Submission 1942
To whom it may concern
My name is and I am a disabled NDS participant. I am writing about my significant concerns in regards to the NDIS amendments bill. Below I have outlined my most pressing concerns, but I would like it noted that the entirety of the bill concerns me. The proposed changes will significantly decrease the wellbeing of disabled Australians and their careers, place strain on our public healthcare system, decrease the capacity of disabled Australians and result in the deaths of disabled Australians.
Proposed Change: “Evidence will be required around the ‘Permanence’ of a person’s disability. There will be a requirement to exhaust ‘all appropriate treatment’ before NDIS eligibility is confirmed”
My Concerns:
Many permanent disabilities are both under researched and under resourced, making it difficult or impossible for disabled Australians to access the services needed to ‘prove’ their disability after their diagnosis. The evidence that the NDIS require for proof of diagnosis often relies on providers understanding extremely rare and complex conditions that they might have no firsthand experience with. This results in people receiving conflicting and often inaccurate reports, leaving without support for extended periods of time and resulting in a decrease in capacity and potentially death.
Proposed Change: “To be funded, support needs must arise ‘directly’ from an NDIS-eligible impairment (s34(1)(aa))”
My Concerns:
Supports based on single diagnoses and not overall functional capacity flattens disabled people’s experiences and ignores the complications and compounding nature of co-morbid conditions. Needing funded supports to rely only on the primary diagnosis results in inadequate support being given and can result in significant harm. The NDIS needs to assess an individual on their overall capacity and impact and not limit it to a single, or a selection, of diagnoses.
Proposed Change: “Changes to the Reasonable and Necessary Criteria. The Bill changes the tests planners must apply when deciding whether a support is funded. Cost, informal supports and parental responsibility may play a larger role in funding decisions.”
The current reasonable and necessary criteria are too tight and not reflective of the needs of disabled people. A close friend of mine, and fellow NDS participant who is one the NDS for Autism Spectrum Disorder level 2, and who has significant associated sensory sensitivities, was denied noise cancelling headphones by the NDTS. It is well established that noise cancelling headphones can help autistic people manage sensory input, regulate, and allow them to access the community and attend to self-care responsibilities. This is just one example of many NDS participants who are being denied supports and assistive technology which has
Submission 1942
been recommended by professional supports, like occupational therapists, by people who do not have the training or expertise to be making these decisions.
Proposed Change:
“Stronger focus on moving people to alternative funding systems.”
Concerns:
Not only are these alternative funding systems are widely not set up and/or are already underfunded and under strain, but the NDS was intentionally made to nationalise the support of disabled Australians. Not only is placing these responsibly for funding on non- existant, underfunded or unequip systems going to result in lack of support and death for disabled people, it is also a step backwards for the Australian government.
Proposed Changes:
“Minister may impose support caps, including for cohorts (s33(2EA))” and “Move toward more standardised planning and assessment-driven budgets”
Concerns:
Placing standardised spending caps for specific supports, and standardising planning and assessment driven budgets is contradictory to other changes proposed within the bill. There is the proposal for the bill to tighten criteria and provide more proof of support needs and funding needs. These caps and standardisation will cause nationwide harm to disabled people as they lose access to the supports they need because the government has decided that all people with a specific disability have the same needs. This is not reflective of reality. And, as stated, is contradictory to other aspects of this bill.
Proposed Change:
“Plan suspension and revocation for non-contact (s40A / s30(1A))”
Concerns:
This is inherently punishing disabled people for exercising their disabilities and punishing overworked careers for being overworked. Many disabled people experiencing fluctuating capacity, memory issues and time perception issues as a direct result of their disabilities. This change will disproportionately impact those it is designed to protect. There should be efforts made to support the disabled person in responding instead.
There are three more things that I want to share with you all. Firstly, it is the undeniable fact that defunding the NDIS will not save the government money. It will push the support and care of disabled people onto family members, friends, and the public health system. Denying people access to care and early interventions will worsen their disabilities resulting in more resources being needed to support them. It will force careers, who are overwhelming women, to spend more time and money to not only support their disabled loved one by to keep them alive.
Which brings me to my next point: these changes will kill people. Already we have seen direct and indirect deaths related to NDS changes over the last nearly two years. These deaths have been entirely avoidable, and yet the government has prioritised false ‘savings’ over people’s lives. This is despicable.
Submission 1942
Finally, I want to tell you a story about my close friend who I previously mentioned. When they were trying to access the NDIS, they were sent by the NDIA to a private psychiatrist to be assessed. During this assessment they were dismissed, spoken over, and no formal assessments were completed, yet they were given diagnoses that did not reflect their symptoms. These diagnoses were supported by the many psychiatrists, psychologists and doctors they had spoken to before or since. Last year, this psychiatrist, who the NDIA selected to make decisions abouts people’s access to the scheme, was arrested for sexually assaulting his clients. The NDIA had been, for years, sending vulnerable people to a sexual predator. This is not okay. This is why disabled people need the ability to choose their own providers, and why a registration for providers will not work. I haven’t touched on the registration of providers at all within this submission, but quite frankly I am tired.
I am tired of fighting for my rights.
I am tired of fighting for my friends rights.
I am tired of fighting the government to give disabled people around Australia the funding the need to not only live, which already isn’t happening, but to live fulfilling and meaningful lives.
I strongly oppose this entire bill and would like it to be scrapped.
Regards,
(NDIS participant)