4th October 2022
Submission to the Joint Standing Committee on the NDIS
a. the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment
I have been an NDIS participant since December 2020 and my 13 year old nephew,
who I care for, has been a participant since January 2022, I am his nominated representative and I manage his plan.
I am 55 years old and have had Multiple Sclerosis (MS) and Psoriatic Arthritis (PsA) for
over 30 years. I am Registered Psychologist and AHPRA Board Authorised Supervisor. I am the Practice Manager of a multi-disciplinary team of social workers, psychologists, family therapists and counsellors providing counselling and child development courses to individuals, couples, families, children and adolescents. Some of our clients are NDIS participants. I am an expert in child development, have presented at numerous conferences, published two externally evaluated and internationally recognised parenting programs and have worked for a large NGO in Sydney for over 30 years. I have been a manager and clinical lead for over 20 years and am used to working alongside large government organisations eg DCJ, the Supreme Court, the Family Court and DSS and working with multiple community partners and agencies. Given my professional background and experience I thought I could manage the NDIS. I was wrong.
My first real experience of the NDIS was actually before I became a participant. A friend of mine who is a fantastic Planner with the complex case team, with years of experience in the disability sector, was having a housewarming party and had invited a
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number of her work colleagues. A group of at least 6 of her colleagues plus myself and a couple of others were sitting around chatting about all sorts of things when the conversation turned to their work. Not knowing me, my professional or personal background, they started to talk disparagingly about participants. They maintained confidentiality and spoke in a general nature. I didn’t participate in the conversation, just listened in amazement at the way they were talking. One of the group then said they (participants) better prove to me they really need that money before I’m giving them anything.
I will never forget that sentence as it horrified me. Given the context of being at a friend’s party (she was inside at this point and didn’t hear or take part in the conversation), I didn’t feel that I could say anything to her about it so I just left the conversation and then soon after left the party. That snippet of a conversation is the perfect example of the majority of my subsequent experiences with the NDIS.
I was supported in my application by a staff member of the MS Society. It took a long time for me to go through all of my symptoms and limitations with her but with support from my GP, my application was accepted first time and within a couple of weeks I had a planning meeting. My first LAC (Uniting) and Planning Meeting was very positive. My LAC said she was a social worker who had worked within the disability sector for quite a number of years. She apologised that she didn’t know very much about MS and said she would need to learn from me. She was respectful, engaged, interested and thoughtful. At the end of the meeting, the MS Society staff member who had assisted with my application and had sat in on the meeting said that it was the best experience of a Planning Meeting she had ever had.
I was given a fairly basic plan which had enough to cover the immediate supports I needed and for a functional assessment by an OT. My OT originally worked for the MS Society and had a history working with patients with neurological disorders and acquired brain injuries and she understands MS well. Although she has now moved on from the MS Society she has continued to be my OT however she is now in a supervisory role so I also have a younger OT who does most of the assessments and research etc that I need. She is also my nephew’s OT and has been brilliant with him. My OTs really know their stuff. As a highly experienced psychologist I do a great deal of training, supervision and mentoring of other community
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practitioners and I always recommend that rather than refer a child to a psychologist they would be much better served by an OT.
Over the last 2 years my functioning and mobility has really declined and my OT, physio
and exercise physiologist have written reports for a number of AT items. Apart from an air conditioning unit, every single piece of equipment I have applied for, on recommendation from and supported by my allied health team, has been declined. I am currently in the AAT fighting for it. I have been in the AAT for over a year now and it is heading towards two years from the first application for AT - a specific type of electric wheelchair (an Omeo) and a dome Photobiomodulation laser for pain management. I had my second plan earlier this year and a number of other pieces of AT equipment were applied for but declined and then added to the original AAT application. I am no closer to having any of the equipment I require approved despite dozens of reports and pieces of evidence being supplied.
I am part of a couple of facebook groups for people with MS and people with PsA and
so I am aware of the types of equipment people need and apply for. Most people have received the types of things I have applied for but there are clearly no standard decisions being made. This tells me fundamentally that we have a problem with decision making within the NDIS.
Last year I developed a new MS symptom. My right acoustic nerve was damaged by
the MS. I now have no acoustic nerve reflex and so I have a sensorineural hearing loss, which is in fact listed on the NDIS’ List B of impairments. It is important to understand that the acoustic nerve is also known as the vestibular nerve or the auditory nerve. The acoustic nerve is not just about the level of hearing. As implied by the alternate name, vestibular nerve, it is also connected to balance. It is also used to protect the hearing from loud or sharp noises. As a result of the acoustic nerve loss my already impaired balance has significantly worsened and I have had about half a dozen significant falls in the last 12 or so months. On three occasions I fell so hard I smashed my head, one of them very nearly killed me as I just managed to avoid hitting the side of the bath by tucking in my head and crashing to the floor instead (breaking my finger). There are also certain sounds and pitches that reverberate within my head because the reflex isn’t there and I find it very hard to understand speech when there is any kind of background noise. I have also developed constant tinnitus. I have been assessed by a senior audiologist from the Speech and Language Centre at Macquarie University (one of the country’s leading centres), I have been reviewed by my ENT and my neurologist with regard to the acoustic nerve. There are only 3
Two reasons for loss of the acoustic nerve reflex - MS and a tumour. I have 6 monthly MRIs, there isn’t a tumour, so it has to be caused by the MS. Managing an acoustic nerve loss is tricky, however hearing aids are the best management tool at this point. I took the audiologist’s report and recommendation and later supplied a confirmation letter from my neurologist that MS commonly impacts the acoustic nerve, to my next planning meeting. This time I had a different planner. Whilst he was lovely, he also told me that he had worked in IT until 6 months previous when, because his child had been diagnosed with autism, he decided to apply to work within the NDIS so that he could help people. whilst i applaud his commitment to working in a helping role, why on earth is the ndis, by way of uniting, employing it technicians into a disability support role? what then happened was completely predictable. He said that my hearing “loss” was a new secondary disability. He point blank refused to acknowledge that it was actually just a symptom of ms, my primary disability. I tried to explain to him on multiple occasions that it isn’t but he refused to listen to me and listed the hearing loss as a secondary disability in my plan. Unsurprisingly, the hearing aids were declined because my hearing “loss” wasn’t significant enough to warrant the ndis’ funding of them, despite the evidence supplied from my audiologist and my neurologist and that a sensorineural hearing loss is a List B condition. Of course I appealed the decision internally and was told in their correspondence to me:
2. Funding for Hearing Aids
I have assessed this support against each of the criteria in section 34 of the NDIS Act,
and I am not satisfied that your request is reasonable and necessary.
The reason I have not funded your request is because I am not satisfied the following
criteria and Participant Rules are met.
NDIS Act Section 34(1)(f) criteria: Responsibility of the NDIS to fund.
All NDIS supports must be most appropriately provided through the NDIS and not
other general service or support systems, such as the employment, education, health
and family support services. This support cannot be provided because Rule 5.1 of the
NDIS (Supports for Participants) Rules 2013 prevents the funding of this support. I
have decided the following rules apply:
NDIS (Supports for Participants) Rule 5.1(b): Support is not related to the
participant's disability.
The NDIS can't fund a support if it's not related to the participant's disability. There
must be a direct link or a connection between the disability and the supports funded.
Supporting information provided by your Audiologist demonstrates that you
eperience impaired hearing however, it cannot be determined that your hearing
impairment is a direct result of your disability, Multiple Sclerosis. The NDIS will not
be responsible for the diagnosis and clinical treatment of health conditions, including
ongoing or chronic health conditions. The Health System roles and responsibilities
will continue to include supports such as, diagnosis and assessment of health
conditions, clinical treatment and supports, preventative health, as well as, medical
costs. You may be eligible to access hearing supports and services through the
Hearing Support Program. You General Practitioner can assess and complete a
referral should this be required.
As you can see, the Planner only mentions the audiologist’s report, not the supporting letter from my neurologist (which she had a copy of) and which states:
I write regarding who is a patient of mine with a history of Multiple
Sclerosis for more than 30 years, complicated by psoriatic arthritis. As a consequence
of this she suffers from impaired balance and coordination which has worsened in the
past two years causing falls and associated injuries. An audiometry assessment at
MQ Health Speech and Hearing Clinic has determined sensorineural impairment
bilaterally which is amenable to hearing aids. Sensorineural hearing loss and tinnitus
are a well described phenomenon in patients with Multiple Sclerosis caused by
damage of the auditory pathways.
The use of hearing aids would be very beneficial for in many aspects of
her life including improvement of spatial awareness and balance and therefore
reducing her falls risk, as well as improvement of communication in professional and
social settings.
This is one of many examples where the Planner within the NDIS declines a support,
despite expert evidence from treating professionals. I cannot for the life of me fathom how a Planner can say that the hearing impairment isn’t a direct result of my disability when both the audiologist AND the neurologist both say that it is. As far as being able to access the support through other systems, I’m not eligible and informed the NDIS of this.
One of the fundamental issues within the NDIS
One of the fundamental issues within the NDIS is that Planners do not present evidence as to why a support has been declined. Planners say that they have decided a request doesn’t meet a particular criteria of the legislation but they don’t explain why. This means that participants and their allied health and medical specialists are left in the dark as to why the evidence that they have submitted somehow doesn’t reach the mythical level that some Planners appear to have set.
Until Planners are required to provide evidence and a full explanation of why a support has been declined, we will all continue to suffer under a system that at best makes ad hoc, uninformed decisions and at worst is tainted with the opinions of Planners with attitudes like the one in my very first example.
As a professional who has been required to write assessment reports, a Manager who has supervised assessment reports and a Principal Officer who has been required to submit reports into the Supreme Court, the absolute bottom line is that all decisions or opinions MUST be backed up by evidence. All Allied Health professionals MUST back up decisions with evidence. All Medical professionals MUST back up decisions they make with evidence. Lawyers, Magistrates, Judges, Members of the AAT MUST back up decisions with evidence.
In my opinion, the legislation should be amended, as a matter of urgency, to require Planners to provide evidence for their decisions. All this would do would be to bring the decision makers within the NDIS into line with every other profession who makes decisions. What it would also do is prevent the current situation of Planners making arbitrary decisions where some approve a support whilst another declines the same support. It also protects the Planners from potential complaints and any performance management processes. I cannot believe that in 2022, a large government department doesn’t have this as a basic operating procedure.
The other issue that is patently obvious is that either Planners don’t read the reports that are submitted or they don’t understand the reports that are submitted. This is an issue that I have experienced overwhelmingly but is also one I have heard other people express on countless occasions. Both of these are completely unacceptable. My OT reports are littered with the sentence “as previously mentioned in report xxx”. My Allied Health professionals are at a loss as to what else can be put into their reports. They have answered every question about every single piece of AT that has been requested but the same questions continue to be asked. An example of this is in this response to reports from my physio:
- Funding for Symbyx Laser Photo bio modulation device
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I have assessed this support against each of the criteria in section 34 of the NDIS Act, and I am not satisfied that your request is reasonable and necessary. The reason I have not funded your request is because I am not satisfied the following criteria and Participant Rules are met.
NDIS Act Section 34(1)(d) criteria: Effective and beneficial. To meet this criteria the support will be, or is likely to be effective and beneficial, having regard to current good practice and evidence. This means we consider if there is sufficient evidence to demonstrate the requested support is likely to be effective and beneficial for someone with similar disability support needs and assist in progressing towards NDIS goals. I am not satisfied this support meets this criteria.
My physio had provided reports and multiple letters and was then asked a number of questions by the NDIS about her experience and the efficacy of the laser. Apart from attaching links to 5 specific pieces of research regarding the laser’s efficacy she also said:
I have worked closely with pain specialists using laser photobiomodulation treatment that has research backing both from my own PhD and over 3,000 peer reviewed publications. I have conducted clinical trials using PBM, which have been recently published and presented at international forums.
In her response, my physio offered to link the planner to any of the additional (3,000 plus) pieces of research/evidence that they may require. When the Planner said they weren’t satisfied the support meets the criteria of evidence to show the benefits of the device, I have to say, I was bewildered how this could be the conclusion when my physio had linked them with 5 specific pieces of peer reviewed clinical evidence in publications such as The Lancet and states that there are over 3,000 peer reviewed papers about the benefits of photobiomodulation (PBM or laser). How does this not meet the criteria of enough evidence? Again, it’s just the Planner’s opinion that it doesn’t meet the criteria but nevertheless the support is declined. How can anyone argue with what can only be described as wilful ignorance when so much evidence is offered? I should also point out that the laser that has been declined, costs less than $2,000.
In my first case conference at the AAT, the lawyers (Ashurst) representing the NDIS said that they wanted me to have an independent trial of the Omeo wheelchair I had applied for.
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I asked why I needed to have another trial and expressed my frustration at this because the
closest suppliers at that stage were in Queensland. I had already had to wait for months to do a trial when the suppliers came to Sydney and now (still in the middle of the pandemic when no one could travel) they were requesting another one. The response from the AAT Registrar was words to the effect of:
because when OTs have worked with families for some time they can't be trusted to
be independent.
There was tacit agreement from the NDIS lawyers. I have found this attitude to be rife
within the NDIS and the former government. It makes me furious both as a participant and as an Allied Health professional. ALL Allied Health professionals are required to work within a very clear code of ethics. As are Medical staff, as are Lawyers. This pervasive attitude breeds contempt and distrust and creates the overwhelming “them and us” attitude which participants are caught in the middle of.
Allied Health professionals are literally constantly having their professionalism
questioned by the NDIS and their representatives. It is the ugliness that sat underneath the former government’s passion for Independent Assessments and it is the ugliness that underpins all the supports that are being declined by Planners. I’m not sure what is at the root of it but it must be eliminated. It seems that the the Planners are convinced that Allied Health professionals and their clients are in cahoots to somehow rort the system and get everything and everything out of the NDIS coffers.
What we all know is that people are grossly rorting the system but it's definitely not
the participants. Yes there are some organisations that are charging higher fees for NDIS participants because the actual NDIS fee schedule allows it. If the NDIS didn’t recommend such high fees, organisations wouldn’t be charging them. Irrespective of the fees issue, Allied Health staff continue to work within clear ethical boundaries and advocate for the supports their clients need, nothing more, nothing less. The true criminals are, as the Minister has publicly called out, the criminal gangs. Participants however are the ones who are being blamed and it is participants who are suffering.
The other concerning example from that first case review was when we were
discussing the Omeo mobility device I have applied for and been declined. As mentioned at the beginning of my submission, I am unlucky enough to have MS and PsA. PsA is a particularly nasty form of inflammatory arthritis. The way I describe it to those who don’t understand the multitude of different types of arthritis, is that PsA is like a combination of 8
Rheumatoid Arthritis and Ankylosing Spondylitis with Psoriasis thrown in for good measure.
Like MS it is degenerative and debilitating. Apparently, some I’m told by my specialists, they often go together. In my particular situation one of the areas of my body than particularly badly impacted is my hands. I need to use speech to text technology, find it very difficult and painful to hold and use a pen, computer mouse, kitchen equipment, cut meat with a knife, get dressed and go to the toilet - basically anything that involves any kind of fine motor movement or pressure with my fingers and wrists. This means that I can’t use a joystick on a wheelchair - I can’t bend my fingers enough to handle a joystick and it really hurts to use my wrists. I also need splints on both my hands which make it impossible to grip anything small. It’s also why using a walking stick is excruciating.
I can however drive my car because my metacarpals aren’t impacted and gripping a steering wheel is completely different to the fine grip needed with a joystick. I also chose a car that has various bits of technology that help eg lane assist, reversing camera etc. The Omeo wheelchair is the only electric wheelchair that is moved by using your core, not your hands. It has a joystick but experienced users don’t need to use the joystick at all. I trialled the Omeo and took to it like the proverbial duck to water. My OT has now written multiple reports supporting the Omeo and explaining why it is preferable to all other wheelchairs or scooters and explaining my particular impairment. The Omeo, whilst initially expensive is actually comparable to the cost of other electric wheelchairs once all the additional equipment is taken into account, which my OT has clearly outlined.
In the AAT case conference, we were discussing the Omeo and their request for the independent assessment and yet another OT report. The Registrar said to me:
we just don't understand how you can drive a car but you can't use a joystick.
My response was that it’s a completely different type of movement and use of my hands. The real issue though was that the question was asked in the first place. What I should have responded was that they are Lawyers, their job is to know the law. My OT is an OT and her job is to understand the human body, how it functions (or not) and what can assist people to be more functional. It actually doesn’t matter if they don’t understand why I can drive a car but not use a joystick. Their professional obligation is to listen to and take advice from the experts and then apply the law. This is just one example of how professionals within the NDIS business are stepping outside of their own areas of expertise
and using their ignorance and opinion to get in the way of the experts in disability. They
decline supports because they don’t understand the disability and how the supports can
increase function.
Essentially, the staff associated with the NDIS need to "stay in their lane". As a
psychologist and as all Allied Health and Medical professionals would know and respect, we
cannot and should never, work outside of our areas of expertise. To do so would be to suffer
professional investigation and possibly being struck off. Why then are the NDIS staff and
representatives allowed to do so?
I have now got to the stage in my AAT application where the lawyers for the NDIS have
engaged independent “experts”. Whilst I understand that independent witnesses are drawn
from a pool of experienced medico-legal professionals, the three that the NDIS have drawn
upon have to be scraping the bottom of the barrel. A quick google search of the two doctors
they are using led me to a cascade of complaints, including for one of them an expose from
a New Zealand investigative television program. whilst i understand that google reviews
and complaints are not the be all and end all of, it does paint a picture when there are far
more quite serious complaints than compliments. The third independent witness was an OT
from Queensland where the confirmed fee was listed as $2,850 per hour. I can only hope
that this was a typo and was the cost for the whole report because quite frankly charging
$2,850 per hour should be the catalyst for a disciplinary matter. As a highly experienced
psychologist my private consultation fee is $2,000 per day. Out of interest, I spoke to a
Professor of OT at Sydney University who confirmed she would expect an independent OT
report fee to be in the vicinity of $3,000 including an in person assessment of the
participant.
None of the independent witnesses met me or even had a telephone conversation
with me. Not only that, but my matter within the AAT was held up because out of nowhere the NDIS requested my whole medical history in order to inform their independent witnesses. I, of course, objected to this and they subsequently brought the timeframe down
to 5 years. I objected again and the AAT made a decision to release more than I wished, but not the whole of my medical record to the NDIS. The decision was eventually made in September 2022. Imagine my surprise therefore when last week, I received the reports from the independent experts dated March 2022. I’m not entirely sure what the rigmarole around the release of my medical records was for if they already had the reports and were holding on to them without releasing them to me or the AAT.
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Unsurprisingly, the independent witnesses had no experience with either MS or PsA patients and their reports were full of (incorrect) assumptions both about me and my disease course and the actual diseases themselves. I have submitted my response to the AAT along with evidence. Whilst I understand the Joint Standing Committee doesn’t have jurisdiction over the AAT, the behaviour and attitudes of the NDIS and their representatives speaks volumes about them and their “top end of town” lawyers.
My final point about my experience with the NDIS is in relation to their record keeping. When I applied for and was approved into the scheme, my ARF stated that my primary disability is MS and my secondary disabilities are PsA and Hypopnea (similar to sleep apnoea). Of course that in itself is absurd, as Senator Steel-John has asked on many occasions, how on earth do people with disabilities decide what is primary and what is secondary?
I recently had a conversation with an LAC to set an appointment for my upcoming plan review meeting. Prior to speaking with her, informed by my last experience of an LAC, I asked her if she had any experience in the disability sector. I was pleasantly surprised when she said she had worked in the disability sector for 4 years and also has MS. When we spoke, she asked me if I had a negative experience previously so I told her about the former LAC. She was appalled and apologetic. She was lovely. She also noticed that on my file there is no secondary disability listed. Someone, who was entering my details into the system had not listed all my disabilities. I believe, although I have no evidence, this is partly why I have had such trouble having AT requests funded. I can’t see how my information is recorded in the system. There is absolutely no transparency. I was aware early on that an error had been made when my transport funding wasn’t deposited into my bank account. I ensured that the bank details were corrected. I thought this was the only error, clearly I was mistaken. If there is no transparency how do I know what other information has been recorded incorrectly?
I want to now, briefly give you a different story. This story is about my 13 year old nephew and his experience with the NDIS. Our experience with him has been the polar opposite of mine. He has been diagnosed with an extremely rare chromosomal mosaic micro deletion disorder. He is only the 3rd person in the world to be diagnosed with it. It doesn’t even have a name. We jokingly refer to it as “letters and numbers”. He is also in the process of being diagnosed with two other conditions. His medical history is complex and
the disorders contribute to both physical and neurological impairments. He was accepted without issue, into the NDIS in January 2022.
One of his most favourite things to do is ride his bike. Unfortunately his physical
deficits have caused him to fall off repeatedly. Due to his conditions, accidents that are run of the mill for other children, are almost catastrophic for him. He completely ruptured his knee when he was 10. He had a complete knee reconstruction. He is not allowed to run, jump, twist, do any type of sport. Even when swimming he is restricted to freestyle. He ruptured the repair 8 months later. Despite having been “benched” for 3 years, his knee has deteriorated so badly he will need a second full reconstruction next year. This time it will be even bigger, a “grown up” knee reconstruction. He will never be able to join in any kind of sports. This of course is devastating for a now, 13 year old. He also has impairments in his hands which means he can’t grip the handles of bikes and reach the brakes and will be having surgery soon to try and halt the deterioration. He also has impairments in his feet which mean his feet slip off the pedals all the time. Last month, as a result of the NDIS, he became the owner of the most amazing electric adapted tricycle. It’s red, so of course it goes faster! He has cycled to school every day, when he had been refusing to go to school for weeks, convinced he is “dumb” and feels left out of so many things. When he first got his trike he was so excited to go on it, he went on it without supervision and fell off. This of course knocked his confidence and he was so distressed he said he was never going to ride it. The NDIS once again came to the rescue. He has funded a young male support worker and a fabulous Exercise Physiologist. The two of them, over a period of two days, worked with him to increase his confidence and helped him back on his bike. Of course we (his family) could have done this in theory, however as a 13 year old teenage boy, he doesn’t want his family to teach him how to ride a bike. We are completely uncool and know nothing, whereas his EP and Support Worker are young, cool and of course know much more than us. They have given him the support and confidence to be independent.
As I mentioned, his needs are complex. He has speech therapy, EP, hand therapy and
OT. Whilst he has a lot of support, he needs a lot of support and doesn’t have quite enough but we can manage. He also has funding for positive behaviour support. Unfortunately the waiting lists are endless.Whilst I have found a wonderful Centre for Neurodiversity that he could go to and make enormous progress, because they don’t offer “positive behaviour support” as defined by the NDIS we can’t access their services. This would be the only significant frustration I have with his plan. Apparently that funding is quarantined and whilst 12
I appreciate the reasons, in a system that is bulging at the seams I think practically, if the
eresourceful parents of children with specific needs find an alternate reputable service that
will meet a child’s needs, the plans should be flexible enough to allow for that. As it is, I’m
concerned that his behaviours will deteriorate in the time it will take to get to the top of a
waiting list.
In order to make any amendments to his plan, we will of course have to go to a plan
review meeting (or whatever they are currently called) and like all parents, we are worried
that his supports will be cut. In the meantime we wait and watch him go downhill
behaviourally because we don’t have enough support funding to pay for it out of another
bucket. Sure we could stop speech or EP or Hand Therapy but he needs them all so we are
caught in a dilemma of deciding which need is the greatest…