Submission to the Inquiry on NATIONAL DISABILITY INSURANCE SCHEME AMENDMENT (PARTICIPANT SERVICE GUARANTEE AND OTHER MEASURES) BILL 2021

Tuesday 2 November 2021

Jennifer Knight – NDIS Participant

I compose this submission to the Committee out of duty, despite deep and utter exhaustion. I feel that it is that important. The consultation period has been far too much information in far too short a time. So, I ask the Committee for the accomodation that where my words ask more of your attention than you feel you have to spare, that you might recognise a kind of shared experience in that respect.

The long, drawn-out, obfuscated and adversarial operational reforms followed by this rushed “consultation” with regards to this legislative amendment to the foundation of Our NDIS has required far too much from us, for far too long, as Participants; yet, here we are and this is the window of opportunity to attempt to put forth the important points to substantiate the main point: this amendment must be prevented from proceeding.

Everything about this legislative change has been rushed past Participants, our advocates and allies. The changes have been presented and shifted from seemingly arbitrary conception to incautious reaction, with little consistency apart from the message that the NDIA presumes authority over Participants in a way that erodes our trust by continuing to demonstrate a lack of regard and respect for our position as the primary stakeholders, experts, and decision-makers over what does and does not work in terms of our disability supports.

Being talked down to in this way after having invested the courage of my convictions (along side many other deeply invested Participants and carers, from the community workshops and online discussion through to being part of the co-design reference group – I can say with confidence that all of us, all along the way, were clearly committed to the mindset of making this scheme work, for us and the wider community. Our commitment to sustainability in terms of total economic value eclipses anything I’ve heard come from the NDIA executives or government representatives.), being subjected as a subclass of human who must have permission to do anything, to have to fight for the right to exist, let alone to have the chance to thrive - after everything we’d been through and invested into developing a collaborative working relationship between Participants and the Agency - was beyond disappointing, beyond insulting: personally, I felt a deep sense of betrayal.

For me, being part of the co-design reference group [1] “with” the NDIA felt important, that I had a duty to speak to the difficult issues, and yet as it went on, more and more it became clear that our interface was limited to community liaison representatives who did not seem curious or interested in our input and were more poised to answer our questions about what we could or could not do. This set of huge red flags to me, but I did not guess what would follow. The top-down reforms that commenced just as our reference groups ended came as a shock and stands orthogonal to the efforts and the vested interests of the disability sector, particularly

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those interests who should be held primary: NDIS PARTICIPANTS.

The drive for reform represented in the content of this amendment has not originated from us, despite intense efforts made by Participants and our allies across the nation to inform any proposed reforms. These reforms were not even proposed, they were put out as non-negotiable compulsory requirements with arbitrarily enforced restrictions made from a presumption of authority that subjugates us just as we are building our position in society, enriching and adding to our communities.

I challenge those who claim there was co-design in the reforms handed down by the NDIA or in the changes rushed through in this amendment to the Act to cite what specific efforts have been made to prioritise and collaboratively incorporate the work that already existed and, ongoing, to ensure that Participants continue to be deferred to in the formation of our own plans let alone this most important amendment to Our NDIS legislation.

So long as we are excluded, reforms and amendments cannot and do not suit our best interests.

Minister Reynolds claimed co-design would inform any further amendments to NDIS legislation. On July 12, 2021, Minister Reynolds stated that “After eight years of operations, now is the time to take the lessons of the lived experience and turn those lessons into a better NDIS”. This must be interpreted in the broadest and most inclusive sense, but that is not what has happened. This amendment was pushed through right after the entire disability community were in consensus against the reforms that had been put forth to date. With one month and two weeks “consultation” period accounting for any engagement, it is hard to see how one could argue that our experience and wisdom are being engaged with at all let alone prioritised in our expertise. It is hard to see how the short time-frames with no extensions given to digest and give feedback to fully formed legislative changes made without our involvement can be interpreted as anything but the opposite of what was promised. It comes across as an effort to prevent our united front from reclaiming our position as the natural authorities over our lives.

So far as this hasty push for reform was conceived and constructed outside the scope of our community it can be interpreted as nothing but a power-play. This is incredibly inappropriate, and as such it is ill-formed, suspiciously incentivised, and put forward in a decree against us that makes it clear that Participants of the scheme are to be Participants in name only.

We have already seen the degree to which the government and agency executives are willing to employ adversarial positions when we seek funding for the supports we require. And we have seen how substantially we have been underestimated in our capacity to push back against any efforts to disempower us. But what I would like to see is an acknowledgement by those who presumed to assign authority against our interests (instead of constructing a scheme that ensures we are supported and not resisted) that this has not been well handled, mistakes were made, with a genuine willingness to repair the rupture and make the NDIS work for Participants as the primary stakeholders. Whereas the current reforms and amendments to the Act have consistently taken the form of assigning power to the

NDIA to issue rules and restrictions without context or consideration, the expectation is that refined reform would represent well formed guidelines, guarantees, protections, and assurances reflecting and securing the interests of Participants.

  As a result of persistently ignoring our input, the operation of the scheme

under this government has been consistent only in the level of incompetence as operational directives changed faster than the understaffed NDIA frontline staff could keep up with. This resulted in the very inconsistencies that were then cited as reason to presume even more authority by introducing independent assessments. Instead of acknowledging the source of inconsistency measured as inappropriately funded plans, they reduce us to budget personas, forcing consistency to cover inadequacy. These are concepts that could only be constructed by people who had little to no understanding of what constitutes economic investment in disabled individuals in all of our nuance and complexity. I wish to remind the committee that Participants are the primary targets of the investment and should be the primary benefactors of the scheme, a point which seems to have washed over legislators.

 Due to this continued mishandling, there is now a fundamental lack of trust.

This must be repaired, and those responsible must hand over to Participants so we can take it back to the drawing board, with us at the helm of the construction. This hasty and audacious bill is a shameful example of what happens when those with power presume authority rather than performing the administration of their public service.

In our response against the proposal of Independent Assessments, our government

and our community has recently witnessed how credible, cohesive, and prepared the disability community are to inform the agency of the core concepts that must be centred in terms of what would work well, and what kinds of actions would be problematic in implementing the scheme. And yet rather than recognise, respect, and engage with us we have seen over and over again how reluctant the government and NDIA executives are to defer to this expertise in a way that centres our voices, not theirs. We communicate for ourselves. This must be not just understood but should be the primary basis of legislation such that no section, rule, or procedure undermines our natural authority over our lives.

To reiterate:

• Fundamentally, the NDIS is an administrative supporting funding body and yet, increasingly, the government and NDIA have been adopting an authoritarian rule-based approach: restricting rather than securing funding for individual, personal, private, and yes reasonable and necessary disability supports. The Act must ensure that the administration of our funding is streamlined, fit for purpose, and customised to benefit us, free us, not judge and restrict us.

• These amendments are being rushed, coming shortly after the government’s attempt to install overseers in the form of “Independent Assessors” to reduce our authority in our “Participation.” Imposing limitations around the provision of disability supports on an individual basis is contraindicated and is a fundamental violation of good sense. This kind of design would be costly,

risky and invasive. It is arbitrarily leveraged against the best interests of disabled people (as determined by us), our self agency, and our free and unfettered engagement in our fullest and least-regulated lives. The amendments reflect the same kind of ill-conceived approach where authority is presumed and burden is imposed in the way of providing support.

• When we determine disability support funding, we must minimise the cost, risk, and harm imposed upon the targets of our investment. We must maximise the opportunity to make the best use of the funding as determined by the individual Participant. Importantly we must recognise the right to privacy and autonomy of Participants and this is violated in so many aspects of this legislation.

• Sustainability must be found in laying down foundations, systemically, to enhance network effects of the collective and diverse wisdom we bring to the table.

• This Act does little to protect and preserve the fundamental rights of disabled people. This is what should be the primary priority. It should lay down foundations and protections for provision of funding that is expected to cause great gains in the wellbeing, standing, assets, and position that disabled people are supported to manifest.

• Where the Act does seek to make rules, it must be done with recognition that the NDIS must not make judgment calls about how we live our lives or how we use our funded supports in our endeavours. Such concerns are better placed in positive and proactive engagements, in deference to disabled people, via safe and levelled discussions and negotiations about what disability supports we require and how to best secure these for our individual, private, gainful, purposes.

  When we take all of this together: the haste, the reform-makers’ track-record, the wild swings impacting and destabilising Participants and Providers - coupled with the singular focus on granting powers to the NDIA where we should be codifying how to best support disabled people - it would seem the government is showing its hand and acting in bad faith without regard for our safety or wellbeing.

      There has been no demonstrated movement toward building a competent,
  

  coherent, world-class investment into funding the supports for individual disabled people within a disability community. The government has made no use of all the work we have been collectively building in good faith to create a thriving culture. There is continued demonstrated effort to install limitations and excessive rules, costly overseers, restrictive financial instruments, all with arbitrary control to leverage against the interests of disabled people by requiring the burden of securing support onto the disabled Participant without granting the individual the power and freedom to in determine the best, most straightforward method of custom, individualised, support.

      That isn’t just bad construction, it is contemptuously so.
  

For example, while this is being pushed through, under the heading of Quality Assurances, planners are reporting that they simply are not able to put any attention into making a good plan. The restrictions put into place on the amount of time that planners have to construct each emerging plan coupled with the volume of plans and staffing caps result in low quality plan construction. The current executives and ministers have seen fit to install these “assurances” all the while gaslighting disabled people into accepting that it is in our best interest because it reduces the time taken to produce these poorly formed plans. When a plan is inadequate, it takes additional time to administer a review. This is time that Participants must invest in order to survive, time that is therefore not available for the activities and therapies that improve our functional capacity and reduces our level of certainty and increases our ongoing anxieties about how to manage our already limited capacity, contrary to the purpose of the scheme. It takes time to rectify mistakes and omissions, both for participants and for those administering the NDIS. It would make more sense to get it right in the first place.

A more effective approach would be to ensure that there are sufficient staff who are engaging with disabled individuals as well as the disability community to ensure that people are being well supported and that plans are well crafted and are able to evolve and grow with people over time with a level of certainty that can be relied upon. That is, after all, the purpose of the scheme. To empower the life-long participation of disabled people in our lives and inclusion in community on our terms.

This situation is in urgent need of repair.

To that end:

I propose it is time to install an organisation that is made up of any and all Participants who desire to actively participate in our scheme and we would sign off on any proposed reforms. Membership would be limited to being an NDIS Participant and all efforts to support people to participate must pass the conflict of interest test such that the NDIA would be prevented in influencing how any member of the group were supported to participate in the scheme, the Participant organisation, the execution of our plans, or any domain outside administrating the provision of funding for our disability supports.