Submission 2258

Submission on the NDIS Amendment Bill

My reason for contributing.

Navigating the world as a young disabled person has come with many challenges. My illness is invisible to the untrained eye and the expectation to participate as an able bodied person within society only adds to the stress of managing my health. Despite this, I feel grateful for the wisdom I’ve received in my disabled body and know that the best way for me to utilise my lived experience is to share my perspective with you. Despite having a medically verified, permanent, lifelong, incurable disorder and no longer being able to achieve many regular daily living tasks independently, I was unable to access NDIS funding. I’m submitting this because I know how painstakingly difficult it is for people to access the support services they need in the first place via the NDIS, and how misunderstood disabled folks are by our wider community. Broader economic pressures are already Disproportionately impacting the most vulnerable in our community. With this in mind I am choosing to amplify the voices of disabled people while the funding of the NDIS sits on the chopping block.

My overall view of this Bill.

Overall, I believe many of the proposed changes will negatively impact participants and their communities. Some of these changes will indirectly lead to dangerous and life threatening situations for participants if not carefully considered, edited or rejected. The proposed amendments to the bill pose a significant economic threat not only to current participants and their families, but also the wider community as demand for mainstream support services increases rapidly. Building a stronger, more efficient and more economic NDIS system does require input from a range of stakeholders - but perhaps most importantly we must consult with those whose lives will be directly impacted.

My concerns.

I have several concerns with the proposed amendments.

1. My first concern is with the increased reliance on standardised or system driven decision making processes. The automation of administrative action raises alarm, as the outcomes provided by computers will have very real and impactful consequences on humans. What I found particularly interesting was Schedule 3, Part 2, Division 5, 59E, s subsection 5

Submission 2258

“A failure to comply with subsection (4) does not affect the validity of the administrative action taken by the operation of the computer program.”

This reads as “The computer’s actions are valid even if it fails to comply with the rules”. I am really shocked, and terrified, to see that line included.

I also read that the CEO can take administrative action if the action taken by a computer program is not correct or “preferable”. But what does preferable look like? Preferable to the livelihood of participants? Preferable to lobbyist interests? The Minister’s views? National budgets? Preferable to the tastes of other stakeholders? I hope to see some more clarity around this use of language. I also hope to see further protections added here, so that these decisions are made by a board of people in consultation with the disabled community rather than one overarching voice.

The use of automated computer systems trickles into my other concerns.

2. When the human element of administrative work is minimised, we miss opportunities for reasonable and flexible support arrangements. While I can see the use of AI systems being helpful (like when audio to text services are used to summarise in person meetings) I feel this level of dependence on automated systems will, in many cases, fail to accurately provide the support actually needed by participants. The support that each person requires is nuanced and varies greatly between participants. An automated system erases the nuance and could provide inadequate funding for essential services, or potentially overfund areas less important for that particular participant and wasting precious resources. My biggest worry is that disabled people will go without integral, life saving support if they are given an inaccurate plan, due to the lack of human review in decision making processes.

3. The amendments being put forward around plan renewal and reassessment don’t seem to adequately accommodate reasonable changes within fair time frames. Where adjustments are required, plan reviews should be accessed in a timely and personable way. Despite the permanent nature of disabilities, unpredictable circumstance changes happen and recipients may require a plan review before the next scheduled check in. Timely assessments are essential for maintaining accurate and up to date plans that reflect the participant’s current goals, needs and circumstances. The proposed elongation of time between plan assessments, including 90 day turn around times (currently 21 days after a participant requests reassessment), places participants at risk of receiving inadequate or irrelevant services or treatments when it is needed. To burden this vulnerable community with administrative roadblocks goes against the very nature of providing accessible services to disabled folk.

Submission 2258

4. I also oppose the proposed changes allowing ministerial powers to adjust (cut) funding to entire categories. My understanding is that funding levels for certain groups of supports may be adjusted at a systemic level rather than based on individual needs. I have a few concerns with this. Firstly, defunding and underresourcing entire areas without personalised considerations for each participant has damning potential to cause harm and suffering to participants and their families. Secondly, ministers may be swayed to implement category cuts based on public perception or news cycles, for example, defunding social participation because of bad faith news headlines and public pressure. In my opinion this is one of the most dangerous changes put forward, one that will directly burden disabled folk and consequently apply greater pressure to our overwhelmed medical systems, schools, public services, mental health specialists, Families and care facilities.

5. It feels like I’m stating the obvious here, but disabled people won’t suddenly stop needing support when their funding is cut. So, this leaves me with lots of questions about the tangible impacts that would follow the implementation of the proposed changes.

How will (ex)participants continue to access services essential to their individual needs? These proposed changes are intended to flow on and impact mainstream service providers. With the expected increase in demand (particularly for low cost/free services), what measures will be taken to aid a smooth transition? How will supply increase to keep up with the new demand? Will vulnerable disabled people be harmed in the process? How will this harm be reduced? Will people already in mainstream systems suffer due to poor planning or mismanagement of resources? Will the costs of mainstream services surge with demand and become inaccessible for both disabled folk and the wider community? How will working class people fare when they are expected to step away from their paid work to care for their disabled loved ones?

Are the proposed changes to this bill really the most efficient way to achieve long term financial sustainability?

6. I do have more concerns with other proposals in this bill. I oppose some of the language changes defining ‘functional capacity’, ‘reasonable and necessary’ and ‘permanent’. With reference to schedule 1, part 1, amendment to section 9B definition of functional capacity part (2) I believe that health care professionals are best equipped with the knowledge to diagnose, define and identify functional capacity issues better than NDIA legislators. I’d like to see more OT’s in particular in the space of defining functional capacity rather than NDIS employees. As for reasonable and necessary, I can understand why “so far as is consistent with the financial sustainability of the scheme” has been added, however this is vague and may result in the unfair denial of necessary

Submission 2258

support for participants (especially items like motorised wheelchairs or in-home modifications). I understand clarity is provided in schedule 1, part 6, amendments 72 and 73. I believe the CEO should be required to collaborate with health care professionals in order to justify their conclusions on reasonable and necessary support that should or should not be funded.

7. I’d like it to be noted that I haven’t even touched on the specific changes for children and families, which without careful consideration will also contribute to burdening mainstream services. While proposed amendments to this area of the bill also concern me I worry I don’t have the capacity to expand on that just yet. Truthfully I am exhausted and cannot spend much longer in front of this computer.

Final statement. NDIS funding is an investment in all Australian people. Many of the proposed changes to the NDIS Amendment Bill are seemingly half baked concepts that lack adequate foresight. Increases in automated processes, reassessment roadblocks, ministerial power imbalance, the redefining of language and the consequences that may follow on from these proposed changes are my driving concerns. Disabled folk are worthy of generous support, and with access to appropriate services we contribute in meaningful ways to the wider community. If the desired outcome of these changes is to improve Australia’s economic health, there are far more abundant pathways to consider before gutting essential, life saving funding. This bill doesn’t need to get worse for the economy to get better.

Sincerely,