Informed consent is an essential pillar of modern day medicine. All adults have the right to deny medical treatment, even against the advice of experts. However, people that refuse treatments, regardless if it is reasonable to do so, might encounter an additional peril that may not be immediately apparent. In order to access the NDIS, people have to prove that their disability is both likely to be permanent and significant. If they have refused any treatment that could potentially improve their functional capacity, then they are unlikely to be able to access the Scheme, due primarily to the way the permanency criterion has been interpreted by the NDIA and Administrative Appeals Tribunal (AAT). This raises serious questions about the risks we are forcing people take to their health, under the subtle coercive threat that they could be left without any support.
The NDIS (Becoming a Participant) Rules say the applicant needs to have exhausted all “known, available and appropriate evidence-based” treatments. A lot of the time, this approach makes sense. When a person slips a disc in their back, they can temporarily require significant support to live an ordinary life. But with physiotherapy, exercise and, in the worst cases, surgery, the person is likely to no longer need support in the matter of months. It would be inappropriate for the NDIS to become involved before all these options had been explored.
However, for many people, their future support needs are far less clear. The prime example comes from the area of psychosocial disability. In December 2017, the AAT ruled that a man’s post-traumatic stress disorder (PTSD) could not be deemed permanent because he had refused additional medications that his psychiatrist recommended. Another applicant, in January this year, sought to access the Scheme with PTSD, anxiety disorder and major depressive disorder. He was denied access as a result of not following up on a recommendation from his psychologist and general practitioner to see a psychiatrist to explore medication options. This is despite his psychologist being of the opinion that while medication might offer him some additional management resources, it “would not alter the permanency of the applicant’s condition.” The applicant had not seen a psychiatrist because he could not find one willing to bulk bill
Medication avoidance is a well documented phenomenon in mental illness. People with significant mental illness can thus find themselves stuck in a cruel Catch 22: where their disability makes them less likely to seek treatment, but they cannot get support for their disability unless they engage with treatment.
While the NDIS Rules state that a treatment must be “appropriate” and “evidence-based,” the major issue here is that it has been left up to the Agency or the AAT to decide whether the potential benefits outweigh the risks, not the person who will actually undergo the treatment.
In July 2018, an applicant with a spinal injury had his appeal for access rejected by the Tribunal after refusing surgery. He stated that he was concerned about the potential for the procedure to leave him with a lower level of functioning than he currently has. Granted, in this case the AAT also felt he had not taken advantage of an exercise program offered to him. But the sitting member also said he was obliged to weigh the applicant’s concerns about surgery against the “expert advice” of his specialist. In another case, an applicant’s achilles tendinosis was deemed not permanent because he had not properly explored surgical options. This is despite his specialist cautioning that the results of surgery are “somewhat mixed.”
Outside of the AAT, there is further evidence that the Agency is denying people support because they have not attempted potentially dangerous treatments. Last year, SBS obtained written proof that people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are being rejected from the NDIS because they have not tried Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). These are both exceptionally controversial treatments. The major study that recommended GET and CBT as a treatment for ME has been described in the British parliament as “the biggest medical scandal of the 21st century,” after evidence emerged of results tampering and undisclosed vested interests. More importantly, not only are the positive impacts of GET seriously questionable, patients regularly report their condition worsens significantly after undergoing a graded exercise program. At times, this relapse has proven to be irreversible.
An important caveat of this article is that people with the above disabilities should not be discouraged from applying for the NDIS. There are many people in the Scheme with these conditions. However, applicants and their advocates need to be conscious that evidence submitted does not discuss treatments that the applicant is not willing to try. Moreover, if they have refused a treatment, they need to be ready to argue why it was not “appropriate” or “evidence-based.”
All of this raises one obvious question: why is the Agency fighting tooth and nail to keep people with significant disabilities out of the Scheme for reasonably refusing treatment? The permanency criterion is fixed in legislation. But the way it is being interpreted is somewhat unreasonable.
We can no longer ignore the fact that there have been people who have been unfairly denied access to the NDIS. It is our duty in these early days to ensure that these access flaws are not engrained into the fabric of the Scheme. During the NDIS rollout, we have a unique opportunity to act. And we must do so, before the dust has settled and it is too late.
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