RE: Capability and Culture of the NDIA

Dear Committee Members,

Thank you for undertaking this inquiry into the NDIS.

I am a disabled woman, and parent of three disabled children. I am currently an NDIS participant, and have been for just over a year. My children should be participants (according to all of their medical & allied health teams) but are not yet enrolled in the scheme, applying for them is too daunting a task.

Recently I “joked” that all NDIS plans should come with automatic funding for “NDIS induced trauma”. Only I wasn’t really joking, I don’t know anyone with an NDIS plan who isn’t stressed, anxious or outright traumatized by dealing with the NDIS. My doctors and allied health providers look exhausted and defeated when the NDIS is mentioned. They know my children need NDIS support, they know it will be an uphill battle to try and I know they are hoping I won’t ask them for help.

My experience of the NDIS, including my observations of friends, community members and people in my support groups for various conditions, and relating to the NDIS, is covered below:

a. the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment

• LACS routinely act as planners with no clear qualifications and skills to do so. LACS gatekeep access to planners: if a LAC is not qualified to fully understand your situation, they are, by default, not qualified to understand your need to speak to

• Someone more senior, this is a serious Dunning Kreuger issue and it harms disabled people. Cases should be referred down a chain of seniority, not up it, or at the very least there is an urgent need for NDS applicants & participants to have a clear and easy pathway to speak to a planner over a LAC. The NDIA equivalent of “Ryan’s Rule”.
• NDIA staff with no lived experience of disability, nor experience supporting people with disability, no background in disability or medical training, read complicated medical or allied health professional reports. They do not understand what they are reading (that is assuming they have read the reports at all) and then they decide what supports a participant needs. And they get it wrong. The NDIS should be obligated to prioritize qualified professional advice over LAC/planner’s opinions, with a clear process of contacting those professionals for further clarification where there are any serious concerns. And this communication and consequent decision making, should always be conducted by the person who requested the further information, ideally verbally, with any required details provided later in writing.
• NDIS staff (again generally with no medical qualifications, and without discussing with the participants doctors) often appear to feel qualified to determine what treatments a participant is required to have had before entering the scheme, or before a particular support is provided. Imagine, as a layperson, considering yourself more qualified than the participant in question, or the expert medical & allied health professionals involved in their case, to judge what is and is not medically appropriate for a disabled persons medical care. Having learned this through my own, and my peers’, bitter experience I now ask my doctors to list the easily googlable treatments for my rare conditions (which we have already tried or dismissed), and why those treatments are not suitable for my situation. Again, I feel the need to mention the Dunning-Kruger effect. It is not appropriate for ANY member of NDIA staff to decide what medical treatments an applicant or participant must undergo in order for the NDIS to accept expert medical opinion that the person is indeed experiencing disability in addition to needing medical care. Medical and allied health providers are not going to risk their professional registration and livelihoods, if anything they will under rather than over estimate the degree of a persons disability. Their professional opinions must be respected.
• Rejections are often dismissive and demeaning, and often applications are rejected outright over a simple issue, instead of asking for further information. Issues with applications are also raised one issue at a time, indicating that a staff member has read to a single point of issue, requested a correction and read no further. Once that is corrected they (or someone else) reads to the next point of correction and asks about that, again, reading no further than the first issue. This is the most extraordinary waste of staff & participant time, to the extent that one must wonder if it is a deliberate delaying tactic. If the NDIS exists to help disabled people, why are applicants whose application is missing a few minor details, or isn’t clear enough, not provided with guidance, or questions asked of their providers. Applications with issues should receive a single round of clear, concise, helpful and kind feedback, it costs nothing to be kind.

• Lack of Transparency. You speak to an LAC or planner then your request/case is referred to someone else who makes a decision or creates your plan. You have no control over how your situation is put to them or what is emphasised or not addressed. If you don’t have perfect reports, if they aren’t read well or fully understood, you don’t get what you need and there is no opportunity for correction. It is only after the plan is finalized or there is a review do you find out the reasons and by then it is too late. There is no opportunity for feedback to/from NDIS, between the LACs formulating recommendations, and the plan which is finalized. If you go for a review, the entire plan is reviewed, by yet another person you haven’t met and can’t talk to directly. The participant is working blind. Then the NDIA planners make decisions that affect our lives. The NDIS must provide genuine transparency as to what information the NDIS staff member making decisions receives, and participants must have agency in the process of NDIS decision making, ie the opportunity to be heard by and ask questions of people making decisions that effect their lives.

• NDIS direct employed staff (ie when calling the NDIS directly, planners, AT assessors etc) in general seem to be better trained and more reasonable to deal with than staff of outsourced services. For example I have a dear friend who was moved to a planner and for the first time had a great plan which allowed them to re-enter the education system, access the community, etc. The next year the LAC agency refused to let them speak directly to a planner again and their plan was slashed to devastating effect. The next year they were again allowed to talk directly to a planner and much of the slashed plan was reinstated. The NDIS planners involved clearly had a far superior understanding of my friend’s disability related needs & what was appropriate & possible, they were also reportedly far more kind and respectful. More (ideally all) staff should be direct employed by the NDIS, and with conditions which are conducive to stability in staffing, this will minimize recruitment and training costs while ensuring better outcomes.

• LACs, plan managers, support coordinators, etc seem to have little understanding of self management. And no understanding that planners make “reasonable and necessary” judgements about how to allocate funds, but self managed and plan managed participants are then able to choose how to use those funds, yes within the rules set out for self managers, but not necessarily exactly as prescribed by a planners ideas as they assembled the plan. People come to support groups asking for help having been told all manner of simply wrong things about what is possible as a self manager, some examples:

  • You can’t have a support coordinator if you are self managed
  • You can’t self manage if you need to pay for any sort of support to do so (ie book keeping, learning to use spreadsheets)
  • You can’t use funds to pay for tools required to self manage (ie accounting software)
  • You can’t direct employ staff Please, PLEASE hire The Growing Space to provide onboarding training videos and materials for NDIS staff & representatives so they can get the basic facts right.

b. the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency;

• Staff attitude: the majority of NDIA staff do not appear to have lived experience of disability, they seem unable to fully grasp the difficulties of living with disability. There is a strong tendency to ableism & belief that participant supports are frivolous or unnecessary. Disabled people are forever caught between profound gratitude for the supports the NDIS does supply, and abject terror of whatever new NDIS trauma or debacle is around the corner.

• NDIS staff regularly make (often ridiculous) statements which reveal how lacking in understanding of disability, lacking in understanding of the NDIS, and also lacking in both empathy & training they are, and how judgemental:

   a. "you don't qualify because you can work" (working, or not working is, in no way a criteria for NDIS participation)
       
   b. "you don't qualify because you can get out of bed & shower without help" (this is, again, in no way a sole measure of disability, nor a criteria for NDIS participation)
        
    c.  "genetic conditions only affect children" (I don’t even know where to start with this one)
         
     d. "people think they have a disability but really it’s just a medical condition"
      (fancy saying this to an OT, who has just done a full functional assessment for an applicant, who is more qualified than an OT to assess functional impairment?)
  

  These thoughtless comments are often confusing, devastating and at times genuinely traumatic for disabled people. The NDIS exists to support some of the most marginalized, neglected & abused people in society and then allows ignorant and untrained staff to dole out misinformation with a side serve of contempt.

• With regard to NDIS staff making demands for medical treatments to be tried or further letters to be written, but focusing more on the impact on the participant: In order to avoid unnecessary rejections and delays I must tell my doctor that I have been googling my condition to see what the NDIS assessor will use to reject my request based on their quick google of my rare condition, things which I know my doctor has already considered and ruled out, and that I now need my doctor to spend extra time spelling out minutiae of their medical decision making on top of providing their opinion & advice. While also asking them to be concise, because letters and reports clearly often aren’t read well, or sometimes at all. For example, I obtained a letter of support for an adjustable bed from my respiratory physician, who is the director of the ICU at a tertiary public hospital. Imagine feeling you had to tell the director of an ICU what to write in a letter. Imagine, in the middle of a global pandemic, wasting an ICU doctor’s precious time, by asking them to add irrelevant details to their letter of advice, because someone who did a quick internet search might think they know more than they do about what I need. Most doctors don’t really like their patients coming in talking about what the internet has to say. So I am opening myself up to my doctors’ irritation and frustration in order to avoid negligence

• via unqualified over-reach by NDIS staff. The obsession with tick box thinking and
• prioritizing procedurally trained staff opinions over expert advice is demeaning and
• humiliating, both directly in dealing with the NDIS staff, and also in the ways it forces us to beg our expert providers to jump through hoops like performing monkeys for people with no actual qualifications to be making those demands. Experts who may then “fire” us as patients for being too time consuming, or redirect their frustration at having their expertise undermined and their time wasted by the NDIS toward us, the messenger. Damned if we do, damned if we don’t.
• Furthermore, If we get our letters from our GPs, NDIS staff often (but not always, it’s random) complain that it’s “just a GP” giving an opinion and only a non-GP specialist letter will do. When I lodged my application for NDIS access my GP wrote an extensive letter, working through all of my disabilities in a systematic fashion. She used the same format for each issue, providing the condition, an overview of how it fit in my overall picture, duration, date of diagnosis, diagnosing specialist, any other treating specialists I had seen, current specialist, treatments (tried, failed, continuing) and the nature of the permanent impairments for which there were no further suitable treatments. Mysteriously two of the 6 conditions were accepted based solely on this excellent evidence, while the other four were rejected for failing to have been described by a specialist. No further evidence was required. No questions asked. Just “This must come from a specialist”. Why my GP summarizing my geneticist and psychologist opinions was acceptable, but not my cardiologist or rheumatologist, is beyond comprehension. General Practice is a specialization, GPs are consultant doctors who have specialized in primary care. They should be respected as the cornerstone of complex care and the one doctor most likely to have a complete understanding of the holistic picture regarding any given person. Especially when they are doing the NDIS the courtesy of distilling years of complex medical data into a clear & concise statement which is self-evidently backed by all the records required to make claims about specialists consulted, etc. Randomly requiring non-GP specialists to repeat the same information is a slap in the face to GPs, who are highly skilled professionals. Furthermore, requiring non-GP specialists to restate what the GP has already detailed is:

a. Likely to cause 3-12 month delays for disabled people in desperate need of access to the scheme, or access to particular supports/equipment. And that is if they can see a private specialist. b. Likely to be expensive, requiring a participant to see a specialist doctor specifically to get a report is asking them to spend hundreds of dollars they probably don’t have while taking up time that could have been dedicated to a patient with an urgent medical need. c. An extraordinary waste of both the GP and the non-GP specialists’ time during a global pandemic with unprecedented strain on the health system. People with more “invisible” disabilities have often spent their whole lives disbelieved, diminished and neglected. This disgraceful disrespect for highly qualified, expert opinion is just another way of being told we are liars and cheats, trying to get away with something. And it damages our relationships with professionals whose support we desperately need.

• The NDIA often chooses to fund a cheaper support when it is not suitable for the participant. For example, when there is nothing in the reports to say that the cheaper support is suitable and there is no reason given why the NDIA think that the cheaper support is suitable. Eg funding therapy assistant instead of a physiotherapist or exercise physiologist. If a therapy assistant is suitable for the participant it should be in the Allied Health professionals report or there should be consultation with the participants professional team to establish why it would or would not be suitable, rather than an NDIS staff member making this call independent of advice personally tailored to the particular participant’s needs. Again, this is demeaning and diminishing. And it risks causing harm. An NDIS staff member should not get to decide that our support requirements are not as we, or our treating professionals, have described.

• For the NDIS to be an organization which supports disabled people, rather than causing further trauma, there must be trust and respect. Participants must be treated with trust and respect, so that they can, in return, embrace the NDIS staff, and process with trust and respect. c. any other relevant matters.

• Who is the NDIS for?: There needs to be clarity around who the NDIS is for, people are often told they are “Not disabled enough” when applying for NDIS. If the NDIS is not going to invest in preventative measures and capacity building, why not? If the NDIS is willing to invest in preventing decline and capacity building for some disabled people, but not others, which disabilities are privileged, and why? If slowing progression of disability can be achieved through support, surely that is of long-term cost-benefit not only to both the individual and to the whole of the Australian society/economy but also directly for the NDIS.

• Rorting by large business: There is a lot of talk about forcing all participants to use only “registered” providers in order to “protect us”. The most egregious rorting, neglect & abuse seems to unfailingly come from large business, not sole traders or small unregistered business. In general one seems to pay more for just plain shoddy “care” when dealing with larger organisations. Registration provides no meaningful protections, but it adds a lot of costs, and disabled people don’t want to be forced to only use registered providers, listen to us. Instead of focusing on forcing all participants to be registered, please focus on cracking down on large providers ripping participants off while delivering little.

• Choice and control vs registered providers: The whole goal of the NDIS was to provide disabled people with choice & control and to allow maximum integration into mainstream society. Please, please do not force us to use registered providers, with their “crip tax” prices and lack luster offerings. Enforcing the use of registered providers will only exacerbate this problem by rewarding bloated, overcharging, lazy & ableist organizations with a captive market. I want to choose the services and products which serve my needs in the way that suits me, and which provides me the most “bang for my NDIS buck” in the targeted areas that matter most to me. I do not

• want to be forced to deal with large organizations who think they know what’s best for me and try to force their systems on me.
• Stability of funding: NDIS participants live in fear of their plans being slashed. Even when participants receive a good plan, a plan that meets their needs and allows them to start improving their lives, whether by increased employment, study, access to the community, or any other measure, there is always the fear of having it ripped away next time, just as things really get going in the right direction. What will happen if you get used to having the right supports and then it is just gone. Will it be worse than to have never known what good functional support was like? And we fear it because it happens every.single.day. The NDIS must offer more stability, other than funding for specific things which it is clear will not repeat. Funding should not be allowed to be cut more than 10-15%. Certainly not without a very good explanation and extensive support to adapt to the changes that have been made.
• Disabled people can be parents too: NDIS design does not appear to have ever considered the existence of disabled people who are parents (esp mothers), and even more, to have neglected to consider the existence of disabled people who are parents of one or more disabled people (which is a common situation in the case of heritable disorders). Rather, the NDIS seems to have been designed around the idea of a disabled person who is a child, or dependent adult. Or perhaps an adult living individually or in a couple. But never the disabled person as a parent. Let alone as a parent of one or more disbaled children. Imagine being a disabled woman with disabled children and of “Sandwich generation” age with aging and/or disabled parents, and then trying to squash that reality into the NDIS policies and procedures. I am a disabled woman parenting three disabled children, my children do not have plans, and my plan is not supposed to benefit my family. I appreciate the importance of protecting disabled people from abuse, but was a single disabled parent consulted in how this policy was formed? Parenting is the only real “job” I have left. I have long since been unable to work, I have given up all my hobbies. But I do my best to be a good parent. Terrified as I am of being accused of fraud, I agonize daily over where “supporting me do the things I used to be able to do” ends and “benefitting my family” begins? My kids, due to disability, need MORE help than an average child, they certainly aren’t “informal supports” for me. I need a support worker to help with most household activities. I don’t have one person’s washing to do, I have six. If I am unable to cook (almost always), and my husband is unable to cook (he’s our sole income earner, works in a senior role with high expectations, and is my carer and carer for our three very high needs kids, a load which currently places his ongoing employment and his health in jeopardy)… it’s not just my meal that needs cooking, it’s my whole family. What happens when my youngest child needs help with homework, help that I was able to give their older siblings, but can no longer offer them? Helping with homework or cleaning a child’s room is “parental responsibility” but I can no longer do these things. Again, the punitive “disabled people are trying to get away with something” culture of the NDIS makes these daily decisions exhausting and terrifying.

• My friend has a similar genetic disability to my own, and has two children with the same diagnosis (also participants). All three family members have been NDIS participants for some time. This year my friend (the parent) was granted approval for SDA. The letter stated that their two children could come, but their partner would have to pay full commercial rent if he was to join them. Both they and their partner are living on disability pensions in (unsuitable) public housing. So this family will be staying in their unsuitable public housing, because the NDIS rules about family and SDA are impossible as a family living in poverty. Families with genetic conditions have multiple members with disabilities, and that often makes life more than twice/thrice as complex. And the financial impact of intergenerational disability also compounds. Parents with disabilities will, due to the nature of parenting with a disability, have their plans indirectly benefit their children, we should not feel ashamed, or like we are risking fraud accusations to use our plans and still be parents. The NDIS should value and prioritize participants’ relationships as well as their dependents when considering accommodation decision making.
• Assistance animals. The NDIS stance on assistance animals is something I wish I had the energy to write an entire submission about. But I don’t have the capacity, so I would merely like to raise that this is a spectacular example of published guidelines contradicting the intent of the NDIS, and the legislation and in fact containing statements that contradict other parts of the guidelines. And also contradicting the NDIS funded, published research upon which the NDIS claims to base all of their decision making regarding assistance animals. The NDIS seems deeply committed to preventing access to assistance animals wherever possible to a degree which is neither evidence based, nor reasonable. Rather it seems to fall squarely into the unspoken attitude prevalent in so much of the NDIS decision making that “Disabled people should not be able to have nice things or experiences funded by the NDIS, the NDIS should only pay for things which other people would find shameful and embarrassing and nobody would WANT to experience.” The logic being that anyone can enjoy wonderful benefits from a highly trained pet. An assistance animal is far beyond a typically trained pet and can be of profound benefit to a disabled person. Most people train their pets to a level of good manners and being pleasant company. Some people enjoy advanced training as a leisure activity or lifestyle. Even these folks who are deeply committed to advanced animal training are not, in general, at all in the same category of training needs or burdens as that which is required for an assistance animal. Yes, anyone might love and benefit from a Pet, that is not what an assistance animal is and the morbid fear of spending money on something that smacks of disabled people “having nice things” must end. The NDIS must be much more open to and reasonable about funding assistance animals, including funding the direct participant purchase of suitable puppies and training with suitable providers, because the process of raising and training an assistance dog, while completely inappropriate for some, is an invaluable support in and of itself for some disabled people. And because there simply isn’t the capacity from traditional providers to cover the level of demand for assistance animals in Australia.

Finally, returning to stability of funding, assistance dogs, once approved, MUST be funded for the life of the animal. It is utterly unacceptable to provide an assistance animal to a person living in poverty, who could not afford the animal under any other circumstances, and then simply remove the animal from the plan the next year as if it were a pet. With the possible exception of a clear agreement before purchase that a puppy will be funded for purchase and training but will only receive maintenance funding if it reaches the formal standard of an assistance animal (suitable tasks and PAT testing).

• Connective Tissue Disorders, late diagnosis of long standing conditions, rare &/or complex “medical” conditions: And last, but not least, I would like to address the appalling treatment by the NDIS of people with my own disability, EDS, and related disorders. I and each of my children, have Ehlers Danlos Syndrome and a range of comorbidities which is typical of people with EDS. People with EDS are told again and again “EDS is not a disability, it’s medical”. Well sure, yes EDS is medical. So is MS, so is cerebral Palsy, so is Parkinsons, epilepsy or amputation. I challenged myself to think of ANY disability that does not require greater access to medical and allied healthcare if not continuously, then certainly at certain ages or stages. And I cannot think of one. And in fact if there are such examples, why would the NDIS require all applicants to have medical proof of their disability? Instead of supporting someone with a diagnosis to prevent decline and maintain their personal best possible function, people with EDS must prove they are broken beyond repair. At best we are underserved by the medical system, which has no dedicated multidisciplinary clinics anywhere in Australia, at worst we are gaslit by the medical system. And then we are punished by the NDIS for the failings of the healthcare system. In 2022 the U.S. National Academies of Sciences, Engineering & Medicine published the following document “Selected Heritable Disorders of Connective Tissue and Disability”, which was commissioned by the U.S. Social Security Administration:

https://nap.nationalacademies.org/catalog/26431/selected-heritable-disorders-of-connective-tissue-and-disability

People with disability due to rare and complex & multi-morbid medical conditions, particularly where there is any question of what is medical and what is disability related, require expert support from the NDIS. Not just because our situations are complex, but because most of us have a great deal of trauma from years of medical (and often educational) neglect, gaslighting and sometimes overt abuse. The people who are true experts in our rare conditions will often tell us “You know more about your condition than most doctors/physios/etc”. And then we contact the NDIS and are treated like greedy, possibly dishonest and clearly deluded irritations by LACS who know nothing of our problems and want us to treat them like they are the experts as they try to squash us into tidy boxes that were never designed for us.

• I ask that the committee consider the expert opinion from the publication above as to the extensive medical AND disability impact of EDS & related comorbities.
• I also ask that there is a commitment from the NDIS to provide individuals and families living with EDS the support we need to prevent & inimize decline and live the safest & most productive lives our shoddy connective tissues allow. This includes investing in extensive allied health supports BEFORE the participant may seem grossly disabled.
• In particular, people, and whole families, with EDS should have access to NDIS planners rather than LACS, if not automatically, then at least when recommended for more complex/experienced planning support by their reporting professionals (OT, doctors, etc)

The entire experience of interacting with the NDIS infantilizes and/or demonises participants, the very people the NDIS aims to support. The experience of interacting with the NDIS often reduces (or consumes) the capacity the NDIS claims to support. Disabled people experience so many obstacles in every part of their lives, the NDIS is meant to be providing funding to support our needs & improve our lives: the NDIS should not be a burden or barrier.

Thank you for your consideration of my submission.

Kind Regards