Children living with autism face frustrating therapy gap waiting for NDIS

Parents of children whose federally funded support for autism therapy is set to expire are facing a frustrating reality.

Key points:

  • Family fears their son's condition will worsen while waiting for NDIS support
  • An expert says some children may have to wait at least a year for NDIS access
  • More than 16,000 children living with autism access federally funded early intervention services

The support for children living with autism spectrum disorder (ASD) will be better under the NDIS. But for many, the scheme will roll out too late to keep therapy going.

More than 16,000 children access early intervention services through the Helping Children With Autism (HCWA) program.

It provides a maximum of $12,000 for children on the autism spectrum to pay for assistance like speech and occupational therapy.

Once that funding ends, many families hope therapy can continue under the NDIS. But in areas where the scheme has not rolled out yet, there is a gap.

Families could be waiting for a year or longer until treatment plans are in place under the NDIS.

The options for families with children living with autism narrow once federal HCWA support ends.

A GP can prescribe five therapy sessions a year for which families can use a Medicare rebate or a child could be eligible for 20 therapy-rebated sessions in their lifetime.

But the Medicare rebate ranges from $62.25 to $99.75 per hour. Occupational therapy sessions can cost $150 per hour or more.

Under the NDIS, support for children on the autism spectrum will improve dramatically.

"I can understand the frustration of families," said Marg D'Arcy, an early childhood intervention specialist with EACH social and community health.

"They can see NDIS off there on the horizon, but they can't reach it. They can't get at it."

Darryl Egan and Fatima Vong and their son Covey are one of those frustrated families.

"It's annoying, to be honest," said Mr Egan.

"We have a beautiful child who needs help ... and they're not getting it."

Parents fear child will go backwards without support

Covey, aged six, lives with high functioning ASD. His language comprehension significantly lags behind other children his age.

In 2015, he received a $12,000 Helping Children With Autism support package to pay for therapy sessions twice a week.

Those sessions will end when the money runs out next month.

"I'm just worried Covey will be going backward," Ms Vong said.

"We need to find a way to help this kid, you know. So we need support."

Like other families in a similar situation, the support they are looking for will come from the NDIS.

Mr Egan and Ms Vong have been told the NDIS will roll out in their area, Melbourne's outer east, in November.

But it could well be much longer until Covey is actually enrolled in the NDIS.

"If you think about it there are thousands of people, children and adults, who will be coming into the scheme," Ms D'Arcy said.

"You could be looking [at] anything up to July next year."

That means Covey could go without early intervention therapy for his autism for more than a year.

In a statement, the Department of Social Services said: "Parents of children ... who have exhausted their funds through HCWA may wish to contact the National Disability Insurance Agency (NDIA) as soon as possible to enquire about their eligibility to request access to the NDIS."

Mr Egan said he tried that. He also contacted the Department of Social Services about possibly extending his son's HCWA support payments until the NDIS rolled out in his area.

"They say 'we'll look into it', or 'we'll have a look at it' and nothing happens," he said.