A critical program designed to enhance healthcare for individuals with intellectual disabilities faces an uncertain future, prompting concerns about the quality of care they receive. This situation comes to light as a 27-year-old man, Sam Stubbs, experienced a harrowing medical emergency that highlighted existing systemic issues.

A Personal Crisis Highlights Systemic Gaps

Sam Stubbs, an active 27-year-old who trains for triathlons, plays Australian Rules football, and holds down a job at a local bakery, found himself in the emergency department after developing a severe respiratory infection. His parents, Chris Stubbs and Debra Jefferis, were taken aback when hospital staff inquired about his quality of life. “We felt as though we needed to prove that he has a good quality of life,” Jefferis recounted, expressing their shock at the question.

The couple realized the inquiry likely stemmed from Sam’s diagnosis of Down syndrome. When they questioned if this was being used to influence his triage, they were assured his quality of life had been assessed. “It felt like we were being told, ‘it’s OK, he’s worth saving’,” Jefferis stated. The experience left them deeply concerned about what might have happened had they not been present to advocate for Sam, who is unable to articulate his needs verbally.

The Stark Reality: Avoidable Deaths and Inadequate Care

Research from the University of New South Wales indicates that people with intellectual disabilities experience more than double the rate of avoidable deaths compared to the general Australian population. Studies suggest that improved healthcare could have prevented 38 percent of these deaths, a significant increase from the 17 percent seen in the broader population. Professor Julian Trollor from UNSW’s National Centre of Excellence in Intellectual Disability Health has witnessed “stark neglect in health care experienced by people with intellectual disability.”

Sam’s own experience nearly became another example. He described being “scared” with “gunk in my lungs and I couldn’t breathe.” Initially presenting with a high fever, his condition was not immediately recognized as critical by a doctor due to his tendency to persevere through illness. As his health rapidly declined, Sam insisted on being taken to the emergency department.

A Fight for Survival and Recognition

Sam was subsequently transferred to St George Hospital, where he spent 11 days in intensive care receiving treatment for a collapsed lung and lung abscesses. His recovery has been full, and he has returned to his active lifestyle.

Government Initiatives and Funding Concerns

Following revelations from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, the federal government committed to improving healthcare standards for individuals with intellectual disabilities. This included a pledge to enhance training for healthcare workers and promote access to comprehensive health assessments.

One key initiative is the Health Ambassadors Programme, operated by Down Syndrome Australia. This program utilizes individuals with intellectual disabilities to train medical students and mid-career professionals. However, a recent government decision not to extend funding for the program has raised significant alarm.

The Impact of Program Closure

Emily Porter, a health ambassador with Down syndrome who would lose her job if the program ceases, shared her experiences. She emphasizes the importance of direct communication with adult patients and ensuring they understand medical information. “I am a grown woman, I can make my own decisions,” Porter stated. “When you include me and check that I understand, you will do your job better.”

Darryl Steff, CEO of Down Syndrome Australia, noted that standard medical training includes only a minor component on intellectual disability. He believes the Health Ambassador program is crucial for addressing this gap and preventing poor health outcomes. “(The Health Ambassador program) goes a long way to addressing some of that and it will be a real shame to lose that,” Steff commented.

Porter also recounted a distressing hospital experience where she was separated from her husband, highlighting the need for healthcare professionals to understand individual comfort needs. “I was really nervous and really uncomfortable,” she said. “Michael and I really love being together because we are like magnets. We can’t let go from each other.”

Addressing Communication and Understanding

Professor Trollor explained that a common issue is clinicians overlooking patient expressions, attributing them to disability rather than underlying medical conditions, which can have severe consequences. He stressed the need for adjustments such as longer appointment times, adapted communication styles, and incorporating feedback from trusted support persons. Understanding a person’s baseline behavior, eating habits, and communication methods is also critical for identifying potential health issues.

Funding Uncertainty and Future Prospects

The Health Ambassador program costs approximately $350,000 annually. While funding was not initially extended, a spokesperson for the National Disability Insurance Scheme minister indicated that the Health Department is now considering a 12-month extension for the program. The government has also allocated $4.7 million over four years for developing medical staff training resources.

Advocates express frustration that these resources are not being fully utilized. “All the know-how to train and equip current and future health professionals is there,” Professor Trollor stated. “What we need now is for people to implement it… and make it mandatory.” Jim Simpson from the Council for Intellectual Disability echoed this, noting that university medical and nursing courses offer minimal focus on the needs of this population and urged universities to integrate these needs into their curricula.

A Call for Mandatory Training and Better Tools

While NSW Health maintains that staff are trained to work respectfully with patients with disabilities, they acknowledge room for improvement. Sam’s parents, while appreciative of the care many doctors provide, are advocating for systemic change. Debra Jefferis suggests expanding the National Assistance Card, currently for autistic individuals and those with acquired brain injuries, to include all people with disabilities. This personalized card could detail a person’s support needs, communication styles, and baseline health information, such as Sam’s Down syndrome, heart condition, and typical blood pressure.

The card could also include personal preferences and a statement reflecting their quality of life, such as Sam’s potential inclusion: “I’m happy, I’ve got a good life.”