A mother from the Ballarat suburb of Delacombe says National Disability Insurance Scheme planners refused to assess her daughter’s needs in person, citing lack of funds.

Gayle Bird, whose 23-year-old daughter Tori has the mental age of a three to five year-old-child, said planners insisted only her daughter could answer questions about her disability.

Her claims run counter to National Insurance Agency policy which entitles all clients to face-to-face meetings.

Rick Morton

More than 1200 families have had their National Disability Insurance Scheme packages expire without a further plan in place — many without warning — as the agency responsible scrambles to confront a litany of planning problems at a critical time in its history.

The figure was provided by the National Disability Insurance Agency when questioned. However, the agency, which runs the $22 billion NDIS, suggested every family whose plan had expired had been uncontactable, despite evidence to the contrary.

Henrietta Cook & Timna Jacks

Sometimes when Angus arrived at school, his classroom was empty.

All the students were on an excursion, except for him.

"They kept the excursions a secret," the 12-year-old says. "I wasn't even told about them. It made me sad, and sometimes I got mad."

Desperate parents are shopping for a label for their children's disability in a bid to secure vital classroom support.

In order to satisfy rigid funding rules, parents of students with high-functioning autism and attention deficit hyperactivity disorder are seeking a diagnosis of severe behaviour disorder.

Psychiatrists say the latter is a label that applies to students who cause intolerable disturbances in class.

Miki Perkins

"It was supposed to offer hope, but that's just been trashed".

It's not the way you'd expect the head of one of Victoria's peak disability groups to describe Australia's rapidly growing national scheme for people with disabilities. Alexander Curotte, 31, has become withdrawn and depressed since the switch to the NDIS, his parents say. Photo: Justin McManus

But Kevin Stone has had a gutful. At every meeting he goes to, the stories are the same.

Are we getting autism diagnosis right?

When a child is slow to walk and talk, alarm bells can start to ring for mums and dads who know instinctively that something is not right.

In many cases, concerned parents are comforted by doctors who say it’s nothing serious and all children develop at different rates.  And perhaps the child goes on to grow up normally.

But for some children, these developmental delays can be the first signs of something that can stay with them for life.

Getting an autism diagnosis can be a confronting experience for a child.

Jeremy Fernandez​

ABC Lateline 22/5/2017

Autism is one of the biggest disabilities among children needing support from the NDIS and how it's diagnosed has big consequences for national disability funding. In September, new guidelines around diagnosis will be released. Jeremy Fernandez spoke to CEO of Autism Awareness Australia Nicole Rogerson, founder of the I CAN Network Chris Varney, and professor of autism with the Autism Cooperative Research Centre Andrew Whitehouse about the complexities around the diagnosis of autism.