A Lived Experience of Mental Health Reform and the NDIS

With only a few weeks until his address at the 4th Annual National Mental Health Conference in Melbourne, we thought a brief word with Michael Burge OAM, Consumer Advocate / Wellness Warrior, National Mental Health Consumer & Carer Forum (NMHCCF) would be the perfect prelude to the event. Presenting  ‘A Lived Experience of Mental Health Reform and the NDIS – The Consumer’s Perspective’, Michael was kind enough to share with us an introductory look into himself and his work:

Michael Burge OAM, we are delighted to have you join the program for 2016. You currently work as a Consumer Advocate and Wellness Warrior. What have been some of the highlights of your work supporting and campaigning for people with a mental illness?

I have had the honour and privilege to meet with many inspirational people who have a lived experience of mental illness over the past 22 years. Listening to the countless number of heartfelt stories, watching people reclaim their sense of self, grow in their journey of recovery and regain hope that recovery is possible.

I have also worked with many courageous and spirited consumer and carer advocates who have paved the way for a better future for people with a lived experience of mental illness – just some of their outcomes:

• Increased inclusion and value of the consumer voice.
• Emphasis on recovery focused service delivery.
• Introduction of consumer run services.
• Inclusion of Peer Workers.
• Development of the Certificate IV Mental Health Peer Work which was a watershed
• project and one of the most exciting, ground breaking advancements for peer work in
• decades.
• Increase and focus on consumer rights and involvement in their care and treatment.
• Increase in Mental Health literacy.
• Decrease in Stigma and Discrimination.

You are going to provide A Lived Experience of Mental Health Reform and the NDIS – The Consumer’s Perspective at the conference. Without giving too much away about your upcoming presentation, are you able to share through your own experience how the NDIS and Mental Health Reform is having a positive impact on the lives of those with a mental illness

• Enabling Personal Choice and Control
• More hopeful that their needs will be met.
• Enabling self-management and their ability to choose what is important to them to achieve their personal aspirations, goals, passions, interests, desires and needs.
• Empowering people to become the experts in their own self-care.
• Taking pro-active steps in promoting their own wellness.
• Choosing the type of care, they want.
• Exploring the use of peer work options.
• Taking more responsibility for their own lives.
• Empowering people to take risks and have the “right to fail”.
• Self-determination, critical thinking, and independence is more valued.
• Following their own dreams to recover.
• Discovering new possibilities and seeing options instead of obstacles.
• Increasing independence and freedom.

The following quote is from a presentation you gave in 2007, “We all need to remember that people with a lived experience of mental illness may forget exactly what you said,
they may even forget exactly what you did, but they will never, ever, ever, forget how you made them feel.” Do you think there is enough emphasis placed throughout our community on the importance of recognising mental health issues?

Many Australian organisations (too many to mention) have done some great work in this area. The importance of recognising mental health issues has increased significantly in recent years but it is very important that we continue to increase the mental health literacy of the community.

Are there any presentations from the 4th Annual National Mental Health Conference that you are particularly looking forward to? 

• KEYNOTE ADDRESS | Disability and Mental Health: Making it Part of Every Day Life by Graeme Innes AM, Former Disability Discrimination Commissioner. Graham is a very inspirational speaker.
• Digital Mental Health: Professor David Kavanagh, QUT and Director, e-Mental Health in Practice. I have heard David present on this before and it was very innovative.
• Managing Sector Change within Community Mental Health.
• Can we Define the System we are Reforming? Dr Lesley van Schoubroeck, Acting Commissioner, Queensland Mental Health Commission.
• The Implementation of the Stepped Care Model as a Framework to Formalise Sector Reform and Realignment.
• NDIS/FYI Preparing People with a Psycho-Social Disability for the NDIS.
  

We were also lucky enough to speak with Judy Bentley, Mental Health Carer Representative, who is presenting ‘A Carer’s Perspective on Mental Health Reform and the NDIS‘ : 

We are delighted to have you as our Mental Health Carer Representative on the program for 2016. Can you describe the most rewarding part of your role as a Carer and also the most challenging?

For 15 years I have been the principal carer for my now 35 year old son who has lived with severe and persistent mental illness since the age of 20. 

For me and for most mental health carers, navigating privacy and confidentiality constraints while respecting consumer’s rights, has meant that for most of the time we have to manage situations for which we are not trained, have very little understanding of the nature of the illness, what treatment regimens might be implemented and without information about possible side-effects, and all of this with little financial, physical or emotional support. 

But the rewards of seeing my son and others like him, on the road to recovery through programs such as Partners in Recovery, which have been developed in recent years with genuine consumer and carer participation, has been something of which I am enormously proud. 

And the introduction of the NDIS and inclusion of psycho-social disability means that the person we care for will be supported for life and that we can go back to our ‘normal’ roles and to living our own contributing lives.

You are going to provide A Carer’s Perspective on Mental Health Reform and the NDIS at the conference. Without giving too much away about your upcoming presentation, are you able to share how the NDIS and mental health reform is having a positive impact on your role as a Mental Health Carer?

The difficulties in accessing timely and appropriate treatment and care when my son became acutely unwell were challenging and led to my involvement as a carer representative at the National and ACT levels.  I have been included in many policy reviews, mental health plans, inquiries, evaluations, etc. but most of them have had little impact on the lives of those living with mental illness. 

But, there have been great achievements in recent years that have led to real and positive change for people living with mental illness.  I list Partners in Recovery as one of the great successes, particularly around system change and for targeting and meeting the needs of consumers living with complex needs. 

The implementation of the NDIS has to be the greatest positive change for people living with disability since the implementation of Medicare.  I recognise there are challenges in bringing this enormous community program to fruition, but I remember the challenges of implementing Medicare when it first came into being and none of us would want to go back to previous times. 

And for those of us who have been caring for someone with a debilitating disability, NDIS brings us a lifetime security of care for our loved one, and we as consumers and carers value and appreciate our inclusion at all levels of the process.

Do you think there is enough emphasis placed throughout our community on the importance of recognising mental health issues?

We still have work to do before mental illness receives the same level of acceptance, respect and support as physical illness.  We need to get rid of the aspects of ‘self-blame’, fear, sensational reporting, etc. of mental health issues.  But, I recognise it is difficult for people to understand and accept mental illness unless they experience a lived experience.  Stigma does not just affect the consumer, but the families and carers who are caught up in the difficult journey to wellness. 

High profile personalities talking about their own mental health challenges have had positive impacts of community acceptance and have helped to break down barriers. 

I believe the recognition of developing mental illnesses needs to be made early and intervention programs implemented in schools, workplaces, general practice, and throughout the community. 

Are there any presentations from the 4^th Annual National Mental Health Conference that you are particularly looking forward to?

This is a very interesting program with an excellent cross-section of current mental health reform issues open for discussion.  All of the presentations would be of interest to me and would support my role as a mental health carer representative on reference groups supporting mental health programs transitioning into the NDIS.  I believe that for the current reform program to be successful there needs to be a collaborative, inclusive, supportive approach between all levels of Government, Primary Health Networks, clinicians, service providers, consumers and carers, private mental health services, community mental health services and members of the community.

Michael & Judy join an excellent speaking facility of over 22 high-caliber industry figures as we celebrate the 4th Annual National Mental Health Conference later this month in Melbourne. For more details on the event click here.