A Barrack Heights mother is desperate to seek alternative care for her severely disabled son after his current service provider "pulled the pin" on them.
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Elizabeth, who didn't want her surname used, was devastated at Australian Unity's decision to drastically cut the services it provides under the National Disability Insurance Scheme (NDIS).
Her son Brad is funded for 67 hours a week of personal care under the NDIS - and he requires two carers due to his high-care needs.
But we don't know what will happen - we just don't know where to turn now.
The 26-year-old is among an estimated 3000 NDIS recipients from across regional NSW and Victoria who will now have to find new care providers.
Elizabeth believes the decision will impact around 100 Illawarra families who access Australian Unity's in-home care services.
"We got a letter from Australian Unity last Thursday, that told us they would be discontinuing NDIS-funded services in this region sometime in the next 12 months," she said.
"As I understand they will still be operating these services in Sydney, and for Aboriginal clients, so I want to know why they've pulled the pin on us?"
Brad, who has bilateral quad cerebral palsy, has been receiving in-home care since he was three years old - initially from the NSW Government's Ageing, Disability and Home Care (ADHC). Then the roll-out of the NDIS saw all government-delivered disability support services transferred to the non-government sector.
"Australian Unity took over services previously delivered by the ADHC about three years ago," Elizabeth said.
"But the transition ran smoothly because they kept the same workers, who knew all the clients' wants and needs.
"For those like Brad, who has very high needs and requires two workers to deliver personal care, that was vital. And he feels comfortable with them.
"But we don't know what will happen - we just don't know where to turn now."
Elizabeth said her son was a happy young man who understood his limitations and was "content with his life". Yet he did not like change.
"He's been very upset since we got the letter," she said. "The workers feed him, they dress him and look after his toileting - as a young man it can be difficult to have new people come in and do that."
For Elizabeth and her husband it's tough too. "I'm over 60 and riddled with arthritis - I can't attend to all his needs. We've battled all our lives to ensure he gets the best care - and now they just want to hand us over to someone else."
She said she understood that organisations may be struggling to provide services under the NDIS: "Maybe the scheme needs to change if it's not viable for these companies to provide services to those most in need."
Troy Wright, acting general secretary of the Community and Public Sector Union NSW, said the NSW Government had used the NDIS as an excuse to privatise disability services.
"The Berejiklian government's flawed adoption of the NDIS will see Australian Unity withdraw its disability services to 3000 clients," he said.
"Time and time again the CPSU warned the government that outsourcing disability services won't work. Now two years in we see providers putting their hands up and say we can't afford to provide this service.
"If you have a disability in the Illawarra, or anywhere in NSW, you are left to the whims of the market."
Australian Unity 'anticipates' no job losses
Australian Unity will retain a "sizeable footprint in metropolitan Sydney" despite scaling back disability services in regional areas including the Illawarra.
A spokesperson for the organisation stated that following a review of its Home & Disability Services, it would "progressively and carefully scale down the provision of NDIS funded services over the next 12 months in all locations".
"This decision is vital to ensuring Australian Unity can continue to provide high standards of service to its aged care and disability customers, particularly in a climate where Australia's ageing population and need for quality care is growing at pace.
"Importantly, it will enable the company to strengthen its provision of aged care services, which is by far the largest part of its Home & Disability Services business."
Australian Unity and the National Disability Insurance Agency would work closely together to ensure affected NDIS participants experienced a smooth transition to another service provider, and that nobody was left without care during the transition period.
"Australian Unity do not anticipate the decision to scale down its NDIS business will result in any job losses, with affected care workers transitioning their work to providing services to older Australians."
However Mr Wright, of the CPSU, said the union remained "sceptical" that there would be no job losses.
Meantime NDIS participants who received services from the organisation's Aboriginal Home Care business will not be affected.
An NDIA spokesperson said participants would be supported through any transition: "The NDIA will contact participants in the coming weeks to make sure they know who their local area coordinator or support coordinator is and how to contact them, so they can assist with a transition to a new provider if necessary".
NDIS participants with concerns could contact the NDIA on 1800 800 110.