When Craig Maynard was in school, he didn’t think that adult deaf people existed.
“When grade six finishes, we will all be lined up in the back and they will shoot us down, and we will be dead,” he helpfully told a new classmate.
“We had no reason to think (otherwise). Either they became hearing and moved on into the hearing world, or they were killed off. So we went with the killed off. That makes sense,” he recalled. When a teacher tried to explain that there was life after primary school, she was met with blank faces.
“Yeah but you’re hearing and we’re deaf. There’s a difference there,” one student piped up. The memory is just one of many Craig has of believing his world was tiny and restrictive.
“We learn our wall, we learn our barrier - so we stick within that little thing for life, and we think ‘This is the way life’s going to be, and this is the way we’re going to be forever’”.
He said the National Disability Insurance Scheme (NDIS), a complete overhaul of Australia’s disability system, had messed with all his plans. The NDIS seeks to give people with disabilities and their families much greater choice on how their government funding is spent.
Craig meets weekly with a group of NDIS participants, carers and family members at Pathfinders Ability Links to demystify the new system and discuss what it means to them.
“It’s about expanding our little world,” Craig said. While excited about the possibilities, at first it was hard to accept.
“There were dreams I had when I was little, and I was told ‘No you can’t, because you’re deaf’. I wanted to be a policeman - can’t happen. How about fireman? Can’t happen. How about this? Can’t happen because you’re deaf,” he said.
“As you get those barriers, you learn to accept it, and that’s hard for us - it’s scary to come out of that little circle that you’ve built for something like nearly 50 years,” he said. Craig was grateful to Ability Links manager Lynn Lennon for challenging his status quo.
“At one point you could see the penny dropped with him, and it was like ‘Why am I locking myself in? Society’s finally letting me be who I want to be,’” she said.
Although he’s finding some miscommunication as the hearing NDIS employees try to understand his life, Craig said he will “beg and cry” and do whatever’s necessary to ensure his needs are fulfilled. For Craig, sign language interpreters for everything from doctor visits to his 50th birthday party, and new hearing aids are high on the list.
“It does put a little bit more power in your hands,” local mother Tammy said. Tammy and her 25-year-old high needs daughter chose not to self manage their financial plan, and are working with a service provider. She said there was now more transparency.
“I can actually go onto the MyGov account and see where my money’s being spent from my service provider. That’s something that you never used to be able to do,” she said. She said her daughter was no longer locked to one service, and could pick the best fit.
Still in the early stages, Lucy was optimistic about the future for her son, who will review his plan on Tuesday.
“It’s been daunting, all of the learning, but it’s going to give families a lot more say and choice. For younger people, it’s going to give them a much better outcome with a lot more equipment and services and independence.”
As a foster carer, Carol said the transition for her and her grandson was far from simple, and she’s still trying to find out what they can and can’t do. Coming in with a huge pile of documents, she said the group helped her make sense of it all.
“It was all in my head, going around, I didn’t know what I was doing,” she said. “I’m starting to see daylight.”
Fellow foster carers Nina and Greg agreed the learning process had been a huge hurdle.
“They’ve moved the goal posts considerably. So we’re finding a lot of our learning is redundant, and there’s always changes that you have to pick up on,” Greg said. The couple preferred the flexibility of self-managing and were looking forward to watching their 18-year-old son John become independent.
“We want holidays!” said Nina.
“We haven’t had them for 30 years,” agreed Greg.
John has mixed feelings about the changes. He’s excited about the prospect of funding to assist his dreams of becoming a jackaroo, but reluctant to learn the cooking and washing necessary for independent living. Greg and Nina are looking to using their new found flexibility to ensure John has a male helper to remind him that cooking and cleaning is not just ‘women’s work’.
Ability linker Brett Pischke was thrilled to watch the group learn together. Brett said he enjoyed watching the group’s shyer members engage more as they latched on to each new piece of information.
“That change within this group is what I’ve enjoyed most. Is seeing people blossom, knowing that they are able to achieve what they’ve always wanted for their person in their life,” he said.
“Our doors are always open within the New England and North West. We’ve got linkers in all the major towns that cover all the regional areas as well,” he said.
For anyone wishing to connect more with the disabled community, next year Craig will be running free Australian Sign Language classes at Inverell Accomodation Services. To learn more, contact Pathfinders Ability Links.
Some names in this story have been changed for privacy purposes.