Petition seeks to end age discrimination in the disability support system

Tags NDIS Finance Accessibility Health and Wellbeing Government

Posted 1 month ago by Anna Christian

For Helen Bonynge ineligibility for NDIS means she either has to live without the disability support she needs or pay for the costly supports herself. [Source: Supplied]
For Helen Bonynge ineligibility for NDIS means she either has to live without the disability support she needs or pay for the costly supports herself. [Source: Supplied]

The Government is being called out for age discrimination written into the National Disability Insurance Scheme (NDIS) eligibility criteria.

Spinal Life Australia has started a petition in the hopes it will bring the discrimination to the attention of the Government and that the age criteria will be removed from the NDIS so that people with disability can receive the support they need, regardless of their age.

The petition’s heading is ‘Disability doesn’t discriminate, but the Government does’ and almost 20,000 people have signed it so far.

People who acquire their disability after they turn 65 are not eligible for NDIS funding, and neither are people who happened to be over that age when the NDIS rolled out in their area.

One in five Australians live with disability and almost half of them are over 65 years old - which equates to up to one in ten Australians potentially being ineligible for the NDIS  simply because they acquired their disability late in life or were already 65 when the Scheme began.

Without NDIS funding, people with disability who find themselves in this situation can only ask for a My Aged Care assessment.

In the experience of Helen Bonynge and many other Australians, the ineligibility for NDIS means they have to live without the majority of disability support they need or pay for the supports themselves as My Aged Care is not suited to their needs.

Cancer treatment caused Ms Bonynge to become a paraplegic seven years ago, but she turned 65 six weeks before the NDIS rolled out on the side of Sydney which she was living on.

If she’d been living on the other side of Sydney she would have been able to start on the NDIS in time and would now be receiving ongoing support through the NDIS.

Instead she is relying on her husband to be her carer and self-funds any other support she needs, like a new wheelchair at the cost of $14,000.

“At the moment I get precisely $635 from the Government as a continence payment,” Ms Bonynge says.

“I have friends who have equal disability to me and very equal situations and they get $80,000 a year from NDIS.

“Someone who is a quadriplegic, they need 24/7 care but they’re not given the money to have 24/7 care, they're given the money for about eight or ten hours of care a week [under My Aged Care] and the family has to pick up the rest or spend a lot of money to be able to care for that person at home.

“Someone on the NDIS could get $250,000 to be able to care for someone who’s a quadriplegic.

“We’re not asking for a million dollars, we’re asking for a bit of equity with other people that are similar to us. It makes a difference to your quality of life, it makes a difference to what your health is like.”

My Aged Care isn't designed to support people with disability

While My Aged Care can provide some funding packages to support people to live at home, the set packages are not tailored to an individual’s disability needs, says Chief Executive Officer (CEO) of Spinal Life Australia Mark Townend.

“This means many people are either going without much-needed equipment such as wheelchairs and other mobility aids, or they are forced to purchase these items themselves, on their own limited incomes and may not be able to afford what’s best for their health and wellbeing,” he says.

“We also know many of our members are relying on loved ones to help as they do not have enough funding for personal carers, which would enable them to be more independent and create less strain on partners and families.”

Ms Bonynge says the awareness campaign, which is running alongside the petition, is “extremely important”.

“We’re being discriminated against by being excluded from the NDIS,” she says.

“I think a lot of people don’t realise - a lot of my friends just assume I’m on NDIS and when they find out I’m not they assume I get the same cover on My Aged Care.”

While Ms Bonynge says she feels very fortunate to be in a position where she can self-fund most of her support and equipment, she also says there are many people facing age discrimination from the NDIS who can’t pay for their support and don’t receive enough funding through My Aged Care.

“There's a lot of people that don't feel confident to speak out and they're the ones that I fight for with this [campaign] because there's some really sad stories out there and it shouldn't be like that. We shouldn't be neglecting people because they’ve got a disability, they’re just not treated fairly at all at the moment because they’re that little bit older,” she says.

“It’s about giving it a voice and bringing it to people’s notice.”

The discrimination built into the NDIS criteria dates back to an amendment made by the Federal Government in 2013 to allow an exemption in the Age Discrimination Act for the framework around the NDIS.

At the time when the amendment was being scrutinised by the Parliament, it was recommended that the cut off age for the NDIS of 65 be reviewed after the Scheme had been operating for two years.

The NDIS Act was reviewed in 2019 but the cut off age was not a focus of the review.

While the review noted “a small number of submissions indicated the NDIS should be available to people with disability who were older than 65 after the NDIS rolled out in their area or acquired their disability after the age of 65 years”, it did not make any findings or recommendations about the issue because it was not within the scope of the review.

As part of action around their campaign, Spinal Life Australia is calling for politicians not to allow a new National Disability Strategy due in the coming months to be implemented unless it removes age discrimination from the NDIS.

Every time a person signs the petition online an email is sent to their local Member of Parliament to spread the message.

While the campaign focuses on calling for the age limit to the NDIS to be removed, Ms Bonynge said if My Aged Care funding was made equal to what was available on the NDIS it would also make an “enormous difference”, even if it remained means tested.

To sign the Disability Doesn’t Discriminate petition visit disabilitydoesntdiscriminate.com.au.