Submission 574
Dear Senate Committee,
I am a person with multiple complex and comorbid disabilities, as are the majority of my friends and loved ones. Some of them are on the NDIS, others like myself are not, as merely applying for the NDIS as the system already is is a huge barrier given our disabilities and the costs involved in doing make the process and burden of proof nearly insurmountable. The support required to even set in the door are out of reach from those who most need it unless they already are on the NDIS – and thus prevent them from applying to get this support. The medical system at present offers very little for the disabled, assuming us to already be on the NDIS. Treatment and support for day to day living is already out of reach for most of us, and those on the NDIS often struggle to receive enough funding for adequate supports. The proposed changes to the NDIS will only make this worse.
I will start with commenting on the application process. At present applications for the NDIS require detailed information about diagnoses which are extremely expensive and thus unaffordable for the frequently unemployed, under-employed and unable to work disabled population. For example, I am autistic but my diagnosis was as a child, under a previous version of the DSM, which included Asperger Syndrome as a category. Modern diagnoses of autism refer to support levels, which I do not have, and as I am on the Disability Support Pension (DSP) and struggle to afford even food I am unable to afford several hundred dollars for a full diagnosis of autism. I can’t afford a psychologist – most don’t bulk bill, and the extremely limited number of Medicare subsidised appointments come with a large gap I can’t afford. Very few specialists bulk bill, and even fewer doing autism diagnoses.
Why is this relevant? Tougher functional capacity tests are going to be an insurmountable hurdle even if by some miracle I can raise enough money for a single psychologist’s appointment. Can you summarise someone’s life in an hour? Particularly someone who has difficulty communicating – which is common with many disabilities? I do not just have autism, I have multiple physical psychosocial and physical disabilities. I’d need to do this for each of them to have the complex and interacting effects on my functional capacity. I can be rendered unable to verbally communicate, read or write through the compounding effects of autism, cPTSD and chronic pain. What information is possible to assess from one single session with someone who cannot advocate for themselves?
I am deeply concerned also as to how this would affect those already on the NDIS, who may also be subjected to inadequate assessment of functional capacity that misses nuance. How much funding is likely to be eaten simply to prove they need to still be on the NDIS? Funding that is vital for someone’s supported daily needs? Is the alternative an hour with a stranger, who will miss details and give a report that fails to capture any detail, and thus wrongly indicates someone to have function they do not have simply through lack of time to actually do a thorough assessment? For that matter will the assessor even be a trained medical professional or simply a bureaucrat who is essentially practising medicine without a licence by making medical decisions for applicants based on forms and paperwork? And how will this in any way be fair with review rights completely removed?
It is difficult enough for many people to receive enough funding to get support with very basic tasks – my partner has such limited funding that he only receives three hours of support a week that is meant to cover cooking, cleaning, shopping, laundry and errands. A week. He cannot do any of those things alone, and can barely afford food. He desperately needs physiotherapy, osteology and psychology appointments – which his funding is inadequate for. If his funding is removed or further how is he meant to gather evidence to counter this as is? It’s taken him months to have his situation reviewed as is. The changes to the bill will increase the time for response to requests from 21 days to 90 days and is stripping away review rights. This will only worsen the existing conditions NDIS
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applications and recipients are subjected to, and remove all capacity to respond or request reviews to unjust decisions made from inadequate information. If this is automated it’ll only get worse – and we need only look at Robodebt to know that this will lead to unfair decisions which will lead to people dying. Why repeat this with an even more vulnerable population?
Moreover, please tell me how, under the new bill, it is fair or even possible for most applicants to have received “all appropriate treatments” for a condition to be deemed permanent enough for eligibility? As mentioned, most applicants are likely to struggle to see specialists required to even get the paperwork to apply at all. This is deeply unfair, and will effectively make applying for the NDIS a pay-to-win situation, when the poorest people are the ones that need it the most.
I’ll refer to my specific circumstances. I was hospitalised in 2020 and applied for the DSP given my permanent disabilities make it impossible for me to work. I was very lucky that as a mental health outpatient the services available were able to assist me in gathering the paperwork and medical evidence required to apply for the DSP under the grounds of cPTSD, DID, autism and ADHD. Unfortunately those very same disabilities, in combination with my physical chronic health conditions, made my application very slow as a process. A lot of documentation was needed, and assistance with the paperwork I was having trouble reading or understanding. For the six months after I was discharged I did not actually manage to receive any treatment, all I did with my psychologist, psychiatrist and GP was fill in paperwork that I could barely read. At a period in my life when I was desperately mentally ill and suicidal. The very time-limited discharge program ended and the only reason I was able to receive any treatment afterwards was because during the pandemic Medicare supported extra psychology sessions each year. That has since ended. I would not be able to prove I’d received all appropriate treatment and apply for the NDIS at the same time under the proposed changes to the bill. Most people in my situation wouldn’t.
Moreover, it is impossible for me to be fully treated for my complex mental illness with ten Medicare subsidised psychology sessions a year. I’m not even able to receive support in a crisis because to see a psychologist even twice in a month means months of no therapy later in the year. Ten sessions is not enough treatment for complex mental illness, which can take decades to treat, and I dread to guess what “all appropriate treatment” would even entail. Would this entail specialist treatment I can’t afford or have access to due to the huge waiting list for bulk-billing practitioners? Would it mean going through every kind of evidence-based therapy – eg. DBT, CBT, EMDR, ACT, plus things like ECT and TMS which are medical interventions? Each of the four therapies I listed take years of therapy sessions to actually take affect, and the sheer burden of “all appropriate treatment” means someone like myself could be barred from the NDIS indefinitely for treatment I could only afford with NDIS funding.
I’m also going to point out that conditions like cPTSD and DID are developmental. They are permanent, the treatments are to manage symptoms and improve quality of life – and isn’t that what the NDIS is for? What about autism and ADHD – neurodevelopmental conditions. How does one treat that appropriately, short of a brain transplant? Treatment to manage symptoms does not mean these are any less permanent, and the symptom management is already out of reach for most. Existing treatments don’t offer the support the NDIS does anyway. Referring to my partner, even if he could afford a non-bulk billing therapist, that therapist will not help my partner leave the house and drive him to physically get to appointments. Nor will the therapist cook for him to help manage his eating disorder, worsened by his disabilities making him unable to cook for himself, or even shop unassisted. What about conditions like Ehlers Danos Syndrome (EDS) – which I am slowly being investigated for, and which takes an average of ten years to diagnose as far as I’m aware. There is no treatment for this genetic condition, just symptom management – like expensive physiotherapy and even more expensive mobility aids. Would someone be rejected for not having bought the mobility aids they can’t afford? Or for not having paid a great deal to have their house
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made accessible (impossible in a rental anyway)? Would someone deaf be rejected for not having a cochlear implant (which is not always medically appropriate and doesn’t always work)? Would someone be rejected for not having taken the “most appropriate medication” that is contraindicated for that patient due to other medications they are on, or physical intolerance to that medication, or it simply not working for that person? Will people need to re-undergo treatment that is at best ineffectual, or at worse dangerous and makes them sick simply to have it documented to prove to the NDIS that this is not an option? And pay money they don’t have for the privilege?
Have you ever had to take medication that makes you very ill due to dangerous, life-threatening side-effects, simply to have a doctor believe you when you say it is? I have. Most recently it was in hospital, under detailed medical supervision in the psych ward. It was extremely scary, and had the nurses panicking and making decisions about whether to discharge me to the ER, and all to ensure that an entire class of drugs was never prescribed to me again. This was not the first time it had happened. Is that what proving “all appropriate treatments” going to look like? Keep in mind that the consequences of some side effects to psychiatric drugs include things like serotonin syndrome, which can kill someone or result in permanent brain injuries. If I can’t find paperwork that may be lost in the system from years ago now, will I need to undergo that again just to be believed? Would you want to take something that could kill you to tick a box for an NDIS application? Define appropriate. Who gets to decide that? What proof and justification is needed to indicate that you are doing all you can, within your means?
And will there be constant pressure to keep proving permanency? I recall a few years ago the ABC reporting that Centrelink’s bureaucrats and automated systems were auditing people on the DSP to see if their condition were still permanent. They sent letters to amputees and people with Down Syndrome. Is this something that people on the NDIS will need to look forward to, and keep proving? Centrelink seems utterly paranoid that people are cheating the system and trying to save money – and that is exactly where the NDIS is going. The bill is about cost-cutting, and putting the burden of proof and cost back on the recipients, who cannot afford it, to save the government money.
I want to draw attention to the fact that the NDIS system at present relies on a primary diagnosis for which all funding is justified, when most disabled people have comorbidities. Think about it, a person can be blind and also have spinal stenosis, or autism, or EDS. As it stands most people with chronic pain, fatigue and psychosocial conditions have a great deal of difficulty being accepted on the NDIS and are encouraged to apply on the basis of autism, even if that is not the disability that receives the most support. Once on the NDIS there is then some capacity to apply for assistance with other disabilities. Unfortunately, autism specifically has been named as a group that is over represented on the NDIS and needs to be pruned. It misses this reality entirely. I’ll hardly say it’s easy for those with autism to receive support for their other disabilities either, not when the only disability the NDIS care about is the autism, and that’s all they’re allowed to have, effectively. Unfortunately though, it’s the application that got accepted more easily because autism is more clearly and easily diagnosed for those who can afford it.
A lot of other chronic health conditions are very seldom thoroughly diagnosed and can’t be attributed to one diagnosis alone. This means that I have friends on the NDIS for their autism, not their much more disabling conditions like physical pain and fatigue resulting in full-time wheelchair use, or inability to stand for more than a minute without pain or fainting, or renders someone bedridden and unable to even sit for hours each day, or with an inability to use one hand. Others have psychosocial disabilities resulting in inability to leave the house or talk to strangers. Changes to functional capacity to capture these complex needs would be wonderful, and no longer reduce people to one diagnosis, such that people with complex comorbidities that could be supported in a way they aren’t currently. Unfortunately I don’t have confidence that functional capacity assessment
Submission 574
proposed by the bill will in any way account for this, not as things are stated. It sounds more likely they’d hone in on the functional capacity due to the primary diagnosis – eg. autism alone. If that is so, I have two friends who stand to be homeless if their funding is cut from their subsidised, wheelchair accessible housing. One of those will also be unable to eat, given she physically cannot cook (due to her autism and her physical health conditions) and has complex dietary needs with her dietician-tailored pre-prepared food subsidised by the NDIS. Their funding could be cut or cut off without appeal by the Minister, or reassessed inadequately without any course for review available. They do not have any other support that could help them, all of their current supports are via the NDIS.
And that leads me to my final point – what happens to all those who are booted off the NDIS? There are carers and parents who can pen submissions about the burden it will place on them – especially women – provided unpaid labour for their children, family members and partners for the rest of the lives. They would rightly speak about the effects it has on their health, especially mental health, and finances – particularly if caring is their full-time job. There are less options available than prior to the NDIS as a lot of the state resources were cut, under the assumption that those who needed support would receive it via the NDIS. This means it’s not just a return to the bad old days, it’s worse. And women and family members would be the one carrying the burden, even more so than before.
But myself? I am transgender, queer and disabled, and disabled such that I am unable to work. I am estranged from my family and deeply isolated due to my disabilities, poverty and marginalised identities. There is no support for me. Nearly all my friends are in the same demographics, and they’re meant to be the support network. We can barely keep our heads above water, let alone help each other. When I’ve been discharged from hospital previously, be it the psych ward or ER, there’s always been the question of, “Well, don’t you have family who can help?” and at no, with some desperation, “What about friends?” There didn’t seem to be conceptualisation that no, some people don’t have these. Moreover, we shouldn’t be offloading the work of trained medical professionals onto untrained family members.
I am deeply moved hearing the struggles of able-bodied parents of disabled children or with disabled partners, it is a huge burden. But I too have that burden, my tiny world of disabled people leans on each other when very often none of us can stand, or leave the house on a regular basis, or even talk. There is no one else but us, and we have severe limitations. If I faint and fall my partner cannot physically lift me – not with three fractured vertebrae. If he does not have support and I am unable to read I cannot help him order food, meaning he does not get to eat. If he cannot read for me when I am unable I cannot operate the microwave. If neither of us can speak when overwhelmed by sensory meltdown, pain and trauma, who will advocate for the other and how? And we don’t live together and so if one of us is struggling we cannot necessarily get to the other if we cannot physically leave the house and has no one to drive us. Centrelink brutally cuts payments for couples living together, even on the DSP, so a couple living together has the limited essentials needed to live cut anyway. Have you had to choose between food and medication before? I have. Transport goes first though – you are simply unable to leave the house, ever. Rent is the last thing to go, after you stop your food, utilities and meds. Pity the people whose medication needs to be refrigerated (eg. insulin, absence of which will kill people), or those with electric wheelchairs or CPAP machines who’ll not be able to run them.
What support? What support are we even allowed when a disabled couple can’t even live together without being starved to death? Who is going to support those of us who have nothing and no one but other disabled people?
We will die.
Submission 574
How, in an affluent country like Australia is this fair or just? The NDIS was the best in the world, for all its flaws. Yes, reform is needed, but not like this. This is moving it in a way that is deeply unjust, and unjustifiable. This bill cannot be permitted to enter law as it is, the ramifications on not just the disabled but everyone around them is horrific. We cannot as a society permit – or for that matter, actively enable - the most vulnerable to suffer and be neglected simply in order to save money. What is government for if not to care for the people it represents? Please, please remember this role and rewrite this bill into something that truly represents the values we uphold as a society – care and dignity for all.
Thank you.