28 Apr 2017

Autism families underfunded and undersupported - advocates

From Checkpoint, 5:07 pm on 28 April 2017

A family that gave up full-time work to care for their severely autistic son is receiving just $46 a week in government support.

An adult holding a child's hand

Photo: 123RF

The Hoggs were just one of many families who were either waiting too long to get support from an underfunded sector, or not getting it at all, Autism New Zealand said.

But Disability Issues Minister Nicky Wagner said the government was already putting between $4.2 billion and $5bn into the entire disability sector and that amount was increasing each year.

Autism funding has come under scrutiny this month after IHC walked away from its long-standing government contract to provide autism services, saying it was underfunded by $500,000.

In response, Ms Wagner labelled the organisation "irresponsible" for cancelling the contract at short notice and creating uncertainty among families.

Rhys and Lara Hogg's son Hunter, 12, was diagnosed with severe autism when he was two. Over the years he had also been diagnosed with ADHD and an intellectual disability, suffered from epileptic-like seizures and was treated as bipolar, although he had not received an official diagnosis.

He required full-time care, Mrs Hogg said.

"We call it tag-team parenting - there's always, always one of us home."

That meant the couple had to give up full-time work to instead take casual and part-time jobs.

"We're down to about 50 percent of what we were earning," Mrs Hogg said.

That had forced a move from Palmerston North to the smaller town of Marton, where they could afford to live on their reduced income.

However, the move had isolated them from the support services available in larger centres, she said.

The only support they now received was a $46 payment available to families that needed extra help to look after their children.

Autism New Zealand chief executive Dane Dougan said the Hoggs were not the only ones receiving inadequate support.

"Every day - our staff hear it every day."

There were waiting lists for help at each stage of the support process, he said.

The wait time for any funding at all was typically about four years from the first, tentative diagnosis of autism.

His own organisation's funding was uncertain, Mr Dougan said.

"We're pretty lucky to have some fairly good and fairly consistent support from Lotteries [New Zealand Lotteries Commission] and they're our biggest funder - but the challenge is that isn't guaranteed because it depends on how much money they have to distribute."

Nicky Wagner said she felt strongly about disability support but every sector complained they were underfunded.

Before its contract ended, IHC had received $2.3 million to provide its autism support services. That same amount would now go to the new provider, Explore, which was taking over the contract from 1 May, she said.

Explore would also take on IHC's waitlist.

"What we've asked them to do is look at everybody on the waiting list and prioritise those with the most need."

The number of people on the autism spectrum ranged between one in 67 to one in 100, though a much smaller number were at the severe end of the spectrum, Ms Wagner said.