Submission on the National Disability Insurance Scheme Amendment (Getting the NDIS Back
on Track No. 1) Bill 2024
Date: 09/07/2024
Introduction
A brief overview:
- Multiple Disabilities
- Risks of un-appealable decisions made by staff who lack expertise
- “Medical Conditions” can be disabilities
- Choice and Control, Unique needs
- Audits (& Debts raised) must apply the laws at the time of the claim
- Please don’t force blanket registration on ALL supports
- Thank you
I am an NDIS participant and I want to respond to the proposed changes to the NDIS Bill. As I am very concerned with the proposed changes. The Joint Standing Committee on the Capability and Culture of the NDIA recommended removing primary/secondary disability and I was very relieved; this was a necessary and important improvement to how the NDis works. I am acutely aware of this because I have multiple significant disabilities and I literally cannot pick one as the “Primary” if I had to, ultimately my most disabling thing is the intersection of all of my conditions. I am therefore shocked and dismayed by the references in the new legislation to a single or
At the moment my disabilities are listed by the NDI<binary data, 1 bytes><binary data, 1 bytes> as EDS & Autism. While these are significant causes of disability in my life, including the intersection between the two, neither are my most disabling and they are certainly not my most life threatening issue/s.
In particular having Common Variable Immune Deficiency (a 1:25,000 condition) means I do not have a normally functioning immune system, I am at much higher risk of any infection than other people. I am also at much higher risk of autoimmune disease than other people, which can also be harder to diagnose because I don’t make antibodies in normal volume (that immune deficiency cause both low antibodies & increases chance of autoimmune disease is one of the “mysteries” CVI). Myasthenia Gravis is a “fatigable” (gets worse for repetition) autoimmune neuromuscular disease which is fluctuating in nature and when exacerbated can cause complete respiratory failure (due to respiratory muscle failure not lung disease). This means my breathing muscles are always weaker than other peoples. I have a weak cough and difficulty swallowing/managing my airway, which are mild when well managed but get worse and can be severe when exacerbated (by heat, by autoimmune flare, by infection, by excess use such as laboured breathing or prolonged coughing). I have a paralyzed right diaphragm with paradoxical motion: when I breath in, my functioning left diaphragm pulls down to fill both my lungs with air, but as my right diaphragm does nothing, my orans swing up into the right lung region compressing it when it should be expanding. So when my left diaphragm works, not only is it trying to operate both lungs on its own (twice the work), it’s doing that against the pressure of organs compressing my right lung (harder work again). Nothing can cure a paralyzed diaphragm; there is surgery that some people have to reduce the paradoxical motion, but I am not a candidate for this surgery because of my EDS (intersectional issues!). So I have half a diaphragm trying to do the work of a whole diaphragm, and with a paradoxical interference from my internal organs, AND I have a neuromuscular disorder that means my muscles are vulnerable to failing when “overworked”. Overwork includes lying flat in bed; I have not been able to lie flat and breathe normally since this happened to me. “Overworked” can include singing; I can struggle to breath after laughing too hard.
So imagine what happens to me when I get a cold, which I catch far more easily than other people because of CVI<binary data, 1 bytes><binary data, 1 bytes> (my immune system does not “remember” past infections); infections which | can’t ight off so | remain sick with even the most minor cold for weeks at a time. Because my cough is weak, | can’t clear minor amounts of phlegm from my chest and throat. So | cough and cough and cough until | am struggling to breath but | haven’t managed to clear my secretions. A minor cold auld result in my ending up in ICU with neuromuscular respiratory failure. As | can’t fight infection, my risk of secondary infections is very high. My risk of chronic lung infection compounds because | cant clear my lungs.
If | end up in the ICU from the common cold THAT is a medical problem, and the health system will deal with it. Managing my conditions as best we can medically is also a health system issue and is on going (I have very high contact with the health system). But preventing my ending up in the ICU is a disability issue. Assistive technology such as PPE, air filters, an adjustable bed so I can sleep safely supported in a more upright position, temperature control so | don’t get overheated and become more compromised; these are the sorts of things | need from the NDI<binary data, 1 bytes><binary data, 1 bytes>. Ongoing allied health support, support workers etc., are all necessary parts of preventing my further decline and enabling me to have as normal a life as possible given what has been dealt to me.
All three issues combine together pose severe risks requiring stringent measures required to manage y breathing function. Which one of those condition(s) should be considered “disability”?
National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill 2024
Submission 312
paralyzed diaphragm), why would I need funded support around temperature regulation for my MG? If it were MG why do I need much higher levels of PPE, food handling & wound management precautions than other people? If it were paralyzed diaphragm why do I need Autism related supports?
I haven’t even mentioned my current “primary” disability yet, EDS intersects with all these issues and is no way a minor issue. With EDS, coughing can sublux my ribs. I have injured myself turning taps on and off, using door knobs, trying to put on boots. My EDS is not as life threatening as my combination of CVID/MG/Diaphragmatic paralysis, but it is a cause of endless daily disability.
Add to this Lupus, which renders me essentially allergic to the sun. If I get sun on my skin my immune system flares, this doesn’t just flare my Lupus, it flares the Myasthenia Gravis. POTS, like Myasthenia Gravis, is extremely heat sensitive, so in addition to increased difficulty breathing I have increased tachycardia from heat. But, remember, I also can’t get sun on my skin or my immune system flares. The medical system does not help with the functional impact of these kinds of issues; there is no magical medical treatment for “no sun on your skin… but also… don’t overheat”. I must dress in expensive UV safe but temperature regulating clothing; I mostly can’t just get clothes from kmart or an op-shop; I must buy expensive specialist clothing that looks socially acceptable but functions as PPE just to leave my house. And I don’t just have one inconvenience like this; I have so many of them where one condition compounds another, or where two conditions have directly contradictory requirements.
it is absolutely crucial that |, and every complex case like me (of which there are many, in all kinds of flavours) continue to be able to access the NDIS and in a wholistic way, and to have choice and control.
If |am assessed and funded only for my POTS | cannot be safely/appropriately supported
If |am assessed and funded only for my EDS | cannot be safely/appropriably supported
If | am assessed and funded only for my Autism | cannot be safely/appropriatly supported
If |am assessed and funded only for my Lupus | cannot be safel/appropritely supported
If |am assessed and fundeonly for my Myasthenia | cannot be safely/appropriate suppoted
e If lam assessed and funded only for my Hypersomnia | cannot be safe//appropiately supported
e lf lam assed anfunded onlfor m Right Phrenic Nerve Palsy diaphragm paralysis)|cannot besafly appropratellysupported
i f|m assesdandfnd ony fr y CVID Iannotbesafl appopriatelysupported
Riks fo un-appealable decisions made by staff who lack expertise
in addition t understanding that like many other disabled people genuinely can’t “just pick the most important condition”, there is also issue of wh gets to assess access & make plans or someone ike me. For complex intersectional disability someonwho experttoassess impact one omy conditions may not have anyunderstanding therconditionsanhow they intersect Especially where those things arenot necessarily commonly comorbid. ForexamplethereareverymanypeoplewhohaveAutism, EDS&POTS,or combination thereof; thisisnota trulrarecombinationandanitshoulbe possible find OT hoisfamiliarwithallof these with theirintersection Butthisnotin caseithCVIDMGparalyzeddiaphragindividuallylet
National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1 Bill 2024
Submission 312
alone together and, as I hope I have illuminated, the sum impact of CVID, MG & diaphragm paralysis is far greater than even might be apparent from its parts and they further intersect with my EDS, Autism, Lupus, POTS & hypersomnia.
“Medical Conditions” can be disabilities
A stronger awareness is needed amongst anyone assessing or planning for NDIS participants that medical conditions can also be disabilities. I would in fact argue that a disability which does not cause significantly increased medical interaction is the exception not the rule. Disabled people, for the most part, also have high medical needs. The understanding of this fact is inherent in the NDIS requiring doctors’ reports to meet access requirements.
There are already multiple “medical” conditions that the NDIS & the general public understand as disabling (ie MS, Parkinsons, ALS). And the health service does not really address the functionally disabling aspects of any condition. So any definition of disability needs to include an understanding that some “medical” issues are also simultaneously “disabilities”. There needs to be a process for applicants and participants to appeal “that’s medical” denials of actual disability aspects.
The idea of what the proposed changes will mean for me is unimaginable.
Choice and Control, Unique needs
I would also like to discuss both the importance of choice and control and the risks and unintended impacts of allowing only “approved” supports or supports strictly related to a single primary disability. As a self manager | have made decisions about how to spend my funding based on my understanding of the current legislation relating to whole of person, and advice from Support Coordinators, OT, doctors & LACs and also with reference to this excellent article: “Funding for Multiple Disabilities” https://teamdsc.com.au/resources/funding-for-multiple-disabilities
| also regularly make use of the “Can I Buy it?” questions in my decision making. have also applied for, and had funding for AT which, while relevant to my EDS (primary condition), was most directly related to other disabilities which were not listed at all (and this was clearly stated in the letters of support for the funded item).
A breastfeeding bra and dress in order to be able to access my regular MG treatment, “Breastfeeding clothing” sounds like an inappropriate use of funds (imagine the headlines!) but it was entirely genuine:
National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 312
below). There are clothes designed for accessibility for various disabilities and for medical device action, the companies that sell these products advertise their “NDIS friendliness”; However my practical type of port, and its placement, combined with my body type meant that I was unable to find any options that would have provided correctly located access AND appropriate levels of privacy. I believed, and continue to believe, that this was a legitimate use of my funds. And yet | felt very scary to place this claim and I am always worried about one day being accused of fraud in relation to other similar claims, despite genuinely believing the claim was appropriate.
The “Can I buy it?” questions:
e Disability Related I wouldn’t buy it if I wasn’t disabled. I had my last baby 14yrs ago: a breastfeeding bra & clothing were the last thing | wanted and going into a maternity store was humiliating. | only ever wore the dress when having my port accessed as | hated that dress. The bra | wore at all times, instead of my existing (preferred) bras because the port made my is preferred bras painful to wear; often needed to have the affected side differently supported to the other
Audits (& Debts raised) must apply the laws at the time of the claim
in addition to the above, having used my funding so far by following rules in good faith and using\ guidance like the “Can | buy it?” questions, something | am very concerned about is having “debts” claimed for misuse based on new rules/interpretation. We must be guaranteed that any spending under current legislation will only ever be audited against rules that were in place at the time of the spending and in light of the intention as it was expressed in documents such as the NDIS self management guide at the time of decision making.
Please don’t force blanket registration on ALL supports
Right now | am self managed, this means | get to spend what funding | have on the things that have the biggest impact on my life for the least amount of money. It also means | have the control to use only support workers who | have selected personally, and who | have trained and who | can trust to enter my home.\ | have one support worker,\ | can trust her to wear a properly fitted n95 respirator at all times inside my home,\ | can trust her hand washing & food hygiene practices. She does not take her mask off inside my home for any reason ever. She goes outside to rub her itchy nose, to have a drink, to eat something. Those are MY rules and there’s no arguing with anyone about conflicting “company policy”, we have an agreement (in writing) and | can trust her to keep me safe. When she or her children are sick (with the sort of minor thing that shouldn’t stop her from going to work but could be life threatening for me) we have a clear process designed so that she can keep working as much as possible without risking killing me. She has now been with me nearly two years and has never once infected me with anything. This is life and death for me (and also for my child who also has CVID and autoinflammatory conditions).\ | cannot trust my life or my child’s life, to agency staff whom | have never met, who are subject to company rules and regulations more than my own, and who have not been trained by me to meet my requirements for my safety.
As well as being the best fit for me, my support worker is also more affordable than agency staff.\ | pay less per hour because\ | pay her directly with no premium going to an agency. She has an ABN,\ police checks, working with children checks, insurance, etc…My arrangements might not be suitable for an intellectually disabled person. Not every disabled person wants and needs the same things, and that is the point of the NDIS, that each participant gets the supports THEY need, not what is convenient for a big agency.
Anyone running or working in a facility 100% should be registered (and monitored!!). But |, and people like me all over Australia, have deliberately exercised choice and control and sought out to directly employ individuals as PAYG employees or sole traders, people that we can have direct, clear and safe arrangements with. This isn’t the easiest path, we do it with good reason and for our own safety. Please respect that.
Thank you
This has been a long submission,| thank you for reading it.| hope the Committee will take all submissions seriously in preparing its report.
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National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024
Submission 312
The following images illustrate access points.
top left: My Port while accessed, top right: typical port clothing bottom: the dress which allowed my port to be accessed and then covered by the flap while in use, but easily inspected as needed.