World Down Syndrome Day: “John embodies many wise paths that most of us strive to achieve throughout our lives”

Some children with Down syndrome wait up to four years to access essential early intervention services, such as speech and language therapy.

Today is World Down Syndrome Day to raise awareness for those affected and to celebrate their many and unique achievements.

However, parents in Ireland are deeply frustrated by the lack of support for children with Down Syndrome (DS) here and many face a long waiting list to receive any type of intervention.

Down Syndrome Ireland (DSI), which has 3,500 members, said a recent survey of its members found that 65 per cent of respondents said their children had not received speech and language therapy (SLT) sessions in 2021. It also turned out that almost half of all elderly up to 18 years of age had no appointments at all in the past year.

DSI said the situation has worsened during the pandemic and for children with DS, missing out on the early and consistent benefits of necessary therapies would have “lifelong negative consequences.”

“It also has implications for our healthcare system in terms of increased demand for health and social services across the lifespan,” it said.

“Ireland is allowed to continue to provide essential healthcare therapies in violation of the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities). A short-term solution is needed while longer-term policy and implementation issues are being worked out, especially given the delays caused by the pandemic.”

Roscommon’s mother Deborah Condron said she has seen “no progress” in the past two and a half years with her son Darragh, 12, who has Down syndrome amid a shortage of therapists.

She said there are currently no SLT or occupational therapists employed by her local Children’s Disability Network team as part of its new Progressing Disability Services program.

“I wonder how far along he would be now if he had been on duty for the last two and a half years,” she said.

Darragh is currently in fifth grade in a mainstream school. Ms Condron is at a crossroads about the secondary school he will attend as she has no idea how much support he will receive.

Working with DSI’s Roscommon office, she said a survey of 50 members revealed none of them are currently accessing essential services.

The industry is being forced to find its own speech therapist, starting in May and jointly funded by them. However, each child will continue to receive only one session per month.

“It’s very frustrating and very annoying. I would love if he could fulfill his potential as he is not at the moment. You don’t realize until you start teaching our kids their skills. Our kids just seem to get left behind all the time,” she said.

“Today we want to emphasize that our children exist. One in 500 children is born with DS, so there are many children and adults with DS. We are here and we don’t get any help or support. We paddle a lot with our own canoe at the moment.”

The public is encouraged to support the work of the DSI by wearing it
colorful or weird socks today. World Down Syndrome Day: “John embodies many wise paths that most of us strive to achieve throughout our lives”

Fry Electronics Team

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