Jamie Gibbings-Johns was a poster boy for the National Disability Insurance Scheme (NDIS) when it was rolled out across Victoria in 2017.
In a promotional video from the state’s health department, he proudly shows off his new unit.
“He was excited because he got to live on his own, and he had those supports in place,” his sister, Emma Ebery, said.
Mr Gibbings-Johns, 30, has multiple complex disabilities that affect his cognition, emotional regulation and ability to perform daily tasks.
The NDIS has made it possible for him to live independently for the first time — fulfilling his main goal in life. But that’s now under threat.
“The whole purpose of the NDIS is that no person with a disability is left behind,” Ms Ebery said.
“While we have the loophole of providers being able to just step away, that risk is there.”
Mr Gibbings-Johns is one of 430,000 Australians on the NDIS.
Up until three months ago, he received the bulk of his support from the Kyneton disability provider Windarring.
The provider dominates the local market in the town, which is about 90 kilometres north of Melbourne and 60km south-east of Bendigo.
But in early February, it gave notice that the 30-year-old’s services would be completely withdrawn.
In correspondence seen by the ABC, the family was told the move was in Mr Gibbings-Johns’ “best interests”.
Ms Ebery said the COVID-19 pandemic had sent her brother backwards, and long-standing behavioural and incontinence issues had become worse.
“He’s not the only person who lives with a disability who has some behavioural concerns, who has some continence issues and needs support in all those areas.
The provider’s chief executive, Vicki Poxon, told the ABC in a statement that “hygiene issues” at the 30-year-old’s home “were an unacceptable risk to everyone”.
“Jamie lived on his own and he was meant to be learning skills to live a more independent life, but he refused to clean up his mess,” Ms Poxon said in the statement.
She said the provider had not breached its practice obligations around continuity of care.
“Windarring offered for [its] … current Disability Support Worker to work at least an extra two to three months in an independent capacity until the family employed another service provider.”
Ms Ebery lodged a complaint with the NDIS watchdog, the Quality and Safeguards Commission.
“We felt like Jamie was being blamed for having disabilities,” she said.
It was not the first complaint to be lodged in relation to Windarring.
Kaye Atlas contacted the Quality and Safeguards Commission in early 2020, after her son Tim, who lives with Down Syndrome, arrived at his day program only to be told he was not welcome.
“The team leader at the time walked into the room and in front of staff and the other participants said, ‘What is he doing here?'”
The 31-year-old’s service agreement had expired a day earlier.
Ms Atlas had written to the provider asking for a new one, but had not received a response.
She said her son was also prevented from attending the Christmas concert he and his friends had been working towards throughout the year.
Ms Atlas said she had routinely questioned the provider’s financial decisions in relation to her son over the course of the year, and raised concerns about over-charging and transparency.
In her complaint to the Commission she said the suspension felt like retaliation.
“I do believe that they had Tim targeted because I questioned the figures earlier on,” Ms Atlas said.
The provider said it did not breach practice standards in relation to Mr Atlas.
In a statement, the chief executive Ms Poxon acknowledged that it had received a complaint in relation to its treatment of Mr Atlas, but said that the Commission’s investigation had delivered “no adverse findings”.
But his mother said she has received no outcome letter or contact from the Commission to indicate the matter was closed, despite the requirement to do so under the watchdog’s complaints rules.
“When is somebody going to sit up and listen?” Ms Atlas said.
The ABC is aware of at least half a dozen separate complaints made to the Commission in relation to the provider over the past 18 months.
In another, Deb Golden reported having services withdrawn after she complained that broken steps on the provider’s bus had caused her son Jack to fall and injure himself.
No disciplinary action against the provider has been recorded on the NDIS Commission website.
In a statement, the NDIS Quality and Safeguards Commission acknowledged that it was “aware of complaints regarding this provider but could not comment on individual complaints, investigations or compliance activities that might be underway”.
The spokesperson said the Commission took all complaints it received seriously and “regularly used information from complaints to determine if providers were meeting their obligations”.
This week the disability Royal Commission will turn its attention to the scheme’s 20,000 providers, and the way in which the Quality and Safeguards Commission responds to complaints against them.
Senator Jordon Steele-John is on a parliamentary committee examining the watchdog’s effectiveness.
He said evidence to the committee so far had “painted the picture of a commission, which was focused on gradual service, and quality improvement, and accreditation of providers, rather than investigation and enforcement”.
The inquiry’s first hearing in September revealed that between July 2018 and June 2020 the Commission had received 5,784 complaints.
One fine was issued in that period, to Integrity Care — the provider that employed South Australian woman Ann Marie Smith’s sole care worker.
The care worker was later charged with manslaughter over her 2020 death.
“You cannot investigate, you cannot enforce without the capacity to do that,” Senator Steele-John said.
“And that is still quite evidently what the Commission is lacking.”
In a question on notice to the committee, the Commission revealed it had just 21 dedicated investigators across the country who were responsible for enforcement.
That workforce has since increased to 31 and there have been a further 14 fines issued since July.
“In addition to investigators, as at May 13, 2021, the NDIS Commission has 177 officers located nationally across our complaints and reportable incidents function,” a Commission spokesperson said.
It’s not enough to reassure Emma Ebery — or her brother Jamie, who remains in his home with the help of his mum and an independent contractor.
“We still don’t have a sustainable solution,” Ms Ebery said.
“Because there are no other options, there’s nothing in the local area that we’re able to get in place.”
She said access to services “depended on your postcode”.
“And for our situation, that’s very little.”
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