Mother says autistic son’s needs aren’t being met

THE mother of an autistic boy has called for a full overhaul of the education and health systems, claiming they are failing children with special needs.

Hilary Burke’s five-year-old son has moderate autism but she said she has noticed a “significant” change in his health needs since moving from Donard, a dedicated special needs school, to St Mary’s Primary School.

The mother-of-three has called for equal funding to be given to the provision for children with special needs in mainstream schools and those in specialist schools.

Hilary, who did not wish for her son to be named, said she has had to fight for provision for the Primary One pupil, whose in-school speech and occupational therapy sessions were reduced when he moved schools.

The mother-of-three from the Scarva Road said her son has the academic ability to allow him to attend a mainstream school, but she has struggled to get the special needs support he requires.

“As a parent of a child with special needs I was shocked to find that once you go outside special schools - which are excellent - it’s like you have to fight for every last piece of therapy that your child requires,” said Hilary.

“You get a basic standard of provision, but if you don’t fight for your child’s needs that’s all you get. As my son is now older, his occupational therapy needs are greater.

“Once the therapy stopped that’s when I noticed a real change. There has been a significant change in my son’s needs since last July when he had excellent care at Donard.”

Describing her son’s needs, she added that the last few months have been extremely distressing.

“There was a time when my son couldn’t bear the feel of clothes coming off. He had difficulties with riding a bike, he can’t write. He is academically very capable, but in terms of his sensory development he needs specific care and therapy to deal with that.”

Two meetings with the Southern Education and Library Board to discuss the installation of a hybrid worker - a classroom assistant with occupational health training - have been cancelled since the beginning of the year.

The Board declined to comment further than to say they were “working in partnership” with the Southern Health and Social Care Trust on the matter.

Hilary said she wanted to make it clear she has received great support from the staff at St Mary’s but said the provision from the Trust and Education Board has been less adequate.

Initially Hilary said her son’s speech therapy was severely reduced. “My son couldn’t speak and they were telling me he could have a session every six weeks,” she said.

Since that issue was resolved, Hilary said she was left to deal with the provision made for her son’s occupational health needs.

“I am dismayed at the lack of communication between the Education Department and the Department of Health. I feel like I am talking to a brick wall.

“I feel the Trust has been more forthcoming in meeting with me and discussing things with me. But I do not understand why the Board will not even meet with me on this issue.

“I feel the hybrid worker is a compromise already - and now even that has become something I have to fight for.”

A spokeswoman for the trust said they actively “promote the benefits” of hybrid workers and added that while they have looked into the potential for the provision of such workers, it would “need to be agreed in partnership with the SELB”.

Hilary said the Trust had agreed to provide 50 per cent of the hybrid worker’s funding, but the Board had refused to meet to discuss the rest of the costs.

“I think this is very much a money issue,” she said. “I think speech and occupational therapists - who do a great job - are very much hindered as to what they can provide in the current situation.

“The system really needs a full overhaul. I would like to ask Mr Poots and Mr O’Dowd why there is not more money provided for autism specific classes.

“I do not want money to be taken away from specialist schools like Donard, where the level of care is second to none. But I am asking the Minister why he cannot ring-fence other money for children with special needs in mainstream schools.

“The onus here falls on the Board. I want to ask Mr O’Dowd when is he going to set aside money for these children? When is he going to cater for their needs?

“I will stick with this until my son gets what he needs.”

Hilary praised Upper Bann MP David Simpson and his co-workers who she said had been a great help in addressing the issue in recent months.

Mr Simpson said, “This situation has been allowed to drag on for far too long with the result that children with special needs are simply not receiving the provision that they need or that they ought to have provided under their statements.

“School staff continue to do everything possible and they do so with great care, dedication and professionalism. I want to commend both Mr O’Hagan and all of the staff for their care for the children and for every effort that they have made on their behalf day by day. But the school, the parents and the children are simply being disgracefully let down by the prevarication that we have had to date.”