The Sambrookes’ NDIS story.

With the NDIA appearing intent on downgrading funding for supported independent living, the lives of those relying on the scheme are being put at risk.

“The idea put forward by the NDIA that Andrew could live independently with drop-in supports puts him at huge risk of abuse, neglect and isolation.

The NDIS was set up with such strong ideals, it should be better than this.”

Andrew Sambrooke found a house in the same Sydney suburb as his ageing parents, who have cared for him since he was born. The 33-year-old, who has a significant intellectual disability due to fragile X syndrome, had steeled himself for the biggest change of his life and was ready to move in.

This was going to be his home. In September, the National Disability Insurance Agency (NDIA) told Sambrooke that the value of supported independent living (SIL) he may be entitled to receive was $186,421 each year, according to emails seen by The Saturday Paper.

The assessor who came up with this figure, employed directly by the NDIA, made a recommendation for final approval. While this was almost half the current average cost of SIL plans across the country – $350,000 – it would be enough to get Sambrooke settled into his own place.

And so his family started preparations to transition him into his new group home. It would be an intense process – fragile X is a genetic condition that, in addition to intellectual disability, often features developmental delays, anxiety and autism-like behaviours.

But then, earlier this month, Sambrooke was told the NDIA had rejected him from a SIL package entirely. It said he would be better off on his own, despite evidence to the contrary from his treating healthcare professionals.

The person within the NDIA responsible for rejecting Sambrooke’s SIL funding never met him.

“My parents have dedicated their lives to Andrew, but after caring for him for all these years, they physically cannot keep going at the same intensity,” Sambrooke’s sister, Amy, tells The Saturday Paper.

“Dad’s health is rapidly declining, and both my parents have really complex chronic health needs. To have the NDIA reject funding for a group home place for Andrew, which we had all worked so hard to get, is crushing.”

But his is not an isolated case.

There are signs the NDIA has begun to chip away at the $8 billion SIL program as part of a wider push by the agency, and the government, to control the growing cost pressures of the National Disability Insurance Scheme.

SIL is the single largest expense category in the NDIS, reserved for people such as Andrew Sambrooke: those in need of 24-hour care by teams of staff in shared accommodation.

Earlier this year, the agency eliminated the “complex” pay rate for SIL packages and began quietly downgrading other participants from “high” to standard care.

In the wake of this change, one provider of SIL services has had dozens of residents with complex, dual disabilities reviewed since July. Ninety per cent of them have been moved from “high” intensity support to standard care. Another provider manager confirmed that some NDIS participants previously on the “complex” rate were dropped two levels to standard care.

The NDIA did not respond to questions about this practice.

The provider manager says what is so galling about the changes is that they assume complex care can be done on the cheap. “They are the same people with the same needs, but the NDIA has cut the funding. We will be forced to shift our workforce onto a lower level of skill and pay because we can only absorb this for so long,” he says.

This is key: downgrading participants to standard care not only represents a dramatic reduction to the level of care they receive but also the cost of their care – the salary drop for carers is 10.5 per cent.

The NDIA’s own consultation paper about reforming the SIL portion of the scheme notes the “largest drivers of growth [and] plan budget inflation” are “support ratios” and the rate workers get paid.

“This increase in support ratios was most pronounced in participants who were classified as having ‘higher’ needs,” it says.

Data buried in the appendices of the latest NDIA quarterly report states that, in the last quarter, the number of people receiving SIL funding fell for the first time since the NDIS began in 2013.

On average, since 2017, 1500 new people have received funding every three months. But by September, there were 662 fewer people with a SIL package compared with the June quarter.

Although such a drop has never happened before, a spokesperson for the agency said these changes were caused by an issue with the system. They couldn’t say how many plans had been affected.

“This issue is being investigated,” the spokesperson said.

If there was a system error, the public will not know whether this is responsible for all or just some of the 662-person reduction until the next report is published, in three months’ time.

From the middle of next year, if the federal government has its way, NDIS plan reviews, including those for SIL participants, will begin to include independent assessments.

After The Saturday Paper reported last week on the increasing backlash to the introduction of these assessments, NDIS Minister Stuart Robert labelled the concerns “scaremongering”.

“Enough of the politics. Enough of the conspiracy theories,” he tweeted last Saturday afternoon.

But on Monday, Liberal MP Russell Broadbent took to parliament to repeat his misgivings about the independent assessment proposal, which he compared to the “agedcare debacle”.

People with disabilities “should all be interacting by their choice, not by the government deciding what is right and what is wrong”, Broadbent said in the chamber.

Disability advocates remain adamant that the introduction of outsourced, independent assessments will sever participants from their long-term treating professionals and place the power to determine both NDIS access and support levels in the hands of strangers who have met them for just one hour.

Andrew Sambrooke’s independence is one casualty of the NDIA’s budget mission.

While he goes to his part-time job in high-support disability employment three days a week, he has been through extensive travel training to learn the public transport route he uses. Over the years, he’s also been taught to help with basic meals at home. But to do these things, he needs constant support, supervision and reminders.

In the absence of these, he gets overwhelmed, doesn’t comprehend change or simply forgets. He has been persuaded by strangers at the train station to hand over money. The police have had to be called.

“Andrew is a wonderful brother, so it’s hard to speak in this way, but he couldn’t walk into a cafe and order a coffee. He has no concept of money,” says his sister, Amy.

“I can’t have a logical conversation with him, he simply doesn’t comprehend a lot of things … The idea put forward by the NDIA that he could live independently with dropin supports puts him at huge risk of abuse, neglect and isolation.

“The NDIS was set up with such strong ideals, it should be better than this.”

The Sambrooke family is requesting urgent reviews of the SIL funding rejection, but that process takes weeks, often months. Even if the agency concedes a mistake, it may be too late. The housing provider cannot hold a room for Sambrooke indefinitely.

An NDIA spokesperson said the agency “will work with Mr Sambrooke and his family to ensure he has the disability-related supports he needs, including funding for appropriate housing options”.

If the agency rejects the review, though, the Sambrookes face a protracted civil fight. The NDIA has a reputation for being an aggressive enforcer. But it is also frequently found to be wrong – in fact, there is no other government body that fares worse at the Administrative Appeals Tribunal.

The AAT’s recently released annual report revealed almost two-thirds of agreements for NDIS matters that were reached before a finding saw a change to, or complete overturning of, a disputed decision of the NDIA. By comparison, the rate for Centrelink decisions was just 16 per cent.

Kairsty Wilson is the principal legal practitioner at the AED Legal Centre, one of only three organisations to offer free legal representation for NDIS clients seeking to challenge their support plans in the scheme.

While the NDIA, like all other government agencies, must comply with the Commonwealth’s model litigant obligations, Wilson says the agency will frequently stall during challenges in the AAT.

In one matter, a participant with complex and profound disabilities fought a $250,000 plan decision that advocates believed was manifestly inadequate. After 16 months at the AAT, and just weeks before the matter was scheduled to go to hearing, the NDIA settled. The agency agreed to a new plan, for $650,000 a year.

“After we expend considerable resources responding to NDIA’s requests and raising our concerns to prevent delays where possible, NDIA will usually give way at the last moment,” says Wilson.

“This leads us to the conclusion that NDIA may not have been genuine in their opposition to begin with but were simply hoping that the applicant would be intimidated by the legal process and give up on seeking the supports they need to have a quality of life.”

Under the new independent assessment regime, decisions will not be able to be directly appealed. People will be forced to fight broader access or planning decisions in the AAT. Such battles can take years.

These protracted legal fights take a toll. “Unreasonable conduct by NDIA often directly affects our clients’ mental health,” says Wilson, “and clients have expressed suicidal ideation or deteriorated during an AAT proceeding.”

For its part, the agency says that “disagreeing with the results of an otherwise sound and robust independent assessment is not sufficient for the NDIA to fund another assessment”.

Here, in the individual stories of people such as Andrew Sambrooke, and in the scheme-wide narrative of a quest for control and capped budgets and the extraordinary and expensive legal campaigns waged by the agency, lie the seeds of all concern about socalled independent assessments.

These policy fights are, ultimately, about people. And all Andrew Sambrooke wants is a home.