Sam went to the ED needing treatment. His parents were asked about his quality of life

Sam Stubbs won a gold medal at the Crossfit Oceania Championship on the Gold Coast. (Supplied)

The day Sam Stubbs decided he was so unwell he needed to go to hospital was the day before he was due to do a triathlon.

And right up until the point that his parents, Chris and Debra, took him to their local emergency department, he was insisting he could still race the next day.

The 27-year-old trains several times a week, plays for his local Australian Rules football club and has seldom missed a shift working at the local bakery.

Sam has returned to surfing after his illness. (ABC News: Billy Cooper)

So when a staff member at the hospital asked his parents about Sam’s quality of life, they were taken aback.

"We felt as though we needed to prove that he has a good quality of life," his mother Debra Jefferis told 7.30.

Debra Jefferis wants medical staff to take the time to understand their patients. (ABC News: Supplied)

Desperately worried about their son’s deteriorating condition, it dawned on them the question had been posed because Sam was born with Down syndrome.

When they enquired whether that fact was being used to triage him, the couple say they were assured the medical team had established that Sam had a good quality of life.

"What keeps me awake at night is thinking, if we weren't there, what would have happened? Because Sam wasn't able to talk."

Chris Stubbs trains with his son, coaches his team and is one of his strongest advocates. (ABC News: Mary Lloyd)

People with intellectual disability experience more than twice the rate of avoidable deaths, compared with the rest of the Australian population, according to research from the University of New South Wales

Those studies show better healthcare could have prevented 38 per cent of deaths experienced by people with intellectual disability, when it was 17 per cent for the rest of the population.

“I've seen examples of stark neglect in health care experienced by people with intellectual disability,” said Professor Julian Trollor from UNSW’s National Centre of Excellence in Intellectual Disability Health.

Sam almost became one of those examples, after picking up a respiratory infection.

Sam Stubbs is part of the team that produces thousands of pies at his local bakery. (ABC News: Mary Lloyd)

Debra says Sam initially presented to a doctor with a temperature of 40 degrees, but because he tends to push through feeling unwell, the doctor did not recognise how sick he was.

When his condition rapidly deteriorated, Sam decided his parents should rush him to their local emergency department.

I