Below is a Q&A with Annabelle Oxley, a disabled transgender woman from Australia. She describes some of the challenges & issues she faces with the NDIS (National Disability Insurance Scheme), the government program that funds disability-related services for a large number of disabled people in the country. Thank you for sharing your story with me, Annabelle!
Tell me a little about yourself!
My name is Annabelle Oxley. I’m a 26 year old transgender woman with Cerebral Palsy, I’ve been working in various volunteer capacities in the queer community since I was about 21 when I cut my teeth doing an internship at a LGBTIQ+ youth group called QSPACE on the Gold Coast as a volunteer assistant. I also was a part of the first big push for what would become the National Disability Insurance Scheme (NDIS) at around the same time. I got my Bachelors in Psychological Science in 2015 and a Graduate Certificate in suicide prevention as part of my first year of a Suicidology masters. I changed universities in 2017 after I started my transition in late 2016.
During 2017 as a result of basically a lack of accessible services I ended up sleeping in my chair 2-3 days a week for 6 months in order to try to find a safe place to live (my parents who were my carers at the time after I’d moved back home after living on campus for my undergraduate degree weren’t coping well with my transition and because they lived in a remote place, there was no one else available to do my personal care). Tensions were high and a LGBT community organisation accidentally outing me to my care agency and their attempts to help just highlighted a lack of intersectional knowledge and infrastructure in both communities. So these days I try to create that infrastructure that would have saved me so much stress and emotional anguish by bridging the knowledge gaps in both communities by teaching people how to create accessibility and acceptance within both communities. Most recently I was the accessibility officer for Queer Collaborations last year, a national LGBTIQ student conference. I’m reachable via email at firstname.lastname@example.org.
For those outside of Australia who are not aware, what is NDIS and what is it supposed to do for Australians with disabilities?
What the NDIS is at its core is a system of funding for people with disabilities which allows them control over their lives by providing them with a sum of money which they are then allowed to spend, on approved providers, services and equipment. It was designed as a direct response to the lack of individual agency and flexibility present in the old system.
Under the old system in my experience you were allocated hours, usually out of block funding (a giant stack of money, which included the wages for carers and management costs for x number of hours paid to various select agencies) for something you needed. Each separate area of need was funded separately. For example, personal care could be allocated X amount of hours while community engagement would get funded out of a separate block for Y number of hours and equipment purchase and maintenance would be handled by a separate yet connected scheme. These funds were in turn allocated to a single provider for each area of need by the state disabilities service (major providers would usually have attached services like physiotherapy, etc.). You were then obligated to use the funded agency to get the hours you were allotted and you couldn’t change it easily at all. This could result in situations where you could have one provider for all of your hours or as many agencies as you have different types of support funded. With respect to equipment, the scheme could only be used to fund certain pre-approved models of things like chairs and you’d usually have a gap over a certain amount which you had to pay. Either through other funding or out of pocket.
The amount of funding you got depended a lot on what their perception of your needs were. This usually meant that the more independent, or integrated in the community you were seen to be the less you got overall. Any equipment is funded through the subsidy scheme. You basically have to spend it all to show you needed it by the end of the term (otherwise it was taken as an indication you were overfunded). You can imagine the lack of agency and choice this usually caused. The NDIS was designed to be individualised, flexible and client-driven funding to allow for more choice and a greater degree of freedom for disabled Australians, but it’s not.
What are some of the current budget and service issues regarding the NDIS and government programs like Centrelink?
What ended up coming out of the old system were unsustainable monopolies, agencies that usually specialised in certain conditions and through that specialisation got by default all referrals relating to those conditions and the funding for doing so. This led to bloating and overcrowding on their end which was only sustainable as long as they were bolstered by a consistent stream of block funding. With the introduction of client-driven funding which was conditional to customer satisfaction that model has largely crumbled under its own weight. This caused a mass exodus of these companies as a flood of potential clients entered the now emerging open market.
This has lead to one of the bigger issues with the NDIS, the underfunded yet simultaneously over budgeted nature of it combined with a lack of oversight has created a wild west type environment. The expected influx of clients who had NDIS packages created a swath of smaller companies specialising in various aspects that the NDIS covered as well as a mass exodus of experienced professionals from larger organisations to either smaller companies or to act as what is probably best described as individual freelancers. The factors I’ve described above have created an across-the-board shortage of staff which, as pressure has increased, has impacted the quality of training staff receive as capacity to take on clients has become more important than the quality of service provided.
The NDIS on the whole is so large and dense that it’s nearly impossible to cover it all, but the issues covered here are having such a deep impact on the systems around them. With so many delays and subjective approval decisions resulting in people not getting the funding they need with no real accountability or reasoning provided so many people are being left in limbo. Combine this with a welfare system that actively promotes isolation by denying disabled people in relationships benefits they need, when long waiting lists and impossible standards allow disabled people to get them at all, it paints a grim picture of the state of Australia. The NDIS has the potential to be amazing but with so many people left without equipment or funding with nowhere to turn it’s hard to be positive.
This is all happening as many state funded supports like the Taxi Subsidy Scheme, which provides half price fares for wheelchair users for accessible cabs are living on borrowed time. The only replacement under the NDIS at this stage is a 220 dollars a fortnight maximum travel payment which won’t provide the same coverage. Also, the short term transitional funding extensions to the Taxi Subsidy Scheme currently keeping it afloat won’t last forever. When it goes, a lot of people’s mobility will be slashed, so it’s a dark time for a lot of disabled Australians for many reasons.
For transgender disabled people, what are some specific challenges or problems they face when accessing care? What have you personally experienced?
The main issue has been stigma from both sides. A lot of LGBTQIA+ spaces just aren’t equipped or accessible for disabled people and so very often neither are the services they offer. On the other side the competitive fast paced nature of the current care agency landscape makes a lot of them view LGBTQIA+ training material as an unnecessary cost. This becomes an issue for disabled transgender people because when it comes to personal care we are especially vulnerable to abuse. We, as disabled people, are often thought to lack the inherent right of privacy that a lot of abled people take for granted. What this looks like is very often our bodies and identity are seen as secondary. For me that means living in a constant state of anxiety and uncertainty. This is because often I can’t predict how carers will react because outside of a few select people they will never have interacted with transgender people before and that means they only have stereotypes to go off of. I have had people be shocked at my lack of bottom surgery. Fear and anger have been reactions I’ve experienced as well.
What makes this worse is that the Primary Condition Rule (which allows only one medical condition to be funded through the NDIS) works with the lack of the LGBTIQIA+ friendly infrastructure to create a Don’t Ask, Don’t Tell type of situation where you as a transgender person can’t actually identify yourself as trans when looking for supports or equipment. It becomes problematic especially if you’re medically transitioning and need to manage interactions between your disability and the hormones for example, because any request for anything that mentions that as a factor would be denied. One that I’ve struggled with is gaining access to bone density scans, despite it being required by my NDIS-funded physiotherapist for weight bearing. I can’t get any real traction because I can’t mention why it’s an issue for me in particular. Disabled transgender people don’t even really have a way to figure out if it’s an issue we should worry about because honestly there’s no knowledge base and that’s hard.
A big issue on the horizon is how the religious freedom debate that is occurring in the wake of the legal recognition of same sex marriage in Australia. We are already seeing a lot of reports of elderly LGBTIQIA+ people being subjected to abuse and neglect and being forced into the closet about their identity in this country. With that in mind I feel it’s particularly worrisome to have this debate going on when considering the impact right of refusal of service on religious grounds (which is potentially on the table at the moment) could have on those that need care. We really need to put in the work on both sides to provide a true safety net for sexually and gender diverse disabled people which means safeguarding our rights against these potential attacks.
As a transgender disabled person, what kinds of experiences have you had with disability service providers? What kinds of training and competence do these providers need to have with the LGBTQIA+ population and other diverse populations?
My experiences honestly have run the gambit so much from great, to fine and then some that are absolutely awful. A lot of that comes down to issues of ignorance, things like deadnaming, misgendering and just having people not know what to do with me are common ones. This very often leads to substandard care because these agencies, which are already having staffing issues, are unequipped to educate their staff which leads to issues on the ground. This can be as simple as misgendering and awkwardness to something as serious as not being able to shower or being injured because they were too nervous. We need LGBTQIA+ friendly training to ensure our rights and to give us what the NDIS was always meant to offer, freedom of choice and most importantly the right to live as our authentic selves.
Is there anything else you’d like to share with me?
I just want to drive home that this is an issue that has impacts across both communities and intergenerationally. So many LGBTQIA+ elders are currently stuck in situations like what I have described. This is an issue of basic autonomy, which all disabled people deserve regardless of your opinions on the LGBT community. People in disabled and queer communities must look within and strengthen their ties with our marginalised members and stand united against this threat to our safety.
We must create spaces where our voices can be heard. In Brisbane the best example of these spaces is Here We Queer, an orgnisation founded by the wonderful Phoebe Le Brouque and Tayla Lauren Ralph (two amazing queer women and allies to the disabled community–look Here We Queer up on facebook, Youtube or email them at email@example.com to offer support or learn more) who strive to consistently create accessible, LGBTQIA+ friendly events and their example and others like them must be followed. It means uplifting strong disabled voices, both in Australia and internationally to speak out. Most importantly though it’s about moving beyond the bare minimum, the bare minimum of care, the bare minimum in how we campaign for LGBTQIA+ rights and what we expect for ourselves.
I encourage anyone to reach out within our communities to learn how to fight for true equality. It’s a long, hard, tiring fight but we can’t be silent anymore, so much of the privacy that protects the able bodied is denied to us and it’s time we got that protection too.
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