They don’t treat you like a person, they treat you like “it”.
Richard*, who has an intellectual disability, described a common experience he had with health professionals:
He was one of 18 adults with intellectual disabilities and eight supporters we spoke to for our research into how people with intellectual disabilities have experienced healthcare. We were particularly interested in experiences of genetic healthcare (for example, when it comes to undergoing genetic testing to find out more about a disability).
The study, part of a wider body of research on intellectual disability and healthcare, highlights the urgent need to change deep-rooted assumptions many healthcare professionals hold about patients with intellectual disabilities.
Our research suggests that health professionals need training to provide more comprehensive, patient-centred and respectful care.
Read more: Does my child have a learning disability?
Emphasizing lived experience from the start
This job required a different type of research.
Our team included geneticists, bioethicists, and disability education researchers, as well as adjunct lecturer Julie Roblinczyk OAM (and co-author on the paper), a mother of a person with an intellectual disability and an independence support leader.
Together we formed the comprehensive research group GeneEQUAL.
We aimed to involve people with experience of intellectual disability in the design, implementation and interpretation of the project.
We have previously published several studies revealing how people with intellectual disabilities are shockingly often excluded from discussions about their health.
People with intellectual disabilities told us they generally feel excluded from their medical appointments because healthcare professionals often speak to their support people or family members rather than to them.
Many spoke of how little effort their health care providers put into using easy-to-understand language or providing easy-to-read materials. Lillian said:
This form is hard to read. My mother said she found it hard to read too.
This meant that people with intellectual disabilities often didn’t really understand why they were undergoing genetic testing in the first place.
Many felt excluded from decisions about consenting to genetic testing and even from what was discussed during consultations.
The video below shows an all-too-common experience of people with intellectual disabilities visiting a doctor for genetic testing.
In contrast, the following video shows what accessible, inclusive, and respectful practice looks like:
Read more: Hospitals only notice 20% of patients’ intellectual disabilities, so they don’t adjust treatment
Post-diagnosis support is often lacking
Genetic counselling is often an emotional experience. It touches on very personal issues, including identity, the impact on the health of children and relatives, and future health. For example, after receiving her genetic diagnosis, Katrina said:
Now I feel like I’m not normal, I’ve told people around me about this, they’re my friends and family, they don’t blame me but they just look at me like “you’re just stupid, you’re not normal anymore”.
Three of the participants said they had considered suicide after their diagnosis.
However, people with intellectual disabilities say they rarely receive adequate psychological support after their diagnosis, and this type of support is in short supply. When interviewed, Katarina said:
Be careful how you communicate things to us, or we’ll just end up crying and blaming it on something else. […] We become very sad about things, we dwell on them, we worry about them.
Language based on genetic defects is peppered with words like mutation, risk, disability and abnormality, which can reinforce people’s lifelong experiences of bullying and prejudice.
In my mind, my mother was telling me, “You’re missing a bad chromosome.” […] I knew that I was not normal in the eyes of others, I knew that I was missing, that a part of my brain was missing.
All this means that the potential benefits of genetic testing are often wasted.
Virtually none of the people in our study knew the name or nature of their genetic disease, let alone what medical tests or treatments might be recommended.
To make matters worse, their continuing medical teams (including their GPs) were often equally clueless.
Genetic counseling is often emotionally charged. Shutterstock
Read more: Working from home worked well for people with disabilities; a push back to the office could reduce gains
Change is underway
The Federal Government’s National Roadmap to Improve Health Care for People with Intellectual Disability and the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability have highlighted how pervasive exclusionary practices are in Australian healthcare.
“If this issue is not addressed, people with intellectual disability will have fewer opportunities to receive health checks and screenings, leading to poorer long-term health outcomes. The life expectancy of Australians with intellectual disability is already shockingly low compared to the general population.
But slowly, change is happening.
Based on our research, NSW Health funded our team to work with self-help groups and health professionals to co-produce the GeneEQUAL education toolkit. This resource supports health professionals to provide better, more equitable genetic care, and includes easy-to-read booklets about genetic diseases and clinics.
People with intellectual disabilities have identified three key guiding principles: Health professionals should:
Make reasonable adjustments, such as setting aside sufficient time for an interview to clearly explain your options
We put patient-centred care into practice by making genetic reports and letters available in an easy-to-read format and ensuring genetic diagnoses and management plans are shared with patients, their support people and their clinical teams.
Offer choices and provide trauma-informed care, given the high rates of abuse and stigma experienced by people with intellectual disabilities. Language should be strengths-based and the environment welcoming.
Since its launch, the toolkit has been used widely across Australia and internationally, with many expressing interest not only in the content but in the collaborative way it has been created.
*Names have been changed to protect identity. If you have any concerns about something in this article or about someone you know, please call Lifeline on 13 11 14.