Every day, 2.5 million Australians care for someone with a serious disability. It’s a duty of care that comes with a huge price for families, many of whom live without support or respite – some are forced to place their teenage children into old-age nursing homes, while others are so desperate they are abandoning their children in hospitals.

As Australia’s disability plight reaches “third world” standards, Channel Nine personality Jaynie Seal is spearheading a campaign to give people with disabilities – and their carers – a better deal. And the determined Mornings presenter knows exactly what the fight is about after a tragic car accident saw her 19-year-old sister, Marty, confined to a nursing home.

“My sister went from being this incredibly vibrant, fit, young person who cycled every day, to a quadriplegic with severe brain damage, having a shunt put in her head to her stomach to drain the fluid, constant operations, medications and physio.

“After a year in the spinal ward at Royal North Shore Hospital [in Sydney], Marty was released, but she still needed 24-hour care, and there was no alternative other than placing her in a nursing home for at least six months while my parents made their house wheelchair accessible.

“I remember Marty spending her 21st birthday there and, apart from a lovely lady in her 40s with MS, everyone else was around 80 or 90. It was such a tragic situation for someone so young, already living in constant pain, not being able to shower or dress yourself and then having to live with people four times your age.”

But Jaynie says that, although Marty lost so many of her bodily functions, she never lost her sense of humour. “She would never forget anyone’s birthday and no matter how much pain she was in, she always had a smile. “After nine years, Marty developed pneumonia that didn’t respond to antibiotics. We were there until the very end. She was unconscious for the last couple of days and on high doses of morphine.

“Then, just before she passed away, she opened her eyes and looked deep into our eyes. It was her way of saying goodbye. It was an incredibly sad, but very special, moment that has led me to fight for the rights of the 7500 young people currently living in nursing homes in Australia,” says Jaynie.

“There are so many people in Australia with disabilities. This is a complete labour of love. There are no days off, there’s no pay, no superannuation, no recognition, no sick days.

“As a nation, we need to support people with disabilities by building group homes for young people through organisations like Youngcare – and also through a national disability scheme.”

Make a difference in 30 seconds

Your voice may help the NDIS (National Disability Insurance Scheme) become a reality. An NDIS would provide funding for personal support, therapy, equipment and aids, home modifications and employment training for people with disabilities.

Jaynie also urges all Australians to support Youngcare (www.youngcare.com.au) by holding an event, making a donation, or selling raffle tickets.