‘Outrageously scary’: NDIS participants fear proposed changes will give them less choice and control

‘Where I am, it is very hard to find support workers that I can get when I need them, and that are value for money’ … disability advocate Jarrod Sandell-Hay. Photograph: Brydie Piaf/The Guardian

It’s not easy to find disability support workers in regional areas, let alone those with whom one can develop a strong level of trust, but over the past seven years Jarrod Sandell-Hay has managed it.

A participant of the National Disability Insurance Scheme (NDIS), Sandell-Hay lives with his wife and their two dogs on the New South Wales Central Coast. The couple are both wheelchair users.

Sandell-Hay receives about six hours a day of personal care under his NDIS plan. This involves a support worker coming into the family home and assisting him in the inescapably intimate environment of his bedroom and bathroom. As a consequence, it’s very important to Sandell-Hay that he can choose who those workers are.

“We’ve had the same workers for years and years now. They’re all very highly professional, highly trained workers. They know us and the people they support,” he says. “Where I am, it is very hard to find support workers that I can get when I need them, and that are value for money.”

Many of them aren’t NDIS registered. But under proposed new legislation, his support workers would be required to register and to undergo audits, risk assessments, and compliance monitoring and more in order to receive payment with NDIS funds. This makes it highly likely they wouldn’t register at all – which would put them out of reach for Sandell-Hay.

It’s a prospect Sandell-Hay finds deeply unsettling. “I just find it outrageously scary that the government thinks that they have a better idea of who should support me in my most private settings,” he says.

The NDIS minister, Bill Shorten, announced in February a taskforce would look at the more than 150,000 unregistered businesses and individuals – compared to about 16,000 registered providers – who provide support, services and care to NDIS participants but who the government “does not have a clear line of sight on”.

The taskforce, which includes the disability human rights lawyer Natalie Wade and former ACCC chair Allan Fels, says it will consult with the disability community and providers before reporting back to the minister.

It follows a recommendation in the NDIS review, released in November, to focus more heavily on and to “improve, streamline and harmonise” screening processes for care and support workers. The legislation includes a proposed four-tier registration system for any provider, with increased administrative responsibilities for those who engage in personal care and other supports that are deemed higher risk.

But people with disability and their advocates have expressed palpable fear about the proposals, including in a new report from Every Australian Counts, which surveyed nearly 1,400 people, 71% of whom were NDIS participants and family members. Some 68% of NDIS participants surveyed disagreed or strongly disagreed with the mandatory registration proposal, with many saying it would block their access to support and remove the choice and control that is a foundational principle of the NDIS.

‘My disabilities are nobody’s business’

Cat Walker, a 35-year-old trained in horse rehabilitation who lives in regional South Australia with her partner, says mandatory registration or enrolment would be a “nightmare” for her.

Walker is a member of the NDIS participant reference group. Walker’s disability stems from a combination of autism, attention deficit hyperactive disorder, and Ehlers Danlos syndrome – a condition that affects the connective tissue of the body, resulting in unstable joints and severe pain.

Mandatory registration of support workers would “block access to the supports I need most, inhibit genuine community connections and my investment in that community, and make me extremely unsafe,” Walker says.

In February, Shorten said the move would give the government more oversight over who was providing services to NDIS participants, and rid the system of “opportunists and rent seekers”.

But Walker fears the forced disclosure of her disability to anyone she paid using NDIS funds would increase her vulnerability, given her relatively isolated home.

“The intimate details of my disabilities are nobody’s business, even if they are largely ‘hidden’ disabilities, yet forced disclosure exposes me to ableist assumptions and speculation and tells the world about my vulnerabilities,” Walker says.

“The more that conversation [about safety] has gone on, it has become very clear to me this is not about visibility of safety and risk, this is about visibility of money.”

There have been more than 220 submissions provided to the taskforce since March and Shorten says public feedback from the more than 1,000 people joining webinars, meetings and roundtable discussions so far has been positive.

“A new regulatory system will mean more workers and providers are willing to sign up and meet the minimum requirements, and will ultimately give participants more choice in the future,” Shorten said in a statement.

“All participants and providers will benefit from the new design, which will ensure the level of regulation matches the risk. We want to see a regulatory system that ensures no one is invisible or forgotten on the NDIS.”

‘Our community is still waiting’

The Greens senator Jordon Steele-John said the minister’s promise to keep disability voices at the centre of reforms had so far fallen short.

In early March, the Western Australian senator criticised the Labor government after reports disability advocates who had been shown proposed changes to the NDIS were forced to sign confidentiality agreements.

“These changes proposed by the Labor government and Bill Shorten are another example of this government’s attitude that they know what is best for disabled better than disabled people themselves,” Steele-John said.

“This legislation will take away choice and control from our community who deserve to be able to work with a support worker they trust and who knows their needs.

“This government campaigned on a promise of genuine co-design, our community is still waiting to see it.”