Podcasts and webinars
The purpose of our podcast is to create opportunities to connect through sharing knowledge and information to anyone with an interest in the goals of CP-Achieve; our aims are to interact, integrate and connect.
Our key messages:
- Learn how the NHMRC grant is being used to benefit those whose lives are affected by CP;
- Get to know us and our stories and learn how to be involved with the CRE;
- Hear from people who are experts in the condition; including people with CP, their families/carers, clinicians, or researchers
Caring for the Carer
Monday February 14th 2022
Isabelle’s background includes mental health support, project management, research and public health. When she’s not working, she can be found riding her bike around the inner north of Melbourne, doing a puzzle or tending to her many houseplants.
Georgia is experienced in health promotion and communication the rare disease sector and consumer health and advocacy. Georgia volunteers as a Young Leader with the Consumers Health Forum of Australia. They may otherwise be found cooking up vegan feasts or practising martial arts.
Implementation Research: looking at getting what we know we should be doing into practice!
Monday January 31st, 2022
Stephanie is a qualitative and mixed methods health services researcher currently embedded with Australian Genomics at the Murdoch Children’s Research Institute in Melbourne. At MCRI she is working with clinicians, service leads and community advocates leading research into the implementation of genomics in clinical practice. Other active research interests include international collaborations examining areas such as professional identity, interprofessional working and coproduction.
PREP with Young Adults in an Australian Context
Monday December 13th, 2021
Annabelle graduated from Australian Catholic University - Melbourne in 2020 with a Bachelor of Occupational Therapy (Honours) and completed my honours project in partnership with consumers. Together Annie and Tash investigated the feasibility of implementing an evidence-based intervention Pathways and Resources for Engagement and Participation (PREP) with young adults living in Australia.
Natasha recently graduated from Australian Catholic University with a Bachelor of Occupational Therapy (Honours). Over the past year, Tash worked to implement Pathways and Resources for Engagement and Participation (PREP) with young adults in an Australian setting. This implementation was guided by Annie’s previous research and was also greatly supported by an extended research team. Tash is very excited for her future career as an occupational therapist as she will be able to help people every day.
Resource to Inform Young People with CP About Becoming Research Partners
Monday December 13th, 2021
Grace graduated from the Australian Catholic University with a Bachelor of Occupational Therapy. Grace has also been a support worker for the last four years, where she had the opportunity to learn from many different people. This year, Grace has mainly supported two people with CP, as well as a variety of people with spinal cord injuries - these are two areas of OT she is definitely interested in contributing to, and discovering more about!
Link to Resource: https://www.canva.com/design/DAEsvx66...
Tessa has undertaken a Bachelor of Occupational Therapy at the Australian Catholic University. She is passionate about adult neurological rehabilitation in hospital and community settings, and has interests in burns and amputation. Tessa would also like to further pursue research or assistive technology development.
Sexuality, Romance and Gender when you have Cerebral Palsy and Complex Communication Needs
November 29th 2021
Megan Walsh is a speech pathologist completing her PhD at Deakin University. She attended Northwestern University in the United States for her Bachelor’s and Master’s degrees before moving to Victoria in 2007 and working as a clinician. Her clinical focus has always been on working with people who use Alternative and Augmentative Communication (AAC) and their families, and she is currently involved in research around parent capacity building and AAC. She is currently bridging clinical knowledge and research for better outcomes for young people with cerebral palsy with the CP-Achieve research team.
What Ableism has to do with CP, AAC, Romance and Sex?
November 29th 2021
Dr Darryl Sellwood completed his PhD in 2019 at Flinders University. His research investigated the experiences of people with Complex Communication Needs in romantic and sexual relationships. Dr Sellwood has complex communication needs and uses an AAC device. As a computer science graduate with experience in the telecommunications field, he has a broad perspective on both user and technical issues. His first-class Honours degree project (UniSA) researched telecommunications access for people who rely on AAC. He currently works part time as a Scholarly Fellow at Flinders University, as part of a panel reviewing curriculum in the Disability Studies discipline.
The Who, What, When, Where, Why & How’s of Addressing Loneliness in Young People with Cerebral Palsy
October 25th 2021
Dr Robert (Robbie) Eres is a post-doctoral research fellow at CP-Achieve, within the neurodisability and rehabilitation group at Murdoch Children’s Research Institute. His expertise largely surrounds the social determinants of health and how social factors, including loneliness and social exclusion, exacerbate mental health symptoms (e.g., social anxiety, depression, stress) and contribute to poor physical health outcomes. Dr Eres is experienced in the development and evaluation of digital applications targeting loneliness and mental health variables in vulnerable groups (e.g., young people with psychosis, social anxiety disorders, those identifying as LGBTQIA+). Prior to his current research trajectory, Dr Eres explored the neurobiological correlates related to empathy and moral judgment and decision making. He used neuroimaging techniques to differential functional and structural brain regions associated with empathizing with different group memberships.
Opportunities and Challenges in Paralympic Sport
October 25th, 2021
Dr Iain Dutia is research officer at The University of Queensland, School of Human Movement and Nutrition Sciences. He is also a postdoctoral research fellow at CP-Achieve. His main interests are in enhancing physical and mental health in adolescents and young adults with disabilities, and his research to date has focused on increasing participation and enhancing performance in Para sport for athletes with high support needs. Iain also works clinically as a physiotherapist and has a background in sports injury prevention and rehabilitation.
Navigating the Experiences and Challenges of Caring for Those with Cerebral Palsy
September 27th 2021
Harry Taylor is a medical student with Monash University, currently taking an intermission in his studies. He has been a disability support worker for four years, caring for a client with CP. He is also involved with CP-Achieve through Dr Robbie Eres, assisting in a project looking to gain understanding of the social, mental and physical health of carers of those with Cerebral Palsy.
Mental Health Outcomes Across Childhood in Children with Developmental Disabilities
September 27th 2021
Magnus Ivarsson is a clinical psychologist and a PhD student at Linköping University in Sweden. He has a broad interest in research about mental health, participation, cognitive accessibility, and disability.
Project-TEAM for Adolescents and Young Adults with Intellectual Disabilities
September 1st 2021
Dr. Jessica Kramer is Associate Professor in the Department of Occupational Therapy at the University of Florida, and director of the Youth and Young Adult Empowerment, Leadership, and Learning (YELL) Lab. Dr. Kramer’s research draws upon theoretical concepts and methodologies from occupational therapy, disability studies, education and rehabilitation to: 1) Partner with youth with intellectual and developmental disabilities (I/DD) in the development and evaluation of rehabilitation products; 2) Develop community-based interventions that equip youth with I/DD and their families with the skills to identify and resolve environmental barriers to participation; and 3) Design high quality patient reported outcome measures (PROMs) using contemporary measurement approaches. Dr. Kramer uses quantitative, qualitative, and participatory approaches to design projects that harness the optimal method needed to answer complex research questions and meet the needs of multiple stakeholders, including youth and young adults with disabilities, their families, and rehabilitation professionals.
Pathways and Resources for Engagement and Participation (PREP)
September 1st 2021
Dr. Dana Anaby is an Associate Professor at the school of physical and occupational therapy at McGill University. Dana’s research encompasses the areas of participation and well-being among children, youth and young adults with physical disabilities, with a special focus on leisure participation and the impact of the environment. Her studies, funded by the Canadian Institutes of Health Research (CIHR), involve developing and testing intervention plans to improve community engagement such as the PREP (Pathways and Resources for Engagement and Participation), as well as enhancing measurement tools to assess Participation and Environment for transition-aged youth (such as the Youth and Young adult Participation and Environment Measure, Y-PEM). She also leads Knowledge Translation initiatives; particularly those aimed at promoting participation-based practices. Dana holds the FRQS (Fond de Recherche- Santé) Research Scholar Career Award and serves as the Principal Investigator of a range of clinical trials funded by CIHR, testing the impacts of the PREP approach.
Consumer involvement & Co-Design
June 3rd 2021
Christine Imms is the Apex Australia Foundation Chair in Neurodevelopment and Disability at the University of Melbourne and a Fellow of the Occupational Therapy Australia Research Academy. Her CRE CP Achieve Goals are to progress the participation research agenda and to build a program of research and teams of researchers that can be sustained beyond the life of the CRE.
Joan Gains is a parent with a 27 year old son Nicholas, who has CP and an ID. For the past 20 years, she has been involved with many organisations associated with improving outcomes for people with CP and their families. In addition to the Community Coordinator role, Joan is a trainer and speaker on the benefits of community engagement in research.
The Big Picture: The Context for CP-Achieve
March 29th 2021
This 1-hour webinar will provide information about a range of different projects and activities that are occurring in Australia that provide important context for the CP Achieve program of work. Topics covered will be:
National Disability Strategy
National Disability Research Partnership
National Disability Data Asset
National Disability Research Agenda
The CP Info Project
The ANZ CP Strategy
Followed up by a 20-minute Q&A session.
Bruce Bonyhady is a disability reformer, economist, one of the key architects of the National Disability Insurance Scheme (NDIS) and was the inaugural Chair of the National Disability Insurance Agency (NDIA) from 2013 to 2016. Professor Bonyhady is the father of three adult sons, two of whom have disabilities and in the 2010 Queen's Birthday Honours, he was appointed as a Member of the Order of Australia for services to people with disabilities, their families and carers, and to the community as a contributor to a range of charitable organisations.
Christine Imms is the Apex Australia Foundation Chair in Neurodevelopment and Disability at the University of Melbourne (a collaborative initiative of Apex Australia, The RCH Foundation and the University of Melbourne) and a Fellow of the Occupational Therapy Australia Research Academy. Her research focuses on those with childhood-onset disability and their families, with the goals of learning how to optimise their participation outcomes; development and evaluation of interventions; and development and validation of measures. Her CRE CP Achieve Goals are to progress the participation research agenda and to build a program of research and teams of researchers that can be sustained beyond the life of the CRE.
A Development of Health State Classification System From CPCHILD
February 22nd 2021
Utsana Tonmukayakul is a research fellow and PhD student at Deakin Health Economics. She is responsible for planning, analysing, summarize and disseminate results of economic evaluation of health programs/interventions. Her skills involve conducting cost-effectiveness analysis of randomised control trials and modelling. Her PhD project aims to develop a quality of life measure for economic evaluation in children and adolescents with cerebral palsy.
Hand Deformity and Upper Limb Orthoses for Children with Cerebral Palsy
February 22nd 2021
Simon Garbellini's PhD was embedded within two randomised controlled and multi-site trials; The Minimising Impairment Trial and the Infant Wrist and Hand Orthosis Trial. The results of Simon's PhD will provide support for clinical decision making about the management of hand deformity and upper limb orthosis prescription for children with cerebral palsy. As part of his PhD, Simon refined and explored the validity and reliability of the Neurological Hand Deformity Classification as a tool to guide clinical decision making, including orthosis prescription.
Exploring the Transition Experiences of Adolescents and Young Adults with Cerebral Palsy
December 14th 2020
Bella Clough is a Master of Public Health student at the University of Melbourne with a background in neuroscience. She completed a research project this year with the Transition Support Service Team at the RCH exploring the transition experiences of adolescents and young adults with cerebral palsy.
Introducing the Measure of Early Vision Use (MEVU)
December 14th 2020
Belinda Deramore Denver is an occupational therapist and a candidate within the Doctor of Philosophy program at Australian Catholic University. Belinda graduated from the University of South Australia with degrees in psychology and occupational therapy, and has worked as an OT in tertiary and community paediatric services across South Australia, New South Wales and Victoria. Belinda’s interest in working with children with cerebral palsy and children with vision impairment has led to her research in the area of vision. The primary outcome from her PhD research is the development of the Measure of Early Vision Use (MEVU).
The effectiveness of behavioural interventions in the treatment of drooling for children with CP
Monday, November 30th 2020
Michelle McInerney is an academic and researcher in the Australian Catholic University, and has recently submitted her PhD thesis focused on the topic of saliva control in children with cerebral palsy. She graduated as a speech pathologist with a B.Sc. (Hons) in Clinical Speech and Language Studies from Trinity College Dublin in 2000, and later followed with a M.Sc. specialising in paediatric dysphagia in 2008. Michelle has over 16 years’ experience working in acute medical, community and disability healthcare settings. Her research is focused on individuals with CP and interests include: behavioural interventions to improve swallowing, saliva-control and speech-related outcomes to optimise health and well-being; assessment and measurement; and consumer engagement.
Consumer Involvement in Research: Connections and Participation in CP-Achieve
November 30th 2020
Margaret Wallen's research focuses on children and young people with cerebral palsy. Margaret is interested in measurement; evidence-based practice; knowledge translation; and consumer engagement in research. As leader of the consumer involvement theme, she is working with researchers, young people with cerebral palsy and their families to integrate the consumer voice into every facet of CP-Achieve.
Sevastine Katsakis is passionate about connecting with people, mental health and overall well-being, especially in children and young adults. She has cerebral palsy herself and therefore is able to use her lived experience and understanding of the condition to connect and empathise with individuals and families. Sevastine has a background in psychology and clinical counselling. Her interests for the CRE include engaging the community in the research, increasing participation and improving outcomes, while also reaching people who are not linked in to hospital services.
Victorian Transition Services - What We Do and What to Expect!
November 9th 2020
BARWON HEALTH Clare Hellawell is the current acting Clinical Lead for Barwon Health’s Young Adults Transition Service (YATS) having been with the service since 2016. Clare completed her qualification in Speech Pathology in 2005, and since then has worked in a variety of positions across public health and disability services in Victoria and the UK. Clare thoroughly enjoys working with young people, and is a strong advocate for communication access. More recently, YATS have developed a health literacy skill development program at Barwon Health that targets health independence skills through intervention and real life practice. YATS have partnered with local specialist schools to deliver school based clinics and health literacy group programs which are the highlight of Clare’s work.
BENDIGO HEALTH Robyn Soulsby is the stream leader of the Bendigo Transition Service called Young Adults with Complex Needs. She is an Occupational Therapist with a passion for quality healthcare and helping people to access the care they need and to live their best life as a member of their local community. Robyn also leads other neurological rehabilitation programs in Outpatient Rehabilitation Services at Bendigo Health.
ST. VINCENT'S HOSPITAL Veronica Saunders is the Acting Team Leader of the Young Adult Complex Disability Service at St Vincent’s Hospital, Melbourne. Practising as a social worker for nearly 20 years, Veronica is passionate about supporting individuals and their families to live their best life.
MONASH HEALTH Stacy Kelly is a physiotherapist and the Acting Clinic Lead for the Young Adults Transition Service at Monash Health. She has a particular interest in disability, and worked in paediatrics at the Royal Children’s Hospital and in special education settings before moving to adult healthcare.
Keeping Fit! What Does it Look Like When You are an Adult with Complex CP?
October 26th 2020
James Czencz is a physiotherapist working at Portland District Hospital and is currently undertaking a PhD with the Australian Catholic University, investigating exercise interventions for adults with complex presentations of Cerebral Palsy. His research and career interests are in exercise-based interventions and rehabilitation.
Tackling Transition - Tips and Tricks for a Successful Move from Paediatric to Adult Care
October 12th 2020
Lachlan Dosser is a long standing patient at the Royal Children’s hospital who has recently begun transitioning to more adult suited clinics at Saint Vincent’s hospital. He suffers from cerebral palsy on his left side since birth, he has also recently been diagnosed with epilepsy. He is in year 10 here in Melbourne. Lachlan challenges his disability on a daily basis whether it’s in his champion swimming or as simple as cutting food. He would like to share his story and how he strives to not let his medical challengers define him growing up as he moves into adult hood and his independent medical responsibilities.
Evelyn Culnane leads the Transition Support Service at the Royal Children’s Hospital (RCH) Melbourne. Evelyn’s leadership in the field of transition care has resulted in positive outcomes for patients with complex needs and their families including the implementation of a new model of care for adolescents with an Intellectual Disability and/or Autism Spectrum Disorder with mental health or behavioural concerns.
A/Prof Adam Scheinberg is a paediatric rehabilitation specialist and is the Statewide Medical Director of the Victorian Paediatric Rehabilitation Service (VPRS). The VPRS provides time-limited, goal-focused services to children and adolescents following illness or injury. As the medical director, Associate Professor Scheinberg is involved in ensuring best practice treatment and translation of clinical research into services provided by the VPRS.
Assessment of Postural Asymmetry in Non Ambulant Adults with Cerebral Palsy
September 28th 2020
Carlee Holmes is the Senior Physiotherapist in the Young Adult Complex Disability Service at St. Vincent's Hospital Melbourne with a particular interest in the postural management of non-ambulant adults with cerebral palsy. Carlee is currently completing a PhD investigating "Assessment and Management of the common postural characteristics in young adults with Cerebral palsy” at Monash University. She has also gained additional certification in Postural Care and Measurement of Body Symmetry.
Efficiency You Say - What on Earth Does That Mean?
September 28th 2020
Rob Carter has many years of experience in the design and application of economic appraisal across multiple settings by using the full range of economic methods and communicating of economic results in policy relevant ways. His research interests are economic appraisal of health care services and priority setting. Rob’s goal for the CRE is to encourage clinicians and academics to work with stakeholders and policy-makers to bridge the gap between academic rigor and applied policy-making in major areas of health related to CP with a strong focus on knowledge transfer.
Paving the Way for Adolescents and Young Adults with Cerebral Palsy
August 31st, 2020
Dinah Reddihough, CP-Achieve Principal Investigator
Professor Dinah Reddihough had many years' experience as a paediatrician where she was involved in the clinical care of children with disabilities, particularly cerebral palsy. She is now concentrating on her research program. After leading a successful NHMRC-funded Centre of Excellence in Cerebral Palsy over the years 2014-19, she is now heading up CP-Achieve which will address the health and social inequities of adolescents and young adults with cerebral palsy, a growing population known to be significantly disadvantaged.