Autistic teens caught in middle of NDIS funding dispute
Autistic young people are caught in the middle of a showdown between the federal government and the states and territories over the future of disability support.
One of the most vulnerable and crucial periods for a person with autism is adolescence, as they navigate a world of changes and the transition to adulthood.
Eliza Tait, who was diagnosed with autism at age 14, describes it as having to take on a full-time self-advocacy role.
“I really went through that period of struggle,” the now 18-year-old actor told AAP.
“Part of autism was that I really struggled with my emotional regulation.”
The challenges can become too much for Eliza and many others like her, and the college student eventually finds herself hospitalized for anorexia.
“When you hear the same story over and over again and policy can stop it, it’s truly heartbreaking,” he said.
The federal government announced in April that it plans to remove or divert 350,000 people from the National Disability Insurance Program by 2031.
Autism accounts for the highest participation rate in the program, which has received assistance from more than 300,000 people, most of whom are under 18 years old.
In response to a three-day Senate inquiry into NDIS changes during the week, state and territory leaders downplayed their responsibilities, saying some disabled people may not be able to access services at all.
One of the few agreed disability support programs outside the NDIS is the state-run, federally co-funded Successful Kids programme.
Targeting the highest NDIS recipient group for autism (children under eight), Thriving Kids does not require a diagnosis and prioritizes family-centred, community-based supports for young people with low to moderate support needs.
Although widely welcomed, the scheme only applies to children aged eight and under, leaving a dangerous gap for those who still need support.
Lauren Stracey, chief executive of advocacy group Youth Action NSW, said it was unclear what services would be offered to young people who age out of Thriving Kids.
“We know that disability does not go away when a child turns nine,” he said.
“In fact, major transitions during adolescence, such as starting high school and changes in ways of socializing, are some of the most important times to have the right supports.”
While federal and some state governments have said support from outside the NDIS will be available, reluctance to take responsibility for funding has created uncertainty.
In May the NSW government refused to accept bipartisan recommendations from a parliamentary inquiry, including that it develop and fund dedicated pathways for children aged nine and over who qualify for disability support.
The proposal to place supports in schools was not supported by the government, and in some cases it was stated that the services would be provided together with the schools.
Ms Tait, who gave evidence on behalf of the Youth Movement at the NSW inquiry, was disappointed with the government’s response.
“We’re actually talking about some of our most vulnerable kids, and so we were really hoping to see more impact from this,” he said.
Ms. Tait said funds saved in the short term would be repaid later when others like her relied on the services to get through an avoidable crisis.
“Without disability support, we’re seeing our mental health system really shoulder a lot of that burden,” he said.
“And without that early intervention, you’re really harming people’s chances in their most vulnerable years.”
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