People with intellectual disability continue to receive substandard healthcare as program to train doctors risks closure

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. 

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

"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."

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. 

"I was scared," Sam told 7.30.

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 was worried," Sam said.

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. 

'Include me' in decision making

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. 

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."

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 to addressing some of that and it will be a real shame to lose that," he said.

Emily wants healthcare professionals to take extra time to find out what makes their patient comfortable. 

She had a poor experience of this when she was admitted to hospital several years ago. 

She wanted to have her husband with her for comfort and reassurance, but was instead separated from him. 

"I was really nervous and really uncomfortable," she told 7.30.

Intellectual disability refers to a person having cognitive differences which can impact their ability to carry out some everyday activities. 

People in this group may communicate in a variety of ways including via speech, communication devices or body language and behaviour. 

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. 

"Misinterpreting like this can have dramatic consequences," he said.

He said adjustments needed for people with intellectual disability include longer appointment times, adapting communication styles and taking feedback from trusted support people. 

It was also critical, he said, to understand a person’s baseline, such as their typical behaviour, eating habits or how they express themselves because changes might point to a condition that required further investigation.

Making training mandatory

The Health Ambassador program costs taxpayers approximately $350,000 a year. 

That funding was not being extended. 

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.

The government has also invested $4.7 million over four years to develop resources to train medical staff.  

Advocates said those resources were not being used. 

"All the know-how to train and equip current and future health professionals is there," Professor Trollor said.

Jim Simpson from the Council for Intellectual Disability said university medical and nursing courses devoted minimal time to the needs of this group.  

"What we need is for universities to embrace people with an intellectual disability in their curriculums," he said.

NSW Health said staff are trained to respectfully work with patients with disability but acknowledged there was always room for improvement. 

Sam has made a full recovery and is back in the surf, on the footy field and competing at CrossFit.

While Debra and Chris acknowledge many doctors do a fantastic job of caring for people like Sam, they want to see things improve. 

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. 

The card is a personalised document that can be used in everyday or emergency situations to indicate a person's support needs.

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. 

The card might also include details of the person’s communication style, their likes and dislikes. 

Watch 7.30, Mondays to Thursdays 7:30pm on ABC iview and ABC TV