Jess Harriott speaks out on NDIS saga

A mother, who alongside her son lives with autism, has spoken out about her bureaucratic nightmare battling the National Disability Insurance Agency.

Jess Harriott and her son Will. Picture: Mark Wilson

North Geelong single mum Jessica Harriott describes handling the National Disability Insurance Scheme for herself and her son as a “full-time job”.

Ms Harriott, 43, has autism, while her 10-year-old son William also has the condition, as well as ADHD, an intellectual disability, chronic anxiety and a severe language delay.

“I’m high functioning, my mind doesn’t stop the whole time,” Ms Harriott said.

“Will needs 24/7 care, he can’t dress himself, he can’t wash himself.

“He has the mind of about a six year old … but he’s gotten better with a lot of things.”

Jess Harriott and her son Will. Picture: Mark Wilson

Will joined the scheme, which provides funding for support workers and assistance like speech and occupational therapy, in 2015, and his mum joined in 2021.

But Ms Harriott said dealing with problems with the scheme took her away from meeting goals.

“You can’t be a parent when you’re continually fighting,” she said.

In 2020, Ms Harriott said the level of funding in Will’s new plan wasn’t sufficient for his needs.

Ms Harriott was satisfied with a draft plan received after a review meeting, but then said thousands of dollars was cut from that.

She said she fought the cut at the conference stage of the Administrative Appeals Tribunal (AAT) in early 2021, and Ms Harriott accepted a plan for Will with an increased funding amount.

Ms Harriott said she was told last year she could no longer self-manage her own plan, but was permitted to continue to manage Will’s.

“I was told I was using the money incorrectly and that I’d been using it for items that weren’t reasonable or necessary,” she said.

“It’s just really confusing.

“It’s really hard to get an answer as to what I’ve done.”

An NDIA spokesperson said its priority remained ensuring participants and their families, such as Ms Harriott and Will, continued to receive the disability-related supports they needed.

The spokesperson said the agency would contact Ms Harriott to support the family to ensure there was no confusion regarding their NDIS plans.

“Planning decisions are made on a participant’s projected support needs going forward,” the spokesperson said.

Naomi Anderson, legal practice manager at Geelong-based Villamanta Disability Rights Legal Service, said it had received calls about people who suddenly lost the right to self-manage, with some given absurd reasons and others no reason at all.

“This can be extremely problematic when it interrupts service delivery,” she said.

“Most of these individuals have self-management restored, but the time it takes, and the distress it causes, could be avoided by the NDIA communicating with participants directly.”

It’s understood the NDIA will consider changing the plan type to ensure continuity of support across the duration of a plan if a participant who self manages spends their funding at a faster than anticipated rate.

It may also recommend changing plan types if a participant is found to be accessing supports not directly related to their disability.

Ms Anderson said the toll of funding cuts on participants was “terrible”.

“For those who do continue with the AAT appeal, the process is long and gruelling,” Ms Anderson said.

“We hear the despair our clients experience, and the exhaustion.”

Originally published as Jess Harriott speaks out on NDIS saga