After years of doing the most she could as an individual, Bobbie English is overjoyed with the launch of a $250,000 media campaign to remove the age discrimination stopping people over 65 having access to the National Disability Insurance Scheme (NDIS).

Spinal Life Australia Chief Executive Officer, Mark Townend, who is leading the national campaign, says an amendment to the Age Discrimination Act when the NDIS was brought in made it lawful to refuse funding to people who become disabled over the age of 65.

Long time Kiama Lions members, Chris and Bobbie were given the responsibility for choosing where $20,000 raised by the Club to help research into spinal cord injuries should be directed. They chose the Lions Australia Spinal Cord Fellowship and the Spinal Cord Injury Recovery Research Program at the University of Technology Sydney’s Centre for Neuroscience & Regenerative Medicine. They are shown here presenting the cheque to Professor Bryce Vissel.

“Disability can impact anyone at any time and doesn’t discriminate, so why should age matter? It is unfair, unjust, and unacceptable, and it must end now.

“It is unconscionable that a younger person with the same spinal cord injury, can qualify for the NDIS and receive a funding package of up to $250,000 a year while older Australians struggle to afford care, wheelchairs, equipment, and other support. At Spinal Life Australia we hear these heart-breaking stories every day.”

44.5 per cent of the one in five Australians, approximately 4.4 million people, living with a disability are over 65.

They are excluded from the NDIS, and are forced onto the My Aged Care Scheme, which provides a maximum of $52,000 a year in support packages and has a waiting list of up to 18 months.

Bobbie’s husband Chris, who became a quadriplegic through a freak accident when he was 69, only qualified for a Level 4 My Aged Care package.

“When I told one of my friends this she burst out crying, as this is what she gets. It only pays for cooking, cleaning, being taken shopping and going on social outings,” says Bobbie.

”How can a high level disabled person manage on Level 4 funding?”

Bobbie says they were lucky to have family and friends who helped care for Chris, who passed away last year, and that she doesn’t know how they would have coped without them rallying around to provide 24 hour care.

“I had to stop work, because I didn’t want Chris to be alone,” says Bobbie.

“There is no way I could have put Chris in a facility, because of the experience we had in hospital when I wasn’t there.”

Chris and Bobbie’s situation achieved national prominence with a story on the 7.30 Report in December 2020.

Bobbie and Chris with some of the collected petition forms

She is concerned for all the families who have already found themselves in this nightmare situation, where the costs and responsibility of looking after their disabled relatives falls to them.

“So many people have contacted me asking me to lobby for them - it is heartbreaking to hear their stories. Just think how you would cope if it happened to someone you loved.”

The discrimination also applies to people who have been on NDIS, but turn 65.

“It is just not fair,” she says.

“The thinking behind granting the exemption to the Age Discrimination Act was that people could live off their superannuation, but that doesn’t last long in these circumstances.”

Bobbie has just returned from a trip to Canberra with the Spinal Life Australia CEO to launch the campaign, where she says they had productive meetings with Zali Steggle MP (who presented a petition with 19,000 signatures to the House last year), Senator Jordan Steele-John, Stephen Jones MP and advisers from Bill Shorten, Andrew Wilkie and others. Mr Townend also secured a last minute appointment with a representative of the NDIS Minister, Linda Reynolds.

The campaign is asking people to add their voice to the call to the end age discrimination. Each website sign-up triggers an email to the person’s local Federal MP calling for:

1. NDIS Minister Linda Reynolds to amend the legislation to end age discrimination
2. support for a Private Member’s Bill to stop people over the age of 65 being legally excluded
3. the immediate adoption of two key Aged Care Royal Commission recommendations that address equity for people.

Disability advocate Senator Steele-John is going to launch his own campaign to get the situation fixed, and will be using the experiences of the English family to highlight the cause.

Those wishing to add their name to the campaign should go to www.disabilitydoesntdiscriminate.com.au