“What is your primary disability?”
“I’m deafblind.”
The NDIS planner looks down at a form and back at me.
“No, which is your primary disability. Does your vision or hearing affect you more?”
I consider the absurdity of attempting a road crossing using only one sense when it’s already enough of a challenge with no vision in my right eye or hearing in my left ear. It’s already a task I perform with hyperfocus to keep myself safe.
I speak through the scenario out loud then give a final answer.
“Neither. Both. I’m deafblind.”
“The form says I need to list something there.”
When a bill that will pave the way for sweeping reforms to the national disability insurance scheme (NDIS) passed through parliament on Thursday, it was a knockout blow arriving a couple of weeks after the devastating government response to the disability royal commission, accepting just 13 (out of 222) recommendations in full.
I am exhausted.
Four-and-a-half years of sustained advocacy through a royal commission, an independent review into the national disability insurance scheme, two inquiries into the NDIS amendment bill, plus more. But it feels as though we’ve barely been heard.
One in five. That’s how many people in Australia are disabled. That is around 5.5 million people with disability that the reforms will affect. The last quarterly report by the NDIA indicates that amendments to the NDIS alone will affect 661,000 participants inside the scheme.
Yet the recent steps have taken us further away from everything we put on the table, from how violence, abuse, neglect or exploitation affects our lives to what solutions could be brokered with people with disability at the table, rightly providing input and expert advice on the design, implementation and evaluation of reforms.
As a person with disability, I fear for my own future now that the NDIS bill has passed through parliament. The splitting of my deafblindness into two discrete categories, as though there is no interaction between them, has already been attempted. What can I expect from a yet-to-be-designed “needs assessment” when there is no firm commitment to designing and implementing it with input from the disability community?
The failure to address my needs with a “whole of person” approach is disconcerting for someone who already has a complex interplay of health conditions. I experience eye pain from glare sensitivity, sensory fatigue and corneal blistering, compounded by severe menstrual-cycle eye pain, alongside widespread endometriosis pain, with anxiety thrown in, caused by navigating the wider world’s obstacle course with limited senses.
Alongside the bill, the list of proposed NDIS supports has a disproportionate gendered impact. I worry about how changes might limit my community participation and safety, if the narrowing definition of supports continues along that gendered trend.
During my first NDIS planning meeting, an argument ensued over funding transport specifically related to attending Auslan classes at a community centre at night. If I wanted to use public transport, I’d have to cross a park at night that does not have a reputation for being safe for a woman on her own, let alone one openly identifying as disabled by carrying a white cane. I was told that the request for transport was “personal, not disability-related”. I pointed out it was an intersectional risk as a woman with disability, reeling off the statistics for violence against women with disability. The person in charge of my plan was unmoved.
I would eventually get that funding in the next plan, and was told it had been an “administrative error”. It had been thought that my mother, living 2.5 hours away, might provide the transport for me.
Although the reforms will change the lives of all 661,000 participants in the scheme, if there’s a hope that I have left it’s for a seat at the table for what comes next. I want to ensure my human rights, listed under the United Nations convention on the rights of persons with disabilities, are upheld.
I want an NDIS that meets my needs as a woman with disability without leaving me in fear by stepping outside my front door, or trying to manage debilitating pain from my complex disability and health conditions inside it. I’m putting my hand up, once again, to ask to be seated at the table with decision-makers to right an egregious wrong.
Jane Britt is a disability policy consultant with direct lived experience of deafblindness. She has contributed to the NDIS review and the disability royal commission
