28 Sep 2017

David's battle: 'Who is supposed to take care of him?'

10:04 am on 28 September 2017

An Auckland mother fears her four-year-old son will be confined to the corner at his crèche, unable to learn, because of what she says is a lack of teacher aides for children with disabilities.

Lucy Bennett and her son David, who has neurofibromatosis type 1 and moyamoya syndrome.

Lucy Bennett and her son, David, who has neurofibromatosis type 1 and Moyamoya syndrome. Photo: Supplied

Auckland woman Lucy Bennett's son, David, needs assistance to walk and is unable to use his left arm, after suffering six strokes last year.

David has neurofibromatosis type 1 and a rare condition called Moyamoya syndrome, which means blood doesn't flow to his brain properly.

Ms Bennett describes her son as a superhero.

"He is incredible. He keeps falling over... but he keeps on getting up again."

David loves learning, but his mum said he faced the possibility of being unable to move around at crèche without a dedicated teacher aide to help him.

"One wonders whether he will be stuck in - and I've got to say it - will be stuck in a corner, where he can't get to where he needs to go safely.

"Because even if he was in a walker or a wheelchair, he can't operate that himself."

Ms Bennett has given up her full-time teaching job to care for David, and attends crèche with him. While the staff there were amazing, David faced major challenges in getting the support he needed, she said.

"He can't walk unassisted, he can't move his left arm, he has major safety issues.

"You can't walk away from him."

She said resources for early childhood support were stretched. She requested a teacher aide for David last term, but he wouldn't get one until next term - for four hours a week.

Ms Bennett said that was only a fraction of the hours he needed.

"What happens for the more than half that time that he's not funded? Who is supposed to take care of him?"

David isn't alone in waiting for additional learning support.

Early Childhood Council chief executive Peter Reynolds said a lot of the council's members were concerned about being able to access support for children with disabilities or behavioural needs.

He referred to a recent example in Wellington of children waiting for more than 12 months.

Mr Reynolds said changes have been under way through the Ministry of Education's learning support system for the past couple of years, with projects being trialled throughout the country to improve access to services.

While the government has given extra funding - it committed an additional $81.6 million over four years to learning support in the last budget - Mr Reynolds was not convinced it would be enough, and said more needed to be done to cut down waiting times.

"You've got to wait for an assessment and then, having received an assessment, you're given an allocation of support, and you're quite frequently put on a waiting list for that as well."

He said those delays could affect developmental progress for some children.

In a statement, Ministry of Education head of sector enablement and support Katrina Casey said the ministry was committed to supporting David and had provided him with additional support from an early intervention teacher and a speech language therapist.

It said $4.5m was spent on pre-school teacher aides, also known as educational support workers, each year.

Currently there are 28 covering the West Auckland, Rodney and North Shore areas in Auckland, supporting a total of 96 children.

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