“They rely on this scheme”: NDIS changes impact autistic community
This years reforms to the NDIS could have wide-reaching consequences for those with autism and their families.
For years, Rachel Jackson was worried about her son’s future.
Diagnosed with level two autism and verbal dyspraxia by age three, Nick Jackson struggles to communicate and requires significant support in his daily life.
Today, the 16-year-old is doing many of the same things as his twin brother, including gaining an education and learning life skills at Northern School For Autism.
“This special school is amazing, can’t fault them on how they support him,” Jackson said.
Jackson said many of these opportunities would not have been possible without funding from the National Disability Insurance Scheme (NDIS).
As the Federal Government prepares to introduce major reforms designed to reduce the $46.2 billion dollar cost of NDIS, families such as the Jacksons are watching closely.
This includes changes to costs, fraud and eligibility assessments with the goal of cutting 160,000 participants off NDIS supports.
Some of these changes include: diagnosis lists as a means of entry, tightening the boundary between the NDIS and mainstream services, and establishing a Technical Advisory Group to assist the government.
While Nick is expected to remain eligible for support, advocates fear thousands of Australians with a disability may lose access to services that help them participate in education, employment and community life.
Chris Templin, manager of community partnerships at the autism advocacy organisation, Amaze, was not surprised the government wanted to see participant numbers reduced.
“Unfortunately, it does mean that individuals and families are going to be carrying the responsibility for some of the system design flaws the NDIS has,” Templin said.
Amaze began 60 years ago to support and advocate for autistic Australians and their families.
Amaze
Chris Templin and his team at Autism @ Parliament earlier this year.
Templin’s job is to ensure individuals do not slip through governmental policy cracks.
Through Amaze, he has seen a majority of the autistic community and their advocates who are concerned about functional capacity assessments as the new entry process.
“It will be a one-on-one interview that looks at somebody’s functional capacity, and we’ve got lots of concerns about that interview and that process,” said Templin.
According to Templin, needs for autistic people can fluctuate due to unpredictable life changes such as a family member passing away or losing a job and this new process could impact their only access to support.
“It would be a really clever thing, I think, to be able to quickly adjust the planned budget so that additional supports can be wrapped around that person so they don’t fall through social safety nets rather than having to have them enter and then exit the NDIS,” Templin said.
The government will introduce state-wide programs to help individuals who no longer qualify for the NDIS, but there is concern they will not fit the needs of individuals or be available in time.
“There’s 160 odd thousand people who’ve played by the rules and have accessed the scheme and decided to get life-changing supports, who will now probably be released out to state-based systems that aren’t ready,” Templin said.
Jackson said without the access and support Nick receives on a daily basis his behaviour and functioning could have looked a lot different.
“It’s really hard to tell how he would have developed if he didn’t have it,” Jackson said.
“He’s improved, but it’s very slow growing.”
The Jacksons adopted strategies at home to assist Nick including a rigid routine, lists and picture exchange communication system (PECS) cards. His ongoing therapy has improved his language skills, making it easier for the family to understand his needs and demands.
Without these, Nick would have violent outbursts leading to broken windows or lashing out at his mother.
“It can be very challenging at times but that’s part of it for a lot of people,” Jackson said.
Although she is not concerned about Nick’s position in the NDIS, Jackson does hold concerns for her nephew with a lower level of autism who requires NDIS support, but may not continue to receive it.
Jackson said these governmental changes mean family members are fighting more than ever to see their loved ones receive supports they desperately need.
“Like anything, if you want to access something, you have to really advocate."
