Cancer patient’s struggle to get NDIS help for his son

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The mother of an eight-year-old boy with severe autism detailed her “grueling” administrative battle for NDIS funding while recovering from breast cancer as her son grew physically aggressive.

Carly, a single mother who asked that her last name not be used, spent months fighting for a review of her national disability insurance plan to pay for help to care for her son disabled while recovering from invasive surgeries, chemotherapy and radiation therapy. .

Carly wants to make sure that other caregivers with life-threatening illnesses don’t have to go through a stressful NDIS battle.Credit:Pierre Stoop

Lincoln, who does not speak, had never been violent before his diagnosis but “his behavior started to change when I got sick.”

“I have over 50 cuts and bruises on me… I’m just not mentally and emotionally able to handle being physically assaulted as I try to fight for my life,” she said.

Carly was approved for NDIS funding for a support worker for just five hours a week to help her with Lincoln, although she was hospitalized for a week after her first surgery in July and several follow-up procedures, as well. than chemotherapy and radiation therapy.

“I was coming home from chemo to take care of a kid who was kicking, scratching and biting me,” she said.

After using most of the respite funding from her program for this year to make sure Lincoln can be looked after while she was in treatment, Carly said, “Now we’re out of money because they did not fund any day to day supports after surgery ”.

“They had all the documentation, but they just gave us five hours a week,” she said.

When Carly asked for a reconsideration of that decision, she said it was ignored until she told the National Disability Insurance Agency she was speaking to Labor MP Meryl Swanson.


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