John Chick is a fighter. Daily he fights the irreversible weakening and wasting of his muscles caused by facioscapulohumeral muscular dystrophy (FSHD). The rare disease defines how he must live but not who he is, and the 60-year-old is joining the fight to retain disability advocacy services in Taree.
Around a year ago John learned his application for funding for supports and services had been rejected by the National Disability Insurance Scheme (NDIS). The scheme supports people aged under 65 years who have a permanent and significant disability, and John believed he ticked all the boxes.
"To say you're not eligible when you know full well that you should be, well, I was pretty devastated," John said. "They nearly had to come and pick me up off the floor."
No-one came to see me, they did the assessment over the phone.John Chick
John learned how FSHD would impact his life when he around 18 years old.
"They said, do not go home and sit in a rocking chair because if you don't use it, you will lose it. So here I am today and thankfully, I'm not in a wheelchair.
"I used to work on a dairy farm and could easily pick up a 50 kilogram bag of fertiliser; these days I can't pick myself up off the floor."
At the moment there are no treatments and no cure for FSHD, and it receives no government funding for research in Australia, according to the FSHD Global Research Foundation.
For John, years of enduring muscular deterioration now sees him unable to sit in normal chairs, unable to walk unsupported, unable to lift weighted objects from the ground and unable to raise his arms above his shoulders. He lives with his parents, who are aged in their 80s, in Taree West and for now, he can still drive.
"I haven't got a lot of strength, I'm losing strength in my arms and my legs, but can still hold myself up with my legs with a walking stick. It's going downhill all the time."
John decided to fight the NDIS funding decision and gave voice to his frustration to a customer service officer at Taree Centrelink office.
"I had a bit of a go at the NDIS fellar who was handling the application and said, where do I go? what do I do? and he said, you need to get hold of a disability advocate," John said.
John acted and connected with Grant Murray of NSW Disability Advocacy in Taree, and together they worked to secure a review of the decision.
"I didn't know how to spell properly or anything when I went to school, and forms blow my head off my shoulders a bit," John said.
"As for understanding government jargon, well it is very complicated for me, but if you ask me to make a speech about something - I would not write it down - I would just talk."
By talking with Grant about his medical history, his needs now and likely future needs, they worked together to collate information to challenge the funding decision.
Grant's role in advocating John's need for supports and services resulted in the decision being reversed.
It's full steam ahead - I have got funding thanks to Grant. It's given me peace of mind and hope that I will have a better quality life.John Chick
"Without Grant my stress levels would have been through the roof, and if you get too stressed you just throw your hands in the air and walk away. I can see a lot of people not fighting the decision.
"It would impact a lot of people who need help if Grant, or the service, wasn't in Taree."
The threat to the Taree service comes from the NSW Government decision to end disability advocacy funding from June 2020, and John and Grant are stepping forward to support the #StandbyMe campaign of the NSW Disability Advocacy Alliance to secure long term NSW Government funding post 2020.
The NDIS is funded by the federal government and assisting with appeals for clients forms part of Grant's workload. He also works to assist people to navigate NSW Government funded services such as education, health and housing.
The service has been in Taree for seven years and in the last 12 months, Grant has assisted 83 clients with 92 matters in these areas.
Grant sees the NSW Government decision as "a funding disagreement between the State and federal governments."
"The NSW government is insisting that with the transition to the NDIS, the federal government will pick up responsibility for funding advocacy services," Grant said. "However, other states have indicated and acknowledged that there will be state-based disability advocacy issues."
"The NDIS is seen to be the 'be all and end all' for people with disabilities, and that's simply not the case. If the NSW Government doesn't fund state-based advocacy services and it moves to a purely federal funding model, what will happen in regional and rural areas?"
Grant describes as "the worst case scenario", the possibility of a centralised system that would see disability advocates removed from rural and regional areas, such as Taree.
"The sort of service they would receive would be telephone-based advocacy. It would not be a face-to-face relationship, it would be a long distance relationship, and that does not deliver the best outcomes.
"A face-to-face relationship with people with disabilities or mental health issues builds trust and empathy."
The personal relationship formed between John and Grant during the advocacy process is evidenced by John's choice to now stand by Grant in the fight to retain State funded advocacy services beyond 2020.
"I think the 'Stand by Me' campaign sums it up perfectly, and why I hoped John would get involved in this - we kind of stood by each other. John had all the ideas to self advocate but I helped with the procedural things and paperwork.
"We learned from, and supported each other, which backs up my advocacy approach after working in disabilities service delivery for so long. It's all about building self empowerment and self determination, and the clients building their capacity to do things for themselves. It's not about doing for, it's about doing with them ... to 'Stand by Me'."
Grant urges the community to support the NSW Disability Advocacy Alliance #StandbyMe petition on change.org and to communicate the need for ongoing NSW Government funding beyond 2020 to Member for Myall Lakes, Stephen Bromhead.
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Contact journalist Ainslee Dennis if the Taree office of NSW Disability Advocacy has helped you, or a family member, to access disability supports and services from the State or federal government. Phone 0447 037 614.
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