Submission for the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No 1) Bill 2024

12 July 2024

Good evening,

I am writing as a disabled woman from Queenlsand. I am also a carer for my sibling who is seriously disabled with cognitive, intellectual and physical disabilities. I have been Disabled for ten years and a carer for my entire life. I am too sick to apply for the NDIS for myself, as the process is grossly inaccessible, however my sibling is an NDIS participant and I have helped manage their package for many years now while my own health has suffered and declined due to a lack of adequate support in healthcare and disability spheres.

Within this submission I have detailed my concerns and objections to the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No 1) Bill 2024. I will refer to it as “the Bill”.

To add additional context to what I have written, my family and I are in year 5 of forced isolation due to ongoing endangerment from dangerous Covid policies that devalue the lives of clinically vulnerable people like us and put us at disproportionate danger of further disablemet or death.

All of this is to say, I have long-standing personal experience with the consequences of legislation that fails to listen to, or see, the diverse needs of Disabled and chronically ill people as equally deserving and feeling human beings who require access to the essentials of daily life to survive and function. My family and I are desperately fighting to stay alive in the face of entirely avoidable and preventable harms levied against us on a daily basis and this bill only adds further insult to injury as we suffer what truthfully feels like casual and intentional eugenics from government and society.

I have hurt myself greatly rushing to formulate a response to this proposed Bill and the consequences I can foresee from its potential implementation. This submission process has neither considered our traumatic histories and needs, nor our physical and cognitive abilities and time needed to respond to the injustices this bill is likely to encourage against me and my peers in the Disability community. The people who will be most disadvantaged and harmed by this Bill are the least able to write and defend themselves against its foreseeable harms.

In regards to the contents of the bill, I hold the following concerns and objections:

Co-Design

Right of Appeal

The Bill takes away a participant’s’ right to appeal. This will lead to participants being given tokenistic plans that do not adequately address their needs and risks causing serious harm as it leaves people in dangerous, neglected, isolated and abusive situations without any avenue to have their basic needs met, such as eating, showering, cleaning or accessing the community.

This will leave Disabled people without the support they need to live as safely and equitably as possible in society, which is what the scheme is intended to do. Taking away the right to appeal would render plans and the scheme not fit for purpose and a mere performative exercise in Disability rights, access and inclusion.

How are we to take the government seriously when you are prepared to take away the right to appeal which is a standard clause in so many other Acts and parts of legislation?

3. Broad powers to require assessments

The Bill provides the NDIA with broad powers to require participants undergo assessments.

The details of these assessments are unclear and my concern is that punitive and prejudicial methods will be used by non-clinically trained staff, mimicking a Workcover style assessment.

I have personal experience in this and have found it extremely punitive and dangerous appointing staff who are not aware of dynamic disabilities or invisible disabilities making assessments based on meeting the participant only once for a short period of time. This does not allow for a clear picture of the individual’s disabilities or the way that many disabilities (including symptoms and functional impairments) often fluctuate. Furthermore, if an individual like me is required to leave home to be assessed, we are likely going to save ourselves so we can have a “good day” to be able to leave the house safely, hence it is not an accurate representation of our usual function and lives.

One and done assessments, like Workcover assessments, fail to see the inadequacies of getting a person to do a task or movement only once and classifying the person as able to complete it. This fails to consider that a movement or task may not be able to be repeated over and over again. This paints an unrealistic picture of mobility and function and results in under-reporting and downplaying the severity of impairment and subsequent support needs.

The NDIS Review made multiple recommendations to address this problem and about how best to implement Needs Assessments. These recommendations should form the basis of assessment co-designed with the Disability Community. Only then, should the principles of these assessments be written into the NDIS legislation.

Punishing individuals who are, by and large, trying to do the right thing before going after

providers who are exploiting the system and treating Disabled people as cash cows is misguided and inexcusable. We are victims in this situation, not perpetrators.

Does not take a Whole of Person Approach

Reducing Disabled people’s access to support based on only one Disability or condition is extremely ableist and misguided. The majority of Disabled people have co-occurring conditions that intersect in complex ways making it impossible to untangle or state which condition is worse or requires the most support and accommodations.

Insisting on just one Disability, or primary disability, as the sole determinant of support is going to result in significant harm and suffering, it already is and this will continue to get worse and limit vital access to support. I personally have CRPS as a result of an injury, but that led to further injuries and horrific MECFS that has completely upended my life and ability to function. The consequences of CRPS led to MECFS and I need both separate and intersecting supports for the two. My sibling is autistic but also suffers from psychosis which is worsened by the fact that they are autistic and have reduced functional capacity and neurological impairment. There is no way that one can be said to be worse or more significant than the other.

Please take a whole of person approach as to do otherwise would be cruel and detrimental to accessing necessary support.

Raising Debts Against a Participant

This is a slippery and dangerous slope. If debts are going to be raised against participants then I would expect this is also the case in all other government run sectors, but of course this doesn’t happen as it is entirely unethical and results in life endangering consequences, particularly for already poor and marginalised people, which Disabled people typically are. This was shown by the Robo-debt enquiry and should never be repeated.

I’ve heard from many in the Disability community that much of the discrepancies occurring arise due to matters outside participants’ control, often due to provider errors or intentional fraud.

Other times errors occur because the rules are difficult to interpret. In the six or so years that I’ve helped manage my sibling’s package, not once has anyone from the NDIA actually sat down with us and explained how to use the package. Fortunately I am university educated and have higher level research and information processing abilities, so I was able to work it out, but even I was confused early on. It shouldn’t take having a post-graduate education to understand a system that is largely designed for people with serious intellectual and cognitive impairments.

Conclusion

In summary, it iis patently obvious to see there is mass resistance to this bill within the Disability community and sector as a whole. This is because of the very real risk this bill poses to our lives and safety. It’s not a matter of wanting the very best things or trying to take advantage for our own benefit, this is literally about accessing basic needs that non-Disabled people take for granted. The ability to live in the least amount of pain possible, to tend to hygiene, self care and nutrition needs, to access work, education and community and not be confined to terrible and distressing isolation and abandonment. These are not fancy things, these are basic human rights that we are talking about.

In 2024, Disabled people are still not free, safe or valued in Australia and this bill will only make matters worse as the bill will work in opposition to the well research and evidenced recommendations from the Government’s own NDIS Review and the Disability Royal Commission which highlighted the widespread normalisation and escalation of abuse, neglect, violence and exploitation of Disabled people.

This bill paints disabled people as a burden and as tax bludgers while simultaneously ignoring the enormous amount of taxpayer funds wasted in other industries and sectors which remains without scrutiny or accountability, often in equally high or worse proportions. This Bill Entrenches stigma and hatred of Disabled people by way of discourses that are false, scapegoating and intentionally misleading and will create a pathway for fascist policies and propaganda that has historically enabled the eugenics and elimination of Disabled people from society.