Personal Journeys

President’s AGM Report

2018 – 2019

There is a lot of change happening in the Victorian disability sector, especially with the rollout of the National Disability Insurance Scheme (NDIS) that focusses on people with disability having more choice and control in their lives. Not everyone is eligible for the NDIS however what it does highlight is the important role advocacy plays in the lives of people with acquired brain injury (ABI). The disability mantra ‘nothing about us without us’ reminds us that we need to have a voice and be at the centre of all decision making processes that impact on our daily lives. It’s a basic human right that we must never take for granted, and we need to keep advocating for.

Brain Injury Matters (BIM) works hard to ensure people feel empowered and more confident about themselves and enacting their rights. This is what self advocacy is all about. BIM also plays a vital role in educating the broader community about the effects of ABI and how things could be improved for people with ABI. So even though our work is very much about individual capacity building, it’s also about what we can achieve together as a group.  This can be seen in the many projects we have undertaken in the past twelve months and it couldn’t have been possible without the hard work of so many of the BIM members.

The Loddon Mallee project
In July 2018- June 2019, BIM ran a project in the Loddon Mallee region called ‘Social Media, The Broader Picture’. This was with the support of Bendigo Health and the Department of Health and Human Service (DHHS) Disability Advocacy Sector Capacity Building Fund. This project connected with many ABI peer groups and service providers throughout the Loddon Mallee region, and provided social media training. The experience of ABI can be very isolating and living in a rural area can increase this sense of isolation. This project aimed to support and build capacity of people with ABI to lead independent lives, as well as contribute to communities and support networks in the region.

The BIM website

BIM has been running for over twenty years but as our office is based in the city it is important for us to be able to reach as many people as possible.  This is particularly important for people who live in regional and rural areas, and for those who are experiencing isolation due to their ABI.  Developing a standalone website was key to sharing information and resources, increasing membership, letting people know about up and coming events, sharing our stories, and connecting people to the ABI Wise app. Special thanks to Kayla, Anne, Larissa, Colin and Melanie who worked tirelessly on the website.

The ABI Wise App Project
In 2018 and 2019, BIM led a project to build the world’s first App about brain injury, made by people with a brain injury. It was successfully launched in March 2019, and it has been well received across the world. This App is for all mobile devices and contains factual, creative, and entertaining information about how to live well with your brain injury or stroke. We made this App to share our collective wisdom, and hopefully decrease the isolation many people with ABI feel. We hope it will improve the lives of all people living with ABI everywhere.

The ABI Wise App could not have been done without the hard work of many people. This project was inspired by the hard copy kit originally developed for hospitals called ‘The Hitchhikers Guide Through the Brain Maze’, led by former BIM President Peta Ferguson. We used this as a basis to consult with a range of ABI peer support groups and networks across Victoria. Thanks to A Bright Idea in Mornington, Ballarat Stroke Support Group, Compass Clubhouse in Thornbury, Everywoman: Supporting Women with ABI in Bendigo, Geelong ABI Clubhouse, Life’s Appreciation Group in Doveton and United Brains, who all had a say and contributed some great ideas to the App.

Special thanks to the ABI Wise Working Group: Larissa, Brent, Eva, Lisa, Kayla and Melanie who spent many hours reaching out to these groups, developing and designing content, testing the App, and working closely with our various supporting partners. These included BIM members, Self Advocacy Resource Unit, Rachel Edwards from Bandanna Photography, Angus Strachan Productions for videos, Clickify, Leadership Plus and Brain Injury Australia who all helped the App come to life.

The Self Advocacy Resource Unit (SARU)

SARU aims to resource and support self advocacy groups across Victoria and BIM continues to contribute as part of the Management Group. We gain so much from our involvement with SARU, we meet other people with disability, and get to raise our voices and say what services we want and need. Many BIM members have taken part in the Voice At The Table (VATT) training. The VATT project aims to increase the number of people with cognitive disabilities and acquired brain injury to sit on boards, committees and advisory groups. For BIM members this has led to a number of other opportunities, for example, being sought after speakers, expert panellists, facilitators, consumer advocates, video stars and community researchers. 

The Victorian ABI Support Network

The consortium group BIM, United Brains and By Accident were successful in receiving an NDIA Information, Linkages and Capacity Building (ILC) one year grant to start the Victorian ABI Support Network. The project has both organisational and individual capacity building activities and commenced in July 2019 and we will report on this further next year.

We couldn’t do it without you

There are so many organisations and people who believe in what we do and partner with us to achieve our goals and appreciate what BIM has to offer. These are some of the partners who we would like to thank.

• Australian Federation of Disability Organisation (AFDO)
• Action for More Independence & Dignity in Accommodation (AMIDA)
• Australia Self Advocacy Project (ASAP)
• Brain Injury Australia
• Cancer Council
• City of Melbourne
• Clickify
• Department of Health and Human Services
• Department of Social Services
• Disability Services Commissioner
• Leadership Plus
• National Disability insurance Agency (NDIA working group)
• One Million Stars to End Violence project
• Ross House Association
• Self Advocacy Resource Unit
• Summer Foundation
• United Brains
• University of Melbourne
• Voice at the Table steering committee
• Victorian Council of Social Service (VCOSS)
• Victorian Self Advocacy Network (VSAN)

Final note

This is my last year as BIM President and I feel lucky and indeed privileged to have worked alongside so many committed, intelligent and dedicated BIM people. I am grateful that you gave me this opportunity and I have learnt so much from each and every one of you. The best part of being BIM President has been having a chance to bring our beloved group into the limelight. Representation and visibility is so important. The experience has been challenging, inspiring, and amazing. I will continue to be an active contributor to BIM as I have seen how it can make a difference and give a real voice to people with ABI. Long live BIM!