Lived Experience Statement – Capability and Culture of the NDIA
In 2017, I initiated the process for applying to become a participant of the National Disability Insurance Scheme (NDIS). It took me three long years and four applications to finally gain access to the NDIS, which is an extensive amount of time. During this period, I experienced a significant loss of function in relation to my disabilities. Had I received the necessary support at the time, I would have required much less care than I currently do. The disparity between what I need and what I’m receiving is quite significant.
Upon gaining access to the NDIS, I discovered that not all of my conditions had been entered into their system and taken into account. This realisation left me feeling frustrated and disgruntled with the system. I had requested access to the NDIS based on a specific diagnosis, which the National Disability Insurance Agency (NDIA) still refuses to acknowledge and provide support for. This diagnosis is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Additionally, the Agency has also disregarded my diagnosis of dysgraphia, a learning disability.
Both of these conditions have a significant impact on my life, affecting the way I engage with my community, work, and studies. They also have a significant impact on my economic and social prospects without proper support.
For instance, due to the NDIA’s failure to recognise my learning disability and provide the necessary support, I have been unable to write speeches for funerals of close family members, which has been a great loss for me. Despite having qualifications as a nurse, I have lost my ability to work in this field, resulting in low economic opportunities and loss over my life. The NDIA needs to acknowledge my needs and provide the necessary support to help me achieve my goals. Looking at the numbers in the NDIS Price Guide and the SCHADS Award for disability support workers versus enrolled nurses is frustrating. Disability Support work (casual) is priced at $52.81 per hour whereas an enrolled nurse is priced at $89,17 per hour. That is a $36,36 difference per hour in my potential economic capability to earn compared to lower economic opportunities. I am potentially not going to have a high quality of life over my lifetime and/or I will have to retrain to pursue a higher qualification to sustain my worth and lifestyle.
I have faced many challenges applying for the NDIS. At one stage I became homeless due to a lack of housing support. My case has been in front of the Administrative Appeals Tribunal (AAT) for over three years and the NDIA have not been forthcoming with the support I require. Ironically, my disability, which affects my ability to communicate, has been the reason for the delay in my case. Yet the NDIA refuse to acknowledge this. They’re denying me access to the support that I rightfully need to ensure that I have access to
Page 2
everything in the community. Because of the denial, they’re also deferring the cost or not incurring the cost—which for them looks great on their budget but for me as an individual it
has made it impossible to engage, earn money, study and improve my quality of life and economic opportunities which is exactly what this system is supposed to be about.
Acquiring policies and procedures have been a challenging task as it seems that the NDIA is reluctant to share such information, which can be expected from a government agency. However, there is a lack of assistance provided in formulating Fredom of Information (FOI) requests to extract the desired data. It is not uncommon for me to have to submit numerous FOI requests, sometimes up to four times, to receive the information I require.
Through my individual advocacy work, I have found that the NDIA has not properly engaged with and sought input from the community regarding diagnosis and evidence-based practice that should be used to inform and support decisions, as well as access decisions.
For example, in relation to ME/CFS, the NDIA only consulted a single medical practitioner who is considered by many to be out of touch with the literature and to hold a biased viewpoint. There are those who are actively advocating against this person and attempting to prevent them from providing evidence to the community. Despite numerous efforts from advocates to remove this individual from providing evidence to the NDIA, it appears that the NDIA has not consulted the community in regards to who they would like evidence sought from and their views on treatment and access to treatment.
Furthermore, the NDIA was found to be using out of date guidelines without providing an explanation or justification. When asked to elaborate, they were unable to provide a response.
The NDIA made a decision to appoint Professor redacted based solely on his
pre-eminence as disclosed in their email dated 31 October 2018:1
"The Agency (TAT) requested a specialist medical report from Professor
`redacted` in February 2018 to assist in understanding of Chronic Fatigue
Syndrome/ME and consideration for participants with this condition in
applying to access the scheme. The Agency initially contacted `redacted`
the convenor of the CFS Working Group and author of the report RACP …
Clinical Practice Guidelines published in 2002. `redacted` had retired and
he recommended `redacted` due to his experience as a member of the
committee and co-author of the report. These Guidelines continue to form
the current guidelines from the RACP in Australia.
It was not felt necessary to obtain specialist medical opinion from a second
expert given his standing."
Page 3
The ME/CFS patient community and related organisations have expressed concern over the NDIS’ decision to appoint a certain Professor to advise them on the subject of ME/CFS. If the Agency had consulted with the ME/CFS community before appointing this individual, it is likely that they would not have been recommended due to the lack of support from the ME/CFS community. This highlights the importance of taking into account the opinions of those affected by a condition when making decisions that will have a direct impact on them. It is essential to ensure that the voices of those who experience the condition first-hand are heard and respected when making such decisions.
The NDIA is coercing ME/CFS patients to undertake GET/CBT treatment as part of the accessibility requirement.2
Email correspondence from the NDIA to redacted in 2018 reads;
“The Agency has been contacted over recent months by a number of individuals and
organisations. They are suggesting that recent research has identified that Graded
Exercise Therapy has been identified as not an appropriate treatment and that the
Centre for Disease Control and Prevention (US) has removed the recommendation
for GET from its recommended treatments. There have been references to
unpublished Australian research, that found that 89% of 608 respondents indicated
that increasing the level of exercise/activity resulted in a worsening of their
symptoms and that this rate of harm is consistent with other patient surveys
conducted around the world...
The Agency is currently asking potential participants with ME/CFS to provide
evidence of undertaking GET and CBT to assist with making a decision about the
permanence of the condition”.3
It is perfectly clear that the Agency was well aware but chose to ignore more up-to-date research when they sought a certain medical practitioner’s advice.
The Agency is aware that the current policy is detrimental, yet they have not taken any action to rectify the situation despite the community’s efforts to communicate this fact. We have evidence to prove their cognisance of the matter and that they are enforcing a policy that is harmful. The question we must now ask is, what will be the financial impact on the government? It is evident that the policy in question will be costly, and we must consider the extent of this cost.
I have found that the culture of engagement with both the NDIA and the Local Area Coordinators (LAC) is such that they seem to have limited understanding of the NDIS and
People with Disabilities and Clinical Decisions
It is concerning that people are making clinical decisions despite lacking clinical backgrounds. For instance, they are not nurses, psychologists, or have any clinical background, yet they are making decisions about the support required by people with disabilities.
In my case, during my first NDIS plan, I was registered to practice as a nurse and was qualified to make an informed decision about my needs. I estimated that I required 12 hours of support per week, but I was only given four hours of support per week. This was a significant reduction from my initial request. At the time, I possessed more than sufficient qualifications to assess my needs and make an estimate accordingly, and then obtain a professional evaluation to determine if my requirements exceeded or fell short of my estimation. Had I been granted the necessary support back then; I probably wouldn’t be in the position I am in today. Presently, I require indirect support 24/7, 7 days a week and 365 days a year, in addition to assistance with administrative tasks and other activities.
Considering my circumstances, it is reasonable to assume that the NDIA will incur significantly higher costs to facilitate my support needs and my engagement with the community.
I imagine that the cost of my housing will be quite substantial, given the significant changes in my housing needs over time. These changes have resulted in a considerable increase in my requirements, from a slightly modified and accessible property to a fully accessible property that can accommodate a wheelchair and a plethora of other equipment. It’s worth noting that such equipment cannot fit into a standard or average-sized property. My ability to access the community has also been severely impacted, as I am now confined to my home and reliant on others to organise support.
In my view, the NDIA’s modus operandi is to delay, deny, and deflect decisions as much as possible, forcing participants to fight at a legal level rather than making decisions at a lower level.
As a participant, I have found the operational processes and procedures to be adversarial and not particularly transparent. My experience has been that I am regularly required to request information from my file in order to understand the gaps in information for decisions made and the basis on which the decision was made. I have also noticed that the NDIA requests information but does not offer funding or permit sufficient financial resources in plans for the production of that information. For example, they may request a manual handling assessment but not allocate funds for it. This causes me a problem as I am not in a position to pay for the assessment myself, so I am left without the necessary supports and have to hope for an earlier review of my next plan. There is no system in place within the NDIA for additional funds to be allocated to an existing plan.
When participants present evidence indicating the need for 24-hour care or similar assistance, the NDIA fails to provide the necessary support. They do not offer anything remotely close to 24-hour care, nor do they provide any new options reflective of such care. Instead, they offer a mere six hours of support per day and expect participants to make do with that. This decision is certainly interesting, and it is a contributing factor to the significant number of disputes arising at the AAT. Furthermore, I have discovered that the Agency requests evidence at the ATT but fails to provide the necessary support to obtain such evidence. As an example, I require assistance in accessing doctors, but when I requested
Page 5
such support, the NDIA refused, stating that I needed to provide evidence. However, I am unable to obtain the evidence without their support. The Agency’s response to that was to subpoena my entire medical record.
The NDIA’s decision to subpoena my entire medical record from birth is completely irrelevant to my participation in their program. Frankly, I find it quite traumatic to have my entire medical history laid bare for someone else’s perusal. It’s frustrating that the NDIA won’t provide the necessary support for me to gather the evidence I need, yet they have no qualms about demanding access to my personal medical information. It’s time for them to stop hindering people from accessing the support they need and start allowing participants to use the legislation to their advantage.
I have submitted numerous model litigant complaints against the NDIA, yet I have not received any response from them. Despite my attempts to raise the issue with the AAT, the Ombudsman, and the Human Rights Commission, I have not made any progress. It is disheartening to note that the government has defunded advocacy organisations or significantly reduced their funding, making it difficult for people to access the support they need to navigate the system. I honestly feel stuck but despite these challenges, I remain confident that I will find a way to work my way around it.
I have found that the NDIA is more than willing to provide funding for people with visible disabilities. They are happy to fulfill their every desire and need. However, when it comes to those with invisible disabilities, the NDIA is quick to question the necessity of their requests for assistance. They scrutinise every report and doubt the legitimacy of the participant’s needs. From my personal experience, I have learned that people with disabilities often try to conceal their struggles and push through their functional limitations. It is not the visible symptoms that are the most challenging, but rather the hidden struggles that occur behind closed doors. When all supports walk away and I have time to myself, the true difficulties arise. These moments can be incredibly frustrating and challenging, but unfortunately, they often go unnoticed and unacknowledged. I require time to myself, and it’s imperative that I have it. Unfortunately, my environment doesn’t always support this need because I am reliant on support workers in my home.
Additionally, obtaining my personal information has been a challenge, as I’ve had to constantly submit FOI requests to the NDIA. Frankly, I see no reason why participants shouldn’t have access to their records in the same way they have access to My Health Record. It’s baffling to me that we can’t have a similar level of access to our NDIS records. This information should be readily available and easily accessible, without the need for FOI requests. I’ve noticed discrepancies between the information on my file and what I know to be true, and the NDIA has cited insufficient evidence in some cases. The NDIA has claimed that there is insufficient evidence of the need for support, yet they have failed to provide a clear explanation of what they mean by “insufficient evidence.” Upon reviewing my file, I discovered that they require sleep logs as an example of my needs, but have not provided any support to help me gather this information. Despite my repeated
- requests for assistance, they have either denied my requests or simply chosen not to provide the necessary support.
When it comes to accessing support and services, I’ve discovered that working with large organisations simply doesn’t cut it. In fact, the NDIA has been far from supportive of my efforts to find alternative solutions that work best for me. Over the past 18 months, I’ve had to navigate through a dozen different organisations, only to find myself with significant gaps in support and help due to the unskilled support workers they kept sending my way. The issue at hand is that the NDIA fails to recognise the extent of my support needs, which ultimately prevents me from accessing the help and support that I require.
The NDIA use the SCHADS Award to determine the funding for participants. However, it seems that they fail to comprehend that while using the SCHADS Award to support participants is acceptable, the pay scales within the Award are not reflected in the NDIA’s funding. As a result, the NDIA provides a very low level of support, which does not incentivise workers to remain with a client for an extended period. If I were a worker in the workforce, I would undoubtedly seek higher pay. Pursuing higher pay would necessitate constantly changing jobs to access more money and upskill oneself, as the current system does not support long-term client-worker relationships. The NDIA previously had support levels, but they were removed without explanation. My only assumption is that it was due to cost rather than a thorough examination of individual cases.
The NDIA has a culture of attempting to reduce cost as much as possible. This has resulted in a decrease in the budgets of NDIS participants, as well as in the line items of the NDIS. Over the last five years, this has had a negative impact on people with high and complex needs.
These participants are now struggling to access the care they need due to the lack of sufficient funding to cover the cost of high-skilled workers. This has resulted in participants being neglected and put at risk, not being able to afford highly skilled support workers in their plan.
The NDIS Price Guide for 2022-23 has been updated to include only two levels of complexity for service prices: a standard price and a single “high intensity” price. Gone is the previous Level 3 high intensity support, leaving only Level 1 for standard supports and Level 2 for high intensity supports. This means that there is no longer any flexibility to charge a higher price for services listed within the price guide.
The ramification of this is the unfortunate reality that participants with high and complex needs are facing significant challenges in accessing the support and services they require. The root of this issue lies in the fact that many workers are ill-prepared to work with these participants, due to a lack of appropriate compensation reflective of their skills and abilities. As a result, participants are left struggling to find the support they need, often with great difficulty. This is particularly concerning given that those who require the most assistance are often the ones who receive the least.
There Are Unskilled And Unqualified Support Workers Charging The Maximum NDIS Rate
There are unskilled and unqualified support workers charging the maximum NDIS rate, which I personally don’t agree with, and it quite significantly frustrates me that someone who has no qualifications or training can walk into a job earning over $100,000 a year.
After dedicating years to honing my skills and knowledge in the healthcare industry as a hospital nurse, I find it perplexing that support workers with less qualifications and expertise are earning more than me. It is frustrating to be sought out for advice by those who lack the necessary skills to perform their job effectively. What’s more, it is concerning that support workers are not held to the same regulatory standards as nurses and therapists. Support workers are entrusted with administering medication without any knowledge of its effects or potential side effects. At the end of the day, who’s going to wear the cost if a support worker injures the client?
The NDIA was the ultimate decision-maker in choosing a support worker over a nurse to administer medication. The NDIS’s complacency in this matter is alarming. Ultimately, it is the client who will bear the consequences if a support worker makes a mistake. It appears that the NDIA believes that support workers are the solution to all problems and their primary focus is to fund them.
Any request beyond that is met with resistance. In my experience, I have found that sometimes it is necessary to fund something to prove its effectiveness before the NDIA will consider funding it. However, if you were not initially funded for the support, you technically do not have the budget to obtain it.
I have personally approached the NDIA requesting 20 hours of occupational therapy per week, but was only granted one hour. I was then expected to use that one hour to write reports, communicate with various therapists, and determine the necessary equipments I need, all while the therapists spent the entire appointment doing other tasks. Unfortunately, thistimeisnotbeingusedeffectivelyasmymtherapistsaresolelyfocusedonadministrativetasksduringoursessions.Theyarenotinactivelyengagingwithmyissuesorattemptingtofindsolutionsworkforme.Thisapproachiscounterproductiveanddoesnothavemakesense.Despitethis,when Irequestadditionalfunding,theNDIANeedsdeniesmyrequest.Itisfrustratingtobe criticisedforrunningoutoffundingsquicklywheneamotreceivingthesupportIneed.
- eager to speak out, but fear the severe legal and professional consequences that may follow.
The government prefers to conceal information so these people will not speak up and speak out without being released from their legal obligations. Whether legal or not, sharing such information carries significant penalties. This issue is likely more deeply ingrained in the NDIA than we realise. The only way to uncover the truth is through a full-blown inquiry, one with similar powers to a Royal Commission, where information can be subpoenaed from individuals. I firmly believe that a Royal Commission into the NDIA, or an inquiry with comparable powers, is necessary to force the release of information.
Another call to action would be to address the issues at hand, it is imperative that the Agency’s views on ME/CFS are rectified and the NDIS process is made more transparent. It has come to my attention through various social media groups that the NDIA blatantly disregards legislation and the needs of those requiring support. They argue about unreasonable risks and then turn around and insist on Agency management, without truly examining the legislation. It is important to note that the legislation clearly states, and I quote, “provide funding for supports, for example, budgeting training that would assist the participants to manage their own plan” Therefore, there is no excuse for the NDIA to not provide additional support, other than their reluctance to spend more money.
Interpretations of legislation suggest that once funding has been allocated to the participant and spent in accordance with the plan, it is deemed reasonable and necessary. It is important to note that the decision of what is reasonable and necessary lies with the NDIA, ot the participant. Once funding has been granted, the decision is final. Participants are not required to provide further evidence to support their expenditure. However, the current process demands evidence for every expense, which ultimately leads to increased costs. For instance, I am trying to acquire a piece of equipment worth $50 but I need a report or email confirming its necessity.
It simply does not add up for these low-cost items to suddenly cost hundreds or even thousands of dollars just because the Agency demands a letter stating that it is reasonable and necessary. This was not the original intention of the NDIA, which was created to equip participants with the freedom to choose and control their own lives and the resources that will aid them in doing so.
It is clear that there are numerous irregularities occurring behind the scenes with the NDIS.
The NDIA is disregarding therapist recommendations and making their own decisions without any medical qualifications or assessments beyond paperwork and a brief meeting. This is a concerning situation. In 2018, my GP wrote a letter to the NDIA stating that I needed a wheelchair. Yet, five years later, I still do not have it. There is evidence that a wheelchair would enable me to access the community more independently, yet the NDIA is not providing the equipment that they have been told I need.
My quality of life is far from ideal due to my limited income. Despite having the necessary qualifications, I am unable to use them because the NDIA is denying me my legal right to the supports I need. I have had multiple advocates abandon my case as it is too complex for them to handle, making the situation both challenging and infuriating.
What truly matters is the quality of life for the participants, and this should be the top priority above all else, regardless of their disabilities. By providing participants with a better quality of life, it can potentially make other aspects of their lives easier, which ultimately benefits everyone involved.