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[Participant’s Name] - NDIS Participant:
Accessibility + Providers within the NDIS
In terms of the NDIS the issues I’ve observed are, firstly, there is a massive issue around the NDIS and accessibility, in terms of access, planning and reviewing the decisions. There are current issues surrounding access to appropriate levels of care, with the NDIS constantly undermining and ignoring therapists’ reports, and not proving adequate information to justify these rejections.
I’ve also seen from a provider’s perspective, them price gauging for money, and I mean taken to the cleaners; because the participant lacked capacity to understand their plans or participants were not being given appropriate supports in their plans, which all comes back to planning. Therapists are recommending levels of care. Participants aren’t receiving that level of care, so then participants are getting taken to the cleaners by companies who just don’t care, who are ruthless and who have zero humanity and ethics behind them. That’s what it comes down to—ethics and humanity.
A lot of these companies are coming in for the dollars. Don’t get me wrong. I get that if you run a company or run a business, you’re in it to make money. On the flipside, there are the ethics and immorality behind the decisions that are being made and whether they’re in the participant’s best interest. I’ve also seen, on both sides of the coin of being a provider and a participant, providers not wanting to get into situations that are risky. Particularly with regard to medications. By that I mean, withdrawing services because it’s too risky, there’s too much danger or there’s too much going on. The provider is not wanting to be involved with complex participants requiring medications, this results in the participant back at risk and not receiving essential support and services.
There is also a situation where there is no provider of ‘last resort’, this means that there is no one else to step in to ensure participants aren’t falling through the cracks. In my situation I’m underserviced, underfunded, and underprovided. Yet guess who doesn’t step in? It’s not NSW Health, with New South Wales being the state I live in. No-one does. I’m neglected. As we sit here right now, I’m neglected, and we could potentially say that the NDIS has enforced restrictive practice on me by not giving me the equipment that I need to access the community. That equipment is an electric tilt in space wheelchair that I’ve had documentation for since 2018. I’m still fighting about getting an Occupational Therapist assessment, when there is evidence of documentation in the NDIS’s hands that says I need an electric wheelchair. 2018 was the first time that that was mentioned. Now we’re in 2023. I can’t even
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get the Occupation Therapist assessment. I’m not even saying the equipment; I’m trying to get the assessment to provide scope into the complex and declining nature of my functional capacity. I’m quite passionate and frustrated about the lack of access to equipment to engage in the community. In terms of access, the NDIS is getting in its own way. That’s basically what I see. It’s the red tape. I’ve got plan managers who demand reports for low-risk, low-cost Assistive Technology, when I have the judgement, as a nurse, to be able to spend that.
Funding for community nursing care by the NDIS
In a hospital setting, as a nurse, I’m given the judgement about whether somebody needs incontinence pants, a mattress protector, a wheelchair, walker, or shower chair. I’m given that judgement, to make that decision and then call in the cavalry to make sure I haven’t done anything wrong. Broadly speaking, nurses are qualified to make judgements about how to keep a person safe and perform risk assessments in the interim whilst we’re waiting for therapists’ reports and guidance. The NDIS provides legal framework in detail regarding the person-centred approach that is meant to occur to support and enrich the lives of people with disability. There is a fundamental lack of regard to access, dignity and understanding with the supposition of the NDIS and its practical implementation.
It is clear that the NDIS doesn’t want to fund nursing care due to its cost, and legislation is falling behind for those citizens under the scheme. Categorically, I’ve tried to get nursing funding myself, and for other people, and they don’t want to fund nursing care. They don’t want to fund nurses to come in and do brief assessments, to then make further recommendations on what is most appropriate for that person; whether it’s a medication, risk or sensory assessment, Physiotherapy, Occupational Therapy, or Psychology. Nurses are great at is making broad recommendations on various aspects of somebody’s care and figuring out and identifying what the needs are. I’m yet to have any nursing funding, despite being on the NDIS for over three years as a complex participant. This demonstrates that there is an inequity and imbalance of powers with value for money, reasonable and necessary support, and ultimately dollar signs; when the professionals and people with a disability are stating what is required.
RISK OF MEDICATION MISMANAGEMENT WITHIN THE NDIS
Medication has come up as a very large issue in my personal circumstances. I’ve even heard of it not just in my circumstances, but in others as well. In the space as a nurse I am not qualified, regardless of whether I’m a registered or enrolled nurse, to teach a support worker without further education on how to administer medication and whether they’re safe and competent to administer medication to somebody. It is a nurse’s responsibility to make sure that with each individual participant somebody is working with, that they are competent at doing that job, regardless of
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whether it’s medication, showering or brushing somebody’s hair. Let’s just pick some menial tasks like making a bed, brushing somebody’s hair, vacuuming, cleaning, making somebody a meal, regardless of whether they have swallowing issues or not. The nurses are the ones who get to make those decisions on who is the most competent person to deliver that skill set as an interim option, until we get an OT, a dietitian et cetera onboard, and yet the funding is not provided by the NDIS.
I am personally on the complex needs support pathway. I have a CSN planner. I have a level 3 support coordinator and a level 2 support coordinator. Where’s my nurse? You might be so shocked to find this out, but also not surprised at the same time. With medication, again, I’ve been getting told that a support worker is more than competent and capable of administering medication; making sure that I’m getting the right dose on the right date at the right time, and that it’s being given to the right person. The ability for a support worker to fulfill these duties is generally out of their scope.
Apparently, according to the NDIS, a support worker, without qualifications, is allowed to do it. If you speak to any nurse—I’m one of them— ‘I will not supervise support workers providing medications, and I will not be responsible for that.’ I’ve had Registered Nurses who also have said the same thing to me, that nurses are absorbing the liability for a qualified or unqualified support worker. Our requirement to AHPRA, our overarching body, says that we are not allowed to do that. If a nurse packs a Webster-pak or a pill packet, a nurse is then responsible for making sure that medication is then administered to the participant. If a pharmacist packs a Webster-pak or similar types of devices, they are then responsible for making sure that that person gets that medication. The support worker is responsible for assisting that person to access their medication and to remind that person to take their medication. A support worker should only be assisting a client, or person with disability, to access their medication if they have training in medication assistance. If something is not able to be packaged, a support worker should not be responsible for administering this, and yet it is known that they are. This significantly increases the risk of medication mismanagement. Who is going to die because the wrong medications have been given, by a person who is not trained or qualified?
As soon as that medication is no longer able to be packed in a Webster-pak or similar type of device, it is no longer able to be administered by a support worker—any creams, any eye drops, any ear drops or any medication that needs to be sublingual1, in comparison to oral medication. As soon as somebody has issues with swallowing, is it appropriate that a support worker, who may or may not know how to administer medication to someone with
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swallowing difficulties, is involved with administering that medication? As a new graduate nurse, I had no idea. I
had absolutely no idea. If, as a new graduate nurse, I had very little to no idea, why are we trusting someone without a qualification and or an overarching governing body to do it? To me it makes no sense, and again, the level of risk associated with this measure come with potentially life-threatening consequences.
NEED FOR NDIS FRAMEWORK SIMILAR TO HEALTH & AGED CARE
Put it this way: if you go to hospital, the first person you meet is an admin person, followed by a triage nurse. If you go to hospital, the first questions are: ‘can you give me your Medicare and your pension card, please?’ ‘Here you go.’ ’Okay. Just sit down and we’ll get the nurse for you.’ This begs the question with the NDIS infrastructure: where are the nurses? Why are they not being funded in people’s plans? Why are they not being funded to regularly interact and review what is going on? Why are they not being funded to create care plans for participants? Nurses have the scope to take the pressure off allied health staff who are already overworked and underfunded to meet the needs of people living with disability. Nursing should be playing an essential role within delivery of service; just like the health-care space, and just like the aged care space; for example like an disability specific ACAT assessment.
EDUCATION AND TRAINING WITHIN THE NDIS
These are skills that nurses learn from their craft, which is caring. When I first saw things, I didn’t know how to do all of them, and that’s fine, but then why are we trusting someone whose entire job is ‘do this in this order with these steps’—and, if you don’t do that, give up? Call an ambulance? That’s what a support worker does. A support worker is someone you give a set of instructions to and say,‘Follow these instructions to the letter, and when it deviates from these instructions, call somebody.’ This is a fundamental waste of resources when a nurse can navigate this, if provided in an NDIS plan.
I tell you what: as a nurse who has had support workers caring for me, oh my god do they not. A number of times I have personally been put at risk because people don’t understand how to cook for somebody with swallowing difficulties; how to maintain appropriate hand hygiene; how to maintain appropriate infection control, especially in relation to COVID; how to wear a mask; how to clean their hands properly. Where the nurse in the client’s home who is responsible for delivering the education to the support workers to make sure that this client is receiving the care that they need and that is individualised to them? The NDIS are constantly refusing to fund this training and education for person-centred support.
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The NDIS says they are not responsible for ensuring their support workers are educated. That is kind of correct.
They’re responsible for making sure that a support worker can be put in that person’s home and can care for them, but what happens when someone has an increase in their care needs, or develops complex mental health issues, complex physical issues, or complex sensory issues? Who’s then going to educate that support worker on how to deliver that care to that client? I tell you what: at the moment, it’s me, an unpaid nurse who’s currently supposed to be receiving the support, who must educate my workers. So, if I wasn’t a nurse and I was just a person with a disability, it would still be me. But why am I doing it? It’s not my job. I’m not being paid to do it. If the NDIS wants to pay me, I’ll happily educate all my workers. But that would become my full-time job. At the moment however, they’re not paying me, so I need money in line with the NDIS legislation surrounding economic opportunity.
LACK OF FUNDING FOR ASSESSMENTS WITHIN THE NDIS
I’ve got prospective participants that I’m having to support who are being neglected with access to advocacy. The advocacy services are overrun or unspecialised, so they can’t meet participants’ needs. In terms of planning, again, I only have the funding that I currently have because I’m a nurse and because I know what information is required, either professionally or from experience with the NDIS. I only have the information that is required because I know to go and do an FOI on my records, because the NDIA has never been forthcoming to me as a participant in saying: ‘We believe that you need X assessment. You lack information about why you need supports to do your dishwashing, for example.’ Let’s pick a menial task about why you need supports to wash your dishes or to do your laundry. ‘We believe that you need X assessment to detail justification for funding.’ Okay, then let’s have a conversation about who needs to be involved in that assessment, because, in my life, that’s probably going to be a psychologist, a physiotherapist and an occupational therapist, and potentially allied and medical health professionals with the subspecialties individualised requirements as well. So, we’re actually looking at needing two or three of those different types of therapists involved in that assessment, not just one.
I do not believe that is overservicing. I believe that’s called using professionals and their specialties to your advantage to get the information that the NDIS is requiring and to communicate what the participants’ needs are. This means having multiple specialists of subspecialties in a profession. It’s much the same as going to see a cardiologist. Why are you going to see a cardiologist? Is it because you had a stroke? Okay. Is there a particular cardiologist that specialises in strokes? Yes, there are. So, then you go and find a subspecialty from cardiologists.
SELF-MANAGED NDIS PLANS
I’ve gone back through the FOI documents. There is a section talking about self-planning: “does the participant want to self-plan?” I’d love to write my own plan, because I probably can, and at this point I probably could do a better job than most plan managers. The problem is however that I’m not funded for it. My support workers are not funded to assist me to do it. I know how to instruct them to do it, and I’m not funded for it. So why can’t I self-plan?
If I know what supports I need, why can’t I write my own plan, give you a budget and say: ‘This is what I need. This is why. Here’s all the documented evidence. I’ll take my $20,000 or $1 million—whatever the dollar value is, I’ll take it. Thank you very much. See you later,’ or: ‘This is what I’m saying my needs are. This is what the discrepancy is’—two to one, three to one or whatever the staffing ratio is, or whether I need cleaning or don’t need cleaning.
‘These are the discrepancies. Let’s have a chat about how we can resolve those discrepancies and documentation.’ Because that’s where you guys end up in the planning revision process—as a discrepancy. Do the NDIA come back and say: ‘Hey, there’s a discrepancy. You say you need cleaning support for two hours a day’—whatever it is—‘We haven’t got evidence to support that. Do you have something to support that?’ They don’t. They make a planning decision. They make a decision rather than being transparent by having a conversation and making sure they’ve got access to all the information. The onus is put on the participant to supply all the information without knowing how to turn the decision.
THE NDIS AND THE AAT – IMBALANCE OF POWERS FOR PARTICIPANTS
I’m not even talking about the ‘Would we fund it’ guide. So, it’s a waste of time, money, energy, and effort. There’s a legal decision that says that you will fund gym membership in appropriate circumstances, but no-one’s asking the right questions. No-one at the AAT goes: ‘Okay. Well, you’re saying you need cleaning services. Why do you need cleaning services?’ ‘I’ve got a diagnosis of asthma, so I can’t clean.’ ‘Okay. Cool. Alright. Well, we haven’t got any information to say that you have an asthma diagnosis.’ ‘Okay. What information do you need? What questions do you want answered? Can you get really specific on what questions you want answered, not just a letter that says: “You have asthma”? What are the specific questions? Is it: “You were diagnosed with asthma. In what year were you diagnosed? What doctor diagnosed you? Where were you diagnosed? What tests were you diagnosed with? What medication are you taking to control that?’ I think you’re getting my point. ‘How often do you need cleaning? Do you need it once a day? Do you need it once a week? How often do you need, or do you want all of these things cleaned?’ I think you’re both, by the sounds of it, hearing what I’m saying. One of the biggest issues I’ve had, and
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to both at the NDIA at a general level, and at the Administrative Appeals Tribunal level is: what questions do you want answered? Don’t give me general, run-of-the-mill questions. I’m not interested in your general questions. Get specific to my situation that you’re funding, otherwise it is a fishing expedition1.
LACK OF EFFICACY BY NDIS TO GATHER INFORMATION
A lot of the time those questions are pretty much exactly the same, but with each condition there are a couple of questions that are slightly different, or with each situation there are a couple of questions that are slightly different. But those questions are all pretty much the same. If the agency wants the information, I’m more than happy to provide that information. But I’m only happy to provide that information if the agency is putting out information to therapists and allied health and doctors of how to answer the questions, because at the moment they don’t want to or they’re not giving enough detail. In my experience they only take notice when a document is nearly a hundred pages long. I had a GP report about one of my specific diagnoses. By the time I added in emails and letters backwards and forwards, and finalise the report with the substantial amount of information required, that letter or that pile of documents was just under a hundred pages for one diagnosis. I have about 15 diagnoses that require that level of work to be done. That is unreasonable.
If you want that level of information, fine, pay a nurse to write the report for a doctor to read it. The NDIS is currently not willing to allocate funding for nurses to write documents, write healthcare plans and all those types of things that nurses are competently capable of doing. How to write a care plan is definitely something that I’ve been taught, both at a TAFE level and a university level, and not just how to write one, but how to find relevant information that would justify the reasons why—for example, talking about asthma—someone would need cleaning every day or every two days. If someone is allergic to dust, it’s obvious that they’re going to need regular cleaning to not have an allergic reaction. Let’s try cleaning once a week. Or they haven’t had cleaning done for many months. We’re going to have to do a really deep clean and then pull back to once every two days, and then maybe once every three days, and then reevaluate in 12 months how that’s going and whether they need more or less cleaning.
It’s the same with diabetes. I’m just picking common conditions. I’m not picking complex/rare conditions. For someone with diabetes we categorically know that they’re going to generally need insulin at least once a day, depending on what medication they’re on, unless they’re on tablets. Even if they’re on tablets, you’re still taking blood sugar levels. We know that they’re going to have to take a blood sugar levels at least once a day, depending
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on what their care plan is. In some instances, they could be taking blood sugar level reading/measurement up to six times a day, as well as administering insulin three or four times a day. We know that’s a thing that’s needed for someone with diabetes. We know that someone with asthma who has an allergic reaction to something is going to need to avoid that, whatever it is. But we’re not funding nurses, currently, to write those care plans to hand back to the NDIA, and support workers to know how to correctly support these people.
The NDIA have the information saying that someone has this diagnosis, then they’re saying there’s a lack of information, so they won’t fund it. Okay, if they won’t fund it then how about let’s fund the production of documentation and some supports based on the production of that documentation? If you’re saying you need six hours of care a day for that condition, fine, no worries, we’ll fund it, but you have to produce this report within three, six or 12 months—whatever the NDIA decides is an appropriate time frame, all according to the person’s needs, complications and how long it might take to produce a report like that.
NDIS PRICE GUIDES
In the healthcare system the balance of care and responsibility against dollar value does not supersede duty of care to patients; this is not questioned. I come up against other arguments. Why are we not funding supports in principle if we know that someone needs two-to-one care? Awesome—let’s fund it in principle. If you need six hours of care a day, let’s fund that in principle. Let’s not have an argument about it. If we know they need a total of 12 hours of care a day, that’s six hours at two-to-one, awesome. Let’s fund it in principle. Let’s not focus on the cost. It’s not about the numbers; it’s about how many hours of care that participant’s needs to actually fulfill the services and supports.
At the end of the day, the NDIA has put out a price guide; they have a responsibility to fund to that advertised maximise, of 12 hours of care, per day. They have a responsibility to do that, not to reduce the cost and hope that the participant finds somewhere cheaper to get support. There’s a price guide. There’s a number. There’s a ceiling. They need to fund to the ceiling, not below. If the participant finds somewhere to get cheaper support, and they manage to get more support, that’s awesome, great work on their part, but they need to fund what the NDIA says is the maximum rate.
ACCESSBILITY FOR PARTICIPANTS DISPUTING NDIS PLANS
The AAT process is highly inaccessible to people with a disability. I know there’s an AAT review going on currently. I have a learning disability of written expression; I cannot communicate well in writing, as your colleague
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have probably found that, hence I’m chatting via verbal discussion. I have put in no fewer than four model litigant obligation complaints about accessibility and the process being inaccessible to me. The NDIA are currently allowed to investigate themselves when someone makes a model litigant obligation complaint. Guess what? I don’t know anywhere that would be allowed to investigate themselves on a matter of legal fact.
Why are the NDIA allowed to do it? They shouldn’t be. The AAT don’t get involved because they say that they’re supposed to be an independent party, but they don’t enforce it. They don’t force the NDIA to be a model litigant. The NDIA says that they’re supposed to make a preferable decision, but that preferable decision is always biased towards what they want, not towards finding out the actual matters of fact. I’ve never come across a time when they’re not going to be unbiased.
I’ve had my medical records from zero to 30 subpoenaed. Why? Please explain to me why, when I got onto the NDIS in 2019, that the NDIA needed to subpoena my records from birth? Please explain how that’s relevant. In my opinion, it’s not. Yet, the NDIA is also not funding my doctors to write medico-legal reports because that’s the level of information the NDIA is demanding from doctors and allied health therapists and nurses. They want medico- legal reports, doctors, allied health therapists and nurses are happy to write them as long as the NDIA are happy to fund their recommendations, and the time associated with writing these reports.
There are providers, medical and allied health professionals who are leaving the NDIS space because they feel disheartened because they’re not able to get what they need for their participants, ruining years of built-up trust in therapy and knowledge and information about that person, because that person now thinks that they’re a horrible therapist because they can’t get them what they need. They’re not a horrible therapist but the NDIA won’t enter into conversations with these therapists and won’t acknowledge what their recommendations are. They are ignoring health professionals, and making this participant feel like a costly burden on society; going against NDIS legislation by doing so and creating a false sense of humanity for the disability sector overall.
If a legal process is not accessible to a person with disability, how are they supposed to have a fair fight? I am currently unrepresented. I do not have an advocate or a lawyer, though I have tried. I am up against lawyers and barristers. It’s not fair at all. At most I should be up against another equal peer of similar age, educational background, and work experience in the AAT—someone of equal standing and equal knowledge of the law, the legislation, and requirements. Instead I’m fighting against a lawyer, a case manager and all of these other people, and it’s just me—someone with disability who can’t communicate very well in writing, who can’t communicate to get their story together or in an excel spreadsheet, on a table or in any other way that would make it so that they
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could reasonably communicate what they want, what they need and why they’re actually at the AAT in the first place. So, where’s my help? The coordinator is not allowed to help me. She won’t get paid if she does. I don’t have any formal supports. I don’t have an advocate and I don’t have a lawyer.
Oh, that’s right—and because the NDIS won’t fund that wheelchair, we discussed that has needed to be funded since 2019, i also can’t work that much. So how am I supposed to afford a lawyer to help me have a fair fight? It’s not fair or just. The NDIS is the most well-funded litigant in the AAT. In fact, not NDIS; it’s Centrelink. Of any other government organisation, it’s the most well-funded litigant in the AAT space. It can afford private barristers and lawyers if they really want. So, where’s my private lawyer and my private barrister? Where’s my legal aid lawyer? I haven’t got one. So that’s not a fair fight.
When I went through my FOI records, I found so many things that could have been told to me that I could have supplied information about or quickly solved had I’d known that the planner needed further information. Instead, you’re left with them not contacting you, not telling you why you’ve been denied access, not telling you why you’ve been denied a particular support, not telling you that in your next plan review or, ‘Can you give me information on X within the next 30 days?’ We’ll add that into your plan, without pushback; The medical professionals have done their job.’ There’s no conversation about it. It’s just: ‘We haven’t got the evidence so we’re going to deny.’
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equate to an hour of therapy a week; that’s an hour of therapy maybe every two weeks. But let’s be honest: if you need to write a report then you’ve got to find that time from somewhere.
So, do I cut down to 45 minutes of therapy a week, which is probably then actually only 30 minutes of therapy a week because they’ve got to write their case notes too? This is a realistic statement. By the time they plan, prepare to attend, attend, write the case notes, go home, you’ve got 30 minutes of travel each way and you’ve got at least 15 minutes of case notes, depending on the client. You could potentially have up to an hour. Being really honest, depending on the client and the case, there’s anywhere between 15 minutes and at least an hour of writing notes. You’ve probably got 15 minutes to half an hour to prepare for a therapy session, and then you’ve got probably 15 minutes to half an hour to put in for writing the report. So, where’s that hour go? That’s just not maths to me. You’re giving me one hour of therapy a week. Awesome! I love my hour of therapy a week; it’s actually not an hour. It’s actually more than an hour a week.
The planners think, ‘an hour of therapy a week’, but they fail to recognise the substantial amount of output when not engaging directly with the client, and the billable hours associated. It’s not just the therapy. It’s the travel. It’s the fact that—does this person need a support worker whilst they’re in their therapy session? If they need a support worker, do they actually need a nurse in that therapy session? Or do we need a therapy assistant to assist the therapist in that session? Who needs to be at that therapy appointment? Is it going to be an informal support, like a family member or a friend, that will be there? How are they getting there? How many kilometres is that therapist’s office from the client? Is it two? Is it 10? If it’s 10 kms, then we’ll have to fund that twice; that’s 20 kilometres there and back.
I think the two of you are starting to figure out that there’s legitimately no logic going into any of these planning decisions. It’s, ‘Okay, you need an hour of therapy a week. Here’s the hour.’ But how are they getting there? How are they getting home? Are they going by public transport? Are they going in a taxi? Are they getting in a private car? Are they going via patient transport in an ambulance? How are they getting to their doctors’ appointments? Who’s making the appointments? As a nurse, these were all questions I had to ask: ‘How are you getting to your appointment? How are you going to come to the hospital today? Do you need us to help you? Do you need a social worker to help you organise getting your transport organised or are you just going to get public transport? Oh, you’re getting public transport home from the hospital—sorry, I can’t let you do that because you’re high risk so I’m going to have to go and call the social worker to see if we can find an alternate transport means, the nurses’ can get you a taxi voucher since you can’t afford a taxi today.
SUPPORT PLANNING FALLING SHORT WITHIN THE NDIS
As a nurse, when I worked in the hospital, those are genuine questions I had to ask. ‘Who’s picking you up?’
“How can we ensure your safety is upheld when transferring you home”. Where are the nurses in all this planning and decision-making? I understand that these people have a right to make their own decisions and choices and that people with a disability have a right to make choices about how they want to do things, but someone needs to be standing there, guiding them, helping them, holding their hand and making/guiding decisions about what’s most appropriate and how these things can happen. Yet again the nurses aren’t funded. I tell you, to write a care plan for someone with the simplest of needs in hospital takes a good 30 minutes to an hour. To write a care plan for somebody that’s in the community could take many hours. The reason why I say that is that you’re not just covering showering, eating, drinking, and getting dressed and medication. You’re covering transport. You’re covering various social situations. You’re covering various medical situations. You’re covering various levels of functionality and medical needs. You don’t have a chef on call downstairs in the basement to ask, “Can you make me this thing?” They’re not there. You must start planning these things and try and find the right people and resources – i.e., equipment, foods, and services.
RIGID OUTDATED APPROACH TO DIAGNOSES FUNDED BY THE NDIS
In terms of ME/CFS, which is what I am passionately advocating for, the NDIA is using outdated views on how to treat it, so much so that the long COVID inquiry suggested funding to update its treatment guidelines in Australia. The NDIA, I have found, has sought biased views and opinions from only one particular medical professional about treatment of ME/CFS in Australia. This medical professional has not consulted widely in relation to treatment of that and management of the condition. They currently recommending greater exercise therapy and cognitive behavioural therapy for ME/CFS. To date, said medical professional has ignored evidence suggesting that ME/CFS is not a permanent condition, although the evidence suggests that ME/CFS is permanent after five years2.
Additionally, if functional decline occurs within ME/CFS this can be considered as permanent in nature3. The NDIA will say that they don’t make any treatment recommendations. That is true, but they rely on evidence,
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literature, and treatment guidelines. When treatment guidelines were written for Australia it was, I think, 20024.
We’re in the year 2023. Treatment guidelines and medical guidelines in general are only valid for about five years, broadly speaking. Why are we still recommending and looking at treatment guidelines from 2002? They have said that they’ve adapted a hybrid methodology of using the Australian based ones and UK based ones from the UK NICE committee, the National Institute for Health, and Care Excellence; however, today as it stands, that should, in my opinion, overrule a guideline that is now more than 20 years old. Whilst we don’t have a guideline for Australia that is up to date, that is the best thing that we have got. However, they are still referring to treatment guidelines in
I have made FOI requests of the NDIA on this issue, by the way. This is not just, ‘I’m calling the shots.’ I have made FOI requests on this issue.56789 Participants are being forced to see a doctor who’s known to be biased for pushing a particular treatment view that is not in line with up-to-date evidence-based research, and who was involved and embroiled with some negative patient outcomes that occurred in the UK. Those doctors, especially now that they are overseas, are no longer practising medicine. To the best of my knowledge, they’re actually no longer allowed to practise medicine in the UK. We have a doctor in Australia and his friends or colleagues— whatever word you would like to use – who are still using the same treatment guidelines and still practising
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medicine: psychologists, doctors, exercise physiologists et cetera, who are still implementing this outdated patient management.
DISABILITY OVER FUNCTIONAL CAPACITY AND EARLY INTERVENTION
These treatments that they are forcing people to engage with in order to approve people onto the NDIS are harmful; they cause a decrease in the function10. This means it costs the NDIS more money in the long term to support these individual participants. Whoever that participant is, whether it’s me or somebody else, it costs the government more money because they lose functional capacity because they go from maybe being able to work one or two days a week to not being able to work at all. In my case, I went under the same treatment yet again after doing it a couple of times and rejecting the treatment quickly, because I needed to prove to the NDIA that I had tried the treatment. Guess what? I now can’t work. I can now only work very minimally, and even if I can, it is a few hours a week, which significantly limits my economic opportunities to find suitable employment to meet my needs. I’ve given you an indicator of how much money I think I’m going to cost the government. Guess what? I would cost a lot less if I was working as a nurse. I would have cost a lot less if I was functionally able to work as a nurse, either in the community or in the hospitals or another setting.
If I’d been given support when I needed it early enough, I probably would have only needed a bit of help in terms of cleaning and meal preparation, and a bit of administration support. I now need absolutely every single support I can get that is listed under the NDIS. I need assistance with cooking, cleaning, laundry, home maintenance, housing, medication. I can lose functionality to the point that I can behave as a non-communicative quadriplegic, similar to someone who has a traumatic brain injury and/or a very high-level spinal cord injury, at the drop of a hat, and for a period of unknown length of recovery. Trying to explain to a therapist how someone who can be upright, functional, and standing and then behave as a non-communicative quadriplegic in the way that they behave is very hard, because when you can’t see it, you fail to understand what it’s actually like to live that kind of unpredictable and fluctuating daily experience. ME/CFS is a condition that people will need to be tube fed with at times. I appreciate your facial expressions; I can see the clogs turning as you are reading this! I think it’s really getting through to you how bad this is.
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Instead, they are forcing people to do treatments that we know, by literature11, are harmful. The NDIA are wanting evidence against it, which is fine, but we also have a cohort of doctors who don’t understand the condition and so therefore they recommend the harmful treatment and then patients have got nowhere to go, because the NDIA is demanding evidence of it and the doctors are recommending it, despite the fact that there is evidence against the treatment, because patients and doctors don’t know any better with current literature, and evidence-based practise.
The community is not aware, broadly speaking. The only reason I’m aware is that I have a health background. I know how to do research. When my doctor wrote a report on this particular condition, I had to give him significant support and keep feeding him literature to write the report because otherwise I wouldn’t have had a report that was nearly a hundred pages in length, which rebutted every single position the NDIA might have potentially had in terms of all available treatment options. They don’t just look at the diagnosis itself; they look at every single sub-diagnosis.
Can we treat that? We probably can, but if you don’t treat or manage the overlying, overarching diagnosis, you’ll never treat the underlying issue. The NDIA are clearly looking at a diagnosis, rather than functional capacity.
NDIS AS A SOCIAL FRAMEWORK
If you don’t give somebody support with housing, they’ll never get a job. If you don’t give somebody support for their health and accessing healthcare, they’ll never get healthy. The cornerstone of all social issues are health and housing, yet the NDIA constantly pushes back and says that housing is a state responsibility and health is a state responsibility. That’s fine but it’s only their responsibility when they’re in hospital, and under limited circumstances when they are in the community. It’s only their responsibility until participants have a certain level of accessibility need. There’s no clear level of what that actually is. It’s not clearly defined whose responsibility is what, and it’s really hard to get the hospitals to agree.
NDIS FAILURE TO RESPECT THERAPISTS RECOMMENDATIONS
I’ve had an OT who didn’t believe that I needed a ratio of about five to one in terms of support workers—and one of those support workers was a nurse—until they saw it. What would good look like for me?
Probably almost a five to one ratio of supports with varying skill mixes—cleaners, cooks et cetera—probably 24 hours a day seven days a week is probably what I need. You can probably gather from the fact that I have a report recommending 25 hours of occupational therapy a week what that looks like in terms of speech, physio, psychology and all that kind of stuff as well.
At the end of the day, it’s listening to what the therapists are recommending. They are recommending it for a reason. Fund it. Don’t question it. Question it reasonably: ‘Where’s your evidence? What tests have you done to say that this is what the participant needs?’ But once they say it is needed, fund it. Don’t question it any further. You will save yourselves thousands of dollars in arguments and thousands of dollars in participants fighting, being upset, and calling through the minister’s office et cetera and saying: ‘Please help me. I can’t believe that I’m getting rejected for this piece of equipment.’
I’m qualified to say what supports I need. If you want me to put metrics against myself, I can understand maybe not me administering them to myself, but I’m qualified enough to say I need three people 24 hours a day seven days a week or whatever it is and then to get some more assessments to show that that’s what is needed. I understand that some people might not be, but at the end of the day participants do know what they need, and they know what’s going to help them and what’s going to help them the best. I appreciate the NDIA always wants the cheapest option, but sometimes the cheapest option is penny wise and pound poor. It’s like if you go to the dollar store. Do you pick a toilet brush that’s made of plastic that you know is going to die in 12 months or do you go to IKEA, which might have a slightly better quality and it cost $2 instead of $1 but it will last you five years?
NDIS: A PUNITIVE APPROACH TO QUALITY CARE
It’s red tape. One of my planners was happy to bend and flex a little bit and another one wasn’t. It’s inconsistencies in planning. It’s levels of knowledge of participants versus planners. As I said to you, it’s a culture of, “Give us the information and then we’ll fund it,” not, “We’ll fund it so you can get the information.” I understand that sometimes you need to demonstrate that something works, but how are you supposed to demonstrate that something works if you aren’t funded to demonstrate that something works?
They’re being punitive through a lack of information. They are punitive through not educating or telling participants that that’s what they need and/or punitive through not enabling participants to show that that’s what’s needed. Currently the agency is trying to put in a cut to the NDIS or a growth ceiling of eight per cent. That will be punitive for participants. It will stop people being able to access the NDIS and/or it will restrict the amount of funding participants can have in a plan, so that’s punitive in itself; it’s a punitive political decision.
But what we do know is that a cost model that was done many, many years ago is that for every dollar that’s spent you get two dollars and something cents back. You get a 200-and-something per cent return on your investment, so why are we being punitive to participants who benefit the government in the long-term in terms of an economic model? It might cost a lot but you’re getting more back. For every dollar you put in, you are getting that and then some back, so is it costing anything? No, it is building the economy, in my opinion.
It’s punitive. People are just not understanding how the system works. Take it back and, as I said, use your marking rubric as an assessment. “You want two hours of support work? Okay, well we need an assessment, a function of capacity assessment that has these specific assessments in it.”
In my instance it’s punitive because they won’t fund multidisciplinary team meetings. It’s punitive because my therapists can’t all get together and say: “We need to write a function of capacity assessment. Who’s going to head it up?” It might be the psychologist, OT or whoever, and they all come in and say: “Today, we’re going to chat about toileting. How do you get to the toilet? How do you eliminate yourself when you go to the toilet? Do you sit on the toilet? Do you go in a pad? How do you toilet? Let’s just talk about toileting today.” Yes, it’s annoying that you have
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to kind of break your life down in that way, but currently there’s no ability to have those conversations because
they’re not funding participants to be innovative.
In my circumstances, as I said to you, I’m being punished because I’m not getting support to educate my support workers, despite me having the capacity to educate them. But then I lose out on my ability to work because I have to educate them. I will stand or sit right here right now today and say: ‘I’ll do it. Pay me because that’s now my full- time job.’ It’s now my full-time job to look at service agreements and make sure they’re not taking advantage of me. It’s now my full-time job to make sure budgets meet my needs. It’s now my full-time job to do all of that maths. I’m effectively running a business and I’m not a business owner in that sense and running that business and making a profit out of that doing that. I understand I’m not supposed to make a profit out of my own funding. But that’s not fair if that’s the level of work I’m having to do. It’s punitive in the amount hours and time you’re expected to put in.
I’ve also heard from family and friend carers. I heard a story the other day where the NDIA expected this family care member to deliver 21 hours of care within 24 hours. They’re only allowed three hours break in 24 hours. They’re not allowed to get three hours break simultaneously and consecutively. I’m pretty sure that the average workday is eight hours, and the legal workday for someone under the relevant award is 10 hours, including breaks. The other thing I found that’s punitive is that in those care hours they’re not allocating breaks, so when someone needs 10 hours of care a day, it’s 11, because that person is entitled to a morning tea break, an afternoon tea break, and a lunch break. So, you need to budget for those too. That’s not a choice; that’s law.
FAILIURE BY NDIA TO ADHERE TO THEIR OWN LAWS
The NDIA legislation literally says that you’re not allowed to break a law. Well, guess what? Every time a care worker walks through my door, they’re breaking laws. Why? It’s because my home is not appropriate for them to deliver care and support to me. But I can’t get a housing and/or STA assessment because I was brought onto the NDIS for psychosocial disability, but they refused—against other legal decisions that have been made against them, by the way—to acknowledge all the other diagnoses I’ve had and the support needs that come from those. That is the reason I’m at the AAT in the first place. If they listened to me back in 2018 when I had a letter from a doctor that said, ‘[Participant] requires a wheelchair,’ and then, ‘[Participant] requires an electric wheelchair,’ we wouldn’t be in this space. They have the evidence to suggest that I need an occupational therapy assessment, but the punitive side of it is that they want to go through the diagnostic history and everything else before funding it. That’s punitive. That’s actually causing ongoing trauma to somebody.
PARTICIPANTS WEARING THE BURDEN OF COSTS BY NDIS
The biggest problem at the moment is that, if I put any money into this, I’m not guaranteed to get paid out from the NDIS. That’s also punitive. I’m trying to prove that I have a disability, but if I put any money into proving that I have a disability, I don’t get that money back plus interest; I don’t get the money back at all. I don’t get compensation for legal fees, and I don’t get compensation for expenses incurred. I don’t get any compensation. How’s that fair? I currently spend thousands of dollars a month on Uber Eats because I don’t have another care worker to get appropriate meals made to meet my needs, as my dietary texture needs change hourly depending upon my current swallowing issues. It’s not because I want to be ordering food. I said to one of my therapists the other day: ‘I can only think of two or three times in this entire period where I’ve actually chosen to eat Uber Eats’—and ‘chosen’ is the key word—‘despite having care in my home at the time.’ That should be a choice, not a forced measure, for me to make sure that I’m eating food.
It’s punitive again because the NDIA don’t want to listen to therapists’ reports. In the meantime, who loses out? Not the NDIS; it’s me. As a participant who can’t advocate for myself in writing, I lose out. I tried to drag a housing issue to court or through a legal process—through another Administrative Appeals Tribunal process. I lose out. I can’t communicate that and get the case notes and everything together and get the emails flying backwards and forwards to get things moving. I lose out. That’s why it’s punitive. Do you have any other questions?
TREATING THE DISABILITY AND NOT THE CAUSE
Why are you treating the symptoms but not the cause? What’s the core issue? Is the core issue that you can’t communicate in this particular way which is expected by society and/or by a societal norm, and/or may be legally required to make sure that you can progress this issue, or is it that you’re just anxious and you need a little bit of help to plod along? In my case, treating the secondary issue is not treating the cause. The cause is the fact that I need help and support to communicate. Disability goes 24/7, 365 days a year. It doesn’t stop. Again, those goes back to the punitive issue of only funding people for supports for certain hours of the day. The NDIA are funding people for 365 days of the year but, are forgetting that there are things called Saturdays, Sundays, and public holidays which are not being accounted for in people’s plans.
It’s crazy that the NDIA are going to treat the secondary issue but not the cause. One thing that I can tell you from a health perspective that the NDIA are bad at is that they’ll treat the symptom but not the cause. ‘Your heart rate is a bit fast. Here, take this pill. It’ll slow your heart rate down.’ Okay, but why is my heart rate fast? What’s actually going on? What I would like the committee to really look at is making sure that the NDIA is treating the cause of the problem, not the symptom.
Another example that I can give you is that, because of not being given a wheelchair, I need vitamin D supplementation now because I can’t get outside. The only time I access the outdoors is in an ambulance to go to another doctor’s appointment and back. Because I need a piece of equipment to mobilise, I don’t actually get to go
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outside. I’ll now likely need vitamin D supplementation for a very long time, if not for the rest of my life. The cause
is that I need to get outside. The symptom is the lack of vitamin D. I can tell you, being a nurse, that the underlying
issue is me not having enough vitamin D and me needing vitamin D supplementation. The cause of me needing
medication assistance is the post-exertion malaise that I experience which can cause me to, at the snap of a finger,
behave like an uncommunicative quadriplegic. But that means that I need that level of support available to me 24/7.
I might not immediately need it, but I need that level of support available to me 24/7 to make sure that if I do become
that way, I can immediately get the help I need when I need it. I don’t have the ability to wait and to be delayed that
help.
I can categorically tell you that I’ve been to the hospital, and they’ve kicked me out after the four-hour window
of doing their assessment. They do not treat this diagnosis. They do not believe that they need to touch it at all or
have anything to do with it. It’s the same for many other conditions or people with disability. They don’t want the
people with disability filling our hospitals; it takes up bed space, it takes up time, it takes up money, energy, effort,
and resources. What they do is kick people out into an inappropriate environment and don’t resolve the underlying
social issues, which are usually related back to the NDIS. When health doesn’t want to touch your diagnosis, the
NDIS don’t want to touch the diagnosis either. They’re not forced to touch the diagnosis because health isn’t forcing
them.
Somebody who is disadvantaged in the health system is also disadvantaged in the NDIS system. Someone who’s
disadvantaged in accessing the DSP is also disadvantaged in accessing the NDIS. As you said, invisible disability
is a large factor that I believe the royal commission didn’t investigate enough. They are the people who are suffering
the most and probably need more help than the people where you can physically see what is going wrong. Because
you can’t physically see it, you just assume that they’re okay. Going back to one of my reports it says, yes, I can
present very well. I’m very well put together. I look like I know what I’m talking about, and I do. But as soon as you
ask me to do anything with that information, I fall to pieces.