Joint Standing Committee on the National Disability Insurance Scheme

Submission to the Capability and Culture of the NDIA

Firstly, I would like to apologise as I can no longer write in a logical progressive way owing to my condition. This means I jump around a bit, but it now takes me such a long time to write it’s the best I can do.

I was so unwell it took me weeks to gather the information for my application. I initially spoke with the customer service officers who advised me to lodge what I had and, if anything further was needed, I would be advised. I submitted my application via email on 18 November 2021 and on 26 November 2021 (8 calendar days!) I received an email with a letter attached quoting so much legislation and with so much extraneous information it was too long winded to read. Instead of requesting more information, reference was made to an incorrect medical condition (similar name but totally different condition), my psychological condition (which I was not applying for mainly) and that I had not explored all treatment options. When I emailed back and asked what medically trained person had made that decision. I received phone call in response to my query. Noting my condition involves cognitive and memory issues, I found the phone call very difficult as it required an interpreter for the NDIA assessor, and this caused many long pauses in the conversation to the point I could not keep track of what was being said. Therefore, when the call ended, I had no idea what had just transpired, and I was far too unwell to follow up any further. I did eventually contact a LAC which turned out to be lots of long complex emails, and as I told her I could not read long emails it was a motivator for not applying.

My experience applying for the NDIS was confusing, demoralising and impacted my already fragile health to the point where I am having high anxiety about reapplying, but without it I cannot maintain a clean home, my independence, my physical and mental health to have some quality of life. From navigating the website, trying to work out how to comply with ALL that is required (including special words and phrases apppartently), to being rejected in about a week with no specific information on what I needed to do to rectify. I engaged the assistance of a LAC who did not seem to be interested or concerned about me or my situation. Because of being rejected by NDIS I was forced to engage QCSS (Qld Community Support Scheme) services which do not meet my needs (they are over capacity and have their own systemic issues) and I am struggling to manage my health and have some semblance of a normal life being mostly housebound, and unable to perform normal everyday tasks. My life has completely been turned upside down as my disability/condition is lifelong, has no cure or treatment (only symptom management). I am very alone and isolated as I am mostly housebound with the absolute minimal support. I was deemed totally and permanently disabled, have been medically retired from work and am now on Disability Support Pension (DSP). At the time I applied I was not yet approved for DSP which is also a long and demoralising experience but not nearly as much as the convoluted NDIS application process and lack of care from NDIS staff.

• There is something I refer to as ‘Industry Bias’. This is where the employees know the legislation/policy/procedure and therefore assume that everyone in the world knows what they know. I have witnessed this many times in my long and varied working life. This is how incapacitated NDIS applicants are treated – as if they are not smart enough because they aren’t fully functioning NDIS employees who have complete knowledge of what is required.
• The website has too many layers and so many links to click and quite often what is contained in one link contradicts information in another link. There is far too much expectation that everyone has the capacity, not just to navigate the complex website, follow all the links, but to fully understand what is required. I am a highly skilled business professional who has worked for state and federal government agencies and the private sector for over 40 years, and yet I was completely overwhelmed by the information overload and contradictions. It doesn’t help that many of the links lead you to conflicting information. Admittedly I have cognitive/memory issues now, but I couldn’t help but wonder how others were coping with navigating this maze. I have spoken to others who have provided me with similar feedback.
• The expectation that GP’s have the time to study the NDIS requirements on the confusing maze of a website is ridiculous. It should be simple questions that the GP can tick and flick with a rating scale of the physical and mental capacity of the applicant. The GP can gather that information from the rest of the medical team. What treatments a person has undergone or not undergone is not the business of NDIS as they are not medically qualified to rule on treatments – not to mention how private and sensitive the information is. It’s a massive breach of privacy and unnecessarily so. And not all treatments are right for all patients. One shoe does not fit all! Therefore, they need to trust the person’s medical team. (Only your treating doctor/medical

Page Text

team truly understand a patient’s limitations and what they need.) And if they require further information than is in the original application provide the applicant a request with specific details of what is needed. If the medical team and the patient are conspiring to defraud the NDIS, then that should be dealt with on an individual basis. We should not all be treated like we are about to rip the system off. The role of the NDIS should be to help people gain access NOT keep them out, which seems to be the current model and attitude. Maybe my expectations are too high, after all it is ‘an insurance’ scheme (said to me by the LAC).

• There are millions of disabilities and permanent/chronic illnesses, many of which have no cure or treatment – only the symptoms can be managed. This is my nightmare. As there are no medically qualified staff within NDIS that I am aware of, the name or nature of the condition should be irrelevant and only the limitations and functional capacity taken into consideration – the doctor should be trusted. If my GP says I need help, then they should be trusted. If the NDIS feels you need to prove yourself more then they need to fund the specialist visits and the treating GP should be trusted to decide which specialist to attend – not a government funded doctor like Centrelink has. I am about to spend money I don’t have to undergo assessments and see specialists for the sole purpose of getting NDIS approval (I am maximally treated; it will solely be to gather more evidence for NDIS). I can’t afford it, but I can’t afford not to have funding either. Of note, when I first applied, I submitted a 13-page Rehabilitation report assessing my functional capacity. This report was done for my TPD application, which was approved, however was not enough for NDIS to approve funding. The LAC told me I could no longer use this report as it is out of date.
• As far as I am aware from my own research into ME/CFS and from support group discussions. people with my disability/condition are automatically rejected owing to an outdated guideline which advises Graduated Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are beneficial for people with ME/CFS. Although this report has been debunked as both therapies can cause permanent damage (see WHO, CDC and Emerge Australia), NDIS will reject anyone who has not undergone these treatments but without explanation. Again, not the role of non-medical staff.

According to the Australian Institute of Health and Welfare: Chronic conditions often coexist with some form of disability:

• half (50% or 2.8 million) of people with at least one selected chronic condition also have disability
• 40% (or 1.5 million) of people who have one selected chronic condition as their main condition also have disability (ABS 2019). This means there are many people who are in dire need of assistance who are not getting approved as NDIS website doesn’t list their ‘chronic’ condition as a disability. Therefore, it shouldn’t be about what you are diagnosed with but more about how you can or cannot function. I was told by LAC to submit my application under PTSD as I would get approved, but this doesn’t help with my physical limitations and mobility needs. And I felt dishonest doing so. I also said that I wanted to manage my own funds and was told it is really hard and you need an ABN number…. Why would I need an ABN to manage funds? And why is it so hard? I was not asked about my experience or qualifications - being disabled/unwell doesn’t diminish your intelligence, but that is how you are treated. Let’s introduce a simple way for participants to access funds. In this day and age of technology it wouldn’t be too hard to do.

In summary:

1. Base approval/decline decisions on the evidence provided by the medical team and functional capacity – not the name of the condition. Lifelong conditions should be included and those of us who are completely alone and isolated, who have no help at all need to be considered a high risk. Coming to terms with a disability, decreased capacity puts strain on everyone’s mental health and sense of self – many alone and isolated people fall through the cracks with no one to catch them.
2. Consultation with medical experts is a ‘must’ in the decision-making process using the most up to date information/guidelines and ensuring stigma and prejudice are not considered nor entertained. This is discrimination.
3. Cover the gap for psychology for those who have a Mental Health Care Plan – don’t make participants pay at least $70 gap per session before NDIS will fund this. With 10 sessions per year that $700 a year.
4. Ensure decision makers interpret information correctly e.g. There is Fatigue, Chronic Fatigue AND Chronic Fatigue Syndrome (ME/CFS) which are three different conditions and only one of them is lifelong and complex, the first two are temporary and treatable. My condition was referred to as Chronic Fatigue in my decision letter. ME/CFS has for many years carried much stigma but that doesn’t change the fact that it is a very real and disabling condition.

• Provide staff with extensive training in excellent customer service, empathy and genuinely being able to care and help people with respect and dignity. If they can’t be trained, they are not the right people for the job.

• KISS - keep it succinctly simple - people don’t want to see all these references to legislation and guidelines in their decision letters. There is no need for all the legal jargon. Just have the letters say what treatment options you need to explore or what you can provide to get approved. Provide simple, easy to follow guidelines with a simplified website, easy application process with possibly an interviewer to ask questions.

AND trust the medical experts of the applicant.

• Simplify funding and support - abolish price gouging. I should be able to find cleaners and carers, receive an invoice and pay it without anyone knowing whether I have NDIS funding or not. I have seen so many providers/services that have a much higher charge for NDIS participants. Why?? This needs to stop to avoid being overcharged and to maintain people’s privacy. Not to mention the number of organisations that are charging extra to do reports to apply for NDIS and the expectation is you use their services if you are approved. It’s just exploitation. Of note - GPs don’t charge extra or get any incentive to write or provide evidence for NDIS and it’s a time-consuming task.