NDIS submission: Independent assessment

Please accept this correspondence as my submission to the NDIS, regarding independent assessments for access and ongoing eligibility for the scheme. I don’t have anything but my phone to write this submission on, including word document software, and can’t access my public library due to my Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) related energy limitations and my covid vulnerabilities. My upload of txt submission was not successful.

I’m writing to oppose the independent assessments.

I was previously a health care professional, but this did not translate to an understanding of the complexity of my disablement until my lived experience, nor the specifics related to an individual. There truly is no substitute for the expertise of a specialist who has the benefit of observing over multiple appointments.

At various points in my life, I have undergone assessments, for example when applying for ‘Total and Permanent Disability’ insurance, with a health care professional unknown to me. Despite their use of standardised tests and similar assessment duration as proposed with the NDIS assessments, their final reports did not accurately represent my disability. One doctor wrote “I did not look like I was suffering from a fatigue disorder” which illustrates the gross misunderstanding of an invisible, fluctuating condition like ME/CFS amongst the health care practitioner community. I had no chance to appeal his opinion, despite him having never met me previously, no expertise in my condition specifically and spending a mere couple of hours with me. The research on my condition is also only in its infancy, and it’s concerning that lack of evidence-based understanding of a condition and the resulting education, or lack thereof, may preclude an applicant as a result.

It really makes an applicant vulnerable to their ability to articulate their disability, which is obviously problematic for many people with a disability. The highly stressful environment the scrutiny many impose (in having to justify their access) may pose a barrier to accurate representation of a person’s disability. Not every person with a disability has a capable advocate to assist them with the application process.

My personal experience with NDIS access, despite myself and my relative being capable of communicating the specifics of my disablement and needs, was the first plan had many inaccuracies. I assume this to be human error on the part of the NDIA access assessor, which a ‘one-off’ assessment is not immune from.

There truly is no substitute for continuity of care that an applicant’s treating practitioners have, who can observe over a long period of time.

On the point of having a fluctuating condition, if an applicant is in a high-functioning phase, even

If this just happens to be a “good day,” I’m concerned that a one-off appointment does not represent an accurate portrayal of the overall disability or a “bad day.”

I also note the focus is to be on the capability during assessments, however, if an applicant is not able to frame their needs for specific supports and disablement, vital help may be overlooked.

If the purpose of independent assessments is to provide financial assistance regarding these access assessments, there are alternative solutions: appropriate funding to being assessed by a health care professional of the applicants choice, in the relevant field. I had my OT assessment, funded by a disability service provider, and perhaps what is needed is better communication from NDIS representatives, about such options available to applicants, at the point of their initial request.

Thank you for considering my lived experience of disability and access assessments to inform your final decision.