'Do better': Mother of child living with a disability calls on govt for more support

The mother of a child living with a disability has called on the government to "do better" in supporting families in similar situations.

Speaking to William Terite on Pacific Mornings, Aimee Terite*, who’s son Jacob has autism, said it's difficult navigating the system and getting support.

"Give us more support. Give us more access to things," Aimee said.

"Support us parents to give our children the best life that they deserve their independence."

The coalition government announced an $89 million investment into redeveloping three schools and provisioning 17 satellite classrooms for high-needs students.

Of the total investment, $63 million will go to depreciation funding to upgrade specialist schools in poor condition with the remaining $26 million to capital funding in delivering the satellite classrooms.

Aimee hopes the investment will shorten waiting lists as her son has been on one since last year.

"Unfortunately, he won't make it this year so we have to wait until next year," Aimee said.

"He's currently waiting in kindergarten at the moment. He's only learning what he can at kindergarten and he's bored at the moment so there's nothing I can do.

"So, hopefully, this will be good for us on the waiting list."

Aimee said the responsibility of caring for a child with a disability is "round-the-clock" and can have an impact on mental health.

"I can only speak from my own experience as we know that autism is a Spectrum

"Jacob's non-verbal, he struggles with communication. He struggles with day-to-day things."

Watch the full interview via 531pi's FB page:

Education Minister Erica Stanford said she was "horrified" to learn about the "unacceptable" state of specialist schools and the "long wait lists of more than 650 children".

“To read in the media recently about the mold, damp and mushrooms growing in the walls of this school," Stanford said.

"Our most vulnerable learners do not deserve to be in classrooms in these conditions."

Stanford added Sommerville Special School in Auckland will get an upgrade with on-site work expected to start at the end of this year.

Additionally, she said decisions on funding for two other specialist schools are in their final stages.

Autism NZ CEO Dane Dougan said they are supportive of the government recognising the importance of special schools.

“There's always going to be those high complex needs children that need a different type of environment that specialist schools offer so we’re very supportive of that.

However, Dougan adds that the investment overall is “a small drop in the bucket of what's actually needed to create the environment that’s going to work for our kids”.

Dougan said two important issues the government must address is the chronic underfunding for people with disabilities alongside the difficulty of ascertaining support.

“You have to paint everything negatively for your child to get any type of support in a schooling environment which is really difficult for whānau to do that.

“They are looking to review that process and we’re a part of that so we’re hopeful it’s going to become smoother to access that funding.”

Watch the full interview with Dougan via 531pi FB below:

Aimee said in the meantime she has observed there are supportive spaces to meet other parents caring for children with disabilities such as Spectroom PLAY ZONE, a play area specialised in autistic children and other disabilities.

However, other than those types of spaces the issue of a general lack of support remains.

"It's really hard, we're doing this on our own and trying to find support is the hardest thing.

"I think what it is is not knowing where to go for support. There's not enough information for us to find that support.

"We're having to navigate through everything on our own and find that support for ourselves."

*Aimee Terite is the sister of 531pi’s Pacific Morning’s host William Terite.