Why Aussie Women Aren’t Claiming Their Disability Benefits

Australian women are all too familiar with the concept of the glass ceiling. That invisible barrier, purposely built by those in power to keep us in our place. As a disabled woman, I’ve experienced the familiar feeling of smacking face-first into that invisible, impenetrable, barrier. But I can't help but picture not just a ceiling, but a tall, steep glass staircase in front of that ceiling.

So as we celebrate International Day Of People with Disability (on December 3), it is my hope that we shine a light on the injustices Australia's disabled women face — dismantling the glass staircase, one step at a time.

But where we really need to start, is at home. Recently, it was revealed that women and girls make up just 37% of people on the National Disability Insurance Scheme (NDIS). That's right, the groundbreaking, world-leading NDIS, which was supposed to deliver equality and inclusion for all people living with disability in the country, is leaving many women behind. And the inequality in the NDIS is making all the other issues for women with disability, from employment to health, justice and education, so much more inaccessible. So, how did this happen?

Essentially, access to the NDIS is won or lost on information from the medical system. A system that has, from the beginning of time, not believed, taken seriously or been run to benefit women in general, let alone disabled women.

For example, the largest chunk of NDIS funding goes to people with conditions like autism — the same conditions that continue to be significantly under-diagnosed in women. That's not because 'Autism is a thing only boys get'. Scientific research is increasingly showing that women and men experience Autism at similar rates, but that gender biases in testing and girls feeling societal pressure to hide or "mask" their autism behaviours from an early age have meant that far too many women have gone undiagnosed and continue to miss out on the support they're entitled to.

Secondly, the medical conditions the NDIS are least likely to fund are the ones women experience at a much higher rate than men. A study published last month on women’s experiences accessing the NDIS conducted by five of Australia’s leading disability and women’s health researchers noted that conditions like chronic fatigue syndrome affect women more than men, which has been contributed to the medical profession continuing to downplay their severity. “Given the gender bias in the diagnosis and treatment of pain in women, it may be harder for them to obtain the extensive evidence required for disability support claims,” the study stated. 

Finally, another, mostly overlooked, reason why many women don’t access the NDIS is we’re just too damn burnt out to fight another system that was built to work against us. The NDIS requires every ounce of my advocacy skills to get my needs met, and I’m a professional disability advocate. The scheme requires people living with disability to argue our case to multiple strangers, every couple of years, convincing them of what support we need, why we need it, why we can’t get it somewhere else and why we can’t go without it. And they don’t just take our word for it. 

My recent NDIS review required ten separate, detailed reports from doctors and allied health professionals, which meant organising ten doctors appointments, attending ten separate appointments, advocating for my needs ten separate times, just to get those ten letters written before I’ve even made it into the Zoom waiting room to begin the two-hour NDIS review meeting. It is a full-time job managing my NDIS plan and many women with disability I’ve worked alongside rightly point out that they already have enough unpaid full-time jobs — from caring for kids to aging parents — to pick up a new one. So it’s easier to just leave the NDIS access form on the kitchen table to gather dust until next year.

So, can we fix it? Well, let’s be really clear about one thing — as much as the federal government wants us to believe it, you don’t fix the NDIS for women by cutting funds to the NDIS or taking away choice from people with disability. In fact, those changes hurt women the most. Equality in the NDIS really starts with listening to disabled women. Women with Disabilities Australia has spent years calling for an NDIS Gender Strategy that is based on consultation with women with disability, but, so far, the federal government has done nothing. 

That’s why it can’t just be women with disability talking about this anymore. That’s why on this IDPWD, it’s time for all Aussie women to pick up a chisel and make a crack in the glass staircase.

Share this article. Talk to your colleagues, friends and family about inequality in the NDIS. And if you’re really feeling fired up, send the federal NDIS Minister Linda Reynolds an email asking her to fund an NDIS Gender Strategy.

Because, as the saying goes, a thousand small cracks in the glass… and that damn staircase comes crashing the hell down!