A critical program dedicated to improving healthcare for individuals with intellectual disabilities faces an uncertain future, raising concerns about the quality of care this vulnerable population receives. The program, which involves people with intellectual disabilities training medical professionals, is reportedly at risk of closure due to funding uncertainties.
Substandard Care Highlighted by Personal Experience
The urgent need for improved medical training was starkly illustrated by the experience of Sam Stubbs, a 27-year-old man with Down syndrome. Sam’s parents, Chris Stubbs and Debra Jefferis, recount the alarming incident when, upon taking Sam to the emergency department with a severe respiratory infection, medical staff questioned his quality of life. This questioning, they felt, was directly linked to his Down syndrome diagnosis.
“We felt as though we needed to prove that he has a good quality of life,” Debra Jefferis stated, expressing shock at the inquiry. Her husband, Chris Stubbs, added, “We were shocked.” The couple realized the question implied a potential bias in how Sam’s condition was being assessed.
“It felt like we were being told, ‘it’s OK, he’s worth saving’,” Debra recalled. She expressed her deep anxiety about what might have happened had they not been present to advocate for Sam, noting, “What keeps me awake at night is thinking, if we weren’t there, what would have happened? Because Sam wasn’t able to talk.”
Research Underscores Preventable Deaths
Research from the University of New South Wales indicates that individuals with intellectual disabilities experience more than double the rate of avoidable deaths compared to the general Australian population. Studies suggest that enhanced healthcare could have prevented 38 percent of these deaths, a stark contrast to the 17 percent seen in the wider population.
Professor Julian Trollor from UNSW’s National Centre of Excellence in Intellectual Disability Health has observed “stark neglect in health care experienced by people with intellectual disability.” Sam’s near-miss, stemming from a respiratory infection that caused him to struggle with breathing, highlights these critical gaps.
“I was scared,” Sam recounted. “(I had) gunk in my lungs and I couldn’t breathe.” Despite presenting with a high fever, his tendency to persevere through illness meant his initial severity was not recognized by a doctor. His condition rapidly worsened, leading to his transfer to St George Hospital, where he spent 11 days in intensive care for a collapsed lung and lung abscesses.
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. A key initiative launched in 2021 was the Health Ambassadors Programme, run by Down Syndrome Australia, which employs individuals with intellectual disabilities to train medical students and professionals.
However, reports indicate that funding for this vital program is not being extended, potentially leading to its closure. Emily Porter, a health ambassador with Down syndrome, expressed the potential loss of her role and the program’s impact.
Empowering Patients in Healthcare Decisions
Emily Porter, who has experienced both positive and negative interactions with the healthcare system, emphasizes the importance of direct communication with adult patients. “I am a grown woman, I can make my own decisions,” she stated during a recent presentation to nurses. “When you include me and check that I understand, you will do your job better.” She advocates for healthcare providers to take extra time to understand patient comfort and communication preferences.
Darryl Steff, CEO of Down Syndrome Australia, noted that standard medical training includes only a minimal component on intellectual disability. He believes the Health Ambassador program significantly addresses this deficit and its potential loss would be a “real shame.”
Professor Trollor elaborated on the challenges, explaining that clinicians sometimes overlook patient expressions, attributing them to disability rather than underlying medical conditions. He stressed the need for longer appointments, adapted communication styles, and incorporating feedback from trusted support individuals. Understanding a person’s baseline behaviour and communication is also critical for identifying potential health issues.
Potential for Program Continuation
The Health Ambassador program costs approximately $350,000 annually. While funding was reportedly not being extended, a spokesperson for National Disability Insurance Scheme minister Jenny McAlister has indicated that the Health Department is now considering a plan to continue funding the program for an additional 12 months. The government has also allocated $4.7 million over four years for medical staff training resources, though advocates suggest these resources are not being fully utilized.
“What we need now is for people to implement it … and make it mandatory,” Professor Trollor urged, highlighting the availability of expertise.
Jim Simpson from the Council for Intellectual Disability pointed out the minimal time dedicated to the needs of this group in university medical and nursing courses, calling for universities to integrate these perspectives into their curricula.
Advocacy for Enhanced Support Tools
NSW Health acknowledged the need for continuous improvement in training for respectful patient care. Sam has since made a full recovery. His parents, while appreciative of the care many doctors provide, are pushing for systemic improvements.
Debra Jefferis advocates for the expansion of the National Assistance Card, currently for autistic individuals and those with acquired brain injuries, to include all people with disability. This personalized card could detail a person’s specific needs, medical conditions, baseline health metrics, and communication preferences, serving as a crucial tool in both everyday and emergency situations. For Sam, such a card could convey vital information, including his Down syndrome, heart condition, and importantly, a statement like, “I’m happy, I’ve got a good life.”
