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Crikey
Crikey
Health
Amber Schultz

Should NDIS funding and reform be an election issue? Richard Hamon’s story leaves little doubt of the answer

For the past 18 months, 63-year-old Richard Hamon has fronted the Administrative Appeals Tribunal (AAT) fighting for more funding under the National Disability Insurance Scheme (NDIS). 

Legally blind due to a degenerative genetic condition, what he wants is simple: money to travel to major cities for vision assistance assessments, assistive technology to help him use his computer, and to keep living independently — working, gardening and bushwalking.

But in 2020 he was granted $25,080 a year in NDIS funding, not even enough to cover the cost of trips to Melbourne for specialist appointments. He took that decision to the AAT to be heard in front of an independent third party. 

External lawyers contracted by the National Disability Insurance Agency (NDIA) have been fighting Hamon’s request across 10 separate directions hearings. In one case, lawyers were contracted to check a cost estimate of less than $50 — finding a $2.38 discrepancy.

As revealed in Senate estimates, there’s been a 400% increase in people with disabilities disputing their NDIS plans in the AAT; last year it spent $17.3 million on external legal firms — an increase of 30% on the previous year.

Hamon has yet to have his case heard by a tribunal member and said he hasn’t been provided accessible audio documentation as requested. Instead he is expected to read thousands of pages of hearing notes or have them read to him by a volunteer. 

He cannot afford assistive technology, so he has developed spinal problems from hunching over his computer. 

“It’s an excessive, depressive, stressful and anxiety-ridden process,” he said. “I’m afraid it will shorten my life significantly.” 

Thin market limit assistance 

Hamon lives in Devonport, in regional Tasmania, with his wife, Dorota. Maintaining his independence is extremely important — the couple love bushwalking and have a large vegetable patch they enjoy working in. He wants his wife to continue living independently and working as a laboratory manager for the Education Department rather than becoming his full-time carer.

“[It would take] her livelihood, interests, superannuation, career — it would take everything from her,” he said.

There are not enough disability workers in the area, he said. Occupational therapists have eight-month waiting lists and Hamon needs blindness-trained specialists to assess him for assistive technology. That requires travel to Hobart, Launceston and Melbourne. 

And there is not enough NDIS funding to cover transport costs and disability workers to accompany him. In the past decade he’s had to visit the Launceston Eye Institute 18 times, travel to Hobart 16 times in five years for botox treatments to ease vision-impairment-related migraines, visit occupational therapists to help him with balance, neck and shoulder injuries, and seek a specialist assessment on the rate of degeneration of his vision and reports on what supports he’ll need. 

He said the trips have cost him thousands of dollars.

The NDIA rejected his request to have funding to travel to Melbourne to be assessed by Vision Australia, arguing the Tasmanian government should provide that through the patient travel assistance scheme — but state representatives argued the NDIA should cover the costs.

Hamon said Dorota has had to take time off work to drive him to appointments, but they can’t afford to lose her salary: “The essence of the NDIA has been to force my wife to give up work. Family and friends are expected to do all the heavy lifting that the NDIS was brought in effect to do.”

The delays in assessment added to the stress of the tribunals and have caused Hamon’s physical and mental condition to deteriorate.

Taking it to the tribunal

Shortly after receiving his initial NDIS funding plan, Hamon applied for a review in the AAT where he met HWL Ebsworth lawyers contracted by the NDIS. Between 2020 and 2021, HWL Ebsworth received nearly $4 million across five contracts with the NDIA. 

Between July 2021 and March this year, 4656 people with disabilities applied to be heard by the AAT, 80% of which were for review of funding-support decisions. Most reviews take more than four months to finalise.

In more than half of all cases, the tribunal rules the decision should be changed — but that’s if the applicants can get in front of a tribunal member. Just 2% of applicants have their cases fully heard; the rest reach agreements in closed-door meetings with the NDIA’s lawyers.

This is problematic for two reasons: first, only 20% of people with disabilities have legal representation in these meetings, creating an imbalance of power. Second, there are no test cases or public outcomes of these decisions, meaning other people on the NDIS can’t use the agreements to support their cases. 

In many cases the funding being debated is much less than the amount paid to NDIA lawyers. This is true for Hamon. He’s coming up to his 11th directions hearing — a closed-room discussion between him and the NDIA where both parties present evidence — without having his case heard by a tribunal member. 

For one trip to Melbourne to visit Vision Australia specialists for assessment, Hamon calculated it would amount to $45.39 in per-kilometre driving costs to get him from the ferry to a nearby hotel for a medical appointment. A senior associate at HWL Ebsworth was contracted to check this and, after debating toll roads and parking costs, found it would cost $43.01 — a difference of $2.38.

HWL Ebsworth declined to comment for this article.

Deteriorating while waiting 

While before the AAT, Hamon’s NDIS plan was changed three times more as a result of the tribunal’s review. Although his funding was more than tripled, he didn’t accept it because it still didn’t cover assessments by Vision Australia. His only option was, again, to dispute the plan in the AAT.

“If you sit back and do nothing, it sets a precedent for every new plan. You have no choice,” he said.

Hamon also asked that the nearly 900 pages of documents submitted by the NDIA’s lawyers be provided to him in audio format with a separate recording for each document. As of this month, the NDIA said through its lawyers it “intends to produce” audio files. Requests to have emails sent to him in large, bold font have also been ignored on multiple occasions.

This, Greens Senator Jordon Steele-John tells Crikey, isn’t uncommon: “I’ve heard stories where the NDIA have called people who cannot use a phone, they’ve demanded a written reply from people who are unable to type, and they are not giving people adequate warning of meetings so people are not able to organise the support they need.”

“The NDIS is supposed to enable disabled people to live our lives, not cause further harm and distress.”

Across the 18 months Hamon has been fighting — without the cash to get assessments for assistive technology — he has developed a number of illnesses: severe neck and shoulder pain from hunching over his computer with a magnifying glass working through documents (an MRI scan showed parts of his spine have narrowed, putting pressure on the nerves in his neck); stomach pain; and he is now being tested for ulcers. He also says he suffers from PTSD and gastrointestinal issues worsened by stress. 

His psychologist has attested Hamon’s mental health has deteriorated significantly since 2019 because of depression, anxiety and stress, as well as his increasing lack of independence which affects his relationship with his wife and his quality of life.

“I don’t know how much more of this I can take,” Hamon said. “This has made me ill. After every directions hearing I go into a meltdown condition and it takes me days to recover. I’m afraid this will shorten my life significantly.” 

The NDIA told Crikey it does convert documents into accessible formats when submitting them to the AAT and is providing “significant funding” to Hamon with the highest level of transport funding provided to him.

“The agency has and continues to work with Mr Hamon to assist him with his accessibility requirements,” it said, but it didn’t respond to requests about value for money over legal fees.

Hot-button election issue

The NDIS has come under scrutiny during the election campaign. Labor has a six-point plan to fix it, pledging to crack down on rogue providers. (Anthony Albanese’s failure to remember the six-point plan briefly became a campaign ‘gotcha’ moment.) Labor and the Greens have pledged to reduce the staffing cap in the NDIA, put more people with disabilities into leadership positions, and address the growing number of people taking their packages to the AAT. 

The Greens have also pledged to remove the age cap, which is currently set at 65, while Labor’s NDIS spokesman, Bill Shorten, vowed a “blitz” on outstanding NDIS matters at the AAT and will implement a panel of experts to review plan cuts.

Although the Coalition has largely avoided talking about the NDIS, extra funding has been announced for advocacy and legal support for people with disabilities. NDIS Minister Linda Reynolds told Crikey the NDIA continued to make “decisions in line with the criteria set out in the NDIS Act“, which, she added, was Labor’s legislation, and that the government was working to cut red tape built into its original design.

This article has been updated to reflect the fact Richard Hamon will remain on the NDIS after he turns 65.

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