Promoting Social Inclusion
Cerebral Palsy Australia
Through its ongoing work in research and advocacy and together with its member organisations, CP Australia continues to play an important role in helping people with CP, young and old, to participate and achieve in all aspects of Australian life.
More than 33,000 people in Australia have cerebral palsy. In fact, it is the most common form of disability amongst children, with one child born with the condition every 15 hours. But despite its prevalence, there is no known cure for the condition and its cause is still indefinite.
There is, however, a light at the end of this tunnel and it is in part thanks to the good work that Cerebral Palsy (CP) Australia has done and continues to do in this space. Celebrating its 60th anniversary this year, CP Australia has left an indelible mark on society by providing a voice for cerebral palsy awareness.
Comprising 12 member organisations across the country, CP Australia provides a framework to ensure that its members work collaboratively to support people with CP and similar disorders.
“Since 1952, CP Australia has provided a national front for disability awareness, fundraising and service development for children and adults with CP in Australia,” says President Glenn Rappensberg. “We have had a successful history of fundraising and awareness and the Miss Australia Awards have raised over $100m for people with disabilities between 1955 and 1999.”
And it is largely due to CP Australia’s commitment to fundraising between the 1950s and 1990s that has led to the condition being widely known amongst Australians today. While the organisation’s focus on fundraising has diminished to make room for research, information and advocacy, it continues to play an important role in its members’ fundraising work by providing support and backing for their activities.
Each August, CP Australia and its members hold National Cerebral Palsy Awareness week to recognise the achievements of people with CP and to create greater awareness, understanding and acceptance. This year, the organisation also participated in the inaugural World Cerebral Palsy day on the 4th of September – a precursor to encourage the United Nations to recognise an official day each year to celebrate CP.
CP Australia’s members also partner with Ability First each September to facilitate “Walk With Me,” a recreational walk that aims to raise funds and awareness and to celebrate the inclusion of people with disabilities.
Glenn says that these activities are important and even though CP is the most common disability amongst children, we need to continue talking about it because “creating the awareness of the needs of people with disabilities will help them achieve their full potential so that they can take their rightful place as productive members of society.”
A muscle control disorder that affects posture and movement, cerebral palsy distorts messages from the brain causing increased or decreased muscle tension. It is a non-aggressive condition and is categorised into four main areas – quadriplegia, diplegia, hemiplegia and paraplegia.
While other disabilities such as hearing, sight or speech disorders, epilepsy or an intellectual disability may occur with cerebral palsy, the severity of the condition varies from person to person. In some cases, the condition may be fairly mild, causing only a minor disruption to a person’s life. In other cases, the disability may render a person completely physically dependent.
However, most people with cerebral palsy have a normal life expectancy and with practice, they can achieve greater control over movement, live independent lives and participate in the same activities as those who do not.
Glenn applauds Australia as a place where some of the most marginalised people have the opportunity to take their rightful place as engaged members of society. “The current political, social and economic reforms in the disability sector truly epitomise the notion that every Australian counts,” he says. However, he encourages more Australians to embrace the human rights approach to disability and in a bid to educate the wider population and promote greater social inclusion, CP Australia launched a new look website in July of last year. The website is a one-stop-shop that includes research papers, useful links and fact sheets. It also boasts a learning centre that offers resources to one and all, whether you have cerebral palsy or just an interest in learning about the condition.
But the one section that most stood out and left an impression was the “share your story” segment. As Glenn explains, “we have a ‘share your story’ section for people with CP to share their experiences, and we have found there’s been a fairly significant amount of contributions by people with CP to that section.” Reading the stories, you get an insight into the lives of those with CP and their carers.
The interest in CP is not confined to those who have the condition. In fact, CP Australia and its members are highly regarded in the broader community. “We know this through the high level of usage on our website, by the fact that our submissions on policies are cited by policy makers and by our success in gaining government funding to develop information resources for families of children with CP.”
There is good reason for the growing interest in CP. Based on a report commissioned by CP Australia in 2007, it was found that CP has a higher disability burden than being blind or deaf, or having asthma or diabetes. The report by Access Economics also made several key findings. For one, CP extols an annual financial cost of $43,431 per person, amounting to $1.47billion. This is 0.14 per cent of our GDP.
“CP is in the top five most costly conditions on a per capita basis of 15 conditions studied by Access Economics. And also, the prevalence rate continues to be between 2 and 2.5 births per 1000 live births in Australia. There is no pre-birth diagnosis.”
Given the condition’s high cost and pervasiveness, CP Australia understands the importance of creating a strong framework for its members, many representing a number of the oldest and largest disability providers in Australia.
Glenn emphasises CP Australia’s unwavering commitment to the promotion and advancement of the rights, interests, welfare and social inclusion of people with CP. He says that the organisation helps its members contribute positively by:
assisting in obtaining appropriate funding and support for organisations working with people with cerebral palsy and their carers
supporting and encouraging innovation and improved service practices
encouraging, conducting and supporting research concerning cerebral palsy
working with governments in developing policies for services and support of organisations working with people with cerebral palsy and their carers
2013 will bring new opportunities and challenges for CP Australia and its members. One of the most significant changes is the roll-out of the National Disability Insurance Scheme (NDIS). Under the scheme that will be finalised next year, funding which was based on historical budget allocations will now be based on actuarial assessment of need. It will recognise that disability is for a lifetime and will thus take a lifelong approach to providing care and support. In addition, NDIS is pro-choice, and will put people in control of the care and support they receive, based on need.
The scheme is now a significant step closer to becoming a reality, following the decision to launch five sites across the country. To ensure a smooth transition for its members, CP Australia has set up a website for its members to share their experiences and expertise in rolling out the NDIS in their local jurisdictions.
“The challenge for CP Australia members is remaining true to their mission under the NDIS because the NDIS is moving traditional, welfare dependent, block grant funded service providers into an environment where the individual person with the disability, their families or carers make the service purchasing decision and controls the funding.”
This will inevitably lead to a more market-driven environment and Glenn says that members need to be well prepared for this change. On its part, CP Australia will play an active role in the initial roll-out of the NDIS at the five launch sites by contributing to the NDIS consultation processes and working directly with transition agencies to iron out possible issues that may arise.
When it started, CP Australia was focussed on fundraising and it was very successful in raising money and awareness for CP. 60 years on and the organisation has evolved, taking on a more pragmatic view of its role in representing the needs of people with disabilities. Having turned its attention to research, information and advocacy, it continues to conduct in-depth research on a range of diverse categories including clinical, social inclusion and capacity building and value-added programmes and services.
In relation to the research conducted over the last 4 years, CP Australia is aiming to establish a national research programme within the next 12 months. Glenn shares the purpose of the programme, “the national research programme will focus on improving the quality of life and participation of people with CP and on developing new interventions and assessments.”
In all that it does, CP Australia remains accountable to its vital and fundamental commitment to support people with cerebral palsy to achieve their potential in the community.
It has been a big year for CP Australia, with the roll-out of the NDIS and having reached a major milestone – its 60th anniversary. And the International Day of People with Disability (IDPwD), a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and wellbeing, will mark the close of yet another fruitful year for CP Australia.
After all its success and years of being the national voice for people with CP and similar disability, I asked Glenn what he felt was the most important message for Australians. Without hesitation, he says, “social inclusion of people with disability is every Australian’s responsibility.”