A group of around 50 parents have joined together to complain against poor services available for children with autism in Athenry.
Parents are angered that their children’s development is being stifled by a lack of autistic intervention and educational services.
Ex nurse Edel, who is mother to two sons with autism, Dylan, 11, and John 8, told Newstalk “John attends a special class in a mainstream school in an autism unit.
We have the same concerns as every parent. What will happen to them when we are gone?
Edel said John is “a bright boy”, whose “ability to progress without these services has stagnated.”
“He cannot reach his potential.” Breaking down, the mother added: “He won’t have a life or future. At the moment this situation is denying people their human rights.”
Many of the parents campaigning for better speech and language, health and education services for their children, say they are so tired from looking after their autistic children, and “fighting the system,” they simply don’t have the energy to protest.
Edel wrote to the former Minister for Health Leo Varadkar, and she made two complaints locally against the HSE The Ombudsman for children became involved.
She was told by the then health minister he could not get involved in the internal workings of the HSE.
Dr Niall Muldoon, Ombudsman for Children, said the state needed to ensure “This isn’t a lottery of service.”
However so bad is the situation a large number of parents are working long hours, double jobs, asking elderly parents for financial help and raising charity funding, just to get their children the education and services they need.
Sinead and David, parents of three children from Galway, are angered at the lack of support for their daughter, Grace, 8, who is autistic, has ADHD, dyspraxia, and dyslexia.
Grace finds it difficult to communicate with other children and at her age it is vital she accessing the supports she needs.
Her parents are making the tough move to pay for her services privately but this takes its toll on the family.
David works long hours and yet the family still end up borrowing money from the children’s elderly grandparents.
It cost an arm and a leg. It’s really frustrating to think we all paid in to a system for next to nothing to be there. It’s appalling, it’s like the state have let Grace down.
Mark O’Connor from Inclusion Ireland, an advocacy group for the disabled, said some parents are stuck “Between putting oil in the heating tank or taking the child to speech and language.”
“They are doing charity runs, anything to provide services for children. These services should be based on the need of young person. It’s not appropriate they are on a waiting list for a year.”
The HSE said it “recognises” the services “doesn’t meet the needs,” of the families in the area and this matter will be examined to progress services.