“Cerebral palsy is the most common childhood physical disability, affecting one in 500 Australians. Surprisingly, there is no national strategy guiding the government, community, health professionals or educational experts.
It’s a fact that’s in sharp contrast to other conditions such as cancer, multiple sclerosis, allergies or congenital heart disease. These strategies have seen great progress for people with these conditions.
Isn’t it high time cerebral palsy had a strategy of its own?”
—- Professor Nadia Badawi AM, Macquarie Group Foundation Chair of Cerebral Palsy Research, Cerebral Palsy Alliance
A strategy to change lives
A collaboration of Australian and New Zealand organisations working in the field, are developing the first ever strategy for improving the lives of people – and their families – who are living with cerebral palsy.
Among the group are:
- Ability First Australia
- Cerebral Palsy Alliance
- Cerebral Palsy Australia
- Consumer representatives
- The Australasian Academy of Cerebral Palsy and Developmental Medicine
- The Cerebral Palsy Society of New Zealand
What started off purely as a research strategy has evolved to include treatment and social inclusion goals.
Cerebral Palsy Alliance Foundation Researcher, Ingrid Honan is ingrained in the strategy’s development.
“At a time when the National Disability Insurance Scheme (NDIS) is being rolled out nationally, we felt the timing of this strategy was really important,” says Ingrid.
“We think this strategy will be useful for NDIS planning because cerebral palsy is such a complex condition. If we can outline the common needs and supports of people with cerebral palsy across the life span, as well as common barriers, then it can guide the NDIS expectations about what to include in plans to assist people with cerebral palsy to achieve their goals.”
“The Cerebral Palsy Strategy Plan is important in building a future with successful education that leads to understanding and inclusion among society. Issues from lack of understanding occur in all areas of life from family members and friends to schools and organisations. Proper education could address the issues that arise when people have no experience with CP and no understanding of how to interact with people with CP.” — Shirley Wong, consumer representative.
Based on the wishes of most people with cerebral palsy (and their families), research will be an integral part of the plan to establish evidence-based interventions and preventative strategies.
A united voice
The group have been working together for more than a year now, determined to create a robust strategy that can act both as a voice for people with cerebral palsy, and as a tool for organisations advocating to government.
“We can advocate as individual organisations, but combined, our voice is much stronger,” says Ingrid of the collaborative effort arising from the strategy development.
By placing the views of people with cerebral palsy and their families at the heart of this strategy we can ensure Governments, disability services, health services – in fact the whole community – respond in the best way to achieve this.” — Dr Jennifer Fitzgerald, Chair, Cerebral Palsy Australia.
Ultimately, it is intended that this new strategy will:
- outline current practices and highlight domains for further improvements in the field of cerebral palsy
- provide a practical, unified advocacy tool based on research, clinical and social objectives taken from the field of cerebral palsy
- summarise common goals for organisations working across Australia and New Zealand in order to foster collaborative networks
- guide inter-departmental policy makers (particularly in the areas of healthcare, disability, education and aged care) on issues around quality, access and continuity of services and supports.
Shaping the strategy together
A draft strategy is nearing completion with an in-depth consultation process now commencing. Ingrid says that consumer engagement is critical to the success of the project.
“It is exactly why we’re inviting people to be involved in the development phase, to review sections of the document and provide feedback,” she says. “We want people living with cerebral palsy, their families, carers, practitioners, researchers, government departments, schools, colleges, funders and other support people to get involved with the consultation process.”
“We feel this is a real opportunity to get public involvement, to outline what people with cerebral palsy really want and need, and to have people take ownership of the document, endorse it, and feel like it is really their own.” she says. “We want to make sure we capture the diversity in cerebral palsy including the severity, the urban versus rural issues, the different intellectual functionings, complexities in communication, and the many other factors surrounding the complexities of cerebral palsy.”
“It started broad, but our intent is for the consultation process to help refine the current list of goals and objectives. We don’t want this to be something that people have just discussed in a room and written without involving the people who it is representing, or without incorporating the voice of people with cerebral palsy. We want this to be a document that truly provides, and represents, a voice for people with cerebral palsy,” says Ingrid.
I’ve had two children, both with different disabilities. Strategies exist for lots of conditions but up until now, a strategy has never been written for CP. Yet CP is the most common childhood disability – one child is born every 15 hours. What a wonderful step in the right direction for people with Cerebral palsy and their families. I am so happy to be part of this exciting new initiative, and hope this will change lives for the better.” — Shannon Clough, consumer representative.
The strategy is also being designed as a tool for organisations that work with people with cerebral palsy to use in advocacy for better funding, support services, access to education, access to aged-care, and continuity between aged-care and disability services. The group aim to finish the consultations by the end of 2017, with the strategy to be launched in the first part of 2018.
If you would like to be involved, please email Ingrid Honan at firstname.lastname@example.org.