Tue Dec 12

More than mental illness. How the NDIS review could help people with psychosocial disability

Written by Jennifer Smith-Merry, Director, Centre for Disability Research and Policy, University of Sydney

The review ^[1] into the National Disability Insurance Scheme (NDIS) has been released and it recommends some big changes. This is not a report that just moves the deck chairs – it changes the whole layout of the ship, including its approach to psychosocial disability ^[2].

The NDIS refers to mental illness as psychosocial disability ^[3] when it is severe and disabling. Clear definitions point out ^[4] psychosocial disability is not a diagnosis in itself. It has a functional impact and presents barriers to equality when someone with a mental health condition interacts with a social environment. It can affect their ability to work, learn, socialise or care for themselves.

The National Disability Insurance Agency (which administers the scheme) views it separately to cognitive disability and other specific conditions such as autism.

The mismatch between psychosocial disability ^[5] and key aspects of the NDIS have been raised over many years ^[6]. So will the review’s recommendations make a difference?

Who gets support?

There are 63,010 people in the NDIS with psychosocial disability ^[8], making up around 10% of participants. They are older – 83% are over 35 compared to 32% of other participants. They have half the employment rate of participants aged 15 to 64 (11% compared to 23%) and experience lower social and community engagement. They have different needs but, in the scheme’s ten years, have been largely offered the same supports.

The NDIS review ^[9] recommends “a new approach to NDIS supports for psychosocial disability, focused on personal recovery” and to develop mental health reforms to better support people with severe mental illness.

These include an early intervention pathway and requiring providers delivering psychosocial supports to be registered and comply with new standards. In line with other review recommendations, the review says all Australian governments should provide foundational supports and improve the interfaces between the NDIS and mental health systems.

Currently, many people with severe mental illness who apply for the NDIS do not get access. And programs they previously received support from ^[10] were defunded to fund the scheme.

One fundamental issue has been that NDIS access requires disability to be “permanent”. This is at odds with the “recovery” model ^[11], which strongly underpins Australian mental health policy. Recovery views mental illness as neither permanent nor static and that supports may therefore be more needed at some times than others.

Making the list

For many people permanent disability has been difficult to demonstrate. No mental illness-specific conditions were included on the list of conditions ^[12] “likely to meet access requirements” for the scheme. This has led to lower attempts to access the scheme ^[13].

The review proposes ^[14] assessment based on functional needs rather than diagnosis, doing away with access lists. This will remove inequity where people with psychosocial disability must work hard to prove permanent functional impairment, often through multiple attempts ^[15].

The review calls for navigators who are well trained in mental health needs and trauma. Shutterstock ^[16]

Experiences on the scheme

Those who do make it into the NDIS have rated their experience ^[17] of the scheme more poorly than others. Studies have highlighted stigma and disrespectful treatment ^[18] by staff and providers who do not understand psychosocial disability ^[19], which damages wellbeing ^[20].

The review says ^[21] participants should have access to a “navigator” who has expertise in psychosocial supports and is trauma-informed.

The review argues competencies in mental health (such as training) should be linked to the registration of providers offering psychosocial supports.

This registration requirement is the most contentious aspect of the review ^[22], with choice over providers – registered or not – viewed as key ^[23] to attaining participant choice and control.

Unregistered providers have been the choice for most scheme participants (including 87% with psychosocial disability ^[24]), with registration processes viewed as a burden on providers and offering little additional benefit to participants ^[25].

However, this is a failure of the registration model rather than registration per se. Understanding the role of people with disability as co-regulators of their own support ^[26] will be essential in getting registration right.

Foundational psychosocial support

The number of people entering the scheme over age 35, when most people are likely to be diagnosed with a serious mental illness at a much younger age (14–18 years old ^[27]), points to failures in support outside of the scheme.

It tells the stories of people with mental illness gradually losing access to formal and informal supports until their illness becomes disabling and they need support from the scheme.

The review repeatedly emphasises the need to improve the operation of supports outside of the scheme, considering that NDIS supports have the best outcomes when broader needs are also met. These “foundational supports” are widely supported by the mental health sector who call for ^[28] a strong, broad network of supports for people with psychosocial disability.

The NDIS’s current system is disconnected and has a support gap. NDIS Review, CC BY-SA ^[29]^[30]

A road to recovery

The review calls for recovery to be re-centred within the operation of the scheme, with increased independence as a desired outcome. Currently providers have no obligation to try to improve a person’s recovery.

People with psychosocial disability who entered the scheme prior to 2021 experienced an increase in social and community engagement of only 4%^[32]. Their rate of employment rate did not increase at all. The review’s focus on early intervention and recovery could change this.

All review recommendations are just that. It is now up to the government to enact reforms. In doing so it is important they put the needs and experiences of people with psychosocial disability front and centre .