The NDIS legislation sets out access criteria that are not diagnosis based. Instead, people are able to access the NDIS if they have a lifelong condition that significantly reduces their capacity to live an ordinary life. In theory, and as set out in law, there is nothing preventing people who have ME/CFS that significantly impacts their day-to-day function from successfully applying for and receiving the NDIS.
It can be difficult to balance hope for improvement with the requirement to use the language of disability and permanence when applying for the NDIS. It is important to note that patients are only eligible for the NDIS if they, and their doctor, believe their condition to be permanent.
Despite the fact that there is no reason that people with ME/CFS should be excluded from the scheme, we know that, in reality, many people with ME/CFS do experience some difficulty accessing the NDIS. People may be rejected on the basis that their condition is not lifelong (the need for a disability to be 'permanent'), or that their functional capacities do not meet the minimum criteria of significant impairment. There are also sometimes issues due to the fluctuating nature of the condition that some people experience and, on occasion, assessors have rejected people on the basis that the condition has not been fully treated. Finally, we know that a number of people with ME/CFS have been told that ‘chronic fatigue syndrome’ is a health issue and not a disability, or that ME/CFS is 'not on the list'. Other disabilities, including mental health conditions and episodic illnesses, are also facing these challenges.
None of these things should be grounds for outright refusal, and we are seeing a number of positive changes as the scheme moves out of its initial set-up phase.
Rejections can be disheartening, especially as people with ME/CFS have often had previous negative experiences where their illness has been belittled or disbelieved. It is important to know before you begin the process that applying for the NDIS might take up a lot of emotional energy. However, as long as you meet the ‘significant functional impairment criteria’, you have had the disease for a significant period of time, and you can be well organised about your application, people with ME/CFS absolutely can (and do) successfully access the scheme.