“TALK to families” is the plea to experts reviewing how Autism is treated under the National Disability Insurance Scheme from the Bonnyrigg Heights mother of two autistic children.

Grace Fava, who is also the Autism Advisory and Support Services president, is concerned the real picture of life for people on the autism spectrum and their families is being lost and the only way to overcome this is true consultation.

“Don’t just talk to families who have high functioning kids, talk to those who have to relinquish their kids,” she said.

“High functioning kids have their own set of issues, but low functioning kids end up, not with broken families, but shattered families.”

The National Disability Insurance Agency has engaged Professor Katrina Williams to evaluate guidelines for the management of autism spectrum disorder in early childhood and Mrs Fava urged her to consult widely on the issue.

Mrs Fava said the impact on families and individuals dealing with Autism and mental health issues had long been inadequate, but a government brave enough to tackle the subject would have a positive impact on society.

“These are grassroots issues that cause problems in the education system and the justice system later on down the line,” she said.

“If we don’t fix those issues, we’ll continue to throw good money after bad.”

An NDIA spokeswoman said two main issues had been identified for the NDIS in relation to mental health and Autism.

“These are how best to assess the functional impact of these conditions (particularly those that are intermittent or context dependent in nature) and how to determine an appropriate level of early intervention funding particularly for children with Autism Spectrum Disorder,” she said.

While Professor Williams works on issues relating to Autism, Former WA Mental Health Commissioner Eddie Bartnik is investigating ways to better serve people with mental health diagnoses through NDIS.

“This work is in its infancy at this stage as people with these diagnoses are only now coming to trial sites for access to the Scheme,” the NDA spokeswoman said.

“Consultations are in progress in both Barwon and Hunter to inform and continue to refine the approach required to achieve participatory outcomes for people with mental health diagnoses.”

While Mrs Fava hopes to see the situation improve for people on the autism spectrum and with mental illness, she worries the issue will be put in the too hard basket again.

“They’ve known this is a problem for 30 years,” she said.

“It’s been fobbed off and fobbed off, but it really is worth fixing.

This article first appeared on Fairfield Advance on 1 August 2014.