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At the beginning of the COVID-19 pandemic, the virus’ high recovery rate was often touted as a source of hope in an increasingly negative news cycle. But as the weeks have morphed into months, one thing that has become increasingly clear is that a large cohort of people with virus neither recover nor pass away: they simply stay sick.
You may have seen some of the news coverage. The Guardian recently reported that 80% of people admitted with COVID-19 to St Vincent’s hospital in Sydney in March continue to have symptoms 3 months later. These people are often termed the COVID-19 “long- haulers,” a cringeworthy euphemism for what is, in reality, ongoing pain and trauma. Symptoms include debilitating fatigue, brain fog, breathing difficulties, body pain, gastrointestinal issues, and more. Severity of the ongoing illness varies between people and it impacts all age groups. As with many things COVID, we are facing a lot of unknowns. Most significantly, we do not know how long these ongoing symptoms will continue to be a disabling feature of people’s lives.
But what does any of this have to do with the NDIS? On the surface, it seems like the very definition of a health department responsibility. Undoubtedly, post-COVID chronic illness will be a major challenge for our health systems for decades to come. But the influx of a new cohort of people with significantly reduced functional capacity will also be test of our disability support systems. The health system is only responsible for providing medical treatment and diagnosis. It is far outside its scope to deliver day-to-day living support. The NDIS is going to be forced to respond, or else these people will fall into a support vacuum.
Reports of this post-viral syndrome are eerily familiar to me. In 2012, I also fell ill with a virus that I never recovered from. Eventually, I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). To this day I have a significant disability that impacts everything I do. I became an NDIS participant earlier this year, but it was a battle. And I am approaching this system as a person who explains the inner workings of the NDIS as my day job.
The challenges I faced in NDIS access made it very apparent to me that the NDIS eligibility testing process is not working for people with chronic health conditions. I suspect that a large number of people with post-COVID disabilities will highlight this issue even further, perhaps even forcing it into the public spotlight.
ME/CFS and post-COVID syndrome have a lot in common, as prominent scientists are starting to take note. The US’ leading infectious diseases expert and world’s most unlikely sex icon Dr. Anthony Fauci has commented that the syndrome is “highly suggestive” of ME/CFS. What this unfortunately means, is that people with this new illness are likely to face the same difficulties accessing that people with ME/CFS and other chronic health conditions encounter.
The Agency is likely to argue, as they do with many other disabilities, that people with post-COVID disabilities would be more appropriately supported by “other services.” Part of the role of LACs is to connect people not eligible to the NDIS to other services, but that only works if there are services to connect to. For years now the NDIS has dominated Australia’s disability landscape, making these “other services” few and far between. Making the NDIS many people’s only option.
Quick refresher: for a person to be eligible for the NDIS they have to be meet the age requirements, residence requirements and disability requirements or early intervention requirements. The two most important components of the disability requirements are that a person needs to prove that their disability is likely to be permanent and results in a substantially reduced functional capacity.
When it comes to establishing that a disability is “likely to be permanent”, it is rarely clear cut for people whose disability is related to a chronic health condition. To make matters worse, with newly discovered or poorly understood conditions, doctors are often unwilling to attest to the fact that the impairment will be permanent in any given individual case. Even if a doctor is willing to stake their reputation on that claim, the NDIA may reject their assessment.
For all participants, a “substantial functional impairment” needs to be established in at least one of these six domains: communication, social interaction, learning, mobility, self-care or self-management. But this criterion is highly subjective. There is little guidance for NDIA decision makers in the Operational Guidelines or legislation. Anecdotally, I have been told by an NDIA staff member that a person is not considered to have a substantial mobility impairment if they can walk 25 meters on a good day. That’s about the width of four suburban houses, making it difficult to go literally anywhere that is not your neighbour’s house.
The Agency is going to have some tough decisions to make in the coming months and years. Giving people with post-COVID disability access to the NDIS would be a risk. These people could recover in a year, an effective treatment could be discovered or they might regain functional capacity even if they never quite shake off the illness. There are mechanisms the NDIA can use to revoke access, but such a process is a drain on limited Agency resources. However, at some point they are going to have to balance the likelihood of someone recovering against the risk of providing them with no support. COVID-19 and subsequent disability might be a realm of mystery, but the long-term impacts of not having disability supports are not.
If there is a silver lining in what is ultimately a terrible situation, it is the public attention on people with post-COVID disabilities might force the Agency to take a long and hard look at how their eligibility processes fundamentally exclude people with disabling chronic health conditions. Until now, the battle between the NDIA and people with chronic health conditions has largely been conducted in silence. The Agency may now face a turning point: either leave significantly more people stuck without support, or create a Scheme that works better for everybody.
