Annual Review of NDIA Services

I do an annual review of NDIA services every year and everyone I’ve ever spoken to has always been kind, welcoming, understanding and helpful. The individuals who work within

the NDIS that I have come into contact with have had the right attitude in attempting to get the need supports to the people who need them, whoever I’m hyperaware that this is likely not the case for everyone.

• I am a parent. As such, in the NDIS’ eyes I am not the disabled person they serve; my child is.

Adults who are personally dealing with NDIA representatives may very well find they are not treated the same way I am, due to prevalent ableism that continues to be fraught throughout

the world, leading people to inherently believe disabled people are automatically less capable and many of those who work with us to become infantilising and condescending as a result.

• It could very well be a coincidence where the people I have interacted with just the best the NDIA has to offer and it was a fluke they were the ones who happened to interact with

me.

• The problems I consider to be of highest priority comes not from the culture of the NDIA, but the people who control what the NDIA can and cannot do. It is not the fault of the assessors and management teams who liaise with the disabled community when, no matter

how obvious it is the person needs and deserves assistance to have their UN mandated Human Rights respected, the powers controlling who gets that assistance ties their hands.

There are so many people needing help and not getting it because they are not meeting

arbitrary criteria developed by politicians who are not disabled, after being informed by doctors and psychiatrists who likely also, are not disabled. As an Autistic ADHD parent,

teacher and academic, I am hyperacutely aware that my life expectancy is significantly lower

than the general population. 90% of those assigned female at birth who are intellectually and/or developmentally disabled will experience sexual assault in their lifetime. 49% experiencing 10 or more incidences. I fall in the latter category, also having internal muscle

damage as a result that I would need surgery to correct.

I have my hands in so many different arenas: teaching, academia, writing, merchandising, professional learning and public speaking; all in a desperate attempt to give me back ups for my back ups because as an Autistic, it is almost impossible to keep a job where no one

understands you and you’re the problem. I know I am on a ticking clock; that I can only hold out so long before I say or do the wrong thing that loses me my job and I go back to the

poverty stricken childhood I desperately clawed my way out of, losing job after job and

• getting kicked out of university degrees when I had no idea at that point why I was the way I was. I maintain this manic productivity because if I don’t and I lose it all, there’s no

Centrelink or NDIA to help me. “You’ve proven you can work so get another job” and “You should have saved more”. Meanwhile I also can’t get life insurance and income protection higher than the bare minimum through my super because “you’re more likely to have mental

ealth issues“. SIR, do you not think the inability to protect my family in the event something happens to me gives me just cause to have mental health issues?

It’s very clear the people at the top making these decisions know nothing about what it is to be disabled and even if they do, the heightened socioeconomic status would still mean they have no idea about what it means to know full well that you have to choose between not working and dying sooner of exposure and starvation through homelessness, or dying a little less soon from chronic illness and burnout due to working through disabilities to meet the expectations of society until your body and mind finally give out completely. In both cases, you’re still dying at a significantly younger age than those around you, all while they say “You’re fine. Just try harder.” Then when it all comes apart the government will use your death (if they acknowledge it at all) as a reason to promote their mental health agenda, failing to acknowledge and refusing to recognise their choices were the reason they occurred; that it was a symptom of the current structure of society, instead blaming the fact you were disabled, further pushing the tragedy narrative instead of just doing their damn job and levelling the playing field. No, far easier to push the ‘disability is the reason you’re dead’ than to acknowledge the lack of effective support and the level of prejudice we face to actually make genuine and authentic societal change that would keep us alive, happier and healthier for longer.

I can’t get access to NDIS for all the reasons I’ve listed above. Despite needing it, despite knowing I’ll die younger, despite knowing when my body goes into decline I’m going to have to push through it for as long as I physically can to ensure my family can have the best possible chance of managing without me once I’m gone. The most outrageous part about it is that I likely wouldn’t need NDIA support if the world wasn’t so hostile. A small consumables budget for sensory protections. Psychiatric appointments being paid for to maintain medication access and mental load relief for things that will become overwhelming if ignored (though I feel everyone everywhere should see a therapist just to vent at least once every six months. Even the most well adjusted person would benefit).

• Work from home options, light filters with dimmer switches, removal of racist, sexist, and ableist codes of conduct and dress codes under the guise of ‘professionalism’. These would make working so much more accessible to so many disabled people, to the point many would no longer be on disability pension and NDIS budgets would likely be so much smaller due to those natural supports already being in our environments.

You get that through education.

For every medical, psychological, sociological educational degree at university, when you are studying certain conditions or cultures, you should automatically have access to people with the lived experience. A guest presenter, a co lecturer, an additional workshop; something that ensures the physical information these professionals are getting is accurate and honours the lived experience of those with the conditions and/or living those cultures. This also provides a new revenue stream and business model for disability advocates and educators, as so many learning modules are developed by people making money and building businesses by sharing information about us, and more often than not, they’re getting it wrong, spreading misinformation and harming our communities further.

Disabled people deserve those spaces, and the idea we are less credible than our doctors, parents and teachers remains an unfounded claim in many studies. We should not be expected to work for free by advocating for ourselves, only to be dismissed that our experiences doesn’t count for everyone AND denied access to other forms of work due to ableist social structure designed to keep us out. If your learning programs on disability are not informed by disabled people, it is worthless.

Every workplace should have disability training delivered by disabled people and the SBS cultural competence model should be made as mandatory as a tax file declaration when you start a job, attached to your USI so any employer can look you up to see if you’ve done it or not. This has the triple effect of ensuring every workplace is prepared to support disabled employees, reduces the mental load currently on disabled people of having to declare their need and actively fight for accommodations, and again, creates revenue for disabled people in these roles.

Parents need to start being held accountable for their children’s welfare, particularly at school age. “There’s nothing wrong with my kid” or “I don’t want them to have a diagnosis” should not be appropriate answers. If a school is recognising a child needs supports, then they have the responsibility to inform the parents while simultaneously providing the

• necessary supports regardless of them not having a diagnosis yet.

If the parents are not following up on getting their child the diagnoses required to gain official supports from the school and the NDIA, that counts as medical neglect and should be dealt with accordingly.

No child deserves to be labelled a problem because parents and/or schools don’t want them labelled with something far more effective in getting the needs of that child met.

To that end, we need government programs that get us more psychiatrists, more psychologists, more school counsellors, more therapists and programs that make all of these things more accessible. Phone appointments, diagnostic centres in universities, chat alternatives for therapy with licensed professionals (which also makes the industry more disability accessible FOR disabled therapists), shorter waiting times, full Medicare rebates for assessments.

On the NDIA’s end, if a person is recognisably disabled upon intake, but you’re not sure what it is, the first priority for the funding should go to paying professionals to help them find out. The financial barriers to diagnoses are creating barriers to people getting the help from the NDIA that they need.

These are not cultural or capability problems the NDIA has in those working there, they are systemic problems that only those at the top and in control can fix. I’d start with making sure you fill a roundtable with disabled people every time an NDIA decision needs to be made.

Wherever decisions that effect us are being made, we should be there, and our voice should carry weight. No non-disabled person should be paternalistically controlling our fates. I know I just spent a solid 2 pages on how much I overwork myself to the detriment of my personal welfare, but I would absolutely be available to be involved for that.