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Thursday, 4 April 2019
Page: 14920

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Dear Mrs Wicks

Thank you for your email dated 7 December 2018 concerning a response to the petition PN0389 requesting that the Australian Government work with Emerge Australia to support people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) with access to the National Disability Insurance Scheme.

The National Disability Insurance Scheme (ND1S) provides supports for people who are accepted as participants and meet the disability criteria under section 24 of the National Disability Insurance Scheme Act 2013 (NDIA Act).

In order for a person to be assessed as meeting the disability access requirements to the NDIS, the NDIS delegate needs to be satisfied on the information provided that the individual meets the following criteria:

a) has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments or to one or more impairments attributable to a psychiatric condition;

b) that the impairment or impairments are, or are likely to be, permanent;

c) that the impairment/impairments result in substantially reduced functional capacity to undertake, or psychosocial functioning in undertaking, one or more of the following activities: Communication, Social interaction, Learning, Mobility, Self-care, Self-management;

d) the impairment or impairments affect the person's capacity for social and economic participation; and

e) the person is likely to require support under the NDIS for the person's lifetime.

The NO1A acknowledges that there is conflicting evidence regarding the permanency and best management of ME/CFS. Currently, the NDIA continues to use the

Australian Guidelines on diagnosis and management. Based on these guidelines, it cannot he considered that every person diagnosed with ME/CFS will go on to have a permanent and lifelong impairment. It would, therefore, not he accurate or appropriate to include ME/CFS on List B.

List B conditions are, by the nature of their diagnosis, always considered to be permanent and lifelong conditions but have varying impacts upon each individual. The available research on ME/CFS indicates that due to the natural progression of the condition, a great majority of individuals recover without intervention over weeks or months.

The NDIS is not involved in advising or developing clinical guidelines. 1 understand that the National Health and Medical Research Council's ME/CFS Advisory Committee provides advice to the organisation's Chief Executive Officer on current needs for research on ME/CFS, and clinical guidance on diagnosis and treatment. The Advisory Committee met throughout 2018 and will submit a draft report following a forthcoming round of public consultation.

Please note that there is no requirement that a condition, including ME/CFS, be listed on any of the lists of conditions in order for eligibility to the NDIS to be determined. The lists are in place only to assist delegates when processing the high number of applications to the NDIS by highlighting some of the more common conditions that are considered to always meet certain aspects of the NDIS Act Eligibility Criteria. The NDIS has been in contact with Emerge Australia for discussions on how the NDIS may support persons with ME/CF.

Thank you for raising this matter with me.

Yours sincerely

from the Minister for Families and Social Services, Mr Fletcher(Petition No. PN0389)