'My three special needs children have been left behind'

An angry Kingscourt mum whose three children with special needs have not had access to vital therapies since February due to a pause on services says that “children with disabilities are being left behind.”

Marie Smith (34) was told recently by the HSE that it could take a further three years or more for her twelve-year-old son Calvin who has autism to receive an assessment of need ahead of his enrolment in secondary school next September due to a backlog in applications.

Marie originally requested the assessment in 2018.

Under the 2005 Disability Act, the Assessment of Need (AON) is undertaken or arranged by the HSE to determine the health or educational services needed by a person with a disability.

The Disability Act 2005 stipulates that these assessments must be completed within six months, according to the HSE the current average waiting time is 19 months but some children are forced to wait years.

For the past nine months hundreds of highly trained HSE staff who provide a range of speech and language, physiotherapy and occupational therapy supports across Ireland have been redeployed as contact tracers and Covid-19 testers.

New figures from the HSE show that as of the end of September 6,058 children were overdue to receive an assessment of need.

The Cavan woman has two other autistic children Zara (4) and Jack (3) who are non verbal and not had access to occupational therapy or speech therapy since February with no confirmed start date for services to resume.

The exhausted mum who travels 270km a week transporting her children to St Oliver Plunketts National School in Loughmourne, Castleblaney, Co, Monaghan, the nearest school with an ASD unit at the time Calvin was diagnosed is calling for the government to step in. She said:

“I am absolutely livid. I rang up the child development team last week to see where Calvin is on the list and was told the waiting time is 40months and that there are no services currently due to covid and there was nothing they could do, that the staff are all out swabbing.

“Calvin suffers very bad from anxiety and doesn’t know how to express his feelings in an appropriate way so both the school and I requested that he’d have a psychological assessment.

“I need this report so he can be enrolled into secondary school and his needs are meet there.

“The latest report we have is when Calvin was six. He hasn’t been seen in years.

“When he switched from Enable Ireland to the HSE when he was six, you might as well say the book was closed. Between me and the school we did it on our own.

“They don’t leave any other kids behind but they leave special needs children behind. They are entitled as much as anyone else to get these things done. It is so wrong.

"I'll fight tooth and nail to get these basic human rights for my kids.

“He is so anxious and he is going to need someone there with him to help him and support him.”

Marie wife to Mick and also mum to Amber (16) who is typically developing admits it was “a shock” when Calvin got the diagnosis having no prior knowledge of the condition.

“I didn’t even know what autism was when Calvin was diagnosed with it,” she said.

“He was four and there was no school in Kingscourt with an autism unit at the time. The only school placement I could get was in Loughmourne 27km away.”

In a further blow to the family, Marie’s second youngest daughter Zara (4) was also diagnosed with autism in September 2019 leaving the Kingscourt mum “devastated.” She added:

“I was completely devastated; my heart was broken when Zara was diagnosed.

“I took it so badly because I might have been very naïve but I was relived when I had a girl because I thought autism isn’t common in girls and I convinced myself that she would be fine.

“Zara is after missing practically a year of services in Enable Ireland and she has regressed in school over the last few months as a result.

“She has a lot of sensory problems and she needs OT terribly it is holding her back.”

Marie’s youngest child Jack was her third child to be diagnosed with autism at 16 months. Commenting on coping with life with three children with special needs she said:

“Not long after Zara was diagnosed we started to realise that there was something wrong with Jack as well.

“He was put through for the assessment by Enable Ireland very quickly because they wanted to get him into early intervention and into a school.

“He finished his assessment in June 2020 but has had no access to services since.

“The only way that I can describe autism is that you grieve for your child. You had a child that spoke that did all of these things in Jack’s case up to 15 months of age and then it is just taken from you.

“The one thing that does keep me going with them is that I’m waiting for Zara to say mammy and I know the day she says mammy I will ball my eyes out; it will be the best feeling in the world.

“It’s the simple things like a child being able to ride a bike or say their first word that makes life worth living that other people take for granted.”

A Department of Education spokesperson said that:

“A diagnosis of a particular disability, or an assessment of need, is no longer required to access all special education supports, or to access additional teaching support in schools, nor is there now a requirement for schools to submit assessments annually in order to apply for additional teaching resources.”

The HSE has been contacted for comment.