Please Publish Anonymously

As a current NDIS participant, I am highly concerned about the proposed bill and for my future. While I recognise the need to ensure the scheme remains sustainable, I am concerned about the specific proposals, including that people need to exhaust ‘all appropriate treatment options’ first. I am also aware that there are many disabilities where this is already a requirement and as a result, it can be almost impossible for people to gain access for these despite genuine need. Rejection is occurring based on this, despite situations where medical evidence is provided to say the disability is permanent and that all appropriate treatment options have been exhausted.

One such disability is Myalgic Encephalomyelitis (ME/CFS) which I live with though I am not receiving NDIS support for. If the new bill passes as is, the stricter eligibility criteria and treatment requirements will make it even hard for people with conditions like mine to access the scheme, despite many desperately needing to.

It took me four years to initially gain access to the NDS. The process was exhausting, caused a great deal of distress, and I only managed it because I had another service helping me. NDIS gave me hope for my future, and now I fear it will be taken away again. I live with multiple disabilities that are not recognised, yet do not currently have the capacity to go through the process again which personally felt like having to fight my life the first few times.

Currently, I have been housebound for over ¾ of a year due to ME/CFS. It took me almost a year of trying to find a doctor who was able to diagnose me yet, many people wait 6 years or moreI am dependent on mobility aids and currently in the process of looking to purchase an electric wheelchair. Ironically, being on the NDIS for unrelated issues, also makes me ineligible for other government funding options for mobility aids. Id say that I don’t have much quality of life at all. Some days I can’t even get up to feed my pets, let alone myself.My NDIS plan is inadequate especially due to lack of flexibility in how it can be used and my physical disabilities being unrecognised, and I only survive because I have family support, but its taking a huge toll on their health and everyone’s mental health.

The proposal is especially problematic because for conditions like Myalgic Encephalomyelitis (ME/CFS), because, there are no recognised treatments or current guidelines in Australia. From experience I went through four doctors before I found someone who believed I was unwell, and was able to offer a diagnosis. It is extremely difficult to access care. Australian health authorities (AIHW) also state there is no cure for ME/CFS that the aim of treatment is to manage symptoms and help people maintain as much function as possibleii. Full recovery from this condition is considered rare, with an estimated 5% recovery rateiii I am choosing to refer to ‘treatments’ in quotations at times throughout this submission, because due to the lack of treatments, what is available might be more accurately referred to as potential ‘management’.

I’ve tried many ‘treatments’ to alleviate or manage my symptoms, mostly consisting of medication prescribed off label that is largely not evidence based, and I have had no increase in functional capacity. Medications for chronic conditions like this are also often not covered by the Pharmaceutical Benefits Scheme, due to the lack of research or

approved treatments, and costs can be extreme considering most people with ME/CFS are unable to work. I currently spend over $200 per month on medication as a health care card holder, and approximately another $100 on supplements. The cost could easily be more, and is for many people. This is not including the cost of private specialists. It is also important to consider that a disabled person in a relationship is usually ineligible for the dsp. That people with chronic conditions might not have access to certain options that are more expensive or deemed inappropriate or experimental. Or not available due to location. Access to treatments is not equal, and no one should be disadvantaged further due to finance, or other barriers.

Despite everything, I consider myself one of the ‘luckier’ ones with this condition. My condition has a severe impact, but there are people with severe or very severe ME/CFS who are currently completely bedbound in the dark 24/7, and reliant on support to stay alive. Too sick to prove their disability. Too sick to fight for support. People have had to turn to crowd funding for mobility aids or to pay private support workers. There are families who are burnt out and drowning. People are suffering and in dire need, and no one is listening. The process for accessing support is already extremely difficult for this condition, and if you increase the hoops people have to jump through, there will be real consequences.

In summary, these proposed changes are likely to further disadvantage anyone living with conditions such as Myalgic Encephalomyelitis.

Why the ‘all appropriate treatment requirement is unfair

There are conditions without approved treatments. It is impossible to exhaust all ‘treatments’, when they don’t exist. Especially if the only options are off label and doctors are hesitant to try them.

People shouldn’t be further disadvantaged due to lack of finances or access barriers. ‘Treatments’ can cost hundreds, if not thousands of dollars. That’s often impossible for someone who can’t work. If someone is in a regional area, there also may not be the same access to care.

The NDIA is not a medical body. This makes it inappropriate to make decisions about what medical treatments someone has tried. Especially if the NDIA will not state in writing which treatments they think someone should have tried first, or what would be considered exhaustive. How are participants and their doctors meant to know which treatments the NDIA expect them to try or what information is need to explain why certain options aren’t appropriate? People should be guided by their own medical professionals about what ‘treatment’ or management options are appropriate, and that needs to be considered in decision making. We should also all get a say on what is appropriate for our own bodies.

Lack of Capacity For people with an energy limiting condition, having to seek out all possible treatments takes a toll on peoples health. Some people are too unwell to do this, especially if they are bedbound. Attempting to do that with ME/CFS, can cause people to become permanently worse.

Recommendations

• Remove the requirement to have exhausted ‘all appropriate treatment’, and instead be guided by a person’s medical specialists and evidence

• If it is determined that all appropriate treatments have not been trailed, then the NDIA should explain in writing why they think this, and what would be considered exhaustive.

• Improve understanding and increase access for chronic and disabling conditions like ME/CFS, which the NDIS does not currently adequately recognise or support

• Decisions should consider the person, rather than be generalisations. Considering factors like; finances, location, individual circumstances, medical evidence, and capacity.

• Consider when creating plans, that it is common for someone to have more than one disability, and that when there are multiple disabilities, it should be recognised that all disabilities impact each other.

i National Health and Medical Research Council. (2019). Myalgic encephalomyelitis/chronic fatigue syndrome: Advisory Committee report to the Chief Executive Officer. Australian Government.

ii Australian Institute of Health and Welfare. (2025). Myalgic encephalomyelitis / chronic fatigue syndrome in Australia. Australian Government. https://www.aihw.gov.au/reports/neurological-conditions/chronic-fatigue-syndrome-in-australia

iii Devendorf, A. R., Jackson, C. T., Sunnquist, M., & Jason, L. A. (2017). Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Challenges to consider in research and practice. Journal of Health Psychology, 24(10), 1412–1424. https://doi.org/10.1177/1359105317740615