The abilities of people who are living with cerebral palsy vary tremendously. People with Cerebral Palsy may be unable to walk, communicate, or eat without assistance. Conversely, they may be an athlete who uses a brace intermittently, or they may have abilities that lie anywhere in between these two extremes.
The impact that Cerebral Palsy has on a person’s body cannot be predicted. Medical opinion is that the condition does not progress. This means the brain damage itself will not worsen or change over time. However other issues (post-impairment syndrome) also occur and have an impact on a person’s life. These include increased muscle spasm, fatigue, loss of mobility, osteoarthritis, and chronic pain.
Stella, the youngest of eight children, was born in the swinging 60s in Redmarley, Gloucestershire, England. Half a lifetime and half a world away. The only member of the family with a disability, Stella was brought up by loving parents, who had the same expectations of her as they did her siblings. Stella’s disability was considered an inconvenience and not something that would stop her from achieving what she wanted to do. This has been Stella’s lifelong mantra.
When Stella was a child, the family made a decision to emigrate to Australia. Stella had a problematic childhood torn between a loving family and a bureaucratic system that put people into boxes regardless of the situation and capability. The family had settled in Bendigo, however, because of her disability and lack of the local resources, Stella was sent to a “special school” in Melbourne.
Back in the seventies, educating children with special needs in regular schools was a new concept. Children with disabilities were excluded from some public schools and many children with disabilities who went to school did not receive an education that was appropriate to their capabilities or needs. Despite this, Stella did continue her education in a mainstream high school. However, because of her disability, she was bullied to such a degree it was recommended she leave. Different times indeed!
Following this episode, Stella was given two options, to take a disability pension or to receive vocational training and enter the workforce. Stella was determined to live as normal life as she could and consequently chose the second option.
For the last 30 years, Stella has led that life, carving out a successful career across a number of roles including working in hospital administration in Bendigo. It is here she met her husband Andrew. The couple have two children, now aged 23 and 21 and have finally settled into their dream home in Melbourne.
Unfortunately, Stella’s CP has taken a toll on her body. “It is as if I am running a race and can never stop, my muscles are continually tense.” This has manifest itself in the total loss of use in one of her hands which remains permanently clenched. On top of this, a deep vein thrombosis in 2018 has further left Stella unable to walk.
The impact has been devastating. From being an independent person with a disability who was living a rich and full life, Stella now needs assistance in many of her daily activities. She requires specialist treatment and support.
Stella was assured that her needs would be met when she first went onto the NDIS after a lifetime of independent living and contribution.
“I love the concept of the NDIS providing independence and choice, however, the reality falls well short. Because of the shortage of specialist providers, I was not able to access all the support I required last year. Hence the funding in my new NDIS package was reduced based on these limited services. No consultation, no negotiation and because of the continual changes in personnel I cannot find the right person to talk to who can work with me to resolve the problem.”
The fact that Stella self manages her funds (decides independently who will provide her services and manages the payments) has also closed doors. “Some providers have rejected my requests for specialist support because they want to control the financial aspects of my package.” She believes the guiding principle of the NDIS – choice and independence – are not being realised in the real world.
Independent Disability Services has proven to be the exception to the rule. According to Stella “They provide direct support along with community engagement and do it well. I still find it daunting to let strangers into my home. It helps that IDS always try to provide people who are known to me. I have an excellent relationship with Kylie, my Client Relationship Officer and the direct support staff IDS provide who are very encouraging and understanding. IDS seem to be working the way NDIS intended.”
Stella is hopeful that her support package will be reassessed despite the difficulties she faces, in getting through to the NDIA and the revolving door of staff. She is, however, concerned that many providers have not changed the ways they operate, and still want the total control over their clients’ finances and support provision, flying the face of everything she believes the NDIS stood for.
“We have come a long way. There are, however, further challenges to overcome if people with a disability are really able to achieve all they can and be given the opportunity to live the life they choose.”