Submission 846
Submission to the Community Affairs Legislation Committee
Inquiry into the NDIS Amendment (Securing the NDIS for Future
Generations)
Bill 202
I’m an NDIS participant, and a mother and carer of NDIS participants in a heavily neurodiverse family.
I’m writing this submission in fear.
I’m afraid that by drawing attention to myself, or criticising the scheme, I will be punished or penalised by having my supports, or those of my family members, cut.
Fans of Lord of the Rings will understand the analogy “I don’t want to draw the Eye of Sauron towards me.” I believe that many, many, many NDIS participants and their carers have spent years being very careful not to speak up, or stand out, or ask for anything, or complain about anything… for fear of drawing attention to themselves and inspiring the NDIA to review their plan.
The distrust of the NDIA among participants is a major impediment to reducing costs and should be addressed in any changes to the scheme.
Plan reviews have become synonymous with funding cuts. For example, one of my children who is an NDIS participant had a massive deterioration in their condition a few months ago which burned through all their remaining funding, and their support coordinator requested a review for change of circumstances.
After some months of fobbing off her support coordinator, the NDIA phoned my daughter directly and had a conversation with her - she was in no fit state to be speaking with them - and she thinks it must have been a plan review discussion, but she doesn’t think they said that. They should have spoken to her support coordinator, but instead they chose to speak to the vulnerable participant who was not able to advocate for herself or even recognise that she needed to ask them to talk with her support coordinator. Shame on them for taking advantage of a vulnerable participant. Shame.
Thing is, it’s far from the first time I’ve known this to happen.
This is salient because if this is the existing strategy that the NDIA are already using (and have been using for some years) to slip a plan review by the umpire (ie: to avoid having to interact with someone like a support coordinator or support person who can effectively advocate for the participant) then how the heck are we expected to trust that the new functional capacity assessments per the I-CAN system will be administered without bias, even in cases where the participant fits into the unknown proportion of participants or applicants for whom the I-CAN could possibly be accurate and effective?
Submission 846
Anyway, my daughters funding has been reduced despite her condition being much worse, as attested to through letters from multiple specialists and an OT funded by the NDIS. The deterioration warrants more supports, but instead, they’ve reduced them. I’ve had to quit my part time job to cope with the extra hours of care for her, and because the distress of dealing with her being screwed over by the NDIA on my watch is absolutely eating me alive. I don’t know if she can recover. I feel like I will never work again.
I’m so tired, but I am also angry and I can’t just lie flat and hope that by doing so I won’t get my plan downgraded as soon as I will if I speak up. If people like me don’t speak up on behalf of all the people who can’t, we’re all doomed. If humans don’t exhibit qualities like courage and compassion, we deserve to be doomed.
I will never cease to be outraged when the NDIA demands costly reports from specialists (some, but not all funded by the NDIS) and then, by all the evidence, it ignores them.
As an autistic person with severe justice sensitivity, I feel that I must write this submission regardless of the risk it poses, and the anxiety I will experience in the process, and afterwards. Because the NDIA is not just. As in - it’s unjust. It’s an injustice against the people it is intended to support. It’s an injustice to the people who pay the taxes that fund it. It’s even doing an injustice to the people who are employed by it at every level. The moral injury experienced by participants and administrators and providers is not insignificant, and … it can be improved from all directions with a bit more thought and consistency.
Removing participants from having access to the scheme is not even a tiny part of the solution to this problem. So that’s unjust as well. You can’t end injustice with more injustice. The solution requires that the system be reconfigured in some profound ways, but also in some simple ways. It can be cheaper and more practical starting today.
Here’s a few of the things that I wish that the people who designed the scheme knew, and could take into account when redesigning it:
My condition means that I have limited energy, and without being painstakingly selective about the things I let myself get engaged with, I can easily collapse into burnout, with crushing impacts on my physical and mental health. I can’t afford that kind of collapse
- not only because it’s better for society and for myself if I direct my energy into maintaining gainful employment, but because I am a CARER, and the wellbeing of the numerous people who depend on me for care and support is jeopardized if I am having a prolonged screaming meltdown.
Since engaging with the NDIS, I have spent a lot of that scarce energy arguing with support coordinators, delegates, and other experts in the field in efforts to get actual, useful supports for myself or other people I care for. In almost all cases, the supports
Submission 846
I am requesting are LESS expensive than the supports I am told that I must have instead. And in almost all cases, the supports I am asking for are practically identical to supports that are being provided to other participants who have similar conditions, similar funding, in the same categories as mine/my participants have.
The injustice is in the lack of consistency. (See example 1) The injustice is in being forced to spend heinous amounts of NDIS money to get the next-best support, rather than the support that is cheaper and more effective. (see example 2) The injustice is in being forced to buy a new assistive item from a specific subset of suppliers instead of being able to buy secondhand
- this is especially jarring when the item is being bought to trial it, when it’s obvious that there’s a high chance that it will end up being unsuitable, and will end up being donated to an op-shop or similar. (see example 3)
The following examples are just small, simple to explain samples of a small subset of the problems I’ve encountered with the NDIS snippets I’m writing about off the top of my head, specifically chosen because they are, I hope, easy to understand. (There are far more problems, and they are a sticky, intertwined, multi-layered mess that I don’t have the energy to unpick as I write this today.)
Example 1: lack of consistency Three of my children who have NDIS plans have psychology funded in their plans, and have been accessing this very useful support for many years. The fourth child has been told that the NDIS does not fund psychology sessions. This is clearly incorrect information, and in practice the advice available, and the supports available, are inconsistent.
Example 2: More expensive, less effective supports. As the shopper and cook for a household of six people with special dietary needs, and living way below the poverty line, I requested that the NDIS fund some sessions for me to work with a dietitian. We all have weight related health problems related to our disabilities, and I wanted to figure out a meal plan for my household. I’m (clearly) rather bad at this task, so having a practical and healthy shopping list to guide me would reduce my mental load, and reduce the horrifying amount of food waste (caused by my particular mental impediments of organisation, time blindness etc).
I was told by my then-delegate that the NDIS doesn’t fund dietitian sessions, which was super-weird because my eldest child had been having dietitian sessions for at least a year at that point. Her weight has only gone up and up. We all know that BMIs are BS, but as an indicator, three members of my family have BMIs over 40, and one regularly falls below the minimum recommended BMI. The remaining family member is only 13, and I would love to be able to provide consistently appropriate and nourishing meals to prevent them from developing a weight problem in either direction, but I still can’t get the specific, and pretty obvious, support I need to do that one thing!
Submission 846
My delegate was quite belligerent about the NDIS not providing any dietitian supports, and instead suggested that I use my social and community participation supports help me to “learn how to cut up carrots”, and to cook healthy meals. I experienced that as wildly condescending. I explained that I am already quite capable of cooking carrots in several ways, the problem is that my disability means that I will forget to buy carrots, or cook far too many carrots so that I end up having to throw out a lot of carrots. Or I will buy carrots three or four times, forgetting that I already have a crisper full of carrots, and after a few weeks, I face the irony that I can get support to help with throwing out a bucket full of slimy crisper-carrots that I forgot existed. But I can’t get support to help me to have a basic shopping list that I can look to when working out what to buy, how much, and when. (and before anyone points out that there are food plans that one can subscribe to that would even deliver groceries and recipes to my door, I will point out once again that a) my household’s complex needs stump every online ordering option I’ve poked at, and even if they could deal with it all, my household can’t afford that sort of fancy stuff. And I’m told that the NDIS will not even partly fund that service for my household, though I’m aware that other participants do get subsidised food delivery services.)
Example 2.a My family’s needs make it pretty obvious that we could benefit from a personal trainer on a weekly or fortnightly basis. (NDIS doesn’t pay gym memberships because it assumes that people can just afford a gym membership by default, which is another utterly stupid assumption that ignores that many disabled people live way below the poverty line) It’d be much more cost effective to get a PT to meet us at home, in a park or sports ground to help us to exercise effectively, but we were told that the NDIS will not fund that. Instead, we are to go to individual exercise physiology sessions which are gobsmackingly more expensive! But it was what was available, so trying to shake off our guilt about the cost to the taxpayer … off we went. I can only shake my head at how wildly wrong it feels, but I do need the supervised exercise practices to avoid deteriorating further.
Example 3: Expensive, prolonged processes to try possible support strategies. One of my children has a condition that may have benefited from the use of a weighted blanket (this was before they were deemed not-NDIS fundable) and the process I would have had to go through to get one for her to try to see whether it was even useful for her was: Go on the waiting list to engage with an Occupational Therapist, sit on the waiting list for over a year, have my child attend multiple sessions so that the OT could assess her to determine what tangible support products they would recommend for her. If the report found that a weighted blanket was an appropriate item, the OT would provide a letter of support for me to purchase a weighted blanket from a provider that I’d check was approved by the Plan Management organisation. Then I would purchase the item, and submit the invoice
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to the Plan Manager who would approve the invoice to be paid out of my child’s Consumables budget. Only then would we find out whether my child would benefit from, or even tolerate, the weighted blanket.
So that’s 193.99 per session for OT, an extra session for writing the letter and report, plus the cost of the blanket at $130 for a cheaper NDIS approved one. And this is because I can’t just go to Kmart or Spotlight and buy one for $40 - $50 then submit my receipt to the plan manager and get reimbursed. No - if I want the NDIS to fund an item like this, it has to be supported by a recommendation from occupational therapist. And then there’s a good chance that the participant won’t find it to be useful, so it gets moved on to an op-shop or similar. I did see quite a lot of them at garage sales and op-shops at the time; they’d been funded through the NDIS process at about a grand a pop, and rejected by the participant and eventually disposed of as unnecessary clutter.
I finally bought one, in its original (opened) box, at a garage sale, for $15. It hurt my family’s grocery budget, but I really, really needed to try anything I could to help my child to settle to sleep. I wasn’t getting enough sleep, neither was my husband, and we were getting very run down, sick, depressed and desperate to find strategies to help her to sleep sooner, better, and longer. So I spent the money, knowing that I wouldn’t get reimbursed without a retail receipt, and an OT letter of support.
It’s a bitter pill to swallow, to know that I can’t be reimbursed for the cost which represents a large portion of my household’s weekly grocery budget, but was also such a massive, massive discount on the almost a thousand dollars that the NDIS would have had to pay if I’d followed the formal process to get it funded through the scheme.
There are so many examples of this: retailers selling “NDIS approved” reaching sticks for three or ten times the price the self same product sells for at Bunnings, because participants fear (and often rightly) that they will only get reimbursed if they buy from the expensive medical supply place, and not if they buy from Bunnings.
This example leads me to another point: The lack of a market for secondhand, lightly used, or unused disability support products in a format that can be covered by the NDIS feels to me like a massive oversight in the scheme. There are many organisations who hire out things like crutches and shower chairs and lift chairs - why wasn’t there a place where people could hire (or buy secondhand) items that had been checked and cleared by an in-house OT and appropriate technicians? It seems like an obvious service to add-on to existing aged care and medical furniture suppliers. But the NDIS forces the purchase of expensive new items, supported by expensive OT recommendations, despite there being such an obvious cost effective alternative. If you really want cost savings, how about giving that a look?
Submission 846
I know that my experiences, if read by other participants or NDIS workers, will be familiar, but there will also be people who will say that I’ve had some bad advice. My experience of the NDIS is that all advice is Schrodinger’s Bad Advice, because no matter what you do, or who told you to do it, the odds are that someone will pop up and query what you’ve done, or simply tell you you’ve done it wrong and you’re in trouble for it. Consequently, I live in fear of being NDIS Robodebted on behalf of my whole family because the sums of money that are being spent are so beyond my ability to pay back, and I have very little option but to engage the services that are recommended and permitted.
Social and Community Participation is a key part of my family’s experience of the NDIS. For some of us, it’s exercise and social activities. For others, it’s having someone to remind us of, and accompany us to, a scary appointment with a Job Service Provider, or a doctor, or paying bills and buying groceries. The participants in my family have different amounts of funding for social and community participation, and I don’t think the hours reflect the needs. I worry that hours will be cut arbitrarily, which will hit the participant most in need the hardest. I don’t want them to return to a state where there’s a real chance that they will harm themselves again, or worse, but that’s the kind of thing that these supports help to keep at bay.
I worry that my autistic kids will mask so effectively in their assessments and planning sessions that they will have their supports reduced or removed. I worry that they, and I, might get our access revoked. I worry that if we are kicked out of the NDIS and told to use other services, we will be adrift in the oceanic garbage patch of former services, referral hubs that all point at each other because there are no actual services, and underfunded nubs of organisations with barely enough staff to gasp “peer support networks!!” before going under. And let me tell you, as someone who has been a carer for most of her life, peer supports… aren’t supports. Carers are burnt out from having all the tasks piled on us forever, especially organising things and supporting people, so sure, go ahead, give us the task of organising things and supporting people, again. Governments imagine peer support groups as uplifting groups who share resources and encourage each other, but the reality is just a bunch of people venting and grieving about the lack of actual supports, and how the many systems they are expected to navigate constantly come up with new and interesting ways to fail us and the people we care for. It’s not ‘supportive’ if all we can share are tales of betrayal and despair. Someone has to provide supports that genuinely work for peer supports to be a useful tool or strategy.
So please don’t dump people off the NDIS into systems that don’t exist. Don’t even dump us into systems that are only very new. They need to have been established for at least a few years to be fit for purpose.
Submission 846
I worry that establishing State based options for people who will be shuffled out of the NDIS is simply throwing open the market for existing shonks and fraudsters with years of practice in ripping off the NDIS. The tin-foil paranoiac in me wonders how many established shonks and fraudsters are involved in designing the changes to the NDIS with precisely this kind of bonanza in mind? I sure hope that someone in the government is as paranoid as I am, because someone should be watching for this possibility, and making sure that whatever programs are designed are carefully shonk-proofed before implementation.
Oh, and can we please have some means of querying NDIS decisions? Something between “ask your LAC/Delegate” and “the Tribunal” feels necessary. The lack of an independent complaints department seems like an oversight. They could probably double as a fraud reporting option, too?
I think that if there were an independent organisation that participants could go to to discuss the weirdnesses in the system, it would provide clarity, and through feedback from the organisation back to the NDIA, help to avoid inaccurate, mistaken, and contradictory advice and decisions. An element of confidentiality, where possible would give participants confidence to speak up, which has to be a huge help in so many ways. As I have already said, participants have often said to me that they stay quiet about a lot of weird and dubious things out of fear of backlash against them if they contact the NDIS about anything.
I’m also perplexed by the assertion that, in future, applicants will have to have tried or explored all possible treatments for their condition before their application will be considered. I’m perplexed because… isn’t that already a requirement for access to the NDIS? It was when I applied. So.. what’s different now? Will the definition of “all appropriate treatments” be broadened? If so, I’m ready to guarantee that these treatments will be expensive, and will not be covered under PBS.
But is it fair for the government to demand that families and individuals pay for specialist treatments that they are only getting to satisfy the requirements to apply for the NDIS? Won’t it make the NDIS rather an exclusive club? Especially where families of people with disabilities have low incomes, and often have multiple people in the household with disabilities? Once again with the injustice.
Just… provide a way for people involved with the NDIS to report concerns, and to give feedback without fear of reprisals. Don’t cut social and community participation unless you have a detailed understanding of what someone is using it for, and whether they have viable alternatives. Don’t kick anyone off without an extended dual enrolment handover period with a well established alternative scheme. Don’t let the dodgy scammers lie in wait for new scheme opportunities, because they are sure to try.
And make it all fairer.
Submission 846