Copyright Michael Burge OAM Consumer Advocate – November 2016

A Lived Experience of Mental Health Reform

& the NDIS The Consumer's Perspective

Michael Burge OAMConsumer Advocate

Wellness WarriorMental Health

diliburge99@yahoo.com.au

4th National Mental Health Conference Melbourne

28 November 2016

References

• Shared Perspectives on authentic Co-design Putting Consumers and Carers at the centre of mental health reform - 2016

• Michael Burge, Shared Perspectives on authentic Co-design, Appendix 5: NDIS Starship Enterprise Parable - 2016

• Janet Meagher AM, Partnership or Pretence – 3rd Edition March 2002

• Janet Meagher AM, Enhancing practice for people with psychosocial disability – July 2016

• We are the Evidence, Evaluation of Peer Programs, SAMSHA – August 2015

• Larry Davidson, Peer Work, An International Perspective, June 2015

• Mental Health Coordinating Council (MHCC) Certificate IV in Mental Health Peer Work development, 2009-2016

• Michael Burge - Discussion Paper re Action 26, National Mental Health Plan, Increase Consumer & Carer Employment in Clinical & Community Support Settings - 2011

• Michael Burge - Recovery Innovations Presentation Phoenix Arizona –2007

• Michael Burge - Scottish Recovery Network (SRN) Glasgow – 2011

• 4th National Mental Heath Plan 2009-14, Peer Workforce development

Control over your own life

is a human right.

Decision making is how

most people use this right.

NDIS Starship Enterprise

Parable

By

Michael Burge

Parable handout available

It won’t just change what we call things but what we do

remember

"a wombat dressed in different clothes is still a wombat".

Remember real reform means changing

NOT just what we call things.

Michael Burge CONGO Canberra 2012

Do you Value the Lived Experience!

Anything about US must include US

Nothing About US Without US

Nothing About ME Without ME

Can everyone imagine this today if you can – close your eyes

• How many of us here today have felt more than frustrated by some of the things that are done in services which make little difference to the quality of life of consumers and does not assist them live contributing lives.

• So I ask you all to imagine what would happen if all the services had to start over again.

• What if we woke up tomorrow drove to work, and the building we worked in was gone. We looked everywhere and could not find a trace of the paperwork, the computers, any plans and so on. All gone. We hear a phone ring on the ground where the building use to stand.

• We pick it up (yes, this could just be “mission Impossible”) and a voice says, “Your wishes have been granted - all the things that didn’t work before are gone.

• Here is a list of people you will be supporting.

• At the end of the month, if they are closer to THEIR recovery goals, and towards living a contributing life based on what THEIR wants, desires and needs are - you will have achieved something.

• Do what you know will work to support them to reach THEIR goals, THEIR wants, THEIR desires and THEIR needs.

Still some do not understand whatPsychosocial Disability means

“Psychosocial Disability” – defined

“impairments and participation restrictions include loss of, or reduced abilities to function, think clearly, experience full physical health and

manage the social and emotional aspects of their lives” - NMHCCF 2011

Unravelling Psychosocial Disability – Position Statement by the National Mental Health Consumer & Carer Forum (NMHCCF) is a great resource to begin understanding the

definition and experience of psychosocial disability

www.nmhccf.org.au

NDIA Insurance Principles

We need to seriously ask ourselves are we

genuinely & meaningfully adhering

to these principles:

• Choice and control

• Independence

• Self Management

Partnership or Pretence

• What percentage of NDIS coordinators do we have with a lived experience of mental health?

• What percentage of support facilitators do we have with a lived experience of mental health?

• How many PHNs genuinely and meaningfully engage with people with a lived experience of mental health?

• How many PHNs will assist in capacity building the peer workforce

– Fund commissioning Certificate IV MH Peer Worker Scholarships through flexible funding

• What percentage of people with a grass roots lived experience of mental health issues have you seen as key note speakers in conferences around Australia?

• How many professional expert key note speakers do we see presenting side by side people with a grass roots lived experience?

• Lived experience people are more than capable of speaking as key note speakers?

• I am not saying we don’t need highly qualified expert speakers -but why is it done without the inclusion of grass roots lived experience key note speakers?

• Grass roots lived experience people have taken a back seat for long enough – its about time they are seen to be valued just as much as the professional experts – actions speak for themselves.

Partnership or Pretence

How many national organisations have a person with a lived experience on their board – I am not saying that is all you need – obviously you need to have the skills.

How many well funded and theoretically leading organisations in the sector talk about just how absent the consumer voice is but do little to change this.

How many Mental Health Commissions have lived experience commissioners and not just on advisory councils / committees?

An independent consumer peak body would be able to measure the performance of the NDIA & NDIS from the lived experience perspective and NOT the providers Perspective.

One of the fundamental premises of the new Peak Body would be to emphasise the value & inclusion of the lived experience.

An essential and urgent need for having a National Mental Health Lived Experience Peak Body

exists right now

People with a lived experience of mental health have had enough of been spoken about and spoken for.

People with a lived experience of mental health have had enough of the

condescending, patronising, tokenistic, intimidating, discriminating,

institutionalised, dismissive attitudes.Michael Burge, TheMHS Conference Sydney 2010

Lived Experience people in Australia

Have a basic human right to an independent, genuine,

meaningful and collective voice on decisions that affect

them.

We must value consumer leadership and its voice, that

is authentic and legitimate in bringing the value of lived

experience in genuine and meaningful co design

processes.

Until we have a dedicated national mental health

consumer voice, valuing the lived experience will remain

sporadic and at times tokenistic.

Current statistics show that only 53% of participants in the NDIS with psychosocial disabilities come from existing programs and 47% are not engaged with any funded program.

• What are we doing to address this issue?

We must introduce practices that facilitate outreach and engagement with those people who need supports and are not currently with any funded program, otherwise we are not meeting the needs of people with a psychosocial disability.

Consumer Operated & Governed

Audit Team

Recommend we establish an independent

mental health consumer body to measure

the performance of the NDIA & NDIS

from the lived experience perspectives

NOT the providers perspectives

Valuing the Lived Experience in Co-productionAre we there yet?

• Co-production will not work if services come with entrenched pre-determined ideas of what the solutions must be.

• In co-production we need to be equal partners, have collective ownership and have co- responsibility and there’s no one person who is the boss. Both professional and consumer input must be equally valued and included right from the beginning of the processes - no more excuses.

• We must work by consensus and move away from the dictating authoritarian leadership styles – consumers, carers, families, and community know what works best for them and their peers.

Valuing the Lived Experience in Co-productionAre we there yet?

• We need health systems that are driven by the needs of the community (consumers, carers, families) and not by the needs of the service providers.

• Co-production promotes collaborative rather than paternalistic relationships between staff, organisations and consumers.

• Consumers must have genuine and meaningful involvement and influence. It’s about trust – people must have trust in the relationships.

We need to change the mindset of NDIS participants:

Use to selecting whatever is available.

Use to being grateful for anything offered.

It was portrayed as a Charity model.

Use to Choosing what can be given rather than what is needed or desired.

Not use to real choice or how to risk asking for something ‘from left field’.

Starting from a very low expectation base.

More considerations

• What about those that did not qualify for services prior to the

NDIS?

• What are we doing about the low access rates for MH clients?

• What about outreach?

• Why should it start only when the person calls?

• What about the pressure some people are being placed under

with out of the blue phone calls asking them to do a plan over

the phone when they don’t know exactly what they can have?

• What about Reasonable Adjustments for people to outreach

and engage if they are not supported?

• What attention are we giving to Workforce and Market

Readiness?

PHN’s and Mental Health Reform

• It seems that the principal focus of the Department’s MH Reform is tied up

in establishment and guidance of PHN’s. PHN’s offer clinical supports in a

stepped care system. There appears to be a potential gap opening up in

this clinical service provision framework.

• Will this eventuate in limited service availability for people in recovery

from MH issues. People with a psychosocial disability and peers, need a

range of supports that are more holistic than mere clinical interventions.

How can we see the limitation of available psychosocial supports as “MH

Reform”.

Reference: Janet Meagher AM & Eileen McDonald, NMHCCF meeting

September 2016.

My Questions re PHNs

Will PHNs focus on clinical services & not psychosocial disability?

What exactly is the definition of clinical service delivery within PHNs?

Australian National Audit Office

nowhere near enough attention in

the 5th National Mental Health Plan

- How much of a mention does NGO’s

and/or the MH Workforce get?

- Why does the Peer Workforce only get a

passing reference?

Our way forward …. The Daily Challenge

It is indeed a challenge to

Rock the boat… but manage to stay in it

Walk the fine line between …difference and fit,

inside and outside.

Be able to challenge the status quo

…when we see that there could be a better way.

Capable of working with others to create success

NOT be a destructive troublemaker.

But it is one challenge well worth taking every day.

“Every truth passes through three

stages before it is recognised.

In the first, it is ridiculed,

In the second, it is opposed.

In the third, it is regarded

as self

evident.” Arthur Schopenhauer (1788-1860)

Questions