NDIA Accountability Project

Electric wheelchair funding challenges for son with severe physical and mild intellectual disability

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Joint Standing Committee

on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600 ndis.joint@aph.gov.au

               Submission to the

Parliament of Australia Joint Standing Committee on the National Disability Insurance Scheme

    on the Capability and Culture of the NDIA

                      17 October 2022

                  By Heike Fabig

Thank you for the opportunity to submit to this Inquiry. My name is Heike Fabig. I am a mother of three children, two of which with significant disability and National Disability Insurance Scheme (‘NDIS’) participants (one deceased). I am also a disability activist, Masters of Law student, and law tutor.

I believe the main problem with the capability and culture of the NDIA is the disjointed and deficient knowledge of staff and planners who seem to have little or no experience with the equipment they deliberate over, and yet present an attitude of knowing more than qualified professionals while making important decisions about client’s plans and lives.

This infantises the very people the NDIS aims to support and reduced the very capacity the NDIS aims to increase.

Let me recount my most recent experience with the NDIA to illustrate what I mean.

I am nominee for my youngest child who is 16 years old, and has a severe physical and mild intellectual disability. We self-manage his plan and gradually teaching him how to manage his support workers and engage with the NDIS bureaucracy, with the aim of him once day fully self-managing his support.

  has used an electric wheelchair since he was two and a half years old. We have always

purchased those powerchairs ourselves, although we received NDIS funding for his seating systems on some of those chairs. We bought his last chair, a Permobil M5 in 2019 when his

Older Chair

older chair (a Levo sit-to-standing electric wheelchair the pre-NDIS system did not fund) unexpectedly broke down and we could not wait for the NDIS process to obtain a new chair.

In 2021 we relocated from suburban Sydney to the NSW South Coast for a slower pace of live more suited to degenerative condition. Now, in 2022, his Permobil M5 wheelchair is coming to the end of its natural life, exacerbated by the semi-rural conditions it is used in since our move to a regional area.

On the 5th of September 2022, , our Occupational Therapist (OT)1 submitted to the NDIA an Assistive Technology Assessment for a replacement power wheelchair, together with the signature page and quotations by the supplier (‘the OT Report’).

On Friday 16 September 2022, I received the following email from someone who identified himself as our planner, insinuating the application would be declined:

            Greetings some feedback on the application.
  • Sufficient evidence has been provided to demonstrate the need for a scripted powered wheelchair with seat elevation, hi-lo function, and leg elevation.
  • The requested magic mobility 360 PWC does not fulfil Section 23.1c of the NDIS Act 2013 or Rule 3.1a of the NDIS (Supports for Participants) Rules 2013.
  • It is noted that limited wheelchair bases were explored and trialled, and that he also owns a Magic Mobility X8 wheelchair for accessing rough terrain and sand.
  • Lower cost wheelchair bases such as Magic Mobility V6, or the permobil range similar to his current chair (such as M3) or other brands of wheelchair with the ability to handle rougher terrain may meet his needs at a substantially lower cost (Rule 3.1a).
  • Based on quotes previously received by the NDIS other wheelchair bases are available with similar features in the cost range of around $34,000 to $38,000 including seating. Please explore lower cost wheelchair bases. If lower cost bases cannot meet his needs, robust clinical justification is required including trial outcomes. If you would like to make a co-contribution to get a Magic mobility this option is available to. Thank you

Insurance Scheme (Supports for Participants) Rules 2013 (Cth)

It is poor practice to “tell people off” by referring to the wrong section. But most importantly, it seems the planner had not actually read the OT Report.

The OT Report is 18 pages long (and produced at a cost of $1,163.94, paid for by the NDIS) and outlines how the Magic Mobility 360 satisfies all the requirements (including subsection 1(c)) of s 34 of the Act – and rule 3.1(a)-(f) of the Rules.

Our OT has years of professional experience and has appeared on numerous occasions as medico-legal expert witness in disputes. She has been our OT since 2020, has visited us numerous times at our house on the South Coast, and has a detailed knowledge of needs and circumstances. Her professionalism cannot possibly be doubted.

The planner’s point that ‘lower cost wheelchair bases such as Magic Mobility V6, or the Permobil range similar to his current chair (such as M3) or other brands of wheelchair with the ability to handle rougher terrain may meet his needs at a substantially lower cost (Rule 3.1a)’ is not only factually incorrect but actually seriously erroneous.

Firstly, with regards to his reference to the Permobil, his suggestion of the M3 demonstrates either a limited knowledge of the differences in powerchair bases, a cookie-cutter approach, or a fixation on costs to the detriment of people’s needs.

The Permobil M3 (cost of around $41,000) has a 2 pole rather than 4 pole motor and is designed for metropolitan or indoor use and entirely unsuited for the semi-rural conditions deals with here.

The Permobil M5 with the necessary seating would cost around $51,000 – hardly a cheaper option than the requested Magic Mobility 360 costing $43, 238.50!

In addition, Permobil chairs are not serviced by any provider anywhere on the South Coast. This means we have to wait days for someone to come from Sydney to get the chair serviced or repaired – which in turn means has to remain in bed and cannot attend school since he has no backup chair. It also means the price of the repairs (of course all paid for by the NDIS) becomes unnecessarily expensive. All these points are addressed in the OT report.

We identified local wheelchair suppliers and repairers (one in Nowra and one in Ulladulla) and looked at the chairs they service - being Quickie and Magic Mobility. This way, chair repairs can be expediated (and he can attend school and access the community) and we support regional local providers in line with stated NDIS goals.

‘take account of what it is reasonable to expect families, carers, informal networks and the community to provide’ (subsection 1(e)), and ‘most appropriately funded or provided through the National Disability Insurance Scheme’ (subsection 1(f)).

  • Secondly, with regards wo the V6 suggestion, we did identify and trial the Magic Mobility V6 – the chair’s full name is the Magic Mobility Frontier V6.5 This again demonstrates a lack of knowledge, carelessness, or that the planner did not read the OT Report properly.

The OT Report explains in detail that three chairs were found to be suitable to the semi-rural conditions here and that can be serviced locally on the South Coast: the Quickie Q700, the Magic Mobility chairs Frontier V6, and the Magic Mobility 360. All three were subsequently tried.

We found the Q700 not appropriate for the local terrain. In addition, it did not fit in our modified car. We then trialled both the Magic Mobility Frontier V6 and Magic Mobility 360 chairs. The Magic Mobility Frontier V6 would have been preferred chair. It “looked cool” and was easy to drive inside. However, it did not handle the outside terrain6 as well as the Magic Mobility 360 and most importantly, did not fit into our wheelchair accessible car (modifications which the NDIS paid for in 2016 at the price of $29,950.00). To choose the Magic Mobility Frontier V6 for would mean this money is now wasted, and we would need to obtain a new car and NDIS funded wheelchair modification. We did not think that would be ‘reasonable’ and ‘value for money’ as per s 34 of the Act and Rule 3.1a of the Rules, and we arrived at the decision, all clearly outlined in the OT Report, that the Magic Mobility 360 is the most suitable chair for . As the report explains, the chair is comparable, cost effective and recommended for where we live, fits in our modified car, and thus complies with ss 31 and 33 of the Act.7

I do apologise for the detailed information provided above, but it is crucial to my point regarding the capability of the NDIA.

Our OT has been working as OT for many years. She signed part 5 of OT report, she put her professional reputation on the line with the application. Her professionalism is not in doubt – The NDIA has relied on it in AAT appeals where they relied on her as their expert.

In contrast, according to his LinkedIn profile, the planner who assessed our request has no such expertise. His listed expertise is ‘Communication using Graphics design, GIS datasets and complex sensitive data.’ His badly written email was full of factual errors and spelling mistakes, and came across very unprofessional.

I appreciate spelling is not important as long as the message is conveyed properly, but I do expect better from someone who self-identifies as being ‘experienced in Communication’ and having ‘extensive direct and ongoing customer and client service skills.’ I think it is fair to expect planners to refer to the correct sections of the Act when communicating to people their application for equipment is insufficient. I would also expect them to read the report provided to them and educate themselves on the equipment options contained in it. Berating people

they haven’t tried a certain wheelchair when the report clearly states they have but the planner mixed up the name of the chair is at best careless and at worst disrespectful.

This goes to the heart of the capability issue at the NDIA. On what basis is a planner able to assess my son’s needs better than his OT? Indeed, what is the point of the extensive (and expensive) OT reports and trials (required by the Act8 and Rules9) if they are not taken into account when making decisions? Have planners simply been provided with decision-making templates based around cost reduction rather than the individual needs of the NDIS participants.10

We were basically told by a planner that we should accept a lesser solution for our son based on an arbitrary price consideration, completely disregarding his individual circumstances. I have heard similar stories from other parents. The onus seems to lie with the person with disability (PwD) to challenge a decision.

Being a disability activist, I have lots of friends who are either NDIS participants or parents of NDIS participant. I know we are not the only people who have experienced this. I have a friend who requested (also via an OT) an Omeo wheelchair, which would be perfectly suitable for her condition. This was declined by the NDIA and she was “talked into” accepting a “cheaper” standard electric wheelchair or receiving nothing. It now mostly sits unused in her garage, since unlike the Omeo, the wheelchair does not fit in her car.

Hers is not the only story I personally know about people accepting lower cost yet unsuited equipment. Surely this goes totally against ss 31 and ss 33 and 34 of the NDIS Act, the aims and purpose of the NDIS, and indeed Australia’s obligations committed to under the Convention on the Rights of Persons with Disabilities.11

The NDIS was conceived as a ‘a substantial and enduring reform that will fundamentally change the nature of disability care and support in this nation.’12 Its purpose was articulated ‘to support the independence and social and economic participation of people with disability (…) to ensure people with disability have their reasonable and necessary support needs met and are supported to exercise choice and control over the planning and delivery of their supports’ and ‘promoting innovation in the provision of supports that maximise independent lifestyles and full inclusion in the mainstream community for people with disability’.13

  • The agency seems to hone in on the “sustainability” – read, cost – of the scheme14 to the detriment of the choice and control element.15

  • The current approach seems to reinforce (learned) helplessness of people with disability and created waste.

  • The confidence and capacity of participants is systematically undermined. People follow the process – spend money on assessments and reports16 – only to have them questioned by planners with little or no experience of disability, who seem to make decisions without reading the reports that have been provided.

  • Anecdotal evidence suggests applications for personalised, higher end equipment seem to routinely be rejected until challenged by the people with disability. There seems to be some odd perception by some inside the NDIA that people with disability want fancy stuff (not helped by previous incorrect comments around prostitutes and yachts).17 There is nothing fancy about customised electric wheelchairs.

  • Meanwhile for the participants, the struggle to get the supports they need has not got any easier, and the bureaucratic nightmare seems to have become bigger. This adds a level of time investment and stress we really don’t need in our already busy and complex lives.

  • But more fundamentally, by arguing about plans, ignoring specialist reports, making people go through endless rounds of specialist reports, applications, reviews, and AAT appeals,18 the NDIA is undermining the very confident consumer and consumer market it says is trying to create.19 There seems to be an underlying presumption of incapacity (if not malevolence) of people with disability at the NDIA, the very agency that aims to increase capacity of PwD, exemplified by a culture of cost cutting and interference with independent reports of OTs and other professionals. This attitude is fundamentally mistrusting and infantilising.20

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I am pleased to report that after my OT and I re-iterated the points above to the planner, I received an email the application was approved. Rather than a variation of his plan, received a whole new plan, commencing that day, on Monday the 10th of October.

This was unexpected, but fine.

I had some outstanding invoices to claim on the old plan. When I tried to claim 2 invoices using the mobile phone app (which is wonderful, by the way!) I was unable to do so since the invoices were dated before his current plan.

I thought I’d better find out how to correctly claim those invoices.

I contacted my LAC. He had no idea and said he would get back to me. True to his word, the friendly chap rang me back and directed me to a Bulk Upload Form on the NDIS website. But that turned out to be some CSV thing designed for service providers which required codes I do not possess. I contacted the LAC again, and after speaking to his supervisor, he directed me to call the NDIA and ask to be referred to the Payment Team, and they would then send me a form.

I rang the NDIA – and was promptly told about the Bulk Upload Form. I explained the inadequacy of the form asked to speak to the Payment Team. I was informed mere mortals are not allowed to speak to the Payment Team, and she knew of no form. She went to ask someone, and came back with some wonderful information: ‘Just email the invoices to the NDIA via the general enquiries email address’.

Great. So I emailed my three invoices. I received three different replies from three different people at the NDIA.

One told me they had ‘sent my enquiry to the telecast team to action’. The other said ‘the documents have been uploaded to [the service provider]’s record for the relevant business area to review’. The third informed me that ‘unfortunately I must include a completed payment request form and invoice for the NDIS to action’ and tells me to please do so. My invoice was attached. I have no idea what this payment request form is or where I can find one. I emailed back to inquire…

I thought this was quite funny - in a sad kind of a way - and posted about it on Facebook. As many of my friends are NDIS participants or fellow parents of participants, one of them promptly posted the form I needed – a My Plan Purchase Payment Request Form - in the comments. What took me multiple phone calls and emails to LACs and NDIA staff took literally minutes of communicating to other parents!

But even more shocking was what I learned from the rest of the comments. The solution was even simpler: just use the Portal (on the computer) to make the claims on the past plan, not the mobile phone app. It turns out the Portal now accepts the submission of claims on previous plans (as long as it is done within 90 days) in exactly the same way as claiming on the current plan – entirely seamlessly.

Sweet. But seriously – how can it be that neither LAC nor NDIA staff know this?

On the one hand, the NDIA positions itself as knowing better than PwD (knowing better than OT and similar professionals) yet on the other, seems unaware of its own procedures, procedures the participants know inside out.

‘Nothing about us without us’ still stands as a fundamental guiding principle.

No doubt safeguards need to be in place to prevent misuse of the scheme – but it is time the NDIA goes back to the roots of the NDIS and treats people with disability with dignity and respect, and acknowledges them as experts in their lives. It is positive the NDIA board and new CEO have people with lived experience of disability. The scheme was a fundamental paradigm shift and a much-needed reform that does our nation credit. The capacity and culture of the Agency administering the scheme need to undergo similar paradigm shift.

Let’s implement it the whole way and acknowledge and accept people with disability as active agents, in control of their lives, and able to navigate their care and needs when given the resources.

Heike Fabig

I can provide: - The OT report - Planner emails and responses - NDIS email answers to my claims,