Man with chronic back pain rejected after declining operation his doctor said had only 50% chance of success

This article is more than 1 year old

This article is more than 1 year old

Australians are being denied access to the National Disability Insurance Scheme because they have declined to undergo invasive surgery or take psychiatric drugs.

Under NDIS rules, a person must have a permanent condition and there must be no “appropriate evidence-based clinical, medical or other treatments” available that would be likely cure their condition.

Administrative appeals tribunal decisions reveal cases where claimants were rejected despite having what one advocate described as “reasonable” causes to decline treatment.

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“Informed consent is a medical principle,” said Disability Services Consulting’s Sara Gingold, who reviewed the eligibility decisions.

In one case, a disability pensioner who developed chronic back pain after a work accident was rejected for failing to adequately explore surgery.

The man uses a walker and occasionally a wheelchair and said he had difficulty using the toilet and could not shower himself. He declined invasive surgery after he said he was told by the surgeon operating that it would only have a 50-50 chance of success and carried a risk of exacerbating his condition.

“They were knocked back from the NDIS,” Gingold said.

Other cases reviewed showed people were rejected because they had not accessed treatments which they said they could not afford and which they told the tribunal were not available in the public health system. This included those who said they could not afford bariatric surgery or to see a psychiatrist.

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In one decision, a tribunal member said the NDIS Act made no reference to whether a person could actually afford the treatments they were required to try before accessing the scheme.

Gingold acknowledged it made sense that participants should be required to seek treatment.

But she said they also had the right to decline those that were more controversial, which carried side effects they did not want to encounter, or which they could not afford.

The cases reviewed by Gingold represent only those applicants who have taken their case all the way to the tribunal – a tiny fraction of overall rejections.

Peak mental health bodies have previously expressed concern that people with severe mental health problems are regularly barred from the NDIS, with data showing more than one-third of people have been rejected.

Allie, who asked for her surname to be withheld, now has access to the scheme. But not before what she described as a “24-month ordeal”.

“One of my previous specialists had mentioned putting me onto Ritalin,” she told Guardian Australia. “I had refused to take that because it wasn’t a drug that had proven effectiveness in chronic fatigue syndrome.

“The assessor basically cherry-picked that out of a report as a reason for denying me access.”

Allie appealed her decision all the way to the administrative appeals tribunal. A week before the hearing, the NDIA “finally conceded” and granted her access, she said.

“I don’t think it’s right that you need to take a medication specifically when it’s not even prescribed for your condition in order to get government benefits,” Allie said.

Gingold said the legislation needed to be made clearer so participants could gain access to the scheme while exercising their rights over their own medical decisions.

“It’s the most basic thing, what you put in your body, and you should have control over that,” she said.

The National Disability Insurance Agency referred questions to the Department of Social Services.

A spokeswoman for the department said: “To be eligible for the NDIS, a person must have a permanent disability that significantly affects their ability to take part in everyday activities, or have early intervention requirements, such as developmental delay.

“Requiring NDIS participants to have undertaken appropriate medical treatment ensures the NDIS only funds reasonable and necessary supports for people with a permanent disability at the level that remains after treatment.”