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Philip survived a stroke – here’s how he and his family adapted, and their journey with the NDIS

A man smiling and holding up artwork of red and blue flowers on white paper

In January 2016, Philip had a stroke, and lost his mobility and ability to speak.

In the wake of his emergency, Philip and his family have had quite a journey to adapt to his new reality, and have done incredibly well in the face of adversity.

We interviewed his daughter Phoenix to describe his experience in the NDIS, and what his life is like today with the help of his family and supports. 

MPM: Can you tell me about your dad, and what led him to the NDIS?

Phoenix: “My dad had a stroke in January 2016. His mobility was affected, and the right side of his body was weak. He can’t talk anymore and had to quit work. Initially his swallowing was affected too so in the hospital he couldn’t eat {without intervention}, but eventually it came back. Today he needs quite a lot of support from family and his support workers.”

MPM: What does your dad’s everyday care routine look like?

Phoenix: “We usually have disability support workers come in every day. {My dad} gets assistance with waking up, getting exercise in the standing machine and having breakfast. Then he does activities like art or music therapy, exercise with a physio or watches martial arts movies. If it’s not too cold or too hot we go out for walks in his powered wheelchair, or he might want to go to the shops or visit his friends. Then he might get a massage. That’s a typical day.”

MPM: Can you tell us about his transition to the NDIS?  

“Once he came out of the hospital system {after his stroke} he went into the Home Care Package (through My Aged Care) and when the NDIS came to Melbourne he transitioned into that. He’s been in the NDIS for about 3 years and we’ve been receiving supports for his everyday living and therapies. It’s been quite a journey for him.”

MPM: Did your dad have the option to stay on the Home Care Package once the NDIS was available, and why was it logical for him to transition? 

Phoenix: “We did have the option to stay in the Home Care Package (designed for people aged 65+} but because my dad was in the younger age range we thought it was better for him to be in the NDIS where he could get the appropriate support from registered providers.”

MPM: What kind of special equipment does he use?

Phoenix: “He has a manual transfer aid machine and a Hi Lo bed in his room. We have a bath transfer, his manual and power wheelchairs, exercise equipment and an iPad. We’ve tried to use communication aids in the past but it {didn’t really work} for him so he communicates through manual body gestures like pointing and miming.” 

MPM: Was this equipment covered under his NDIS plan?

Phoenix: “Yes, most equipment is. His bed, I believe, was covered under the Home Care Package, before he was on the NDIS.”

MPM: What does your dad enjoy doing today?

Phoenix: “He likes to do a lot of art therapy like arts and crafts, watch Chinese martial arts movies and listen to music. Sometimes we ask our friend to bring her cat over and he enjoys the company of companion pets. He likes going to the shopping centre too.”

MPM: What was the process of applying for the NDIS like?

Phoenix: “There was a lot of paperwork and reports from his doctors to prove that he has a disability. We had a planning meeting and it took a few to several months to apply {for the NDIS} and get it, from memory.”

Read how to apply for the NDIS here.

MPM: Did you get any help applying for the NDIS?

Phoenix: “We looked at the NDIS website and resources, and there were workshops in a few of the organisations we came across that talked about what the NDIS is, and the application process.”

Breakout box: If you have questions about your NDIS application, or not getting the response or the outcome you wanted, you can find out where to get help with your NDIS application here.

MPM: What’s your experience with My Plan Manager been like?

Phoenix: “It’s been really helpful. I remember searching for a financial intermediary in the early stages and when we were given that option I jumped on and said ‘yes definitely’. My Plan Manager is quite well known and most of the providers know of it.  It’s just great not having to do all of the processing {of invoices} like we would if we were self-managed because I imagine it’s quite a lot. It’s good there’s an online portal where we can check invoices so it’s definitely quite helpful.”

MPM: Thank you! Is there a message that you or your dad has for people going through a similar experience?

Phoenix: “Don’t be afraid to reach out to people in similar situations or if there are any local grassroots organisations or advocacy groups. Don’t be afraid to ask a lot of questions; there’s a lot of people going through it as well. Be organised with all of the paperwork and persevere.”

We realise that the NDIS can be hard work, and it’s important for people with disability to connect with each other for help and guidance.

That’s why we’ve launched Kinora – a free online community where people with disability and their supports can get advice from each other and expert NDIS coaches.

You don’t need to be in the NDIS or an MPM client to join. Kinora welcomes anybody considering or in the NDIS.

Click here to join Kinora.

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