Mental health and the NDIS: An open letter to the Prime Minister

In December 2013 IIR hosted the inaugural Integrating Mental Health into the National Disability Insurance Scheme (NDIS) conference. The event attracted over 140 attendees discussing the future direction of disability policy reform for people with mental illness in Australia. It became clear very early in the proceedings that the implementation of this major reform comes with a number of different and serious challenges that need to be addressed early in the reform process. In response to the discussions at the event, conference attendees published the following open letter to the Prime Minister, State and Territory Premiers and Chief Ministers to raise their concerns and offer their assistance in shaping the reform process.

Dear Prime Minister, Premiers and Chief Ministers,

The National Disability Insurance Scheme offers a once in a generation opportunity to ensure that some of the most vulnerable members of the Australian community finally get access to the support they need to live contributing lives. For this reason, we fully support the decision to include psychosocial disability associated with mental illness in the scheme.

The mental health sector stands ready to assist governments in realising the possibilities that the scheme presents to correct historic injustices and to meet Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities. Mental health consumers, carers, along with service providers and non-government organisations, must be at the centre of the scheme’s development if it is to meet community expectations.

For this reason, we call on governments to immediately establish formal processes to capture the expertise of the broader mental health sector in the design, implementation and evaluation of the NDIS. Such engagement is essential to the success of the scheme over the long term.

We acknowledge that implementing such a major initiative will take many years, and that all stakeholders are working hard to make the NDIS a reality. However, implementing a scheme without first getting the fundamental design features right may lock in a set of practices and principles that will not benefit the majority of people with serious mental illness and psychosocial disability. Similarly, waiting for lessons to emerge through the formal evaluation process risks delaying reforms to current policy that we already know are necessary, and indeed pressing.

Most importantly, the mental health sector needs clear and unequivocal assurance that access to services for mental health consumers and carers will not be reduced now or in the future as the NDIS is rolled out as an unintended consequence of the transfer of mental health programs to the scheme.

A well-designed NDIS would retain and enhance the positive features of existing community-based mental health services– including contemporary, best-practice approaches to service design and delivery which aim to foster recovery, a highly specialised and growing workforce, and maximum involvement by consumers and carers in decisions which affect them.

By offering governments our assistance in good faith, we hope to ensure that people receive care and support appropriate to their needs regardless of their path through the many systems (NDIS or otherwise) that someone with a mental illness may encounter over a lifetime.  Together, we can help build a scheme that meets this worthy goal.

Areas requiring attention

We urge governments, in close consultation with the broader mental health sector, to take active steps on several fronts. Without tangible progress on each front, we are concerned that the NDIS will not benefit people with serious mental illness or their carers, and may even jeopardise the positive work already carried out in the mental health sector.

Some of the issues below relate to the transition to new arrangements and are therefore of immediate concern. Other issues about scheme design are less urgent but are nonetheless already causing confusion and concern in the mental health sector.

We call on governments to:

• Accurately describe and enumerate the anticipated population of people with psychosocial disability associated with mental illness who have substantial impairments requiring an individualised package of support, including people with co-occurring disabilities
• Work with experts in the sector to describe in detail the kinds of support packages that someone with a psychosocial disability might access, and map these against programs and services that are in scope for the NDIS and identify potential service gaps
• Explain how the NDIS will meet the needs of people with psychosocial disability who would access current State and Commonwealth programs and who would benefit from psychosocial services and support, but who will not be eligible for an individualised support package
• In the context of an insurance scheme that should work to reduce costs in the long term, ensure that people at risk of developing debilitating mental illness and/or psychosocial disability have access to early intervention (in the broadest sense) to reduce the incidence and severity of future psychosocial disability and lower costs to the disability, health and other systems
• Embed human rights principles in the assessment and planning process for new NDIS participants, including if necessary revisiting legislation requiring participants to demonstrate permanency of impairment
• Tackle the huge and growing problem of unmet need for psychosocial support through proactive outreach and flexible approaches to assessment, planning and purchasing, particularly among people not currently in contact with the disability or health systems and among population groups which experience higher levels of psychosocial disability
• Closely involve mental health stakeholders in the process of monitoring and evaluation, and establish an early warning system to feed insights from the launch sites into policy discussion and implementation
• Provide information to the mental health sector in systematic and predictable fashion, with a presumption in favour of information disclosure to non-government stakeholders.
• Ensure that mental health expertise is readily available within the NDIS to inform assessment, planning, service coordination, policy making and evaluation.

Yours sincerely
Conference Delegates

Georgina Alley, Mental Illness Fellowship Victoria

Kerrie Banks, FSG Australia

Susan Barron-Hamilton, Aftercare

Jo Bennett, Micah Projects

Nathan Bollard, FSG Australia

Gary Bourke, Richmond Fellowship Queensland

Donna Bowman, Open Minds

John Campbell, Merri Community Health Services

Mal Causer, Micah Projects

Irene Clelland, Karakan Hostels

Laura Collister, Mental Illness Fellowship of Australia Inc

Paul Creedon, UnitingCare Wesley Port Adelaide

Amanda Davies, ACT Mental Health Consumer Network

Sue Deacon, Choice Support Service Inc

Julie Deane, Macarthur Disability Services

Ann Drieberg, Nextt Health

Helen Egan, Team Health

Carolyn Ehrlich, Griffith University

Lindsay Farley, Queensland Mental Health and Other Drugs Division

Josh Fear, Mental Health Council of Australia

Claire Fenner, WorkFocus Australia

Anya Fiedler, Life Without Barriers

Coralie Flatters, WA Association for Mental Health

Tony Florio, Florio Research

Claire Gardner, Drug Arm

Travis Gilbert, Mental Health Council of Australia

Damian Green, Communicare Inc

Rachel Green, Care Connect

Jean Graham, Australian Association of Developmental Disability Medicine

Katie Hammond, Communicare Inc

Jay Hendricks, Footprints Inc

Lisa Higginson, CatholicCare Canberra and Goulburn

Simone Hosgood, Ruah Mental Health

Jesu Jacob, Australian Community Workers Association

Kate Jeffries, Communicare Inc

Jodie Key, St Vincents Hospital

Cyd Kelly, Choice Support Service Inc

Felicity Lawrence, Victorian Dual Disability Service

Francis Lynch, Ruah Mental Health

Helen Lynes, Perth Central and East Metro Medicare Local

Ron McComiskie, Uniting Care West

John Mendoza, ConNetica

Tassia Michaleas, Merri Community Health Services

Dominique Moollan, VALiD Inc

Ian Moore, Uniting Care West

Adrian Munro, Richmond Fellowship of WA

Ka Ki Ng, NSW Consumer Advisory Group – Mental Health Inc

Jennifer Norris, Out Doors Inc

Leisha Olliver, Life Without Barriers

Lee Parker, Advocacy Tasmania

Frank Quinlan, Mental Health Council of Australia

Santo Russo, BetterLife Psychology

Paul Senior, Centacare SA

Mike Seward, Mental Health Carers Arafmi (WA) Inc

Jason Shield, Max Employment

Becky Sparks, Nextt Health

Craig Stanley-Jones, Aftercare

Veronica Terloar, Care Connect

Karen Thomas-Goldsmith, Connections Inc

Garry Thomson, On The Line

Anne Thorn, Macarthur Disability Services

Nicci Wall, Salvo Connect

Jody Wright, Drug Arm

Dennis Young, Drug Arm