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Family's long struggle to maintain NDIS care for Indigenous teenager

Jarred Cross -

A South Australian mum says "every day is a ticking time bomb" in a battle to maintain proper care for her son under the NDIS.

15-year-old Indigenous teenager Chad was diagnosed with autism as a child.

While Chad was once able to go to school and socialise, his mother Nicole and stepfather Stjepan have witnessed a severe deterioration in his well-being in recent years.

Despite Chad suffering from hallucinations and attempts at self-harm, including suicide attempts, the family has been unsuccessful in their plea for an expanded diagnosis.

Following a public incident in 2021, Chad suffered what Nicole and Stjepan believe was a traumatic hospital experience sparking a downward spiral.

Chad and his family had previously managed with two full time carers, with a third now required in recent years, with annual costs exceeding $1 million.

Nicole says the additional help has made a significant difference to her son's life - putting an end to a string of stints in youth detention caused by public incidents related to his mental health.

The NDIS is intended to provide appropriate case-by-case budgets to purchase approved support.

However, Nicole said the NDIS Quality and Safeguards Commission and South Australian Department of Human Services have regularly pushed back on allowing the level of care to continue with freezing and red tape placed ahead of allocated funds becoming a regular occurrence.

It meant keeping Chad at home has become a constant battle.

Nicole told National Indigenous Times families like hers are "sitting ducks" under the NDIS, while she fights the "hierarchies of the system" for what she sees as the only answer to protecting her son.

A young Chad (right) and his brother at a football supporting their beloved West Coast Eagles. (Image: supplied)

She said the hurdles stem from the NDIS and SA DHS being "hellbent on getting rid of my providers" and allocating their own registered providers for what she said is a cost-cutting measure.

It's left Nicole asking "where is my choice and control?" to keep her son at home with the carers she trusts and who have built a relationship with Chad.

"My carers are my angels," Nicole said.

Nicole has been made to fight claims her own care for Chad amounts to 'restrictive practices' creating further barriers to being a carer herself.

"They're saying that as much as putting your arm around him (Chad) walking in the street is a restricted practice…that's ridiculous," she said.

Nicole and Stjepan believe their unwillingness to go along quietly with the system has contributed to their issues securing the funds required for Chad's care.

They said they have previously been told their funding is never guaranteed.

"I am a pain in their ass because I want to keep my son alive," Nicole told National Indigenous Times last month.

"I'm fighting their bloody hierarchies…It'd be easier for them just to scoop him up and throw him into a facility than keep him at home with his family. He's only 15. He's only a child."

In recent days, Nicole was preparing to admit Chad to hospital in Adelaide and taking a sleeping bag with her to stay by his side out of concerns he would suffer nervous and violent outbursts without her there.

The situation arose as Nicole refused to take on registered providers put forward with allocating funding running dry.

Funding was topped-up on Monday - meaning a narrowly avoided crisis for Chad's family and, in-part, ending an anxious wait.

Chad's case is currently in front of the Administrative Appeals Tribunal.

The hearing is scheduled for the end of February, though Nicole is convinced her circumstances could change again at any second.

"Every day is a ticking time bomb. At the moment, there's no restrictions on the carers, but tomorrow, next week, it could change," Nicole said.

"Anything can change…and history's proven it….So, for the next three weeks, I'll be walking on eggshells until we get to the tribunal.

"Everything's up in the air. I live day by day through this whole bubble of NDIS mess.

"And poor Chad, you know, if he ends up in the hospital system. Well, I'm right there with him because he's still my son and I'm not gonna leave him there."

Nicole and Chad. (Image: provided)

Nicole said being under the NDIS can be a "living nightmare" and feels for families who might be in a similar situation.

"You can't just go into a family home, and dictate how we should be living with our loved ones. If our loved ones need support, help us keep them at home. Don't set the families up to fail."

A National Disability Insurance Agency spokesperson told National Indigenous Times they will continue to work with Chad and his family "to ensure he receives the support he requires, in line with the reasonable and necessary approved supports".

"The NDIA is generally unable to comment on individual cases before the Administrative Appeals Tribunal," the spokesperson said.

"The NDIA continues to support participants to access the disability-related supports they need while plans are undergoing review and until the matter is resolved.

"While a participant's plan is designed to ensure continuity of support across the life of their plan, the NDIA can and does take steps to act should a participant face a critical shortage with their NDIS funding where there is evidence their circumstances have changed."

Nicole and Stjepan believe with proper and constructive care for Chad he can be living the best life possible, and not be "a burden on the system" by age 18.

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