“Keep your child up as late as possible and fill him full of sugar,” was the unorthodox advice that Joanne Duffy received when struggling to secure a special needs assistant (SNA) for her son Ronan, who has Down Syndrome.
The services are so stretched that only extremely challenging cases were likely to get the resources vital to children such as Ronan if he was to have any hope of progressing in a mainstream primary school.
In the event, Ronan from Moyvane, North Kerry, was assigned an SNA but, otherwise, State services have been thin on the ground. In the early years, he had an “amazing” domiciliary care nurse and a pre-school team courtesy of the Brothers of Charity, but little or no access to essential therapies.
In fact, up to the age of four and a half, Ronan received no occupational therapy from the HSE. His GP costs were also huge — at the time, there was no automatic entitlement to a medical card for children with Down Syndrome (legislation is in the pipeline now to address the deficit) — and Joanne recalls that, in his first year, Ronan had to go to the GP 19 times, at a cost per visit of €50.
Into this vacuum stepped Down Syndrome Ireland (DSI). Instead of Joanne having to pay €90 per therapy session, DSI subsidises the cost, so that parents pay €30.
Without DSI’s help, Joanne would face an annual therapy bill in excess of €2,000. DSI also operates a waiver if parents cannot afford to pay.
“Ronan started speech and language therapy at three months thanks to DSI,” Joanne says. “He’s had the same therapist at DSI since then which is great for him,” she says. He also received some SLT from Brothers of Charity.
And while they “would be lost” without the support of DSI, the ongoing costs of caring for a child with a disability means constant fundraising too.
“From the minute he was born we’ve had a begging bucket out,” says Joanne.
“The family support has been huge. When my sister-in-law got married, they asked for cash donations to be made to DSI. The same for some big family birthdays.”
Her employer, St Joseph’s Foundation in Charleville, have also been generous with her, she says, facilitating flexible working hours to fit in around Ronan’s therapy sessions.
However, the State has not been as generous. It is not that the people working in the service are not giving it their all — it’s just they are too over-stretched and under-resourced, she says.
“I believe there is a moral obligation on the State to look after its citizens and I think it’s wrong that they are failing our children,” says Joanne
Her experience is replicated around the country and today, on World Down Syndrome Day, DSI is calling on the government to increase vital services.
In the past five years, funding services such as speech and language therapy and occupational therapy though the charity’s branch network has cost parents and DSI an estimated €5.2m.
DSI says that 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.
DSI chief executive Pat Clarke said many parents of people with Down syndrome in Ireland feel they are treated like second-class citizens.
“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,” he said. “We’re calling on the Government to act.”
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