VIDEO: Stopping avoidable disability deaths

SAM STUBBS:     I love surfing. I feel happy when I’m surfing. 

NAS CAMPANELLA, REPORTER: Sam Stubbs lives an active life. When the 27-year-old isn’t at the beach, he’s at his local gym.

SAM STUBBS:    I’m pretty fit. Soon I’m competing in the CrossFit Games.

NAS CAMPANELLA:  So when Sam got sick in 2025, his parents were shocked by the way doctors spoke about him.

CHRIS STUBBS, FATHER: We were obviously trying to work out what treatment was going to be needed and then they asked us, what was his quality of life. 

NAS CAMPANELLA:   It dawned on them they were being asked this because Sam was born with Down syndrome.

DEBRA JEFFERIS, MOTHER: It was almost like we had to present a resume to prove that, yeah, this person had a great quality of life. Please do everything you can.

NAS CAMPANELLA:  In the 12 years Sam has worked at his local bakery on the New South Wales South Coast, he has rarely taken a sick day.

So his colleagues knew something was seriously wrong when he was away for several weeks.

Sam had picked up a respiratory infection while on holiday with his family. When it didn’t clear up, he went to the doctor. 

DEBRA JEFFERIS:  We were told his temperature was well over 40, but because he was still walking around, which is what Sam does, I think it was probably dismissed. We weren't actually given any kind of medication or follow-up.

NAS CAMPANELLA:  Then when his condition rapidly deteriorated, his parents rushed him to their local emergency department.

He was quickly transferred to St George Hospital where they discovered he had a collapsed lung and several lung abscesses.

DEBRA JEFFERIS:  What keeps me awake at night is thinking, if we weren't there, what would have happened?

PROF. JULIAN TROLLOR, NATIONAL CENTRE OF EXCELLENCE IN INTELLECTUAL DISABILITY HEALTH:  People with intellectual disability in Australia are a group who experience one of the greatest health inequities of any population group.

NAS CAMPANELLA: People with intellectual disability are twice as likely to suffer a preventable death. Research shows 38 per cent of deaths could’ve been avoided with better health care.

For the rest of the population, it’s 17 per cent.

JULIAN TROLLOR:  A repeated pattern I've seen is that clinicians misinterpret symptoms expressed by a person with disability.

NAS CAMPANELLA:  The disability royal commission held multiple hearings on the treatment of people with intellectual disability in the health system, hearing stories of neglect from parents.

TONI MITCHELL, STATEMENT TO DISABILITY ROYAL COMMISSION:  Joshy spent the night crawling around the bed in excruciating pain. The doctors refused to listen to me.

CHRISTINE REGAN, STATEMENT TO DISABILITY ROYAL COMMISSION:  He said, ‘Oh, look, she has Down syndrome. How hard are you going to try?’ I felt like I had been punched in the gut.

NAS CAMPANELLA:  As a result, the Department of Health committed to valuing and respecting people with intellectual disability. 

JULIAN TROLLOR:  There are some simple things that we can do to make a big difference. One of those is to train all our future healthcare professionals and our current healthcare professionals with the skills and knowledge they need to make those reasonable adjustments in healthcare. 

NAS CAMPANELLA:  Down Syndrome Australia runs a training course to do just that – the Health Ambassadors program.

EMILY PORTER, HEALTH AMBASSADOR, DOWN SYDROME AUSTRALIA:  Speak to me, not my support person. 

NAS CAMPANELLA:  Emily Porter is one of the program’s 10 ambassadors, along with her colleague Amelia.

EMILY PORTER:  I am a grown woman, and I want to be a part of making decisions. 

DARRYL STEFF, DOWN SYNDROME AUSTRALIA:  One of the most powerful things about this program is that it does centre the person with intellectual disability as part of the solution. They are the expert in this space.

NAS CAMPANELLA:  The Department of Health wrote to Down Syndrome Australia in February saying it would not continue to fund the program beyond June 30 2026.  

EMILY PORTER:  Would you like a tea?

NAS CAMPANELLA:  I spent an afternoon with Emily to find out what healthcare professionals will miss out on if she loses her job.

EMILY PORTER:  I think it's really is important to respect me as a person with a disability.

NAS CAMPANELLA:  She recently celebrated 14 years of marriage.

EMILY PORTER:  Mike and I really love being together because we like magnets, we can't let go from each other.

NAS CAMPANELLA:  When she talks to medical professionals, she tells them about a time she went to hospital and was not allowed to have her husband with her.

How does that make you feel? 

EMILY PORTER: Nervous. Sometimes I like holding my husband's hands. I always did that.

NAS CAMPANELLA:  She wants medical professionals to make adjustments to help their patients feel comfortable and included.

It’s a lesson we learnt when filming with Emily as well. We set up a formal typical formal interview– with bright lights and unusual equipment creating an environment that, much like hospitals, wasn’t putting anyone at ease.

EMILY PORTER:  I had bad experience with health workers not listening to me.

NAS CAMPANELLA:  It wasn’t the best way to help Emily express herself.

Do you want to take a break Em?

EMILY PORTER:  No, I just want to hold my husband’s hand.

NAS CAMPANELLA:  But in a more relaxed environment she could explain why doctors should centre her in discussions about her healthcare.

EMILY PORTER:  I am the patient. 

NAS CAMPANELLA:  They should be talking to you, shouldn't they? 

EMILY PORTER:  Yeah, they're maybe talking to me. 

NAS CAMPANELLA:  The government now says it is considering extending the funding for another 12 months.

It costs about $350,000 to run. The government has also spent $4.7 million on developing training materials.

Advocates say they are not being used. 

JULIAN TROLLOR:  All the know-how to train and equip current and future health professionals is there. We now need this mandated. 

NAS CAMPANELLA:  NSW Health said its staff are trained to respectfully work with patients with disability but acknowledged there is always room for improvement.

Sam has fully recovered.

His parents acknowledge there are good medical professionals out there. They don’t think they should have to tell doctors, but want them to know this:

SAM STUBBS:    I'm happy because I got a good life.