World Down Syndrome Day: 'My boy is a citizen of this country and he's been forgotten about by the state'
A mother who has a young child with Down syndrome said it is "extraordinary" how little State support she has received.
Eileen Birchall (39), from Tallaght, has been waiting for three years for crucial therapy for her son.
"In that waiting period we're receiving zero support," she said.
"The only alternative for us is to look for private therapy and that puts a huge financial burden on us."
There were support systems in place when her son was born in 2010 but these have waned over the years.
For example, one of their therapists went on maternity leave and was never replaced. She did not come back.
Mrs Birchall's son, Christopher (6), suffers from high levels of anxiety and also has autism, which means consistent therapy is necessary for him to live a somewhat independent life.
However, Mrs Birchall was quick to praise the work of Down Syndrome Ireland (DSI), which she said has provided great support to her and her son over the years.
She currently avails of speech and language therapy, as well as occupational therapy, provided by DSI at a reduced rate of €55.
"Without Down Syndrome Ireland, I really don't know where Christopher would be," said Mrs Birchall.
"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?"
In the three years that Christopher has accessed the subsidised therapy, he has moved from speaking two to three-word sentences to six-word sentences.
Mrs Birchall said it helped him to tell people if there is anything wrong with him.
The therapy has also taught Christopher how to dress himself and make toast, among other things.
"We all want our children to be as independent as possible," she said.
"Because the Government isn't supporting us and giving our children basic human rights to communicate and reach their potential they're doing them a major disservice."
The concerned mother lives with her husband and three children.
Christopher is currently on a HSE waiting list.
Mrs Birchall added that she was "incredibly worried" for the future, especially with the recent scandal in residential homes, which saw vulnerable people being abused.
"All these scandals with the residential units, it's very scary," she said.
"We would hope Christopher would be independent enough for assisted living. We might have to rethink that because he might not be in a situation to live independently or be in an assisted living environment if we feel the State won't support him in a correct way and in a safe way."
Down Syndrome Ireland say funding services, such as speech and language therapy (SLT) and occupational therapy (OT), though the charity's branch network has cost parents and Down Syndrome Ireland an estimated €5.2m.
To mark World Down Syndrome Day, a group of parents took their children to Leinster House to protest about the long waiting lists that they claim have led to their children not being trained to speak.
"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," said DSI chief executive Pat Clarke.
"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," he added.
DSI and parents are asking the State to increase speech and language therapy and occupational therapy services.
They have also asked for more school-based services.
The HSE was unavailable for comment when contacted.