Annette Andersen says NDIS needs common sense in housing her autistic son for her safety

Annette Andersen loves her son, Axel, but she can’t live with him. An NDIS housing flaw has trapped her in an impossible situation, facing danger every day. See the video. Warning: Graphic

Exclusive: A mum struggling to care for her violent 190cm autistic son says a lack of common sense by NDIS bureaucrats means she may have to force her disabled daughter to move out for her own safety.

Annette Andersen’s 20-year-old son Axel lives with severe autism and has the developmental age of a toddler. Her daughter Imogen, 18, lives with an intellectual disability.

Her son’s unpredictable outbursts means they’re living in constant danger.

She said until Axel is approved for suitable accommodation, it might be better for her daughter to live elsewhere.

Axel currently has $550,000 of NDIS funding, some of which is to fund shared out-of-home accommodation.

Axel Andersen, 20, has severe autism and an intellectual disability, as well as a painful condition known as “Man on Fire Syndrome”. Picture: Supplied

But his mum said any participant sharing a home with Axel would be placed in danger, and besides, the nearest vacancy is 250km away.

And, with his history, she doesn’t think anyone would take him.

“It’s all well and good saying he should live in shared accommodation, but find me a provider that is registered who would take on a violent 6ft 3 inch [190.5cm] man who weighs 107 kilos,” Ms Andersen said. “All that would happen is that he would end up being chemically restrained.”

She said a previous attempt at Axel living in shared accommodation when he was 13 saw him returned to the family home two years later obese and with a scar from his wrist to his fingertip.

Ms Andersen said a two-bed granny flat in her garden where Axel could live with a support worker, close to his family, would be the best option.

Axel’s disability is complicated by a rare pain condition, called Erythromelalgia, also known as “Man on Fire Syndrome”, which leaves his limbs feeling like they are self-immolating.

There is no cure or treatment, other than to keep him physically cool and emotionally regulated.

Annette Andersen says her son Axel is a “sweet soul”. Picture: Supplied

Ms Andersen said while Axel is a “sweet soul” who likes to play with dolls and feathers, when he has a pain episode he lashes out at the nearest thing or person, believing that’s the cause of it.

In the past year, Ms Andersen has been bashed, kicked and throttled by her son, with police attending on several occasions.

“How would another high needs NDIS participant know not to touch, brush or make a noise around Axel, as any of those things can set him off?” she said.

Meanwhile, she is worried about Imogen, who has risked her own safety to stop Axel bashing her mother and been hurt in the process.

“I saw him with a fist full of hair and hitting and smacking Mum over the head, forcing very hard, fast hits with his bare hands, while she was screaming out in pain and fear, telling me to call triple-0,” Imogen said of the latest attack last Sunday.

In the past year, Annette Andersen has been bashed, kicked and throttled by her son, with police attending on several occasions. Picture: Supplied

Annette Andersen’s daughter Imogen, who lives with an intellectual disability, has risked her own safety to stop Axel bashing her mother and been hurt in the process. Picture: Supplied

While Axel’s NDIS money for accommodation is not being used as he is living at home, he also has funds for carers and things like cleaning costs, as he often spreads faeces across walls and furniture, and urinates all over the house.

Ms Andersen, who is at breaking point, has been asked by the disability agency to get another occupational therapist report to assess Axel’s accommodation needs, when she believes there’s enough evidence for anyone with “common sense” to approve him for his own accommodation.

“Despite everything, I can’t give up on him,” Ms Andersen said. “At the same time, what is the agency waiting for, my death certificate?”

A spokesman for the National Disability Insurance Agency said Axel has “significant NDIS funding available”, including funding for a robust two-bed Specialist Disability Accommodation and high-intensity Supported Independent Living.

“These decisions were based on the available evidence,” the spokesman said.