JOINT STANDING COMMITTEE ON THE NDIS
Thank you for the opportunity to comment on the implementation of NDIS.
Emerge Australia is a not-for-profit member based organisation that has been supporting people with ME/CFS Myalgic Encepalomyelitis/Chronic Fatigue Syndrome for over 30 years. We welcome the introduction of NDIS as an opportunity to provide improved support to patients that are bed-bound and housebound – an estimated 25% of sufferers.
About ME/CFS: Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is: a complex, multi-system, neuroimmune condition with a multitude of symptoms related to the dysfunction of the brain, the gastro-intestinal system, the immune system, endocrine and cardiac systems. ME has been classified as a neurological disorder by the World Health Organisation since 1969.
The prevalence of ME/CFS is a somewhat contentious topic due to the lack of a biomarker based diagnostic test but recent studies have estimated the prevalence of ME/CFS as between 0.4% to 2.6% of the population in the UK and the US. It is therefore thought that ME/CFS affects between 96,000 and 624,000 Australians. Approximately 25% of sufferers are housebound or bedbound.
It is unfortunate that many of the people with ME/CFS applying for NDIS are experiencing a range of difficulties with the scheme. We have reports from our members that they have had NDIS claims rejected as being non-permanent and not fully treated, despite medical reports indicating that their condition is both permanent, and fully treated and stabilised. It is of significant concern to us that we have examples of non-medical staff overriding medical opinion.
Recognition of ME/CFS as a serious neurological disorder affecting multiple body systems:
There is a pervasive lack of understanding of the seriousness and persistence of the condition by the assessors. In particular the experience of applicants is that there is a reluctance to accept that in the most unwell cohort of people with ME/CFS, there is a highly significant level of disability and that the illness is physical rather than psychological in origin.
The condition is not a named condition in the NDIS list B – further contributing to challenges for people being accepted.
Emerge Australia Inc. ABN 22 385 438 041
Understanding of the term “fully treated” in the context of ME/CFS: There is an erroneous belief of assessors that people with the condition are not “fully treated” if they have not participated in Graded Exercise Therapy and Cognitive Behavioural Therapy. The approval of these therapies in the UK was founded on research that has proven to be highly flawed and is discredited. It is no longer recommended as a therapy in the USA by the Centres for Disease Control and Prevention.
A hallmark of the illness is post-exertional malaise, and we are particularly concerned that a therapy we believe has the potential to be harmful to patients has been used as grounds for rejection by some assessors.
A patient’s right to decline a particular therapy: One patient was refused acceptance on the basis that she had declined a particular medication which she believed might harm her condition. We note that it is a right of patients to refuse treatments.
Fluctuation in illness as a barrier to receiving support The patient previously mentioned was subsequently rejected on review on separate grounds – that her condition fluctuated from moderately unwell to very unwell.
The onerous nature of the appeal process: For people with ME/CFS who are extremely unwell and very low on energy (one patient who was initially rejected described that she has difficulty turning herself over in bed some days), the appeal process is very daunting.
Patient choice with regards to spending: The experience of a young patient who is in nursing home care was that when she was accepted for NDIS, the spending was very prescriptive and inappropriate. She was given a choice of service provider, but not given choice in how she could spend her money. For example she was allocated funding for a shower chair which she is too unwell to use, but denied funds for the requested bed bath equipment.
RECOMMENDATIONS
- Recognition by NDIS of ME/CFS as a serious and disabling condition causing extensive disadvantage to sufferers.
- Inclusion of ME/CFS Myalgic Encepalomyelitis/Chronic Fatigue Syndrome in list B of NDIS approved conditions.
- Provide assessors and other NDIS staff with up-to-date information about appropriate treatment and support for people with ME/CFS and advice regarding the physiological nature of the condition, the key symptoms and appropriate treatment and support. (Emerge Australia would be happy to provide such information).
Emerge Australia Inc. ABN 22 385 438 041
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That NDIS acknowledges that there is no known or recommended efficacious treatment that will address the pathophysiology of ME/CFS and that current therapies provide only symptomatic relief.
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That assessors and other NDIS staff are advised of the potential harm of Graded Exercise Therapy and directed that this is not a treatment requirement.
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That a patient’s decision to decline a particular treatment be respected and that this does not in any way prejudice their case.
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That there is improved consistency and fairness in the assessment process and that the onerous nature of the appeal process be reviewed.
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That patients are enabled to reasonably decide how their NDIS allocation can be spent to best support them and their needs.
We thank you for the opportunity to make this submission and would welcome the opportunity for further discussion.
Yours faithfully,
Sally Missing
President
Emerge Australia
Emerge Australia Inc. ABN 22 385 438 041