When Dr David Squirrell, a deafblind advocate talks about the NDIS, he calls it the “national divorce initiating scheme”.
Squirrell, 68, needs around-the-clock support. After starting to lose his senses in his 30s, the former physician has very limited vision and uses hearing aids. He’s also lost his taste and smell.
He relies on his wife, Christina – a qualified nurse, who can sign and has certificates in disability and aged care – to look after him 24 hours a day and help him communicate when they leave the house.
“I need 24-hour surveillance,” Squirrell says. “Say if it was nighttime, if I was alone, no hearing aids in, if there was a fire, how would I know?
“I need all my meals done, I need hygiene supervision … I can’t see gas [flames], I can’t use a cooker.
“I need my pills given to me, if I drop them on the floor I can’t see them, and I don’t want my guide dog to eat them. If I am in a discussion, Christina has to help me.”
Although Christina left her job to look after him, Squirrell can’t get NDIS funding for a simple reason: they’re married.
The NDIA says the NDIS will only fund family members to provide support in “exceptional circumstances”. But Squirrell, who is vice-president of non profit advocacy group Deafblind Australia, argues because he can’t find anyone else, his situation is exceptional and his wife is best placed to care for him.
According to advocates, there is a lack of skilled workers in the deafblind community, and Squirrell has struggled to find anyone else who can provide him with the help he needs. In the last three years, he has contacted more than 20 service providers in the Adelaide region and has been rejected by every one.
The emails he received in response say they cannot adequately provide the support he needs or do not service his region.
He jokes that if he and Christina were to get a divorce, he would finally be able to fund her through his NDIS.
“Deafblind isn’t a large volume of people. And the skill base needed to support those is … even lower,” he says.
An NDIA spokesperson said the service would help try to find Squirrell a support worker. But while it carefully considered all requests for funding for family members, it said it could fund family members to provide support in “exceptional circumstances”.
Lack of skilled workforce
Justine Lorenz works alongside deafblind colleagues at the Community Disability Alliance Hunter, in New South Wales, to help run Deafblind Connect, one of the only peer-led programs in the nation.
Lorenz says the only two states where there are specific deafblind services are Victoria and Western Australia.
“There is a lack of skilled workforce for the deafblind community in general,” Lorenz says. “Interpreters have been on the national skills shortage list for over 10 years.”
She says cases like Squirrell’s are common, where deafblind Australians struggle to find suitable carers and communication guides - the name given to interpreters.
There’s a big difference between being an Auslan interpreter and a communication guide, she says, but they often get treated as interchangeable because of the shortage.
Deafblind people rely on communication guides to use tactile Auslan or finger spelling. Guides need mobility and orientation skills, so they can safely take people through spaces and communicate what’s happening around them.
“There’s a whole range of skills that are [needed] that just aren’t implemented with normal support workers – and so they are actually are putting deafblind people at risk,” Lorenz says.
“It seems simple and common sense, but it’s actually rocket science to support somebody well.”
National policy and advocacy officer at Deafblind Australia, Ben McAtamney, says there is “a serious issue of thin markets of support” for deaf-blind people.
He says they are “not asking for a rule to be broken” or “legislation change”. But they do want clarity on why Squirrell’s case isn’t seen as an exceptional circumstance, as there is no other qualified support worker near him.
“I don’t know what is more exceptional than there being no one else,” McAtamney says.
Squirrell says he is exhausted from the fight and does not understand why he isn’t afforded more agency over where he can access support.
“The issue is that the NDIS do not understand and do not cater for systemic issues across the whole of Australia with deafblind.”
