Submission to the Joint Standing Committee on the National Disability Insurance Scheme re: NDIS Independent Assessments
31 March 2021
Note: | consent to this submission being published. However, due to privacy purposes, please withhold my name, signature and contact details.
This submission is in response to the Inquiry into Independent Assessments under the National Disability Insurance Scheme by the Joint Standing Committee on the NDIS. I have been living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for nearly five years. I am the founder of the Brisbane ME/Chronic Fatigue Syndrome Support group and a member of both Emerge Australia Inc, Queenslanders With Disability Network (QDN), and Women With Disabilities Australia. Prior to falling ill with ME/CFS, I worked as an executive director [ie “° was highly active as a volunteer trip organiser/leader in the cycling and bushwalking fields. I share the concerns expressed by QDN regarding the “independent assessment” and hereby provide my additional concerns specifically regarding ME/CFS.
About ME/CES
ME/CFS is a severe, highly debilitating, complex, chronic illness that affects most bodily systems, particularly the nervous, immune, cardiac, gastrointestinal and endocrine systems. (Johnston, Staines & Marshall-Gradisnik, 2016). ME/CFS is conservatively estimated to affect up to 1.0% of the Australian population, (Carruthers & van de Sande, 2012; Myalgic Encephalomyelitis Chronic Fatigue Syndrome Advisory Committee, 2019), meaning approximately 250,000 Australian residents live with (ME/CFS). 25% are housebound or bedbound. (Institute of Medicine, 2015, p. 2). Even ‘mild’ levels of ME/CFS can result in loss of at least SO per cent of normal function. (Carruthers et al., 2011, p. 329) As there is no cure for ME/CFS, only about 6 percent of patients succeed in reaching restoration to their full pre-morbid health and function. (Carruthers & van de Sande, 2012, p. 1)
ME/CES-specific concerns
- ME/CFS is a highly complex illness that affects multiple bodily systems. Yet few medical practitioners, including less than 50% of doctors receive training about ME/CFS.(Myalgic Encephalomyelitis Chronic Fatigue Syndrome Advisory Committee, 2019, p. 12). Consequently, it is likely that an independent assessor, similar to many Australian medical practitioners, will misinterpret ME/CFS symptoms and current management plans. Moreover, assessors will likely make decisions that worsen ME/CFS patient’s health, such as requiring they undertake Graded Exercise Therapy / Cognitive Behavioural Therapy (GET/CBT), despite the fact that:
e Both the USA’s Centers for Disease Control and the 2020 draft of the UK’s NICE updated guidelines have removed GET/CBT as a recommended treatment
Independent Assessment
Submission 347 e About 100 highly renowned ME/CFS researchers and clinicians, including Australia’s own National Centre for Neuroimmunology and Emerging Diseases directors, had co-signed a letter to The Lancet objecting to GET/CBT as an ME/CFS treatment due to its highly harmful patient impacts. (Tuller, 2018)
Even a few independent assessments are likely to misread symptoms due to the highly fluctuating and delayed nature of ME/CFS symptoms, especially ME/CFS’ hallmark symptom known as ’post-exertional malaise’ (PEM). (Carruthers & van de Sande, 2005; Carruthers et al., 2011) Assessments conducted at a few points in time may miss or misread the ME/CFS patient’s delayed symptoms or changing severity levels.
Similar to many other people with disabilities, many patients living with ME/CFS suffer from anxiety as a symptom of ME/CFS.(Carruthers & van de Sande, 2012) Being assessed by a stranger, rather than one’s trusted doctor, will likely exacerbate this anxiety and thereby worsen their health. The NDIA currently relies upon CFS clinical guidelines (Larkins & Molesworth, 2002) that are outdated by nearly 20 years and furthermore, uses a highly narrow and incorrect interpretation of CFS symptoms. (Hallmann, 2018) I anticipate that independent assessors will likely use similar incorrect, out-of-date guidelines, not the ME International Consensus Criteria (Carruthers & van de Sande, 2012) or the ME Canadian Consensus Criteria (Carruthers & van de Sande, 2005) which are used by adequately trained, experienced and knowledgeable clinicians of ME/CFS. Consequently, many ME/CFS patients will continue to miss out on receiving vital NDIS supports or receive inappropriate and/or inadequate supports.
High costs of missing out on the NDIS
Economic Costs
Missing out on vital and relevant supports from the NDIS due to the errors of independent assessments will prove extremely costly to both ME/CFS patients and the wider Australian community. Many ME/CFS patients live below the poverty line. According to a recent ME/CFS Australian patient survey, the majority of survey respondents receive no income, not even Centrelink. (Emerge Australia, 2018, p. 36) Furthermore, already the lack of adequate ME/CFS diagnosis and treatment costs the Australian economy about $14.5 billion/annum, according to research by the National Centre for Neuroimmunology and Emerging Diseases. (Close et al., 2020)
Costs of early deaths due to cancer, heart disease or suicide
Missiong out on appropriate NDIS support will continue to worsen ME/CFS patients’ health. Already patients with ME/CFS have been found to die of heart disease, cancer or suicide at far younger ages than the general population. (McManimen et al., 2016).
My key asks
| ask that the federal government:
- not change the NDIS Act to make these “independent assessments” compulsory for all new and existing NDIS participants
- postpone the introduction of “independent assessments” until people with disability are extensively, meaningfully and sufficiently consulted and have their concerns addressed.
References
carruthers, B. M., & van de Sande, M. (2012). Myalgic Encephalomyelitis - Adult and Paediatic: International Consensus Primer for Medical Practitioners. Retrieved from Calgary, Alberta, Canada: [https://www.nhmrc.gov.au/file/10011/download?token=Itvi3mns]
carruthers, B. M., & van de Sande, M.|. (2005). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guide for Medical Practitioners - Overview of the Canadian Consensus Document. Retrieved from Carlgary, Alberta, Canada: [https://sacfs.asn.au/download/consensus overview me cfs.pdf]
carruthers, B. M., van de Sande, M |., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., .. . Stevens, S. (2011). Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, x270(4), 327-338. doi:https://doi.org/10.1111/j.1365-2796.2011.02428.x
close, S., Marshall-Gradisnik, S., Byrnes, J., Smith, P., Nghiem, S., & Staines, D. (2020). The Economic Impacts ofx20of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in an Australian Cohort. Frontiers in Public Health, x208(420). doi:https://doi.org/10.3389/fpubh.2020.00420
emerge australia. (2018). Health and Wellbeing Survey of Australians with ME/CFS: Report of key findings. x20Retrieved from Prahran, VIC:
hallmann, G. (2018). ME/CFS: and the disability hurdle. Paper presented at the CFS/ME International Conference 2018, crowne Plaza, Surfers Paradise, Qld. [https://www.academia.edu/37924491/ME_CFS_NDIS_and_the_Disability_Hurdle] institute of medicine. (2015). Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining anx20Illness. Washington, DC: The National Academies Press. johnston, S. C., Staines, D. R., & Marshall-Gradisnik, S. M. (2016). Epidemiological characteristics ofx20chronic fatigue syndrome/myalgic encephalomyelitis in Australian patients. Clin Epidemiol, x208, 97-107. doi:https://doi.org/10.2147/clep.S96797 larkins, r. g., & molesworth, s. r. (2002). Chronic fatigue syndrome clinical practice guidelines. Medical Journalx20of Australia, 177(1). x20Retrieved from https://www.mija.com.au/journal/2002/177/1/chronic-fatigue-syndrome-clinical-practice-guidelines
mcmanimen, s. l., devendorf, a. r., brown, A. A., Moore, B. C., moore, j. h., & Jason, L. A. (2016). Mortalityinx20patients with myalgic encephalomyelitis and chronic fatigue syndrome. Fatigue: Biomedicine, HHealth & Behavior, x204(4), 195-207. doi:https://doi.org/10.1080/21641846.2016.1236588
myalgic encephalitis Chronic Fatigue Syndrome Advisory Committee.(2019). x20Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee Report to the NHMRC CEO. Canberra, ACT: national Health and Medical Research Council, Retrieved from [https://www.nhmrc.gov.au/about-us/publications/mecfs-advisory-committee-report-nhmrc-chiefexecutive-officer] tuller, d. (2018, june 19 2018). Trial By Error: An Open Letter To The Lancet, Two Years On. Retrievedx20from[https://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/]