Summary paper - NDIS engagement for people with eating disorders

The National Disability Insurance Scheme (NDIS) has been operational in Australia for ten years. In that time, the Scheme has rolled out from initial trial sites to now cover the entire country. It supports over 500,000 people with disabilities through individual funding packages aimed at improving quality of life through increased participation in economic, social, civic and community life (National Disability Insurance Agency, 2022a).

Eligibility for NDIS access is met according to three key criteria: age, residency and disability. If a person under 65 years of age resides in Australia and meets the disability requirements (outlined on page 4), they may access the NDIS and, through it, funded supports according to an individually tailored plan. A wide range of diagnostic categories may be covered by the disability requirements, as the policy intent is for the NDIS to meet people’s functional needs (National Disability Insurance Agency, 2021). There are, however, some diagnostic groups where eligibility is either less clear, or at least less well understood by those who assess requests for access. One such group is eating disorders.

Eating disorders are complex and serious mental health conditions, often with physical and functional consequences (Hay et al., 2017). While not all people with eating disorders will have a lifelong condition, and indeed recovery is possible for many, there remains a cohort of people whose eating disorder is longstanding and likely to persist across the remainder of their life (Kotilahti et al, 2020). Eating disorders have among the highest mortality rates of all mental health conditions; this is particularly the case for, but not limited to, anorexia nervosa (van Hoeken & Hoek, 2020). A recent rapid review of outcomes for people with eating disorders found that less than half of people in long-term follow up studies had achieved recovery (Miskovic-Wheatley et al, 2023). Recovery rates for anorexia nervosa ranged from 18-60%, for bulimia nervosa from 35-59%, and for binge eating disorder from 37-77%. Long term recovery rates for other eating disorders had limited data available.

It has been suggested that some people within this cohort ought to be considered eligible for the NDIS, and publicly available data from the NDIS shows that a small number of people with eating disorders do have NDIS access (National Disability Insurance Agency, 2023). Nevertheless, substantial anecdotal feedback from people with lived experience and the people who support them suggest that requests for NDIS access are frequently rejected on the basis that eating disorders are seen as ineligible.

An additional cohort of people with eating disorders who may be eligible for the NDIS are those who have an eating disorder and a primary disability of some other kind, such as Autism, Attention Deficit Hyperactivity Disorder (ADHD), Depression, Anxiety and more. However, the degree to which this group of service users are able to access and receive the care they need through the NDIS scheme remains unclear.

This paper seeks to address these gaps by examining the accessibility, engagement with, and suitability of the NDIS for two groups with living experience of eating disorders:

• People with a longstanding eating disorder as primary diagnosis, and;
• People with an eating disorder and a co-occurring condition.

This work has been guided by an oversight group comprising lived experience and clinical expertise, all with direct experience of engaging with the NDIS and supporting others who have or are seeking access to the Scheme. NEDC thanks them for their support in this work.

This work was funded by the Australian Government Department of Health and Aged Care (DoHAC).