PARENTS of children with Down Syndrome have called on the Government to increase funding for services including speech, language and occupational therapy.
According to Down Syndrome Ireland, in the past five years, funding services though the charity’s branch network has cost parents and Down Syndrome Ireland an estimated €5.2 million.
“I have one child, Harry, he’s six,” Susan Butler from Blanchardstown, told Northside People.
“The level of service we received differed depending on the territory.
“We got quite a bit of speech therapy, not enough, but quite a bit, and I got little to no occupational therapy for my son.
“Any occupational therapy that he’s had over the last six years we’ve had to pay privately.
“Luckily we’re involved with Down Syndrome Centre, which has subsidised rates, so we get 40 minutes for €25 but if we were to go privately, and I do go privately for speech therapy, it’s €100 for 45 minutes to an hour.”
Butler says that even to put her son in a crèche, she has to pay for an additional child minder who is trained in Lámh, a manual sign system used by children and adults with intellectual disability. She also had to consider leaving her job as the associated costs for Harry almost cancelled out the money she’d make from working.
Glasnevin local, Ciara Reid, also has a young child with Down Syndrome,
“My daughter is called Réiltín, she is 16-months-old and she has Down Syndrome,” said Reid.
“We found out very early on in my pregnancy that our baby most likely had an extra chromosome.
“We loved her and we wanted her regardless of having Down Syndrome.
“In her short life she has been through a huge amount due to health issues but she has also contributed a huge amount.”
Down Syndrome Ireland CEO Pat Clarke said many parents of children with Down syndrome in Ireland feel they are treated like second-class citizens.
“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,” he said.
“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.”