Submission 2577
Here is my situation:
I am a NDIS participant. I, also, have been a parent to a child who is also a NDIS participant. My experiences with regards to the amendments proposed include: Having applied for NDIS for myself, and my child. Both processes were long, time consuming, and expensive. Attempting to change and/or extend aspects of an NDIS plan. Dealt with plan reviews, and Dealt with constantly changing goal posts.
I have been on the NDIS since 2020. I have been on the Disability Support Pension since 2013.
The following document addresses five issue groups that broadly cover the proposed amendments. Namely, the general difficulties and financial hardships around NDIS enrolment, the narrowing of the definition of disability to a single underpinning cause, the forced treatment model, the source of disability in respect of permanent lifetime affects from workplace and/or TAC which are not addressed in their legislative framework, and finally the extensions on waiting times.
My first concern speaks to the basic inequity that exists within the existing framework of NDIS, and that these amendments seek to widen. The cost burden placed on people of limited means is disproportionate to their actual means. People with disabilities are vastly under-represented in employment meaning, sadly, many of us rely on a much lower income than the general population. The Disability Support Pension places people with disability at higher risk of living in, or just above, poverty while basic living costs are fundamentally higher than for an abled person on the same salary. In its original form NDIS sought to address that imbalance: allowing people with disabilities the ability to live with basic dignity. What is not touched on in any commentary is the fact that the vast majority of the NDIS budget actually flows back into the economy as a result of payroll tax from people whose work role supports disabled people, from goods and services as sales tax from items used to support people with disabilities, as well as through the simple means of disabled persons being able to participate in the community driving the economy by that community participation.
Instead of supporting the economy we are forced to choose between medical necessity or eating this week. As a general example, the non-rebated fee for a specialist can run into hundreds of dollars, or to put it bluntly a large portion of a fortnight’s living expenses, then multiply that by the multiple visits required to complete assessment, and across often multiple specialists, and the issue becomes can I eat this month OR pay the medical bills.
That an AI driven tool used by first year graduates will be used to override diagnosis and treatment plans designed by fully qualified practitioners is frightening. This fear is grounded in the changes that did occur when the last major amendments were implemented. I remember having to do a plan review where the person reviewing my plan obviously had no qualifications in any disability, or disability adjacent careers, and was using an excel spreadsheet with limited options on answers. Questions had to be answered in a specific order and there was no room to record nuance. This production line treatment of real people with real needs sets up a situation that is highly likely to mimic Robodebt: the cost to the tax payer exceeded monies saved while leading to life ending outcomes in some cases. That there is talk among the disabled community discussing accessing VAD or worse yet just planning suicide if these amendments go through should be a major red flag to anyone writing this legislation. The reality for me is that just worrying about losing my supports is triggering suicidal ideation.
Secondly, changes to the basic definition/structure of how disability is defined fails to understand that not all disabled people fit into a nice neat set of single point disability. In my case I am autistic with essential tremors, balance difficulties necessitating mobility aids for walking any distance. I, also, suffer from Complex Post Traumatic Syndrome
Submission 2577
(CPTSD) making participating in community difficult without support. That the new plan system requires a single diagnosis shows how little the people drawing up the legislation understand about disability. Limiting the ability to enroll to a single diagnosis that is considered significant enough effectively allows the system to unenroll anyone with a complex diagnosis.
The idea that all modes of disability have medical treatments that will FIX everything is a nonsensical fallacy. Enrolment into NDIS is predicated on the Disability being permanent: even if, and that’s a big ask, treatments existed for any specified disability does not mean it’s going to get better, many treatments just lead to maintenance of current capacity. Also, tying back into earlier points, just because a treatment may exist does not mean it is affordable, successful, and accessible to people with disabilities.
Extending the requirement that all available treatments are tried is, itself, another form of discrimination on financial grounds. Many treatments are only available in the capital cities while people with disabilities live in all corners of Australia. We keep hearing about a health crisis with the number of GP’s accessible in rural areas have decreased significantly forcing people to put off care until any condition heads towards life-threatening. As a government you seem to wish to add to this burden, staffing, availability, and cost, without even considering that abled rural Australians have poorer access to services; disabled people are likely to have no access at all. Without support how is a wheelchair bound person in Buninyong to get to an appointment in Melbourne? Noting that any such appointment will come with additional costs to cover accommodation as this is not likely to be a quick day trip. Before you legislate maybe rolling a day in our chairs, unsupported, should be a requirement.
Even under normal circumstances people on lower incomes suffer a significantly higher cost, in the long term, to access basic medical treatment above the GP visit. My income does not allow me the option for private health care and thus what should have been a reasonably easy fix for chronic sinus issues meant 2 years on a waiting list with constant sinus headaches, migraines, and other respiratory problems, that have led to a general worsening of my health because I had to wait on the public lists.
Requiring participants, and possible new participants, to exhaust all treatment options before being able to enroll in the NDIS becomes a form of discrimination on financial grounds. This is without adding that the definition for “exhausting all medical treatment options” is undefined at this point: does this include experimental, untested, novel or possibly treatments not yet envisaged? Would you sign a blank check? Because without clear definitions this becomes a means of being capable of constantly shift the goal posts.
Speaking to the section on “No compo” cases allowed is just another move to unenroll participants without considering if the resources actually exist. Not all compensation payouts pay enough to fund ongoing care and support: the push to get a total body injury score to facilitate a payout does not adequately address the ongoing realities of dealing with the continuing affects of the originating injury/injuries. In my case, my husband is also enrolled in NDIS due to hearing loss compounded by work related injuries with ongoing medication [still covered by medical and like expenses] and worsening outcomes with regards mobility. In general, after a decision was made on total body impairment, related solely to the injury point, a compensation amount is awarded: in the real case that payment does not adequately provide ongoing support covering long-term lost wages, which could have been used fund some of the supports provided through NDIS. The suggested treatment available has a high risk of permanent loss of leg movement: not an improvement at all. The payout does not cover the fact that he is not to lift more than 5kg, walking any great distance is difficult without a walking pole, insomnia from chronic back pain, just to name a few. I, with my own needs, are forced to provide informal supports such that I end up ignoring my own needs. This has led to at least two incidents where I had a psych-crisis-assessment-team called on me for suicidal ideation.
Waiting times. Whether this change is driven by a lack of qualified staff, or an unspoken need to have disabled people remove themselves from the community permanently, the move to extend waiting times out to 90day from 21days will
Submission 2577
break people. Maybe, when expressed in terms the non-disabled can comprehend the absurdity of that time frame. Currently, for example, if I needed to change my plan because my essential tremors worsened I still need near 21 days where I might be limited due to no longer having sufficient support; now I’m looking at 90days for change to occur. Consider tripping over at home and ending up with a spinal fracture and a NDIS plan is drawn up but does not include any home modes and it’s going to take another 90 days for that review to happen. I’m sure the general person will be fine with that scenario.
This time extension isn’t about creating a better system. It’s all about encouraging people to either leave NDIS or life because life has become an insurmountable challenge.
In simple terms I’d like to remind those proposing these changes to remember COVID and the feelings of isolation, dread, and fear that they felt. The difference is that the abled community had hope of an end date to their experiences whereas ours is permanent.
NDIS has made it possible for me to participate in the general community. Without support I would be house bound, isolated permanently in a way that led to negative outcomes for the general community when they, too, had to deal with the reality that affects many in the disabled community, as a result
In closing, it’s challenging to have to put my lived experience on display like some form of torture-porn. That unqualified people, and by unqualified I include new graduates with little real world experience, are going to make choices about what support needs I require regardless of the documentation, cost, and processes I had to go through before I could be enrolled in NDIS in the first place is sickening. The subtext is clear in these amendments: just be quiet already and die.