Dr Laura Miller has been recognised with the Vice-Chancellor’s Staff Excellence Award for Research and Research Partnership for her leadership of the ENVISAGE program.
ENVISAGE is a peer support program empowering families and caregivers of children living with a developmental concern or disability. These children may experience a diverse range of conditions such as cerebral palsy, autism, rare genetic conditions or acquired brain injury.
As ACU’s Chief Investigator, Laura has led ENVISAGE since 2017 - driven by an identified gap in evidence-based supports for families and caregivers. She says the design of ENVISAGE is informed by the lived experiences and needs of this cohort. Families, service providers, and clinicians are involved at every step of research and implementation. Rather than focusing on specific diagnoses or developmental concerns, ENVISAGE looks at the common experiences that impact families and their relationships – and builds a strengths-based focus.
“I’d seen it clinically, but also the literature showed us that caregivers raising children with disabilities can experience much higher levels of stress and worry,” Laura said.
She said that far too often the source of parents’ stress comes from stigma and the outdated attitudes of society… that children with a disability are seen as ‘a problem to be fixed’.
“The systems that we work in have created an environment that has really disempowered families.”
She said families had raised issues about not having a road map for raising a child with a disability; feeling isolated and overwhelmed; and wanting to feel confident to make evidence-informed decisions for their child and family. The ENVISAGE research team then delved deeper to understand how families could benefit if they were offered key information and connection in a program designed by parents, for parents.
“We spoke to parents of older children who had lived experience of raising a child for a number of years, and they were able to reflect back on what they really needed earlier.”
The feedback gathered informed the co-design and pilot of ENVISAGE workshops.
“Our program is really designed to change the way people think, feel and talk about disability. Whether that be parents themselves, service providers or community members,” Laura said.
“It’s thinking about all the things children can do - and what they love to do - and what they’d like to do into the future.”
A series of five workshops offers a forum for families to navigate complex challenges, support each other and thrive by taking a strengths-based approach. Discussions are co-facilitated by a trained caregiver with lived experience (parent-peer), and a qualified early childhood professional.
Laura says the program is evidence-based in two ways:
“We measured things like what was their sense of family empowerment, how confident were they in parenting their child and their family functioning. On all of those measurements we saw improvements… and those improvements have been maintained after 12 months.”
Feedback from one parent described ENVISAGE like ‘coming up for air’ after many years of focusing on their childrens’ diagnoses, therapies and fears for their futures: “My family have undoubtedly felt the flow-on benefits of me doing the ENVISAGE program. It has brought joy back into our journey, I don’t feel fearful now, I feel lighter and hopeful.”
Over time, ENVISAGE has evolved into four streams to respond to the needs of: families; service providers; First Peoples participants; as well as participants who speak languages other than English.
Laura says its heartwarming that feedback from service providers suggests ENVISAGE has refocused them on listening to parents and supporting them to achieve their goals for their child and family.
Laura said the team asked themselves right from the get-go ‘who do we need to engage for this research to have the most impact?’
Initial partnerships between ACU, University of Melbourne, Murdoch Children’s Research Institute and McMaster University enabled the team to later establish additional consortium members: Perth Children’s Hospital, Royal Children’s Hospital Melbourne, Children’s Health Queensland, The Institute for Urban Indigenous Health and Kids+.
“This is a huge, combined effort from people in both Australia and Canada that has made this happen. I’m really grateful for those team members,” Laura said.
Laura then led the consortium to secure $6.9M in federal funding to expand the program and implement ENVISAGE across Australia this year.
“We partner with industry service providers in each state and territory who we train in ENVISAGE. We train both clinicians and parent-peer facilitators to co-facilitate the workshops.”
ENVISAGE has recently been named a top 3 finalist in the National Disability Service Awards for 2023 in the Excellence in Innovation category.
“We offer ENVISAGE Families and ENVISAGE First Peoples to families across Australia, with capacity to reach 2,000 caregivers by June 2025,” Laura said.
Additionally, more than half of the people employed by ENVISAGE are parents of children with a developmental concern or disability.
“We’re really committed to building capacity in families – I’m super proud we’re able to provide employment opportunities in something they’re really committed to, and care deeply about.”
Visit Service Central to access Corporate Services.
