Does the NDIS discriminate against the chronically ill?

29 / 08 / 2016

By Naomi Chainey

As the NDIS struggles to sort out its flawed administrative processes in the infancy stage of the national rollout, certain applicants have noticed another flaw in the insurance scheme – a flaw that facilitates systemic discrimination against people with invisible chronic illness, the majority of whom are women.

The NDIS is designed to support those most severely impacted by disability, and as such, two lists have been developed.  List A sites conditions that allow applicants to be fast tracked onto the scheme.  It’s short, including deafblindness, severe cerebral palsy and amputation of two or more limbs – people who should undeniably be supported.  List B is longer, and consists of conditions which have the potential to make people eligible.  For example, some people with Parkinson’s disease will be deemed eligible, if they can provide supporting evidence of their needs as an individual from treating doctors and specialists.

Then there are conditions which appear on neither list.  People with those conditions may still apply for the scheme, but face the additional burden of proving the condition itself eligible. Conditions notable for their absence include myalgic encephalomyelitis (ME), fibromyalgia, lupus, chronic lyme disease, dysautonomia and ehlers-danlos syndrome.  All invisible. All potentially debilitating (people with any of these conditions can be long-term housebound).  All under-researched.  All disproportionately affecting women.

Notably, what these conditions also lack are well-funded lobby groups to fight for their inclusion when schemes such as the NDIS are being developed.  Lack of funding unfortunately compounds lack of funding in disability support circles, and this is not the first time that people with these conditions have been forced to jump through additional hoops to gain the support they are entitled to.

There are gaps in our health and welfare systems.  Gaps which begin with widespread cultural scepticism.  The “but you don’t look sick” factor that leads to resentment and judgement when the chronically ill dare to exhibit illness behaviour.  People are abused for using disabled parking spots, even with their permits clearly displayed.  They lose their jobs when colleagues complain that their schedules – adjusted to manage fatigue and pain – are unfair on the rest of the workplace.  One friend, whose concentration lasts longer if she has her feet up (it assists circulation) was recently subjected to a furious rant over the inexcusable rudeness of using a footrest at the office.  People frown in confusion when you refer to yourself as disabled, and give the disapproving eye if you indicate you need support.

When your disability is not obvious to the eye, accommodations can be viewed as outright offensive, making it difficult for the invisibly ill to participate in the workforce, and even more difficult to justify idleness when work becomes a physical impossibility.

The knock on effect of culturally minimising illness that can’t be seen is a disturbing lack of research funding, making these conditions invisible, not just to the eye, but to the system.  If a culture does not prioritise an issue, neither will its government, which in turn leads to poor medical knowledge and lack of training for allied health professionals.  Patients too ill to leave their beds can find themselves facing the scepticism of badly informed doctors, who then fail to communicate the true impact of illness to welfare providers, leaving patients without appropriate treatment or the financial support they need to maintain basic quality of life.

Raising the profile of these conditions could help matters enormously, but fundraising for PR is somewhat difficult when you’re struggling to secure basic necessities and too exhausted to shower, and so the vicious cycle of ignorance continues.

One of the greatest barriers to gaining services while chronically ill is a quirk of the system where, even when no cure is available, if there is a slim chance that you might at some point recover, permanence of disability (required for most supports), can’t be proven.  Realistically, the best most chronically ill people can hope for is good management, and if a few people recover, we have no way of predicting who, or how many decades it might take.  Still, claims for support are continuously denied on this basis.

Being part of an ME support group has been eye-opening regarding the impact of this. “I’d been sick for 16 years when I first applied for DSP [disability support pension],” Jade Barclay remembers.  “Apparently they wanted a round 20 before they believed it was long-term.”

It doesn’t help that every man and his dog advertises “cures” for chronic illness.  Vitamins, positive thinking courses, yoga, floatation tanks, detox kits … everyone who might make a buck from the hopes of the impoverished ill is out there having a go, leaving those assessing support claims with the impression that if you haven’t recovered yet, it’s because you haven’t forked out for the right treatment.  Indeed, chronically ill people must list the unproven ways in which we have tried to cure ourselves on the DSP application form, proving a long term monetary dedication to pseudo-science before being deemed worthy of money for bills and groceries.

Another frustration is the effort involved in completing the application process.  “I actually had to improve before I could apply,” Jade points out ironically.  “I had about an hour of concentration a day for a few years running, it wasn’t enough to wrap my head around it.”  As impaired cognitive function, or “brainfog”, is a common symptom of many invisible illnesses, the application process itself becomes a discriminatory exercise.

And now, those in the NDIS trial sites are beginning to report back with rejection letters with the same old justifications.  Kristal Wood, who is housebound without assistance and requires help with basic household upkeep and food preparation, has now been rejected three times.  Assessors have deemed her condition (ME) impermanent, suggesting she try cognitive behavioural therapy and graded exercise to treat it (a multitude of specialists advising against the potentially dangerous use of these therapies can be found here).

The trial sites for the NDIS have been used to test the scheme, and so far it seems to be failing those with invisible chronic illness.  With the NDIS set to supersede existing support programs, the long term implications are worrying.  “It’s disheartening,” says Kristal, “I’d like to fight this. I’m so unwell.  It’s not just about me though, it’s going to affect all of us.”

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