Improving care for people with intellectual disability

How one general practice is modelling better care for people with intellectual disability

Patient Dazza is interviewed for a Brighton Regional Doctors video

When Rosie takes her son Dazza to healthcare appointments, one thing stands out.

“A lot of places we go to, they talk to him like he doesn’t understand,” she says. “But he does understand—only too well.”

Dazza has an intellectual disability, and Rosie says the difference between a good healthcare experience and a poor one often comes down to something simple: whether people take the time to see the person first. Dazza is passionate about the Carlton Football Club, and will talk anyone’s ear off about the team’s recent progress in the AFL. He is also quick with a smile or a joke for anyone lucky enough to meet him. It’s clear he feels welcome and seen by the staff at his usual practice, Brighton Regional Doctors.

People with intellectual disability experience significantly poorer health outcomes than the general population and often face barriers accessing appropriate healthcare. Communication difficulties, sensory challenges, fragmented care and assumptions made by healthcare professionals can all contribute to inequitable outcomes.

One of the biggest risks is ‘diagnostic overshadowing’—when symptoms or behaviours are incorrectly attributed to a person’s disability rather than investigated as a separate health issue

Brighton Regional Doctors GP Dr Robbie Luelf says this can happen unintentionally when clinicians become too focused on an existing diagnosis.

“You might assume behavioural difficulties are because of autism,” he says, “when there could actually be anxiety, depression or ADHD that should be managed differently.”

These assumptions can delay diagnosis, contribute to missed care and prevent people from receiving appropriate treatment. But healthcare professionals can make a significant difference through relatively small, practical adjustments. Communication is one of the most important changes.

Speaking directly to the patient, using plain language, focusing on one topic at a time, using visual communication tools and allowing extra time for processing can help people feel included in their own care. Reception staff also play a critical role in creating a safe and accessible experience from the moment a patient arrives.

Brighton Regional Doctors is one example where staff are working together to understand individual patient needs and make reasonable adjustments where possible.

These adjustments might include offering longer appointments, providing quieter waiting spaces, using visual supports or helping patients wait outside the clinic until their appointment is ready. GP and practice owner Dr Mary Lumsden says practices do not need to overhaul their systems to make care more inclusive.

“If we know certain patients are going to need longer appointments, it’s automatically flagged so they’re booked for the right length of time,” she says. “If somebody has particular sensory needs, they might wait in a quieter room or come at the beginning or end of the day when it’s less busy.”

Annual health assessments are another important tool in improving outcomes. These assessments help healthcare teams build a clearer understanding of a person’s baseline health, identify changes earlier, and ensure preventive care is not overlooked.

For Amy, whose daughter Lily has complex needs, annual assessments help ensure nothing slips through the cracks.

“It’s good to do it once a year and make sure we’re on top of everything and Lily’s getting what she needs from the doctors,” she says.

To support primary healthcare providers across Tasmania, Primary Health Tasmania has developed a new video resource with Brighton Regional Doctors through the Australian Government-funded Primary Care Enhancement Program for people with intellectual disability.

The resource shares practical examples of reasonable adjustments and communication strategies healthcare teams can implement in everyday practice. This is one of a number of resources Primary Health Tasmania has developed to support better care for people with intellectual disability. Importantly, the message is not that clinicians need specialist expertise in intellectual disability care before they can make a difference. Often, better care begins with listening, adapting and avoiding assumptions.

“Don’t make assumptions,” Mary says. “You pick up a lot about what might actually be going on just by listening.”

At Brighton Regional Doctors, small changes are making a real difference for Dazza.

“They’re always fixing you up. I’m good as gold,” he says. “I love all the different support, and I love them.

Watch the video here.

This story features in Issue 22 of our Primary Health Matters magazine. Click here to read the rest of the issue.