Parents kicking up a FUSS to get services for their children

A Meath mother who was told by the HSE that her autistic son was not a priority is the driving force behind a new group campaigning for the rights of children with disabilities. Rachel Martin has connected with parents across the country with her group Families Unite for Services and Support (FUSS). They took part in the recent cost of living protest and are planning another protest in Dublin next month.

The Ashbourne woman explains that parents facing lengthy waiting lists for services for their children have joined forces to advocate for their families It comes following her own difficulties in getting access to services for her children, aged four and eight.

"I was told my son was not a priority and I just thought I could not be the only one in this situation, and decided to start the group with a goal to fight for fair and equal access for children.

“There is so much inconsistency across the country. It’s a postcode lottery. Depending on where you are it will depend on how staffed the areas are, how many children rely on that service,” she said.

“Basically, there are little pockets of parents everywhere fighting in their own areas, so the idea of FUSS was to bring all those voices together and unite them because the Government are putting out little fires everywhere, so when someone makes noise, they might get a bit of service."

Rachel explains that when she and her husband, Alan, noticed her son, Noah had difficulties with speaking, it was flagged with the public health nurse, but they knew they would have too long to wait for an assessment, so they had him assessed privately and he was officially diagnosed with autism.

He was availing of services until he was six when he was discharged from the old system to the new Progressing Disability Services.

"His discharge report recommended speech and language therapy, occupational therapy, and a psychology follow-up. But it's been two and half years and he has had nothing from the HSE." His four-year-old sister, Ivy, was diagnosed with autism and sensory processing disorder privately last year too.

"She was seen once as part of her review assessment but has seen nobody since.

"Noah is in an autism class in a mainstream school, but there is a waiting list and there won't be a place for Ivy in a special class.

"The real kick in the teeth for me was when I was concerned about Noah and contacted the services only to be told he wasn't a priority."

That was what drove Rachel to set up FUSS.

“Disability is grossly underfunded, and always has been. It’s not about the therapists who are doing the best they can, it’s a systemic issue and that’s what we need to focus on, it’s the system that’s wrong, it’s underfunded and it’s understaffed.”

"FUSS aims to shine a spotlight on the shambles that is Ireland's Disability Services. We plan to unify voices nationally to force change. Our children's rights are infringed upon." She said the Progressing Disability Services (PDS) has had a catastrophic impact on children at a time when they needed stability and support more than ever before.

"Every day we watch our children regress. We watch them miss out on school places. They sit in pain in equipment that is too small or unsuitable. We watch them disappear from their communities and their families waiting for a lifeline that we are consistently told is coming.

"We are bringing together parents of children with all disabilities. We will shine a light on the terrible lack of services and campaign for the services out children need.

"We will not allow our children to become invisible; it is time to make a fuss."

A motion by Cllr Michael Gallagher calling on Minister Anne Rabbitte to make adequate funding and personnel available to services for disabled children was passed at a recent meeting of Meath County Council.

"There are a lot of great parents working 24/7 to look after their children with disabilities with little or no help.

"I have had a lot of parents contacting me and I am pleased the councillors supported my call," he said.