Hana* has been rejected from the National Disability Insurance Scheme (NDIS) twice because her doctor has a policy of never saying a mental health condition is permanent.

Her doctor’s position was supposed to provide Hana hope about her future. However, Hana’s hope for the future rests on receiving recognition and support for her permanent disability.

The issue of eligibility for NDIS funding, for people with a mental health condition, is in large part because there is no single, agreed definition of the term psychosocial disability – a category for accessing support.

The importance of a definition

For Ms Terri Warner, PhD scholar at the ANU School of Medicine and Psychology and a participant in the NDIS, the definition of the term ‘psychosocial disability’ has created intrigue and confusion.

“According to the NDIS, everyone with a psychosocial disability has a mental health condition, but not everyone with a mental health condition has a psychosocial disability,” Ms Warner advised.

“The reality is more complex.  If someone tells you they have a psychosocial disability then they have a psychosocial disability, but that doesn’t mean they will be eligible for the NDIS.”

“On the flip side, there are those who don’t identify with the term but someone, somewhere has officially applied a label to them that they must now use in order to access the services they need,” Ms Warner said.

As someone who has navigated the system to access supports, Ms Warner has seen firsthand what works and what doesn’t.  Her thesis, which looks at individual and policy implications of the framing of mental health and disability in the NDIS, draws on the experiences of consumers with a mental health condition, carers, and people who work at the intersection of mental health and the NDIS.

Ms Warner explained, “Identifying, or being identified, as having psychosocial disability can have significant consequences, both in terms of eligibility for health and social support, but also in terms of how people see themselves, and are seen by others, particularly when the term means different things to different groups and in different contexts.”

“Policy decisions are being made on the assumption that the NDIS, health care providers, consumers and carers are on the same page. Put simply, that is not the case,” Ms Warner stated.

Codesign starts at phase zero

Instead of being defined by policymakers and their chosen stakeholders, Ms Warner would like to see equal decision-making power given to people with lived experience in these definitions as well the design of the services, so that adequate funding and appropriate supports are on offer.

“Policy creation should involve codesign with consumers at phase zero, not phase two or three when the foundational decisions have been made. This extends to research, where consumers and carers should be involved in deciding what should be researched and how that research is designed,” Ms Warner added.

“Another barrier within the psychosocial disability category of the NDIS is that the category often determines what supports someone will receive, which is not uncommon when accessing health care services, but it does create issues.”

“NDIS participants and advocates have described having supports denied or removed from their plans, or funding cut on the basis that their disability is psychosocial, and the decision maker feels that the support is not. This happens even when there is strong evidence that the person needs that support.”

“I believe if the NDIS was to base planning decisions on the person’s assessed need for support, rather than the category their primary disability is placed in, many of these problems would be resolved. This would also better align with the original intention of the NDIS, which was to provide individual, tailored packages of funding for non-mainstream disability support.”

*Hana is a pseudonym.

This article was first published by ANU School of Medicine and Psychology.