Families concerned at possible changes to NDIS funding for autism

TASMANIAN families with children on the autism spectrum are worried proposed changes to the National Disability Insurance Scheme could leave them unsupported.

TASMANIAN families with children on the autism spectrum are worried proposed changes in how the severity of symptoms are classified under the National Disability Insurance Scheme could leave them unsupported.

Bureaucrats, in what Hobart mother Kate Edwards says is already a confusing NDIS system, are “monitoring” the lists used to assess eligibility for entry to the scheme.

The National Disability Insurance Agency said no decision to change the lists had yet been made.

List A guarantees automatic access to the NDIS while List B requires further information before funding eligibility is decided.

“The intent of List B needing greater rigour is to ensure that, as intended, the scheme benefits all eligible individuals with a significant and permanent disability,” the NDIS said.

Autism Awareness Australia has already warned any changes could make the system adversarial with people fighting to prove they needed help.

Tasmanian MP Andrew Wilkie says hundreds of Tasmanians were finding the NDIS a bureaucratic maze.

“It’s a pity the NDIS is spending about $10 million a year on legal battles to try and stop people getting funding, many of which it’s losing,” Mr Wilkie said.

“The bureaucrats who run the NDIS need to realise that this scheme is designed to help people, and that if the funding is there then it should be made available to those who genuinely need it as soon as possible.”

Julian and Kate Edwards’ three children, Joshua, 11, Sophia, 5, and Elisabeth, 13, all have autism and the family is concerned about possible changes to how autism is regulated under the NDIS. Picture: NIKKI DAVIS-JONES

The Edwards family, from Chigwell, have added their voices to the chorus of concern.

Parents Julian and Kate have three children who have autism.

Mrs Edwards said the youngest was diagnosed in September last year and had not yet accessed any NDIS funding.

“My eldest who is 13 now was diagnosed at four years old. There was no level, such as mild or severe, given then. You are just told your child has autism,” she said.

“The whole NDIS system is already confusing enough.

“My biggest peeve is the Federal Government blows its trumpet saying it is helping people with disabilities but it is so complicated, there are so many waiting for help and so many more are totally confused about what can be accessed and how.”

Australian Bureau of Statistics data for 2015 shows an estimated 1 per cent of the Tasmanian population – more than 5000 people – have autism.

Nationally, 164,000 Australians lived with autism in 2015, up 42.1 per cent from 115,400 in 2012.

The ABS said alterations to clinical diagnostic criteria applied in 2013 and differences in questions identifying those with disabilities in the 2015 survey could have contributed to the increase.

The NDIS said if any changes were made to the lists, the decision would be informed by research and evidence and only made following extensive consultation with key stakeholders.

Originally published as Families concerned at possible changes to NDIS funding for autism