The National Disability Insurance Scheme (NDIS) aims to give people with disabilities (and their carers) choice and control over the services and support they receive but many people living with ME/CFS face significant challenges gaining access to the scheme and receiving adequate funding.

Anecdotal evidence suggests many people with ME/CFS are rejected from the NDIS or Disability Support Pension (DSP) because their condition was considered temporary and treatable. However, many gain access on appeal. This apparent pattern of rejection followed by a successful appeal suggests that ME/CFS is poorly understood by assessors. 

Improving assessment accuracy is critical to reduce the number of incorrect first round assessment decisions and subsequent assessment rounds.

Improving accuracy would improve timely access to the support people disabled by ME/CFS need, while reducing operating costs sustained through the appeals process.

In our recently released report State of the Nation: Because people with ME/CFS matter, Emerge Australia recommends the National Disability Insurance Agency (NDIA) and Centrelink implement three key actions to improve assessment accuracy, detailed below.

Develop appropriate ME/CFS assessment guidelines for NDIS and Centrelink 

In their 2019 report, the committee advising the NHMRC summarised advocacy submissions made to the NDIA about ME/CFS [1]. Proposed recommendations advocated for recognition of ME/CFS as a serious, debilitating condition, for ME/CFS to be listed on the NDIS under list B: neurological disorders, and for collaboration with clinical experts and the ME/CFS community to develop assessment guidelines to support assessors in their role. Just as many medical practitioners face challenges providing appropriate care to their patients due to out-of-date clinical guidelines. NDIA assessment staff similarly lack access to information to accurately assess NDIS clients with ME/CFS.

Anecdotal evidence suggests many people with ME/CFS are rejected from the NDIS or Disability Support Pension (DSP) because their condition was considered temporary and treatable. However, many gain access on appeal. This apparent pattern of rejection followed by a successful appeal suggests that ME/CFS is poorly understood by assessors. 

Tailored guidelines should be developed to provide assessors with accurate information about the fluctuating nature and permanency of ME/CFS for most patients. Guidance would also help build understanding of the disabling nature of symptoms and the delayed response nature of post-exertional malaise. Emerge Australia would welcome the opportunity to collaborate on the development of such guidelines with the National Disability Insurance Agency (NDIA), Centrelink, the ME/CFS community and clinical experts.

Recognise ME/CFS as a neurological condition under List B

Many disabling conditions are specifically named under List A or List B of the NDIS operational guidelines to provide guidance to assessors. At present, the NDIS operational guidelines do not include any specific reference to ME/CFS. It is likely the exclusion of ME/CFS from operational guidelines increases the probability of an inaccurate initial assessment.

In their report to the NHMRC, the Committee recommended ME/CFS is included on List B under neurological disorders. This is in line with the World Health Organization's classification of ME/CFS as a neurological disorder. List B pertains to permanent conditions for which functional capacity are variable and further assessment of functional capacity is generally required. 

Utilise ‘Link’ workers to support patients to navigate our health and social care systems including the NDIS and DSP

The United Kingdom’s National Health Service employs ‘link’ workers to support patients to navigate health and social care systems [2,3]. Emerge Australia advocates for link workers to similarly be funded in Australia to support people who face barriers to access the care they need. Such support from link workers is particularly important for people whose condition/s is poorly understood in medical and social care spheres [4].

Link workers can be funded and embedded within primary care services, to connect individuals to a range of relevant social and community resources and supports [5]. Link worker roles could also be funded within community organisations through PHN commissioning arrangements. Alternatively, a national link worker service for post-viral diseases could be established, enabling national consistency and quality with localised and community tailored delivery.   

For people living with ME/CFS, the process of applying for the NDIS and DSP and appealing inaccurate decisions comes with a significant cost to health and wellbeing. Navigating the application process can trigger post-exertional malaise, leading to a worsening of symptoms for days, weeks or even months.

Emerge Australia have a strong understanding of the health and social care landscape in Australia and are the leading source of trusted information for many ME/CFS patients. We are well-positioned to design and deliver a linking function to triage patients accessing our Telehealth Nurse Case Management service into the NDIS and other relevant services.

Read the report here - State of the Nation: Because people with ME/CFS matter

This is our time to remind all sitting members that people with ME/CFS matter.  The voices of all 250,000 Australians living with ME/CFS must to be heard.  Our votes count. 

The release of the State of the Nation report is our vehicle to action. 

Email your local Member of Parliament or Senator now, using our simple and easy-to-use online platform. In under 2 minutes you can send an email to your representative calling for change. It's as simple as entering your residential address, reviewing the content of the letter and pressing "send my email". Easy!

Take action now and contact your local MP or Senator

 

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References

1. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Advisory Committee. ‘Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Advisory Committee Report to the NHMRC Chief Executive Officer’ Australian Government (2019). Available at https://www.nhmrc.gov.au/about-us/publications/mecfs-advisory-committee-report-nhmrc-chief-executive-officer.

2. Social Prescribing, NHS, available at: www.england.nhs.uk/personalisedcare/social-prescribing/, accessed 5 February 2021.
3. E. Hazeldine, et al. ‘Link worker perspectives of early implementation of social prescribing: A ‘Researcher-in-Residence’ study’ Health Soc Care Community, 29 (2021).
4. S. Moffatt S, et al. ‘Link Worker social prescribing to improve health and well-being for people with long-term conditions: qualitative study of service user perceptions’ BMJ Open, 7 (2017).
5. K. Husk, et al. ‘What approaches to social prescribing work, for whom, and in what circumstances? A realist review’ Health Soc Care Community, 28 (2020).