CP-Achieve/AusACPDM 2023 Symposium
The CP-Achieve and the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) 2023 Cerebral Palsy Symposium was held in Melbourne on Thursday 3 and Friday 4 August. The symposium theme of ‘Linking Health, Wellbeing and Participation’ sought to explore and share new knowledge about maximising health, participation and social opportunities for adolescents and young adults living with cerebral palsy (CP).
This was the second joint symposium for CP-Achieve and AusACPDM and focused on life situations that young people with CP had told us are important, including healthcare, home life, education and employment, fitness for life, relationships and friendships, and community participation. Topics were aligned with the two major aims of CP-Achieve, that is improving physical and mental health and building supportive family, community, and health service environments. 19 sessions were delivered by 70 researchers, experts and people with lived experience in cerebral palsy.
Over 170 researchers, people with lived experience of cerebral palsy, health providers, policy makers, researchers, and representatives from non-government organisations, hospitals, and professional peak bodies from across the country, attended the two day event.
We would like to thank our sponsors, Mable and Cerebral Palsy Australia, and CPActive, who provided direct and indirect support for the symposium and attendees.
A special thanks go to all of those involved in organising and delivering the symposium and to all the presenters who helped make the CP-Achieve and AusACPDM 2023 symposium a fantastic success.
Highlights and Summary
Day 1: Mental and physical health of adolescents and young adults with cerebral palsy
The symposium kicked off with a wonderful opening address from CP-Achieve’s Principal Investigator Professor Dinah Reddihough, Co-President of AusACPDM Sarah McIntyre and Consumer Coordinators Sevastine Katsakis and Caroline Pinto who talked about how CP-Achieve and the Symposium’s focus is on young people with CP. This was followed by a fantastic keynote address from Priya Cooper OAM who had the audience hanging onto her every word as she talked about her personal journey and her experience of the importance of building and being part of a supportive environment is to making life achievements possible. Professor David Coghill, a CP-Achieve Chief Investigator, was the second keynote for the day and provided a comprehensive update on data related to mental health disorders, how it relates to young people with CP, and the relevant work that is being undertaken by CP-Achieve.
The day then included sessions on:
- A thorough overview of current pain research in young people with CP, outcome measurement selection, and most importantly, lived experience insights Amy Hogan summarised what is needed in a few powerful words “Finding someone (a health professional) who can sit with our complex needs is key.” (Associate Professor Adrienne Harvey, Nadine Smith, Meredith Smith, Amy Hogan and Caitlin Doyle).
- Surveillance and intervention for musculoskeletal issues for people with CP. The key message was that the best outcomes are with early surgical intervention BUT it is never too late to try and prevent progression - lifelong monitoring is needed (Associate Professor Erich Rutz, Professor Kerr Graham, Dr Carlee Holmes, and Pam Thomason).
- Sleep and fatigue and the complex interplay with mental health, pain and physical function for adults with CP- They affect and are affected by all levels of the ICF and there is much work to be done in developing our ability to assess and manage sleep and fatigue (Dr Sue McCabe and Professor Susan Sawyer).
- Coordinating care for children with complex medical needs. The key message was that individualised care plans with a family lead, community services lead and health services lead can empower and improve quality of life for children and families (Dr Monica Cooper and Dr Noula Gibson).
- Disability support in the Northern Territory by Robyne Burridge, OAM who talked about progress to date but stressed that there is still a long way to go.
- Indigenous approaches to child development, well-being and services delivered by Dr Helen Milroy, AM. Her key message was that “true collaboration based on friendship is the way forward.”.
- Parenting and wellbeing panel who very generously shared their personal experiences of parenting young people with CP. In the ever-changing period of child development "it's like operating in a grey zone" (Rowland Mosbergen, Joan Gains and Helen Tossell).
- An excellent example of a consumer-initiated enquiry leading to relevant, targeted & important research on emotional regulation and mindfulness (Dr Honan & Dr Hayley Smithers-Sheedy).
- School connectedness where it was highlighted that the that the quality of relationships at school was most predictive of student wellbeing (Professor Susan Sawyer)
- An update from CP-Achieve: The Understanding Survey (Dr Sarah Giles)
Day 2: Building supportive family, community, and service environments
Kurt Fearnley, Chair of the National Disability Insurance Scheme Board and former professional wheelchair athlete was first to present on day 2 and moved the audience to tears with his keynote address. He gave an impassioned reflection and a call to action to ensure inclusion of all people with disability. Kirstin Deane followed and provided an overview of the NDIS review currently underway. It was great to have open floor discussion with all attending the symposium and an opportunity to provide direct feedback to the review.
The day followed with:
- Discussion from a NDIS, Equity and Law panel. “The NDIS being enshrined in law means that disability support becomes a right, enshrined by law, not just a gift. It’s meant to create some reliability and predictability.” (Dr Piers Gooding, Dr George Disney, Dr Kay Wilson, Dr Michelle King, Dr Darren O'Donovan)
- Associate Professor Loretta Sheppard shared her work on building connected services and skill development to facilitate employment goals for young adults with disability.
- St Vincent’s Young Adult Complex Disability Service presented their work in supporting young adults with disability to achieve their vocational goals (Dr Carlee Holmes, Dr David Murphy, Emma Fredrickson, Veronica Saunders)
- CP-Achieve consumer researcher Rohan Symonds presented on his Churchill Fellowship trip to the USA to find out about Project TEAM and how we can better support employment goals for young adults with disability.
- Dr Ann Edwards "Speech Theologist" delved into what it takes to build supportive church environments for people and families with disability.
- Excellent discussion about what it means to live independently. To have choice, control and a place to call your own. Whether that be alone, with support, or living with other people (Oliver Hunter, Peta Hooke, Lyndal Hickey, Jane Tracy and Evelyn Culnane).
- Associate Professor Leanne Sakzewski shared how the PEERS program builds the skills of young people to develop/maintain relationships. The panel (Joan Gains, Feona Magtanum and Gaurav Thakkar) gave lived experience insights and advice to other consumers about building relationships and friendships.
- ‘Fitness for Life. Fitness for Everyone’ segment highlighted physical activity options for adults with complex CP, discussing community and home settings and dignity and risk (James Plummer, Dr Stacey Cleary, Dr Carlee Holmes, Professor Prue Morgan, James Czencz, John Carey).
- Eight outstanding CP-Achieve PhD students sharing snippets of their work Nadine Smith, Jacinta Pennacchia, Jackie Ding, James Czencz, Kerry Britt, Georgia McKenzie, John Carey, Abby Thevarajah).
- A moving closing address by Professor Dinah Reddihough.
You can still view the full program HERE
The CP-Achieve and AusACPDM 2023 Symposium: Linking Health, Wellbeing & Participation has various sponsors that have enabled consumer involment and participation at the symposium.
Main Sponsor- Mable