Like many Aussie blokes, Jacob Hughes loves cricket, a swim, and brewing beer.
The 31-year-old is a wheelchair user and lives with developmental delay, cerebral palsy and uses assistive technology to communicate.
His mum Linda helps employ staff he chooses to support him around his home in regional New South Wales.
"We train them precisely in how they need to support Jacob and his unique needs," she said.
"We have a direct influence on the culture of the team [around Jacob] and it's very individualised to what he's wanting from his life."
Jacob's roster of six support workers is funded by the National Disability Insurance Scheme (NDIS) but are not formally registered within the scheme.
It's common practice and has been a long-time feature of the NDIS.
For Ms Hughes, it's meant flexibility in selecting who comes into Jacob's home, which he shares with a housemate next door to her.
But in recent months a recommendation from a review into the NDIS that all services providers need to be formally registered has worried parts of the disability community.
Back in 2022, Ms Hughes told the ABC about the importance of having the right supports around Jacob and often having to fight for them.
She's now concerned the personalised care model that's helped Jacob thrive and live an active, independent life may soon have to be rewritten.
"There's a lot of people with disability and families who have created very individualised, very inclusive and very safeguarded support arrangements through using unregistered providers," she said.
'Imagine the outrage'
Provider registration might sound uncontroversial, but it's been one of the most talked-about recommendations from the NDIS review, which in December called for a total rethink of disability support in Australia.
Any changes would have significant day-to-day impact on the $42 billion scheme's more-than 640,000 participants.
Many with concerns about compulsory regulation worry about the effect it could have on the choice and control — concepts at the heart of the NDIS — that participants have over how and from whom they receive support.
Those in favour say it would help protect more vulnerable participants by making sure there are more rigorous checks and balances.
However, most agree the status quo — where people with disability are harmed at rates much higher than the rest of the population, often in unregulated environments — cannot remain.
Inclusion Australia CEO Catherine McAlpine said universal enrolment would be an important safeguard, particularly for people with disability "without friends or family looking out for them".
She said greater visibility would mean regulators know who providers were, are able to contact them and can hold them accountable.
"It would stop them taking advantage of people with intellectual disability by maybe offering them inducements like iPads, and to come into an arrangement ... where there's unsanitary or unsafe conditions, or where people are being drawn into situations that involve fraud without knowing.
"These systems are much more likely to be caught if we have universal visibility — and these are situations where people are currently being harmed."
Ms McAlpine said similar safeguards already existed elsewhere in society.
"I've been a basketball coach for my son for years, and to do that, I got a working with children check. I don't feel like I need one, but obviously if I want everyone to be safe, then I will put myself up to be checked, as well as expecting everyone else to do the same.
"You could imagine, if we had [186,224] unregistered teachers, the outrage that would cause."
She said registration was "not about overburdening small providers with red tape", but "keeping people safe".
Ms Hughes said she supported "a light touch" system and agreed some settings, such as group homes, needed greater regulation.
But, she said, "intentional and well-thought out" arrangements such as Jacob's "shouldn't have to be wrapped up in bureaucracy".
'Opportunity for reform'
The federal government this week introduced legislation paving the way for the first tranche of reforms to get underway.
Nothing is happening right away, or without more consultation with the disability community.
In terms of registration, the government has set up a specific taskforce to consult with the community before a system is finalised, co-led by disability advocate and lawyer Natalie Wade.
Ms Wade said safeguards and choice and control were not mutually exclusive and she was confident a registration process that balanced both could be found.
"The NDIS review highlighted that the current system does not work," she said.
"There is a distinct opportunity for reform to ensure that people with disability have choice and control but that they exercise that ... in a safe marketplace that advances their human rights."
The registration taskforce is expected to report to the government with advice and recommendations in mid-2024.
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2024-03-27 20:48:39Z
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