Royal Commission into Victoria’s Mental Health System update

On 26 March 2019, the Victorian Government launched a Royal Commission into Victoria’s Mental Health System – the first of its kind in Australia.

Amaze, Yellow Ladybugs and Different Journeys have collaborated to ensure autistic voices and needs are represented in this important investigation.

The aim of the Royal Commission is to provide the community with a clear set of actions that will change Victoria’s mental health system and enable Victorians to experience their best mental health.

 

Establishing the Terms of Reference

More than 8,000 community contributions were received to shape the Terms of Reference – these are the guidelines that tell the Royal Commission what areas it needs to focus its investigations on.

Victorians asked for the Royal Commission to investigate ways to prevent mental illness and intervene earlier, to provide better access to high-quality and safe mental health services for people who need them, and to connect mental health services with other health and social services.

The final Terms of Reference included:

1. How to most effectively prevent mental illness and suicide, and support people to recover from mental illness, early in life, early in illness and early in episode.
2. How to deliver the best mental health outcomes and improve access to and the navigation of Victoria’s mental health system for people of all ages.
3. How to best support the needs of family members and carers of people living with mental illness.
4. How to improve mental health outcomes, taking into account best practice and person-centred treatment and care models, for those in the Victorian community, especially those at greater risk of experiencing poor mental health.
5. How to best support those in the Victorian community who are living with both mental illness and problematic alcohol and drug use, including through evidence-based harm minimisation approaches.

 

The Amaze, Yellow Ladybugs and Different Journeys submission

There are approximately 55,000 autistic people in Victoria, with many more undiagnosed. Every individual experiences autism differently – but research and consultation with our communities reveals an alarming commonality within the autism community: poor mental health.

To ensure the voices, concerns and ambitions of autistic people and their supporters are represented, Amaze, Yellow Ladybugs and Different Journeys collaborated to develop a robust submission to the Royal Commission.

Informed by academic research, more than 300 responses to our online community consultation survey, and a roundtable discussion with 11 mental health and autism professionals and researchers, the submission clearly demonstrates the urgent need for greater mental health supports for autistic people.

Community consultation

Amaze, Yellow Ladybugs and Different Journeys created an online community consultation survey asking about the experiences of autistic people and their families and carers with the mental health system. This survey was designed to be autism-friendly, and was co-designed with autistic people.

293 autistic people and their family members and carers contributed to the consultation survey. They told us about their mental health diagnosis experiences, how they access and use supports, and shared ideas for how the mental health system could be improved to support autistic people.

Mental Health Professional Round Table

Amaze hosted a round table discussion for 11 mental health practitioners and researchers with expertise working with autistic and neurodiverse people. The enabled experts to explore and discuss the ways the Victorian mental health system could better support the needs of autistic people in the future.

Research literature

The findings of contemporary Australian and international peer-reviewed evidence were also included in the submission.

 

What did the consultation reveal?

The extensive consultation and research explored many barriers faced by autistic people in accessing and navigating Victoria’s mental health system, including:

• Misdiagnosis
• Difficulties in navigating the mental health system
• Mental health practitioners’ inadequate knowledge of autism
• Lack of appropriate services, and prohibitive costs associated with services
• Lack of mental health supports for carers of autistic people with mental health conditions.

We found that knowledge about autism and mental health is increasing within the mental health sector, but it’s not complete or consistent across the sector. Some of the other barriers mental health professionals encounter in supporting autistic people are: a lack of autism training; no easily available information and guidance for supporting autistic people with mental health conditions; and an unsupportive mental health system.

 

What were our recommendations to the Royal Commission?

When autistic people are offered appropriate and sensitive supports, it improves wellbeing and community participation outcomes for those individuals, and creates a culture of inclusion and acceptance in our mental health system.

The Amaze, Yellow Ladybugs and Different Journeys submission makes four practical, community-led recommendations to develop specific, specialised mental health supports for autistic people, to create a more autism-friendly system.

 

Recommendation 1

A service model be developed that sets out how the mental health system can provide appropriate support to autistic people. The service model should:

• be underpinned by the notion that autistic people must have access to continuous care throughout their lives, with key aspects of this care including a multi-disciplinary team of specialists and case management
• ensure that information specifically related to autism and mental health – including where to access services and supports, and which practitioners specialise in this area – is made accessible to health practitioners, as well as the general public
• ensure that professionals across all sectors – including mental health, health, disability, justice and education – are aware of, and have access to, appropriate training in autism and mental health
• ensure that carers of autistic people are provided with appropriate mental health support.

Recommendation 2

A clinical practice model be developed to support mental health in autistic people generally, and for adolescents and adults more specifically.

Recommendation 3

The Victorian Government supports research into autism and mental health by:

• establishing a mental health and autism research fund
• funding a mental health and autism summit, to bring together mental health and autism researchers, practitioners and consumer representatives to identify research priorities, capacity building requirements and opportunities for service collaboration.

Recommendation 4 

The Victorian Government works towards eliminating restrictive practices across all service systems and sectors in Victoria, including the mental health system, and advocates for a nationally consistent framework for eliminating restrictive practices.

 

Next steps

Submissions closed on 5 July 2019, and the Royal Commission will review each submission as part of the process. These will be published online in the coming months at https://rcvmhs.vic.gov.au. Amaze will update our community when our full submission is publicly available.

The Royal Commission will hold public hearings from 2 -26 July 2019 to hear evidence about people’s lived experience of mental illness. In August–September, targeted round table events will be held to enable further input from the community.

The Commission will provide an interim report to the Victorian Government in November 2019, and a final report by October 2020.

The Victorian Government has already committed to implementing every recommendation from the Royal Commission.