NDIA Accountability Project

Concerns about NDIS assessment process for Motor Neurone Disease diagnosis

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Personal submission to Joint Inquiry into the NDIS

from Ariel Johnson 09 April 2021

Thank you for the opportunity to have a say about some of the Terms of Reference relating to Independent Assessments and other aspects of the NDIS and to relate the story of someone close to me who is benefiting from the NDIS.

I am making this submission from a personal perspective because many of the salient general points have been well covered by the organisations who deal with disability issues. It seems to me – who never knew much about it until somebody close to me needed it – that the NDIS is a wonderful concept and that it can bring great comfort and freedom to some of the people who are on it. It needs a more holistic approach perhaps to link in better with other services and also more ‘marketing’ to justify its existence and make sure it isn’t whittled away. The only valid reason for change is to improve the NDIS to support people better – and there are plenty ideas from groups and individuals about how to make improvements. This doesn’t include cutting back the NDIS and making life harder for people who need help. Using ‘independent assessors’ would only work if the process was open and transparent, the assessment was appellable, and above all the assessor was very well qualified and empathetic. Why is such an assessor needed if the NDIS has built in performance indicators and auditing practices?

I feel strongly that -as with all other policies involving the treatment of individuals – the most important factor in providing something like a service is to construct the system from the grassroots i.e. the client/customer/patient upwards not from the top down. Top down ‘solutions’ are often top heavy in that they are based on cost cutting, economies of scale, expediency, checklist or tick-box, one- size-fits-all fallacies and such criteria which are not relevant to the pressing needs of the person concerned.

The multifactorial approach of the NDIS requires a very knowledgeable, smooth and co-ordinated administration structure. If this is working properly there should be no need for an external assessment unless the receiver or the services feels that their needs are not being met. In that case, an assessment should be made by a very skilled person who is motivated by a desire to do the right thing by the client, a person who is sensitive to that client and their surroundings and who is not afraid to show compassion and advocate for better treatment. If broader assessment is needed it can be done (as it is I assume) by a reputable truth-seeking organisation who has not been directed to a foregone conclusion.

Although the NDIS is by no means perfect, the answer to its problems is not to reinvent but surely to adjust and improve in meaningful consultation with the individuals, their carers, and organisations who know what they’re talking about. The slogan of Acquired Brain Injury sufferers (and others of course) is Nothing about us without us and this means that – as far as possible - clients and if not that individual, their representatives, must be consulted in a real (not token) open minded way without pre-conceived prejudice on the part of those who are doing the consulting.

I hope the rumour that you are considering removing eligibility from people with acquired brain injury and foetal alcohol syndrome is not true. If so, it’s a despicable and apparently punitive notion - something to do with original sin? Who knows?

I have heard that children who are being given speech therapy and other services at school are sometimes visited there by people employed under NDIS without consultation with staff, counsellors or parents which

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makes the treatment less effective because there’s no follow up and the parents who might help don’t understand what to do. Room for improvements there. There is still too much of a piecemeal approach in all government services and NDIS is typical. Why not try to work holistically from the client up as suggested above? It would then be obvious where gaps exist and there might be some hope of fixing them. Remember Whole of Government?? It is government’s job to make society more equitable so that disadvantaged people don’t become more so while being attacked in the interests of “Taxpayer”. If government’s tax system made the rich pay more (viz those billionaires doubling their loot under COVID..), Taxpayer (the middle of the road fantasy figure so beloved of governments who can’t face up to their duty) would pay less and people in the NDIS and on Centrelink would have a decent life. An MND story: Someone very dear to me and to our family has been diagnosed with Motor Neurone Disease/ ALS (Amyotrophic Lateral Sclerosis). This only happened last December when she had an appointment in Sydney with a Professor who is a top expert in the field. She does not want to be identified in this submission because at present she is very happy with the services she’s getting from the NDIS and she fears they will be reduced if any attention is given to her situation. The first signs of any trouble was 2015 when her left hand became weak and lost its grip and began wasting away so that within about a year it was almost skeletal. She has always had a very healthy lifestyle and doesn’t drink, smoke or take recreational drugs despite the legends about her location…. She also avoids any other drugs and since she has been living on the north coast of NSW for about 8 years, she has tried many of the available alternative therapies. Some of them (e.g yoga, pilates) have definitely helped her. She has always taken much care with her diet including only drinking filtered water where possible. The process of getting onto the NDIS and before that the Disability pension is very arduous and onerous and becoming more so because the government seems to have lost the plot and is only using recipients as target practice for cost cutting. I am hoping that the Inquiry is sincere and does actually want to know what we think about the NDIS? This woman (aka XXO) is 52. She is up for assessment in September and that’s already a very scary and threatening prospect even though it’s patently obvious that her condition is markedly worse than it was when she began as an NDIS client (on her third attempt) in 2020 . As you would know, many disabilities and diseases are difficult to diagnose and treat so any assessment can be tricky. She went through years of uncertainty, misdiagnosis and useless treatments. She used to work in various occupations including personal assistant, chef and house sitter. She is particularly good with animals and was much in demand but gradually became unable to manage activities like housework, cooking or taking dogs for walks. She went to India in late 2018 for a 6 week Ayurvedic treatment which didn’t help and cost more than $5,000 (contributed by friends and relatives). in 2017 a doctor in NSW suggested she might have monomelic motor neurone disease. In 2018 a neurologist in Queensland diagnosed multifocal motor neuropathy and began a treatment of intravenous immunoglobulin that did nothing to improve or halt the progression of weakness in her arms and hands. Although her left hand had been virtually useless since 2015, she first noticed weakness in her right hand in November 2019: she had noticed that hand had coordination problems before that. in 2020, she noticed some clumsiness in her left leg and in April 2020 her voice started to change with slurring and problems with articulation. Her tongue feels swollen and she occasionally coughs while swallowing saliva.

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And other liquids. If her food isn’t cut up in small pieces she finds it increasingly hard to swallow. She is losing weight.

She was studying singing for 2 years but has had to give it up because although her breathing is not seriously affected, she can’t carry a note. She can’t go kayaking or cycling walk much at all – all these pursuits used to be very important to her. “Emotional lability” is a feature of MND and she has had many mood swings and – as anyone can imagine – when it ’hits’ her what’s really happening, she becomes very upset. Her abilities vary too from hour to hour – sometimes her speech is reasonably clear other times hard to understand.

She doesn’t want to see the Professor who made the diagnosis again or any other neurologist or even a GP if she can avoid it and is getting some therapies like physio and Pilates etc. She gets good support from NDIS workers in most of the daily household and personal tasks such as cooking and preparing food, washing, cleaning and keeping her company at activities like going to medical and other appointments, swimming, kayaking (helper paddles!) and going to the beach. She has many friends who also help out but her relatives live too far away to be any practical use except on short visits because they have nowhere to stay (she lives in a small studio cabin). Some are on Aged Pension and others work.

The Occupational Therapist report gives an idea of how important the NDIS is to an individual:

Occupational Therapist REPORT

Here is an extract from the occupational therapist’s Report in February 2020. This was done before XXO visited the Professor and her condition has worsened since this report:

I am writing in support of the National Disability Insurance Scheme access request for XXO. The following medical history was obtained from XXO and from specialist reports. XXO has a diagnosis of neurogenic wasting of her upper extremity muscles, with a provisional diagnosis of Multifocal Motor Neuropathy. Multifocal Motor Neuropathy is a rare disorder that results in slowly progressive muscle weakness of the arms and legs, without sensory deficits. XXO reports she first experienced cramping in her left finger in August 2015. By May 2016 she was unable to use her left hand to floss her teeth and by the end of 2016 atrophy was evident in her left hand. She reports her left hand deteriorated in 2018 and in March 2019 her right hand had started cramping and showing signs of atrophy. XXO reports she currently experiences pain and cramping in her right hand, particularly in her fingertips. On observation, her left hand shows signs of significant atrophy, as does the thumb of her right hand.

XXO recently completed a JAMAR hand dynamometer assessment with her personal trainer. The normative grip strength for her age group is Right Hand 29.8kg (SD 5.3) and Left Hand 26.0kg (SD 4.9). XXO’s grip strength was 10.3kg with her right hand and 2.3kg with her left hand.

Impression:

XXO first experienced symptoms in August 2015 and since then has had a slow but progressive deterioration in the muscles of first her left hand, and now her right hand. XXO’s diagnosis has resulted in a permanent and significant disability that affects her ability to do the things that she wants and needs to do in her day-to-day life.

XXO would benefit from accessing the NDIS for the following supports and services:

  • Core supports for assistance with cleaning, laundry, shopping and meal preparation
  • To purchase adaptive equipment for her kitchen
  • To purchase adaptive equipment for grooming and dressing tasks
  • To purchase talk to text soft-ware for her computer
  • Assistive technology to allow her to reengage in leisure pursuits, such as a trike and modified kayak
  • Independent Daily Living funding for occupational therapy for aids and equipment assessment, set up and training

Independent Daily Living funding for physiotherapy/exercise physiologist

 Independent Daily Living funding for physiotherapy/exercise physiologist for implementation and monitoring of home exercise program.

Housing is a priority for many with disabilities. It is absolutely essential that the NDIS or some scheme must – as an urgent priority - find accommodation for people with disabilities. It is farcical to expect that alterations and enhancements can be made to people’s dwellings when there is almost nowhere affordable to rent in Australia at present. So they have nowhere to live – let alone put in a ramp!

X XO has been lucky to find the place mentioned above but she had to also find $200 a week rent – on the DSP!! This is market-wise very cheap rent and it’s only possible because the owner is a friend and because she is being helped by relatives but they aren’t well off; they have previously been paying $350 a week between them.

P eople on the NDIS are not frauds and bludgers (nor are most Centrelink clients believe it or not!) Below please find comments from friends and relatives who have known this woman for years.

Views from two relatives (one male over 70, one female under 60)

On a personal level, I am very sad that X XO has Motor Neuron Disease (MND). She has deteriorated to the extent that she has no use of her hands and Her condition will culminate in complete bodily, respiratory and digestive paralysis while her mind will remain completely sharp and cognisant of what’s going on around her. X XO has dignity thanks to N DIS support. With NDIS she is able to get dressed, eat, get to appointments with health practitioners, get the supporting health and psychological assistance from professionals and feel that there is some hope each day. Her eating is curbed by possibly choking as her swallowing has become affected. H er moods are very up and down which along with declining ability to speak and text makes communication very difficult. I worry about her mental health with this great looming death sentence hanging over her. She has always been fiercely independent and self reliant so this is all shocking to her and everyone around her. To have feel h er support in terms of the NDIS is threatened or even questioned is very, very demoralising and stressful. H er life is very hard even with this support so please do not take it away.

My general view

The review of the NDIS is simply a means of gouging money from the disabled when the money taken by retail moguls for jobkeeper payments to them went into profit and dividends, and its recovery is not even attempted. Before that the obscene Robodebt demanded repayment of debts to Centrelink – debts that never existed and drove some to suicide and many to desperation. The relevant minister, Stuart Robert should have faced court persevering with a scheme that senior public servants had told him was illegal. The proposed ‘independent’ assessment simply a means of outsourcing and privatisation and many essential services that have been privatised have collapsed, or are on the verge of collapsing because profit always takes precedence over the service. How can essential services be provided at a profit without reducing them to nonsense?? In the vernacular ‘the chickens are coming home to roost’ and it would be a national tragedy if the NDIS went to the profit sector. T ake the case of Christopher Pascoe who received a $15,000 robodebt claim from Centrelink. Christopher, who has an intellectual disability h ad no debt at all and after some publicity the debt was waived - you can imagine

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how many took their lives or suffered depression as a result of Minister Robert’s scheme. Christopher’s mother Yvonne called the scheme ‘disability bashing’ and you could not say fairer than that.

This bashing of the disabled and the coming review to cut funding to the NDIS contrasts markedly to the largesse shown to corporations. To quote Ben Butler in the Guardian, “at least 11 billionaires last year received dividends totalling tens of millions of dollars from companies that received jobkeeper subsidies designed to keep workers employed, new research shows.“

The research, commissioned by the opposition frontbencher Andrew Leigh, shows that retail moguls Solomon Lew and Gerry Harvey were among those receiving the payments.

Leigh said the payments came against a backdrop of the rich doing extremely well during the pandemic, with Forbes estimating that the average Australian billionaire’s wealth increased by 59% over the past year, while workers struggled with wage stagnation and a spike in unemployment caused by the pandemic.

“The extraordinary increase in the wealth of Australia’s billionaires comes at a time when most Australian workers are struggling to get any pay rise at all, and two million are unemployed or underemployed,” he said.

Sure, the country has taken a big hit with the Covid-19 pandemic, and money has to be raised to cover the huge expenses, but demonising the disabled and squeezing the poor is not the way to do it. A well directed ‘wealth tax’ would only affect 3% of the population, those whose wealth has increased by 59% over the past year while workers have suffered wage stagnation for the past decade. Another means of paying off the Covid-19 debt would be to tax multi-nationals a small percentage of their revenue rather than taxing their profit which can be easily manipulated so they pay very little tax.

A friend’s view..he lives near redacted in Northern NSW

XXO is incredibly courageous and positive despite the huge challenges she faces each day; she is truly amazing; the degree of uncertainty and vulnerability she faces is huge.

I spoke with you (two relatives); and yes there are many things which need to be considered. With any disease it’s incredibly overwhelming to consider where the disease will go and what the consequence will be; that is why my friend T who lost his wife to ALS said; that to embrace the full reality of where this could, or will, go is too overwhelming. To not deal with certain aspects is a survival mechanism; there’s a very good reason for not wanting to talk about certain future prospects.

Yes Advanced Care Medical Directive; Power of Attorney; Enduring power of attorney and a Will are things we all should have in place. But at this stage to talk with XXO about those practicalities is extremely sensitive and confronting given her situation. I will find an appropriate time to talk face to face about those things with her.

She is in a very vulnerable position.

And given that her condition deteriorates (hopefully slower than faster) or by some miracle stops; otherwise her support needs will become greater. I will be talking with XXO’s ‘Support Coordinator’ on Tuesday in regard to what options are available given increased support needs in relation to accommodation etc. in the future. XXO loves where she is now and it works for her at this time, but given increased support needs in the future what options are available, needs to be discussed with A who is XXO’s ‘Support Coordinator’. A is employed by XXO under the NDIS to give XXO advice regarding all aspects of her support needs. I have known A for some years; as we both worked for the same disability company.

This is obviously XXO’s life and she will decide what she wants. We all want her to be happy now; and for her to be happy with any changes to her support needs in the future, and to support her in whatever way we can now.

XXO’s support funding will be reviewed in September. With the new Government proposed changes to the NDIS support funding, (National Disability Insurance Scheme) I don’t know how that will affect her funding.

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will decide what level of funding she needs/gets; At this time XXO has support every day for a few hours; she is helped with day to day living; doing things she can’t do or finds very difficult to do. She should not have to feel any stress around money but she obviously does. NDIS gives support money for supporting XXO with day to day practical support. It does NOT pay for rent food or any other costs. XXO as with all of us, if we were in her position; would be following up every avenue possible to heal ourselves; and that’s what she is doing, Supplements; Acupuncture; shiatsu, massage; feldenkrais, naturopath etc. The emotional psychological impact of what’s happening is huge; as well as whatever trauma she has been carrying from the past. She sees a psychologist regularly: and all of these things cost. Only a limited amount of Psychology and Physio are covered by NDIS. It could be judged that it’s a waste of time and money; but I am very sure we would all be seeking out every possible avenue to heal as XXO is doing if we were in her position. All of these therapies / treatments/ supplements help her body which is in such a fragile situation. It’s obviously so important to support XXO in the choices she makes; and to make it possible for her to do those things. For her to be proactive doing these things for herself is psychologically so positive and important. XXO is a courageous, vulnerable, sensitive, beautiful soul and I know how much she appreciates your communication, love and support.

Excerpts from Every Australian Counts (italics)

[the changes will mean that people] Get less money in their NDIS plan • Will not get the support they need • Might feel upset and stressed – There is not a lot of time to get to know someone • It takes time to understand someone’s needs • It might be difficult for the person with disability to open up to someone they do not know We worry that people will not get the support they need after the assessment. Ariel’s comments: Or to complete the assessment. Unfortunately from my experience accompanying disadvantaged people dealing with government entities which are supposedly helping (housing, income support, DV support, Legal help etc) the client/customer/disadvantaged person is always put at even worse disadvantage if they confront these entities alone.

A female friend echoes this: I just read the statement from the disability orgs, and I can understand why people are concerned about the proposed changes. I recently participated in an assessment of my capacity carried out by Centrelink, and I certainly felt the outcome was not equitable for me. However, I’m a bit stumped in terms of weaving a response. Like most of what’s happening in the public sphere, I find myself simply left dumb struck. I don’t know enough to think through alternatives that could be proposed. I know that’s no help. What I can say is that any one subject to such an assessment should attend with a well informed advocate and should have as much documented medical/psychological evidence as possible, and should describe with as much specificity as possible the desired outcomes of the assessment, including details of organisations they want to deliver the services, the nature of the services, what those services will deliver, costs involved etc. I’m so sorry your daughter has developed that horrible disease. It’s just cruel. You cannot make changes to the report you get after the independent assessment. You can ask to skip the assessment But the NDIS have not said who will be allowed to skip the assessment. We do not think that is fair.

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The following text was extracted mechanically (and may be OCR output) and is often poorly structured — inconsistent line breaks, misdetected headings, tables that aren’t formatted as tables, and occasional OCR misreadings.

This is apparently a totally opaque process and will lead to increased suffering among the people with disabilities who should be gaining some peace of mind and support of all kinds but will instead experience harassment and bullying and won’t be able to appeal. What kind of natural justice is this?? When someone is already undergoing physical, mental emotional and financial torment surely the job of ‘services’ like the NDIS is to improve those people’s lives and provide some answers to their questions of how they’re going to survive. Independent assessments are meant to find out how your disability affects your life. Independent assessments will be used to say how much money people get in their NDIS plan. • Independent assessments are not meant to find out how much support or funding you need. We want to work with the NDIS and the government to make the NDIS better. We do not think independent assessments are the way to make the NDIS better. We want the government to:

  • Stop independent assessments
  • Do an evaluation
  • Let people with disability help
  • Try other ideas
  • Ask people with disability what they think
  • Make sure people with disability get what they need

We want the government to look at all the things that work well for people with disability. All changes to the NDIS should be made together with: People with disability · Parents and carers · Disability organisations Everything that works well should be used to make the NDIS better. So the governments motives – besides some puritanical punishment of afflicted people for wanting to have sexual services..or any kind of services – are blatantly about cost cutting So institute a wealth tax. Stop buying ridiculously useless military hardware. Tax the rich – the billionaires whose assets have tripled since COVID began. Don’t try to squeeze a few cents out of the already poor and downtrodden. It is a sinister and sick attack with the same demonic motives that inspired Robodebt. Did that save the government money?? Did it help anyone? NO! It actually caused huge suffering and pushed some to end their lives,. And after legal process the government had to try and remedy the whole mess at further cost to taxpayer.. The same thing will happen if these changes to NDIS go through. It is already a punishing process to get on the scheme and it doesn’t cover necessities like housing even now. Ariel Ariel Johnson

ATTACHMENTS: Annex A and B Letter to David Gillespie MP Letter to Minister Reynolds Productivity Commission Report descriptions of MND

ANNEXE A

Letter from Ariel to Dr David Gillespie our local MP for Lyne (Federal seat) April 2021

How to explain the horror of the person with a condition like MND which is almost always terminal within 5 years and which becomes so dreadfully debilitating – swallowing etc.

Emotional lability a big issue..also the resistance (from all of us) to accepting that this is really happening.

I have no words to describe how cruel your government is in persecuting the disadvantaged in ever more unreasonable ways.

Nevertheless I’m making the effort to tell one woman’s story – she has MND and is being helped by the NDIS which she managed to get onto last year on her third attempt.

As you know, arriving at a diagnosis of disease or condition like MND is not easy and administering and accessing a system like the NDIS is very complicated and needs to have built in assessment safeguards made by more than one person, transparency, and thorough consultative and appeals processes to be successful. Your proposed changes have none of these attributes and vest far too much power in one individual – the Minister.

Surely as a doctor – or even a mere human being - you must have some idea how scary it is for people to be diagnosed with this condition and to experience the gradual deterioration of their abilities and their lives.. the fear and anxiety they feel every day, the worry about having suitable (or in the current rental market, any) accommodation, their loss of autonomy and purpose…

Like many others with disabilities, this woman’s needs will become greater as she deteriorates. Her condition will culminate in complete bodily, respiratory and digestive paralysis while her mind will remain completely sharp and cognisant of what’s going on around her. This 52-year-old woman still has some dignity thanks to NDIS support. It’s only because of this help that she is able to get dressed, eat, get to appointments with health practitioners, get the supporting health and psychological assistance from professionals and feel that there is some hope each day. Her life is very hard even with this support so please do not take it away.

Ariving at a diagnosis since the first symptoms appeared took years. In 2018, she was prescribed a course Infusion IVg by a neurologist who diagnosed multi focal motor neuropathy. She also saw a second neurologist in Brisbane/ Gold Coast who diagnosed with a neurological disease generally affecting only young Asian men.

The redacted – the only hope is that it can be palliated..Except for being able to access the NDIS – which is incredible important and essential to her life, having a diagnosis didn’t make any difference because there is no effective treatment except she mightn’t have spent so much on other things and got on NDIS earlier.

Her disability is becoming more apparent each month. She has not been able to properly and independently cook for herself, dress herself, hold a book for the past year. Her eating is curbed by possibly choking as her swallowing has become affected. Her moods are very up and down which along with declining ability to speak and text makes communication very difficult. I worry about her mental health with this great looming death sentence hanging over her. She has always been fiercely independent and self-reliant so this all shocking to her and everyone around her.

For her to feel that her support in terms of the NDIS is threatened or even questioned is very, very demoralising and stressful.

What is the government hoping to achieve by these changes to the NDI Reaching out? Privatizing and adding an extra layer of decision making to an already fairly cumbersome process is hardly likely to save money but will cause untold misery to the people the scheme was designed to help.

Please use all your power to stop this horrendous upheaval in people’s lives and to bring on a real consultation process involving disability advocates and service providers and clients and their families and friends.

Letter to Minister Reynolds - 09/04/21


I realise that you might consider this a sort of 'form' letter but I'm sending it because it totally reflects my individual views. I am also putting in a submission to the Joint Inquiry into the NDIS – by the end of today - I hope! I’m writing to you to urge you to put an immediate stop to the proposed changes to the NDIS Act and the implementation of the controversial and widely rejected NDIS compulsory assessments.
I know that you’re new to the portfolio of the NDIS. So I wanted to personally get in touch to let you that people with disability, families and supporters are united in our opposition the proposed changes to the NDIS Act.
These changes will fundamentally alter the individualised and personalised nature of the NDIS. While we all want greater consistency, we are very concerned this increasingly automated process will not adequately consider individual need and circumstance.
These changes will make things worse not better. We are concerned that the new process for assessment and planning won’t consider the individual needs and circumstances of people with disability. They will turn people into numbers. The assessments will be carried out by outsourced private contractors – unknown to the NDIS participant – and using standardised tools that were not designed for the purpose of generating funding amounts for supports and services.
The assessment tools and process do not capture individual complexity or build a comprehensive and accurate picture of people's needs and circumstances. For example, Aaron, who is Autistic, participated in the pilot for these changes. He was assessed by a physiotherapist who had no training in autism and the supports autistic people might need.
This is not the NDIS we fought for.
as the new Minister for the NDis, you have the chance to make things right. Please, I’m urging you to:
  • Immediately stop the roll-out of these changes
  • Co-design alternative approaches with people with disability and the people who support them
  • Commit to keeping people with disability at the centre of the NDIS.

i look forward to hearing from you.
yours sincerely….

Excerpt from The Productivity Commission report:


in December 2009, as part of the development of the Strategy, the Government requested that the productivity commission investigate ‘the feasibility of new approaches, including a social insurance model, for funding and delivering long-term disability care and support for people with severe or profound disabilities however they are acquired’. [27] The productivity commission reported to government on 31 July 2011, finding that: --
the current disability support system is underfunded, unfair, fragmented, and inefficient. It gives people with a disability little choice, no certainty of access to appropriate supports and little scope to participate in the community. People with disabilities, their carers, service providers, workers in the industry and governments all want change.

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The Joint Standing Committee on the NDIS investigates a range of matters in relation to the NDIS, including the implementation, performance and governance of the NDIS, and the administration and expenditure of the NDIS.[60] In its inquiry into ‘General issues around the implementation and performance of the NDIS’, the committee heard evidence about participants’ difficulties accessing the NDIS and long waiting times between being approved as a participant and receiving a plan; and participants’ dissatisfaction with the planning process, including plans being made over the phone, participants not having the opportunity to review a draft of their plan, concerns about planners’ skills and competencies, inconsistencies in planning decisions, delays in planning and plan reviews, and the NDIA’s lack of transparency.[61]

From Productivity Commission report quoted by https://www.aph.gov.au/AboutParliament/ParliamentaryDepartments/ParliamentaryLibrary/pubs/rp/rp1819/Chronologies/NDIS

ANNEXE B

A explanation of MND/ALS is attached if you have time to read it. Plus these links.. https://www.abc.net.au/news/2019-09-14/funds-to-fight-motor-neuron-disease/11513730 https://www.ouh.nhs.uk/services/departments/neurosciences/neurology/mnd/support/mnd-als.aspx The term Motor Neuron Disease (MND) encompasses several different conditions whose common feature is the premature degeneration of motor nerves (known as neurons or sometimes neurones). There are two groups of motor neurons - upper motor neurons travelling from the brain down the spinal cord, and lower motor neurons branching outwards to supply muscles in the face, throat, arms, chest and legs. Both groups of neurons tend to be involved in MND but to varying extents, which is one of the many reasons why each patient’s disease is subtly unique. MND was first described in the mid-late 1800s, and the French Neurologist Jean-Martin Charcot is widely credited with the first detailed descriptions. He noticed that a common feature of most cases was muscle wasting, the medical term for which is amyotrophy (literally ‘lack of muscle growth’). This is a feature of degeneration of lower motor neurons. The resulting muscle wasting can be thought of as a wilting leaf when the water supply from a damaged branch fails - there is nothing intrinsically wrong with the muscle but it wastes when there is no electrical or ‘nutritional’ input from the lower motor neuron.

When Charcot went on to look at the spinal cords of patients with MND, he also noticed scarring of the descending upper motor neuron pathways from the brain. The medical term for this is lateral sclerosis (literally scarring of the outermost pathways of the cord). Damage to these pathways produces the stiffness that some patients notice (this is called spasticity), and results in exaggerated reflexes that the neurologist can detect on examination.

on their own, both amyotropy and lateral sclerosis are processes that can occur as part of several other neurological conditions. Charcot’s genius was to recognise that in MND both processes were occurring simultaneously. He called it Amyotrophic Lateral Sclerosis (ALS). There are virtually no other neurological conditions in which both these processes occur simultaneously.

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Nearly 90 percent of patients with MND have the mixed ALS form of the disease, so that the terms MND and ALS are commonly used to mean the same thing. Within this large ALS group there is still a huge variation in the way the disease presents and progresses, regardless of where it first begins. With further study it is apparent that the other 10 percent of patients tend to show either predominantly lower motor neuron damage with prominent muscle wasting, or solely upper motor neuron degeneration with relatively little muscle wasting but prominent stiffness. The former group are termed Progressive Muscular Atrophy (PMA) and the latter, very rare, group Primary Lateral Sclerosis (PLS), to reflect each end of a spectrum. Some of these cases, particularly those with P LS, seem to have a much slower rate of progression. There are other ways that neurologists sometimes categorize MND cases. One method is by the site where the disease symptoms being - for example if it is in the speech and swallowing motor nerves (which arise from the ‘bulb’ of the brain stem) then it is termed bulbar-onset MND. Another group of MND patients have a disease involved affects the shoulder regions, and is termed the ‘flail arm’ variant. These so-called ‘regional phenotypes’ follow some common trends in their patterns of progression, but no system of categorization to date can predict with certainty the course of the disease for an individual patient.