‘We have to fight’: the over-65s challenging NDIS age exclusions

Six weeks, or 16km - that's how far Helen Bonynge fell short of qualifying for the national disability insurance scheme.

The retired counsellor was 63 when she became paralysed from the hip downwards due to radiation treatment for uterine cancer.

If Bonynge, a mother of two and grandmother of four, developed the same disability at the same age today, she would qualify for the NDIS, despite the controversial age bar banning people aged 65 and over from applying.

But Bonynge was diagnosed with paraplegia in 2015, two years before the NDIS was rolled out in her area - a twist of fate that would have major consequences for funding her care.

"I got a letter back to say I was ineligible because I was going to be six weeks too old when it rolled out in [Sydney's] inner west," Bonynge says. "Even the social workers [preparing the NDIS] plan for me were shocked - they hadn't heard [of] that before.

"I burst into tears. I was devastated. I couldn't believe it.

Bonynge is the prospective lead plaintiff in a class action being assembled by Mitry Lawyers against the alleged unlawful exclusion to the NDIS of people aged 65 and over, for which 640 senior Australians have registered so far.

The case, to be launched within weeks, seeks compensation for a decade of lower-quality disability support and, if successful, could add hundreds of millions of dollars to the annual cost of the NDIS.

Paraplegia "turns your life upside down", Bonynge says.

Her husband became her main carer - a decision that would impact her ability to get disability support funded under the My Aged Care system, the NDIS alternative for over-65s.

"They basically just looked at my husband and they put the gardening, cooking, shopping, caring hat on him and said, 'Right, well you can do all that stuff, so we don't need to give you money for that.'

"The difference between the NDIS and My Aged Care is NDIS looks at you as an individual.

Bonynge was assessed as level two in the My Aged Care system, which can be worth up to $15,000 a year.

But after the means test and provider fees, she was eligible for just $30.48 a week of government support - which "wasn't even enough money for me to pay for a cleaner", she says.

She declined, opting to pay for the costs of supports - including a $19,000 wheelchair - out of her own pocket.

For some, the difference between the NDIS and My Aged Care is starker still.

"There are people who are in bed 24/7 because they don't have enough money for carers to get them out of bed," Bonynge says.

Peter Freckleton, a member of the Post Polio Victoria board, tells Guardian Australia he applied for the NDIS two years ago, citing lifelong paralysis in both legs as a result of having contracted polio as an infant in the 1950s pandemic.

Freckleton says aged care payments were not "designed to deal with disability" - which can require big lump-sum costs for assistive technologies - forcing him to save payments over months to buy a wheelchair.

The proposed court case has two main arguments.

First, that the age bar was inconsistent with the convention on the rights of people with disabilities, which could render it invalid because the commonwealth relied on its external affairs power to legislate the NDIS.

Second, that the staggered rollout of the NDIS by state and by area could have breached the constitution's ban on discrimination based on state of residency.

Rick Mitry of Mitry Lawyers says it was a "really odd situation" that people were excluded based on different rollout dates.

Prospective plaintiffs are going without new equipment or supports, he says - for example, being forced to sleep on a 20-year-old mattress.

Another proponent of the case is a former senior public servant, Roger Beale, who had childhood polio. He says the case "has significant budgetary implications and impacts thousands of disabled people and their families".

"It could be the biggest and most morally embarrassing class action the commonwealth has faced since robodebt," he says.

The robodebt case, brought on behalf of welfare recipients who received computer-generated debt notices using unlawful income averaging, cost the commonwealth $1.8bn.

Beale estimates the cost of the NDIS exclusion at $800m a year, due to NDIS recipients receiving tens of thousands more in support on average than My Aged Care recipients.

That figure is based on an assumption that a "significant proportion" of the 140,000 people on the highest level of aged-care package are "seriously and permanently disabled and would have been eligible for NDIS support but for the age exclusion in the act", he says.

When Guardian Australia revealed the proposed class action in September, the NDIS minister, Bill Shorten, blamed the Coalition for the fact aged care had "fallen in a rut" since the NDIS was set up in 2013.

"There are people in the community who say that the quality of disability care after the age of 65 is inferior to the quality of disability care before 65," Shorten told reporters in Canberra. "I think they have a point."

"[The] NDIS, despite all of its challenges, is still a scheme that looks better for people in aged care than what they have."

Shorten said he would not comment specifically on the case but said: "There is a challenge for disability care for over 65, whether or not the solution's an NDIS - which is very expensive - or an improvement in the quality of disability care and aged care. That will be a matter for the whole of the government."

In November the minister said: "We want to make sure that people with disability who are over 65 get proper care."

A government spokesperson said: "People who acquire a disability before the age of 65 who are NDIS participants can continue to access the NDIS after the age of 65."

A total of 2,156 older Australians who received state-based disability services "were able to continue with equivalent services" through the continuity of support program.

"People who acquire a disability over the age of 65 are not eligible for the NDIS or [continuity of support]," the spokesperson said. "The government is focused on implementing reforms to the aged care system to better support this group of people."

Mitry said government suggestions that disability support in aged care could be improved were "fairly vague".

"I don't know that we're going to be able to help the members of the class through the generosity of the government. We have to fight for it, unfortunately."