicate and develop their skills to carry out such everyday tasks as feeding, dressing and toileting so they can lead as independent lives as possible.
Through its nationwide branch network run almost entirely by volunteer parents, Down Syndrome Ireland aims to fill these gaping holes in services by offering heavily discounted therapy sessions to parents, who in turn help the charity by raising funds locally.
In the past five years, funding services though the charity’s branch network such as Speech and Language Therapy (SLT) and Occupational Therapy (OT) has cost parents and Down Syndrome Ireland an estimated €5.2m.
Down Syndrome Ireland CEO Pat Clarke said: “Today marks a day where we celebrate people with Down Syndrome around the world but many parents of people with Down Syndrome in Ireland feel they are treated like second-class citizens.
Mr Clarke said: “As well as having a child with a disability, parents have to face the additional stress and worry of having to fundraise and pay for services so their child can reach their full potential. Without Down Syndrome Ireland, their children would in many cases be left with barely any service provision from the State and it’s simply not good enough. We’re calling on the Government to act.”
Pic Robbie Reynolds.
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