NDIA Accountability Project

Barriers to NDIS access for people with severe ME/CFS

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Submission to

the Community Affairs Legislation Committee for inquiry on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill 2024

ME/CFS Australia

is the peak body for the patient-led ME/CFS charities across Australia

Date: 17 May 2024

Introduction

ME/CFS Australia is grateful for the opportunity to provide this brief submission on the new draft legislation, NDIS Amendment (Getting the NDIS Back on Track No.1) Bill 2024, on behalf of our member charities and people living with ME/CFS.

Issue

For people with ME/CFS who are participants in the Scheme, the NDIS has been life changing and much appreciated. However, the vast majority of people with ME/CFS who experience severe physical and cognitive disability have been unable to access the Scheme. Access has not been equitable, accessible, or inclusive for many people with the most severe disabilities, especially when this occurs in the context of intersectional vulnerabilities.

The NDIS Act 2013 makes reference to the United Nation’s Convention on the Rights of Persons with Disabilities (CRPD). The CRPD contains multiple references to equity, access and inclusion, yet the 2013 Act has not resulted in a Scheme which fulfills these objectives. Despite the original and continuing intent that the Scheme should support those with the most severe disabilities, for many of those with ME/CFS, it is the actual severity of their disability that has excluded them from the access process.

When applications for access are made, lived experience indicates that, rather than supporting people whose need is greatest, the NDIS currently rejects some applicants on the grounds that if they have no current supports, they therefore do not meet the NDIS requirement of ‘needing supports across their lifetime’.

Even for those who have been successful in their access request, it is consistently reported that the process has been traumatic.

Declaring an intention to better address the purpose of the CRPD through the 2024 Amendment does not appear to mean that the Amendment contains a legislative imperative to address this urgent matter, where the 2013 Act has failed.

We look forward to foundational disability supports as a means of providing support to many people who are not served by the NDIS. However, foundational supports will not address the urgent needs of those whose disability is too severe, and intersectional vulnerabilities too complex, to allow access to the Scheme.

Request

We request consultations be held with those who have been unable to apply, or whose application has been unsuccessful, to consider how principles of equity, access and inclusion can be enshrined in the legislation that underpins the NDIS.

We acknowledge the challenge inherent in finding and consulting with people who have very severe disability combined with intersectional vulnerability, but without this the Scheme risks remaining a privilege rather than a support available to those most in need.

Background

Severity of disability and quality of life

The Australian Institute of Health and Welfare (AIHW) no longer collects or publishes data on ME/CFS. Historic AIHW publications indicate that the disability-adjusted life years (DALY) score for severe or profound ME/CFS is amongst the highest for any disabling conditions, with a DALY of 0.760. Many people with severe ME/CFS are homebound and those who are profoundly affected are bedbound.

Improving the quality of life is consistent with the intentions of the NDIS. A 2015 Danish study found that ME/CFS had by far the lowest health-related quality of life score compared with 21 major illnesses.1 Very poor health-related quality of life is an indication of the impact of functional impairments associated with ME/CFS.

Freedom of Information requests have uncovered very low numbers of NDIS participants with ME/CFS. Given the very high DALY scores and very low quality of life, the unmet need and associated suffering are at a level seldom found in Australia, especially for those people who have no informal supports and cannot afford to pay privately for support.

Intersectional vulnerability

While people with ME/CFS experience all forms of intersectional vulnerability, poverty is disproportionate. Few people with ME/CFS are in fulltime employment and those with severe or profound ME/CFS who are not financially supported by a partner or family rarely have income beyond government pensions, payments or allowances.

Women are disproportionately affected by ME/CFS. The 2013 Act contains a commitment to equity for women, yet many people experience the processes of the NDIS as biased against causes of disability more frequently experienced by women. This includes men affected by these causes of disability.

Early intervention

The NDIS currently requires people with ME/CFS to have experienced five years of illness as a precondition of determining permanency. The paediatric guidelines suggest that with appropriate management and supports children have a higher likelihood of recovering some, or even all, of their function.2 The five-year barrier is undermining the purpose and potential effectiveness of NDIS-supported Early Intervention for ME/CFS.

Health system barriers

Lack of equity, access and inclusion in the NDIS is inextricably linked to lack of equity, access and inclusion in the health system.

People who are homebound and unable to attend face-to-face appointments do not even have access to telehealth, due to the barrier of the annual face-to-face requirement for MBS telehealth eligibility. Without access to health practitioners to complete an Access Request and write reports, the NDS becomes completely inaccessible. This affects many of the most disabled people in Australia. Unpublished figures from the Australian Bureau of Statistics indicate that in 2018, an estimated 600,000 people with disabilities rarely left their home. The majority of these people were under the age of 65.

For those who are able to attend health consultations, their health practitioners have no current Australian clinical guidelines for ME/CFS to which to refer. This undermines understanding of the condition and the potential safety or harm of different approaches to treatment and management. Lived experience consistently indicates that staff of the NDIS rely on outdated clical guidance, with access to the Scheme blocked for people who have not undertaken harmful and ineffective therapies. This is occurring irrespective of the policies of the NDIA regarding clinical guidance sources for ME/CFS.

For people who already have a severe disability, the prospect of becoming even more disabled due to a harmful therapy adds to the trauma of applying for access. The need to protect the functional capacity they currently have can cause people to avoid seeking access, regardless of the extent and urgency of their need for supports.

Further consultation

ME/CFS Australia would welcome the opportunity to engage with further consultation regarding the proposed Amendment, associated Rules and foundational supports.