Written by Wade Costley
Cerebral palsy (CP) is the most common childhood-onset physical disability in the world and there are an estimated 50 million people with cerebral palsy globally. Cerebral palsy is a lifelong, permanent neurological disability that is non-reversible, with support needs that evolve across the life course: through childhood, education, the transition to adulthood, working life, and ageing.
Over 37,000 people have cerebral palsy in Australia and approximately 75% of them are adults. Approximately half of those with CP are on the NDIS, a scheme which has enabled many people with CP to participate in everyday life.
The fact that 75% of people with cerebral palsy are adults is significant, because despite the specific brain injury resulting in cerebral palsy being static, the associated neuromusculoskeletal impairments can worsen and hence influence the presence of premature symptoms of ageing in adulthood. Decline of mobility and function is most frequently reported when adults with CP are in their 30’s and 40’s, with the median age for those with bilateral CP being 37, and those with unilateral CP being 52. For many adults with CP, these symptoms begin to occur when they’re busy raising families and/or building careers.
The NDIS plays a crucial role in helping people with CP maintain their health and independence throughout their lifespan, which enables them to lead ordinary lives and to participate in the community.
As I age with cerebral palsy and increasingly experience the premature symptoms of ageing, the NDIS plays an important role in my life as well. The NDIS makes it possible for a physiotherapist to work with me to co-design an exercise program which helps me maintain my overall mobility and function whilst minimising pain and fatigue. The NDIS makes it possible for an occupational therapist to perform a functional capacity assessment to ensure that I can be as safe as possible and independent in my own home. The NDIS allows me to buy a walking frame so that I can continue to walk as safely as possible outside the home and continue to participate in the community. The NDIS provides funding for rideshares to my appointments and meetings since public transport is often inaccessible or unsafe using my walking frame.
The proposed cuts to the NDIS would be detrimental to the CP community. For example, the ABC’s reporting on a recent Senate hearing stated that treasury modelling showed “that almost 60 per cent of those overall savings would come from the cutting of participant community participation and therapy budgets ($13.2 billion over four years) and tightening access to the scheme through a new functional capacity test ($9.3 billion).”
The proposed reductions in funding for Social, Community and Civic Participation (SCCP) and therapy budgets are very concerning, given that this funding is vital for people with CP to safely perform daily activities, to go to school, to work or volunteer, to maintain their health and function, to support independence, and to otherwise effectively participate in society. A new functional capacity test raises concerns as well, as it would need to recognise that CP is indeed a lifelong and complex disability that effects everyone differently, and that their needs may likely change many times across their overall lifespan.
These support reductions would have a significant negative impact on my overall quality of life as well. Without appropriate funding for physiotherapy, my mobility and overall function would gradually worsen and heighten the risk of falling more frequently and potentially causing significant injury. My pain would increase and I would become fatigued more often, and my overall mental health would likely suffer as a result. I would become less productive and more reliant on others, making me less independent overall and making it more difficult to interact with the community, especially with the proposed cuts to SCCP funding.
As a taxpayer, a person with cerebral palsy and an NDIS participant, I strongly agree that we need reform to ensure that the NDIS is sustainable into the future. However, the majority of these reforms should not come at the expense taking away the very supports that enable people with significant and lifelong disabilities such as cerebral palsy to lead productive lives and promote their inclusion and participation in society. The government should instead re-evaluate other aspects of the scheme to determine where significant savings can be achieved, such as severely cracking down on corruption, fraud and non-compliance, along with eliminating excessive overheads, overcharging and wasteful spending. (In fact, during the last financial year, the NDIA spent $60 million on external lawyers to fight participants at the Administrative Review Tribunal where 73% of the NDIA’s decisions were overturned. Furthermore, approximately $3.7 billion in payments, which represents 8% of the total made last financial year, were deemed inappropriate. ) In addition, the future sustainability of the NDIS should include a sensible provider registration process which would be mandatory for large and mid-size disability support providers, along with continuous regulation of all providers to ensure that people with disability are sufficiently supported and not exploited. A sustainable NDIS also needs to admit only people with significant and permanent disability, as initially intended.
NDIS participants with significant and lifelong disability and their families need to have confidence that the scheme will be there for them in the future. An effective and sustainable NDIS also needs to be one that is fair, ethical, flexible, straightforward, responsive, and enables people with disability to lead real lives and contribute to society to the best of their ability. This will be a win-win for everyone in Australia, disabled or not.
• Walking function, pain, and fatigue in adults with cerebral palsy: a 7‐year follow‐up study – OPHEIM – 2009 – Developmental Medicine & Child Neurology – Wiley Online Library
• Government accused of misleading public on NDIS cuts in heated Senate hearing – ABC News
• Disability community says the NDIS is ‘fighting the wrong battles’ over funding plans at review tribunal – ABC News
• Billions of NDIS funds lost to ‘integrity leakage’ last year, executive tells parliamentary hearing – ABC News
