To the Commission:

I write to detail my experience trying to access funding to replace my ageing wheelchair. The ordeal has been a months-long nightmare, with no resolution in sight. I have records detailing bureaucratic failings, overreach, ablism, dishonesty and possible malfeasance.

About Me

I’m 51 years old. I live with my wife and our dog in I was diagnosed with multiple sclerosis in 2003 and my condition is currently classified as primary progressive with ongoing weakness and spasticity. I am a quadriplegic.

In the second year of COVID, my wife and I remain members of the high-risk cohort for adverse outcomes or mortality should we become infected. Although we are both vaccinated, we have lived under continuous voluntary lock down since February of 2020, with no realistic end in sight. This has naturally greatly amplified our social isolation and curtailed our community participation. Add to this ongoing employment and housing uncertainty (not to mention the Black Summer bushfires as near as from our home), and we have been living under continuous severe stress. The NDIS has greatly amplified our fear and uncertainty.

My NDIS Story

I joined the NDIS early in its rollout. The transition from state-funded supports was bumpy but positive, with the inevitable teething problems of a new bureaucracy largely smoothed by goodwill and hard work on both sides. My experience in the past 12 months has been less amicable. All goodwill has evaporated, leaving an adversarial, punitive environment, where participants are sidelined, and “reasonable and necessary” is synonymous with “as cheap as we can get away with”

First submission (31 March 2021)

I rely entirely on my F5 power wheelchair (PWC) for mobility and positioning my body to manage pain and pressure. I work full time, and spend 16-18 hours in my chair per day. I am utterly helpless without it. The PWC was prescribed six years ago and requires increasing repairs and maintenance. It was funded by to support my continuing employment. Full standing capability was incorporated to support my work as a workplace trainer, and facilitate reaching server hardware which would otherwise be out of reach. do not fund replacement assistive technology (AT), and will not contribute to a new PWC.

I was assessed in February 2021 for a new PWC. The prescription included a

new F5 base with variations to suit my current needs. Standing was removed and additional supports and padding was added for my arms. The final assessment and request for funding was submitted 31 March. NDIA delegate replied on 17 June. Notable remarks are excerpted in bold.

Whilst the participant states that he prefers to stay with the same current model of PWC, he has not trialled the lower cost F3 in order to confirm whether it could equally meet his needs (Rule 3.1a).

The F3 is a different, smaller wheelbase. I am 196cm tall, weighing 110kg. The more robust F5 base is required for safety; this is a matter of fact, not preference. Furthermore, the delegate is unqualified to prescribe AT. She goes on to state:

The OT states that this was trialled 6 years ago but did not negotiate the participant’s local hills well and thus did not meet his needs. However, the OT also states that the participant “has only accessed his community/been outside his home a few times over the past 12-18 months. This is due to a combination of accessibility in his local community and confidence with using chin control.” Given the participant has had the F5 PWC for this time and yet is still not accessing his local area, there is minimal justification for the heavier duty travel option in the F5. It is unclear how this is likely to change and thus the heavier duty model does not meet value for money at this time (34.1c). Also given the last trial of the lower cost model was 6 years ago, a new trial should occur to assess suitability (34.1d).

Compounding her error, the delegate elides the fact that I have substantially accessed my community, including traveling for social and health outings, participating in face-to-face meetings with my state and Federal members, marching in protests and co-starring in community theatre. All of this is documented in my annual plan, if anyone cared to read it. It should also be noted that COVID-19 has profoundly circumscribed movement for people across Australia. I must reiterate that I am in a highly vulnerable cohort due to my disability, and have voluntarily limited my travel regardless of lockdowns. There is no ground for asserting that I have not accessed my community with sufficient frequency to merit necessary AT.

The delegate correctly notes that I have been approved for Supported Disability Accommodation (SDA), then attempts to justify denial on that basis.

The OT also states that the participant has been approved for SDA funding and thus is exploring alternate properties. It is likely his local environment needs then will change in the near future (Rule 3.1b, 34.1c).

This attempt to weaponise SDA is irrelevant, absurd and grotesque.

Reply to NDIA rejection

(6 July 2021)

We addressed questions raised by the NDIA delegate in our response. Regarding the query of F3/F5 suitability we provide additional details (excerpts in italics are from our submissions):

Richard still needs to access his local area, even though he is doing this less frequently than before. Richard was regularly accessing his local area and still does access his local area. He requires the F5 to complete this not the F3, as the F3 doesn’t have the torque required.
As per AT Request - Upon moving to his current home about 6 years ago, Richard had the lower powered version and was not able to climb the hills near his home and broke down while using on the hill. It was then replaced with the F5.
Consultation with - The changes to the F3 over the past few years would not affect the issue Richard had with the original F3 trial. The F3 was brought to trial. It was deemed that it was not suitable for Richard given the local terrain, unknown future terrain and his body size (100+ kg 6ft5”) for longevity. In addition the F5, having a larger wheelbase (compared to the smaller wheel base on the F3) allows for a smoother drive, less rocky and better suspension which results in decreased aggravation of MS related spasticity and pain. The 4 pole motor of the F5 with the dampened dual shock absorbers is better for Richards symptom management as well as driving accuracy with chin control. We refute the unsolicited prescription of attendant control. Even if Richard proceeded with attendant control which he does not want to,

Page 4

the F5 would be needed to negotiate the hills. The F3 with attendant control would not be able to do this. … Attendant control increases dependence on paid supports, denying Richard his right to exercise his autonomy and independence.

We tackle the contemptible assertion that seat elevation and anterior tilt are not reasonable and necessary. According to the NDIA, the freedom to get my eyes checked, visit the doctor or navigate my local neighbourhood is simply too much to ask for.

Richard uses seat elevation and active reach daily. As per statement from Richard: “Last Friday, I travelled with a support worker down to for an eye- test and a haircut. The trip required the use of each of the queried features. To navigate steep hills (especially uneven curb ramps), I need to elevate the chair and alternately recline or rock forward using the anterior tilt to adjust the traction on the wheels. This is non-negotiable for travel outside my home, The lack of anterior tilt would severely limit my mobility on uneven terrain, potentially leaving me trapped. Furthermore, at the barber, I must elevate and lower my chair; for the vision test, the anterior tilt was absolutely required so that I could reach the eye-test machine. In addition to the above features, we have fully established the requirement for high-torque motors to safely elevate and lower my 100+ kilos.

“None of the above constitutes a special case or singular exception. This is me living my life in the community, which is the exact purpose of the NDIS.”

Eye to eye social interaction relates to humans interacting with each other. E.g. if walking along a path, socialising at home, in the community, Richard not having elevate, the person walking/talking with him would be looking down, Richard looking up. Richard participates in roundtables with his state and federal members of parliament, along with other constituents in his community. Richard participates in protests and marches. As with any other group activity, Richard relies on elevation to look his peers in the eye.

The majority of our response addresses issues which are already outside the remit of an NDIA planner. Why must we repeatedly explain why I cannot use a smaller wheelbase? What possible relevance does SDA status have to my wheelchair? Why on earth are we espousing the basic human dignity of looking people in the eye? And so on.

Second NDIA rejection (13 July 2021) As prologue, I quote my OT’s account. “Tuesday, 13 July 2021 at 10:00 am - called me to say had called her re our response and then she sent an email to and myself at the time I have listed at the start of this sentence. This response was about starting a new plan, lodge a reviewable

decision and submit the request again.“ Excerpts from the planner are in bold.

A full review of the request for a replacement F5 powered wheelchair has been completed with further review and advice from the Agency’s technical team. The request does not fulfil the NDIS reasonable and necessary criteria therefore has been declined with the information below.

The F3 is stated by representative to be able to navigate suburban areas including up most hills.

The representative stated that the F5 is more suited to rural areas with unsealed roads and very uneven ground than the F3. However the F3 is considered more than adequate within a hilly suburban area.

According to the AssistIve Technology OperatIonal Guideline, the NDIS will fund the STANDARD level of support to ASSIST the participant achieve his goals. This standard level of support does not include upgrades that although beneficial, do not meet ALL of the NDIS criteria within the legislation.

The delegate transparently frames my prescribed PWC as an upgrade or special option, treating different wheelbases as interchangeable commodities instead of sophisticated components designed for different use cases. She demonstrates a fundamental ignorance of how AT integrates into a person’s daily life. Even more outrageous, the NDIA has contacted the local PWC dealer to inquire about the suitability of my AT request. I find this deeply alarming for several reasons. First, it raises the question of whether my personal details were shared unlawfully by the NDIA. Second, if private information was not shared, how could any advice be indicative of my needs and safety. This diversion also marks a reliance on hidden assessment criteria which I am not able to examine. This is a major breakdown in procedural fairness which seeks to end-run any resistance from me.

The remainder of the delegate’s response is a self-serving regurgitation which I will not revisit. However, I took immediate action to investigate the external assessment of my PWC and potential leakage of personal information. I contacted the CEO who categorically denies any knowing consultation on my case. I also lodged a complaint with The documents which arose are interesting.

Contact between NDIA (11 August 2021) I quote this email from NDIA Complaints Officer

Phone call with representative –

Page 6

The F3 is stated by representative to be able to navigate suburban areas including up most hills. It is agreed that should it be used for many hours per day and over long distances, a more robust model such as the F5 would have better longevity and less risk of the drive motors being overworked.

The F3 is stated to be able to manage suburban lips and curbs, however it is agreed that the F5 has more torque and a larger base, therefore negotiates lips and curbs with more ease.

Contrast with this note from CEO

I cannot see how the NDIA could interpret the information presented by (as they report it) to be conclusive enough to make a decision on your specific request.

Reading the commentary, Zac in my opinion has done an excellent job in explaining some of the performance differences between the F3 and F5. However, they are generic in nature and should only be a base reference to determine what may be required for a trial of bespoke equipment.

I note that I have never met , he is not an OT, nor is he qualified to recommend, prescribe or service power wheelchairs. An uncharitable reader might conclude the NDIA has selectively chosen answers to support a pre-determined outcome. This juncture marked the breakdown of any trust or goodwill on my part.

The F3 trial

Throughout repeated fruitless exchanges with NDIA complaints officers, I was assured that my request had not been rejected, contrary to the NDIA writing “The request does not fulfil the NDIS reasonable and necessary criteria therefore has been declined” on 13 July. I was assured repeatedly over the phone that the only obstacle to approval was completing a trial of the F3 PWC. This trial was conducted by my OT, a qualified representative and myself on 2 September. The report, including comparison videos, was submitted to the NDIA 20 September, where it languished for five weeks, which is unfortunate, since it’s a worthwhile example of empirical evidence which has always formed the basis for my funding request. I quote the summary:

The F3 was set to the same speed settings that Richard uses and equivalent programming. As Richard uses chin control, he constantly needs to adjust the

Positioning

e position of his chin on the ball to control direction and speed (please see figure 7 video for an example of this). used a similar technique while driving the F3 with the standard joystick for an accurate comparison.

In summary the F3 was deemed extremely unsafe for anyone to use in Richard’s local area. If did not have the capacity to use his legs and upper body to stop himself falling out of the power wheelchair and the wheelchair tipping forward, it would have resulted in significant, if not catastrophic injury.

In short, the F3 wheelbase repeatedly and consistently THREW THE OPERATOR OUT OF THE SEAT on any incline within 1km of my home. Easily discerned in the videos we supplied, the representative is substantially smaller in stature and weight, ie, closer to the recommended use case for the F3. The F3 was so unsuitable to the streets in my area, he had to stand up and brace himself from being literally ejected. Quadriplegics like myself do not enjoy the same option.

What the NDIA will do with this information remains an open question.

Present and Future

I continue to press the NDIA to uphold its responsibility to support my necessary and safe PWC. I am confident that continuing pressure will eventually overcome the Agency’s obduracy. My concern in this issue is that many other participants and advocates will face the same bureaucratic roadblocks. I have contact with other participants who are experiencing comparable challenges, whether for AT or core supports. Some people have the means and energy to battle the Agency, but many do not. Many more are reluctant to rock the boat for fear of making their own situations even more difficult. Participants should never be afraid of the Agency founded to support them. Over the past 12 months, I have watched the NDIA shift from a flawed but positive agent for change to an arrogant, coercive intrusion which ignores the spirit and letter of its legislation. I am just as committed to helping right the Agency’s course as I am determined to achieve the best outcomes for myself and my family. I offer this submission in furtherance of that goal.

Sincerely,

–Richard Larsen