Submission 2654
NDIS Senate Inquiry Regarding Schedule 1, Part 8,
Paragraph 91 and 92, Subsections 25(1A) and 25A
Hello all, I am 18-year-old NDIS participant and I’m writing this inquiry as I have huge concerns about this bill decisions and what it will do to disabled people in Australia. I’ve been on the NDIS since I was 8 years old, and it has single-handedly given me a chance at the kind of life every other Australian gets to have. I can’t imagine what would have happened to me if I didn’t have the support I needed during the development of severe health conditions and onset of a rare neurodegenerative disease. The bill in its current form leaves a myriad of undefined and unexplained variables within what we’re told will be concrete decisions that, for many of us, will affect every single part of our lives.
Unclear Criteria and Definitions and The Governments Treatment
Expectations
The governments definition of an “appropriate treatment” is self-contradictory, as it specifically includes treatments that are impossible to access because of “individual circumstance”, including financial and/or geographical boundaries. If a treatment can’t be feasibly given to an individual, how can it be “appropriate”? Some exceptions seem to be in place for individually inappropriate treatments that will be accepted by the government as not applicable, such as treatments that can’t medically be undertaken. How will these who gets these exceptions be decided? I am ineligible for many standard, evidence-based treatments for my autoimmune disease due to other conditions I have, and my family history of risks associated with medications like Biologic DMARDs. I’m very worried about how I would be expected to prove that with the NDIS, as its still beyond difficult to prove any medical information with them currently.
What is the level of evidence the government will consider as “evidence-based”? Is this the evidence standard of individual case studies, or medicare-listed medications and allied health treatments? Evidence can be found for all types of medical treatments and procedures in cases of individuals or even small group studies without reflecting a reasonable treatment that should be expected of all NDIS applicants. The third criteria of “regularly undertaken or performed” doesn’t clarify this entirely. Regularly performed to how many people? How often is regular? Where would the treatment need to be performed for it to be considered an applicable treatment? My concern would be that there is a very low minimum for treatments that count as “regularly performed”, and we would be expected to pursue treatments that are difficult to access in all ways. I would also like to flag that some treatments are evidence-based, appropriate, and regularly performed, and still wouldn’t be possible for someone to access. I have a diagnosed immune deficiency for which the treatment is Intravenous Immunoglobulin (IVIg), a medication derived from blood
Submission 2654
donations. It took me 3 years after being diagnosed and meeting the criteria for it to receive IVIg as it’s in very limited supply and is incredibly costly for the supplier even though the patient doesn’t always pay that cost.
Many of the words used in this bill to describe disabilities, conditions, and treatment outcomes are non-specific or have multiple meanings. Does “material” (Subsection 25A) mean physical or substantial changes in the context of treatment outcomes? Assuming “substantial” is the answer, how will “alleviate” and “improve” be measured? Are muscle relaxants that don’t reduce spasticity to the degree of effective muscle use (as in my case) considered “alleviating” enough for an applicant not to qualify? What about progressive diseases where you can’t exhaust all the treatment options before becoming disabled enough to apply, and only try new treatments with new progressions? Will the NDIS defer to the medical providers on the decisions of whether all treatment options have been pursued effectively and if not, who will be making that determination?
I have a neurodegenerative disease with an unknown progression timeline and process for which potential treatments and outcomes are unclear to even my medical team. I already had to prove that I completed all potential treatments with the current NDIS system. On top of this, the NDIS also repeatedly questioned and argued against the accuracy of my doctors’ diagnosis and treatments when we supplied the medical evidence they asked us for. They still haven’t accepted the condition I’m diagnosed with in agreement with their current standards, despite their decision being made by someone with no medical training or qualifications. Considering this, I have great concerns about the NDIS imposing a new version of their own treatment guidelines onto (or even in contradiction to) the decisions our doctors are making with their extensive education and expertise.
Another concern I have with these new guidelines is that it may force myself and other participants to receive treatments we would never choose otherwise. I know of a surgical treatment for spasticity that causes irreversible damage to the spinal cord and may even reduce the remaining capacity of patients. Would receiving high-risk treatments like these be the new minimum for disabled people to even apply to the NDIS, as per the proposed protocol of completing all evidence-based, regularly performed treatments?
If a person has conditions causing multiple impairments in different categories, are they required to treat all of them following these guidelines even if they would only qualify for one impairment category? To clarify, will we be required to exhaust all treatments for conditions that aren’t relevant to or being considered in the application? If the whole person won’t be considered under these new funding protocols, the government needs to state whether we must still have extensive, invasive, and financially draining treatment for conditions they wouldn’t be supporting us with regardless.
It has taken me 7 years to fully treat and stabilise most of my health conditions, through the process of intense testing, frequent appointments, being referred to new specialists, and
Submission 2654
constant trials of new medications. For my autoimmune disease, each new medication requires a minimum 3-month trial period before a decision can be made on its efficacy. Blood tests must be done every 4 weeks for the first 3-months of a medication trial, and imaging (lung function exam, x-ray/MRI, muscle and nerve testing) needs to be redone regularly to check for further damage.
If this is the system that the government adopts, it would have devastating effects on disabled applicants. Should there be a requirement to stabilise conditions that are irrelevant to the NDIS application process before being considered, disabled people will be forced to spend months or years of their lives seeking and trialling different treatments and medications that they would be paying for out-of-pocket before the government would even accept their application. This delay in care for their applied disability could cause extensive regression in their functional capacity, leading to a higher financial burden on the government than if they were accepted at the time of their application. It’s also unreasonable that someone who needs NDIS support to stabilise their disability would be expected to stabilise all their impairments before receiving any support to make that happen.