Attempting to understand the complexities of both the NDIS and a rapidly changing disability is something no one should have to go through. But for Sydney local Angelo, this was reality.
Angelo contracted Paralytic Polio at the age of four. While Paralytic Polio attacks and permanently destroys the majority of the functioning central nervous system, Angelo partially recovered before the disease began to affect him again in his early 50s.
Now 63, Angelo has Post-Polio Syndrome, and is mostly paralysed from the waist down.
“I was in my early 50s when I finally surrendered to the fashioning of an orthotic to stabilise my balance as I was falling a bit, and a few years later I recruited the assistance of a walking stick,” he said. “A few years after that I recruited a second walking stick to keep the first one company. I didn’t permanently hit the wheelchair until a couple of years ago, when I was 60 or 61 years old.”
But with every challenge comes an opportunity. As Angelo’s disability began to degenerate, the NDIS was introduced.
“It was impeccable in terms of timing for my situation. Once all the medical assessments were completed and submitted, I then made the naïve assumption that the hardest part was over,” he laughed.
Those already on the NDIS will know its complexities, and despite Angelo being a highly educated individual, he was left perplexed.
“The jargon present with the scheme was mind-boggling,” he said.
Expected to make decisions and create goals that would influence the course of his life, Angelo became increasingly concerned about his future.
“If one has zero knowledge of the terminology commonly used within the field, one will struggle to feel comfortable that they are ticking the correct choices.
“Specifically, some of the choices I was expected to make were said to be irreversible for a whole year, yet the information made available to assist in making the correct choices was ridiculously complex to comprehend. You tend to second-guess yourself about each choice.”
Out of pure desperation, Angelo contacted the Social Worker who had assessed his case for the NDIS, and through her, he was put into contact with Living My Way.
Two years later, he is no longer battling with understanding the NDIS, nor is he overwhelmed by the decline in his mobility.
“All I can say is, thank goodness for institutions like Living My Way,” he said. “I remember my first meeting. The Support Services Manager helped stop my head from spinning.”
In the two years since Angelo has been a Member of Living My Way, the organisation has guided him through his disability and lead him to achieve progress with the NDIS.
“Within that time, I finally lost the capacity to walk. We needed some fast action on some assistive equipment,” he explained.
“While my current physical abilities are categorised as being similar to paraplegia, I still have some use of my legs whilst in the chair and I have limited use of my arms.
“I needed a manual chair that would continue to work my legs and my cardio at the same time, but with electronic vertical movement to enable access to heights not accessible through natural movement.”
Using a home office chair to move around his home up until that point, not having the correct technology was having a detrimental effect on his hands and arms, which were doing all the lifting work.
“There was such a chair available on the market – not that I would have known. Living My Way found it, sourced it, submitted it for funding and I’ve been using it for almost 12 months.”
Since then, Living My Way has assisted Angelo with home modifications including a ramp for his front veranda to street level access, widening and level-flooring access of his entrance, and bathroom shower access modification.
“Living My Way’s assistance has been immeasurable in terms of value to my daily living and functionality. They continue to assist and advise and have been a blessing.”