Jex Truran-Lakaev is Deafblind and when he moved to regional New South Wales a decade ago, found it hard to socialise.
So, in 2015 he started the Hunter Deafblind Project in Newcastle for locals who had hearing loss, vision impairment or both.
“As Deafblind individuals, we’ve all got very similar experiences, but [we had] no real place that we could go and be together,” he said.
Jex Truran-Lakaev founded the group in 2015. (ABC News: Billy Cooper)
The group started out mostly hosting social gatherings like dinners and sporting events.
But over time it became much more than a just place for a very isolated community to make connections.
Mr Truran-Lakaev said it was one of the only places his community could access information about important issues.
He said during the COVID-19 pandemic, there were options for people who were deaf or blind to access critical information, but not both.
Blind people could listen to updates on radio or TV and Deaf people were able to see captions and Auslan interpreters.
“But for those of us who are Deafblind, neither of those things were accessible. We went without all of that critical information,” he said.
Many members of the group communicate via tactile sign language – where the Deafblind person sits opposite the interpreter and places their hands on top of the interpreter’s to feel the signs.
(ABC News: Billy Cooper)
Instead, Deafblind group members received updates about lockdowns through the Hunter Deafblind Project.
More recently the project has hosted the fire brigade and sessions with health workers about bowel cancer screening.
Firefighters are among the various community services that present to and learn from the group. (ABC News: Billy Cooper)
When those workers hold workshops for the group, learning is a two-way street as many have not met a Deafblind person before.
“Groups like this are important to allow individuals to come together and share ideas, to have their needs met and be active citizens,”
Mr Truran-Lakaev said.
‘Once in a generation’ reforms
The federal government hopes more community-led programs like this one could help reduce spending on the National Disability Insurance Scheme (NDIS), which has been projected to cost $48 billion this financial year.
Labor has already made a number of changes to bring down costs. It hopes to reach an 8 per cent annual growth target in the coming years, down from the 20 per cent growth it inherited when elected in 2022.
Those behind the Hunter Deafblind Project believe it could provide a blueprint for how foundational supports could work elsewhere. (ABC News: Billy Cooper)
Key to realising that target are two words at the centre of generational reforms currently underway: “foundational supports”.
A recommendation of the 2023 NDIS Review, foundational supports have been pitched as a new tier of services outside the scheme, jointly funded by the federal government and states and territories.
Previous minister Bill Shorten indicated foundational supports would begin by the middle of 2025.
But as we approach the middle of the year, and as participants report an increase in cuts or reviews of their plans, foundational supports are still yet to be set up or properly defined.
A Commonwealth-state and territory funding deal for foundational supports remains unsigned, despite all parties agreeing to fund them in 2023.
“Foundational supports are a good idea. I think that’s broadly accepted, but … we don’t know what they look like yet,”
Autism Awareness Australia CEO Nicole Rogerson said.
Autistic people and children with developmental delay will be among those who will rely on foundational supports in the future and Ms Rogerson said their lack of progression had caused concern.
“The autism community is nervous because the NDIS has been a one-stop place for us to get children the services and supports they need. To be told that could be no longer true for some, builds some anxiety in those families,” Ms Rogerson said.
Nicole Rogerson says many in the disability community have questions about the rollout of foundational supports. (ABC NEWS: Billy Cooper)
However, Ms Rogerson said she would prefer governments took time to get the “once in a generation” reforms right, rather than rush them.
“There has to be some evidence behind these programs, so we’re not just allowing private and non-profit service providers to be running towards this pool of funding,” she said.
“Don’t just dole out the money … work out what good looks like and then go and determine how we’re going to deliver it. You can’t get this wrong.“
NDIS Minister Mark Butler says negotioations with the states over foundational supports remain ongoing. (ABC News: Kate Nickels)
In a statement, federal NDIS Minister Mark Butler said the funding negotiations with the states and territories would be finalised as soon as possible.
“The first work on foundational supports is children under the age of nine with mild to moderate developmental delay or autism,” he said.
“The second big piece of work … has been identified as those Australians with ongoing, usually quite severe, psychosocial disability who are not getting any support right now. We know [they] without support are bumping in and out of emergency departments, in contact with justice and police systems, are vastly over-represented in our homeless population and, frankly, deserve better.”
Mr Butler said that focus was in line with the NDIS Review’s recommendations.
A strong community
Meanwhile, the Hunter Deafblind Project has been going from strength to strength, swelling in size.
Newer members such as Melissa Henderson have found it an empowering space to come to terms with and find pride in their disabilities.
Melissa Henderson says the group helped her overcome anxieties about losing her hearing and vision. (ABC News: Billy Cooper)
Ms Henderson lost her hearing in her twenties and her vision in her thirties and said it was scary.
“When I came to this group I’d never met someone who was blind or completely Deaf before. It helped me overcome the fear of going blind,” she said.
Funding for the group was recently renewed for another 12 months.
Mr Truran-Lakaev might have moved to rural Queensland in the years since starting the group, but said he hoped it would continue long into the future.
Funding for the Hunter Deafblind Project was recently renewed for a further year. (ABC News: Billy Cooper)
“We’ve become a really solid, strong community,” he said.
“I hope this group runs forever … the more professional we can become, the more education we can give to mainstream society, who knows what will happen once we’ve done that?“
