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) Link copiedShareShare articleThe 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) “We were shocked,” his father Chris Stubbs said. 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. It wasn’t long before he was transferred to St George Hospital where he spent 11 days in the intensive care unit receiving treatment for a collapsed lung and several lung abscesses. Following grave revelations at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, the federal government recognised the urgent need to improve the standard of healthcare people with intellectual disability receive. In 2021, then Health Minister Greg Hunt made a commitment to promote access to comprehensive health assessments for people with intellectual disability, and to improve training for healthcare workers. Emily Porter and Amelia Sloan work as Health Ambassadors for Down Syndrome Australia. (ABC News: Mary Lloyd) One of the initiatives to achieve this is the Health Ambassadors Programme, run by Down Syndrome Australia, which arranges for people with intellectual disability to train medical students and mid-career professionals. In February this year, in a letter to Down Syndrome Australia the government said funding for the program would not be extended. One of the people who would lose her job if the program folded is Emily Porter, who works there as a health ambassador. Emily and her husband of 14 years were born with Down syndrome, a genetic condition that results in physical characteristics such as low muscle tone and intellectual disability. She has had good and bad experiences in the healthcare system, which she now shares at her presentations. She speaks fondly of her orthodontist who she said took the time to carefully explain procedures to her. As an adult patient, doctors should speak to her during consultations, not to her support person, she recently told a room full of nurses. “When you include me and check that I understand, you will do your job better.” Emily Porter wants healthcare workers to respect her right to make her own decisions. (ABC News: Mary Lloyd) Standard training for medical students includes only a small component about people with intellectual disability, according to Darryl Steff, CEO of Down Syndrome Australia. He said poor outcomes can be prevented by training medical staff to centre people with intellectual disability in discussions about their healthcare. “(The Health Ambassador program) goes a long way

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

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