![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/dcc9f2e8f094cfa2f925151382d1623d.jpeg\")
<\/p>\nThe 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.\u00a0<\/p>\n
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.\u00a0<\/p>\n
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.\u00a0<\/p>\n
<\/p>\n
Sam has returned to surfing after his illness. (ABC News: Billy Cooper)<\/p>\n
So when a staff member at the hospital asked his parents about Sam\u2019s quality of life, they were taken aback.\u00a0<\/p>\n
\u201cWe felt as though we needed to prove that he has a good quality of life,\u201d his mother Debra Jefferis told 7.30.\u00a0<\/p>\n
![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/32e171645483b64e92da34ce1be76da2.jpeg\")
<\/p>\n
Debra Jefferis wants medical staff to take the time to understand their patients. (ABC News: Supplied)<\/p>\n
\u201cWe were shocked,\u201d his father Chris Stubbs said.\u00a0<\/p>\n
Desperately worried about their son\u2019s deteriorating condition, it dawned on them the question had been posed because Sam was born with Down syndrome.<\/p>\n
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.\u00a0<\/p>\n
“It felt like we were being told, ‘it’s OK, he’s worth saving’,” Debra said.<\/p>\n
“What keeps me awake at night is thinking, if we weren’t there, what would have happened? Because Sam wasn’t able to talk.\u201d\u00a0<\/p>\n
![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/48959f06bef9f12be4c4a9b372aaaa17.jpeg\")
<\/p>\n
Chris Stubbs trains with his son, coaches his team and is one of his strongest advocates. (ABC News: Mary Lloyd)<\/p>\n
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\u00a0<\/p>\n
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.<\/p>\n
\u201cI’ve seen examples of stark neglect in health care experienced by people with intellectual disability,\u201d said Professor Julian Trollor from UNSW\u2019s National Centre of Excellence in Intellectual Disability Health.\u00a0<\/p>\n
Sam almost became one of those examples, after picking up a respiratory infection.\u00a0<\/p>\n
\u201cI was scared,\u201d Sam told 7.30.\u00a0<\/p>\n
“(I had) gunk in my lungs and I couldn’t breathe.”![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/3af06e1ca54eec98288428fc8feb835d.jpeg\")
<\/p>\n
Sam Stubbs is part of the team that produces thousands of pies at his local bakery. (ABC News: Mary Lloyd)<\/p>\n
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.\u00a0<\/p>\n
When his condition rapidly deteriorated, Sam decided his parents should rush him to their local emergency department.\u00a0<\/p>\n
\u201cI was worried,\u201d Sam said.\u00a0<\/p>\n
It wasn\u2019t long before he was transferred to St George Hospital where he spent 11\u00a0days in the intensive care unit receiving treatment for a collapsed lung and several lung abscesses.\u00a0<\/p>\n
‘Include me’ in decision making<\/p>\n
Following grave revelations at the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability<\/a>, the federal government recognised the urgent need to improve the standard of healthcare people with intellectual disability receive.\u00a0<\/p>\n 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.\u00a0<\/p>\n Emily Porter and Amelia Sloan work as Health Ambassadors for Down Syndrome Australia. (ABC News: Mary Lloyd)<\/p>\n 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.\u00a0<\/p>\n In February this year, in a letter to Down Syndrome Australia the government said funding for the program would not be extended. \u00a0<\/p>\n One of the people who would lose her job if the program folded is Emily Porter, who works there as a health ambassador.<\/p>\n 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.<\/p>\n She has had good and bad experiences in the healthcare system, which she now shares at her presentations. \u00a0<\/p>\n She speaks fondly of her orthodontist who she said took the time to carefully explain procedures to her.\u00a0<\/p>\n As an adult patient, doctors should speak to her during consultations, not to her support person, she recently told a room full of nurses.\u00a0<\/p>\n “I am a grown woman, I can make my own decisions,” she said.<\/p>\n \u201cWhen you include me and check that I understand, you will do your job better.\u201d\u00a0 \u00a0<\/p>\n Emily Porter wants healthcare workers to respect her right to make her own decisions. (ABC News: Mary Lloyd)<\/p>\n Standard training for medical students includes only a small component about people with intellectual disability, according to Darryl Steff, CEO of Down Syndrome Australia.\u00a0<\/p>\n He said poor outcomes can be prevented by training medical staff to centre people with intellectual disability in discussions about their healthcare.\u00a0<\/p>\n \u201c(The Health Ambassador program) goes a long way to addressing some of that and it will be a real shame to lose that,\u201d he said. \u00a0<\/p>\n Emily wants healthcare professionals to take extra time to find out what makes their patient comfortable.\u00a0<\/p>\n Emily and Michael Porter have been married for 14 years. (ABC News: Mary Lloyd)<\/p>\n She had a poor experience of this when she was admitted to hospital several years ago.\u00a0<\/p>\n She wanted to have her husband with her for comfort and reassurance, but was instead separated from him.\u00a0<\/p>\n \u201cI was really nervous and really uncomfortable,\u201d she told 7.30.<\/p>\n “Michael and I really love being together because we are like magnets. We can’t let go from each other.”<\/p>\n Intellectual disability refers to a person having cognitive differences which can impact their ability to carry out some everyday activities.\u00a0<\/p>\n People in this group may communicate in a variety of ways including via speech, communication devices or body language and behaviour.\u00a0<\/p>\n Professor Trollor said a repeated pattern he has seen is clinicians overlooking what a patient is expressing because they assume it is related to their disability instead of the underlying medical condition.\u00a0<\/p>\n \u201cMisinterpreting like this can have dramatic consequences,\u201d he said.\u00a0<\/p>\n Emily and Michael Porter provide each other support and comfort. (ABC News, Mary Lloyd)<\/p>\n He said adjustments needed for people with intellectual disability include longer appointment times, adapting communication styles and taking feedback from trusted support people.\u00a0<\/p>\n It was also critical, he said, to understand a person\u2019s baseline, such as their typical behaviour, eating habits or how they express themselves because changes might point to a condition that required further investigation.<\/p>\n Making training mandatory<\/p>\n The Health Ambassador program costs taxpayers approximately $350,000 a year.\u00a0<\/p>\n That funding was not being extended.\u00a0<\/p>\n However, a spokesperson for National Disability Insurance Scheme minister Jenny McAlister told 7.30 the Health Department is now considering a plan to continue funding the program for another 12 months.<\/p>\n The government has also invested $4.7 million over four years to develop resources to train medical staff. \u00a0<\/p>\n Advocates said those resources were not being used.\u00a0<\/p>\n \u201cAll the know-how to train and equip current and future health professionals is there,\u201d Professor Trollor said.<\/p>\n “What we need now is for people to implement it \u2026 and make it mandatory.” Sam Stubbs (middle) kicked the first goal of the season for his Australian Rules football club. (ABC News: Mary Lloyd)<\/p>\n Jim Simpson from the Council for Intellectual Disability said university medical and nursing courses devoted minimal time to the needs of this group. \u00a0<\/p>\n \u201cWhat we need is for universities to embrace people with an intellectual disability in their curriculums,\u201d he said.<\/p>\n NSW Health said\u00a0staff are trained to respectfully work with patients with disability but acknowledged\u00a0there was always room for improvement.\u00a0<\/p>\n Sam has made a full recovery and is back in the surf, on the footy field and competing at CrossFit.<\/p>\n Sam Stubbs trains several times a week and competes in CrossFit events. \u00a0 (ABC News: Mary Lloyd)<\/p>\n While Debra and Chris acknowledge many doctors do a fantastic job of caring for people like Sam, they want to see things improve.\u00a0<\/p>\n Along with providing training to GPs, Debra wants to see the National Assistance Card introduced for autistic people and those living with acquired brain injuries expanded to include all people with disability.\u00a0<\/p>\n The card is a personalised document that can be used in everyday or emergency situations to indicate a person’s support needs.<\/p>\n As an example, a card for Sam would reflect he has Down syndrome, and a heart condition, but more importantly his baseline levels such as usual blood pressure and fitness.\u00a0<\/p>\n Sam Stubbs says surfing makes him happy and that he is pretty good at it. (ABC News: Mary Lloyd)<\/p>\n The card might also include details of the person\u2019s communication style, their likes and dislikes.\u00a0<\/p>\n Or in Sam\u2019s case a statement like: \u201cI\u2019m happy, I\u2019ve got a good life.\u201d\u00a0<\/p>\n Watch 7.30<\/a>, Mondays to Thursdays 7:30pm on ABC iview<\/a> and ABC TV<\/p>\n Contact 7.30<\/p>\n![\"Two](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/017043fbc1f0321a00b692eec78c4ea4.jpeg\")
<\/p>\n![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/7ac3d3ae358089b4604d3392a10870df.jpeg\")
<\/p>\n![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/ccdb631b20529df77aeb60202fcf66d4.jpeg\")
<\/p>\n![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/73701095370fcfda58557c361b2ce3f3.jpeg\")
<\/p>\n![\"Three](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/1278fe8cfd16bf8cbb23abc22f79d277.jpeg\")
<\/p>\n![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/ac357de8318529a577e448953fc57bb2.jpeg\")
<\/p>\n![\"A](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/06\/1f7d3e5baa383d11214bd2dcda12d092.jpeg\")
<\/p>\n