'They treat you like an it': people with intellectual disability on seeing medical professionals
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Tuesday, October 17, 2023
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This was how Richard*, who has an intellectual disability, described his general experiences with medical professionals.
Key Points:
- This was how Richard*, who has an intellectual disability, described his general experiences with medical professionals.
- He was among 18 adults with intellectual disability and eight support people we spoke to for a study on how people with intellectual disability have experienced medical care.
- This work, part of a broader body of research on intellectual disability and medical care, has revealed an urgent need to shift the deeply entrenched assumptions many health-care workers often hold about patients with intellectual disability.
Centring lived experience from the outset
- We set out to involve people with lived experience of intellectual disability in the project design, implementation and interpretation.
- This meant people with intellectual disability were often unsure why they were having a genetic test at all.
- The video below shows an all-too-common experience for people with intellectual disability seeing a doctor for genetic testing.
- Read more:
Hospitals only note a person's intellectual disability 20% of the time – so they don't adjust their care
Post-diagnosis support is often lacking
- It touches on deeply personal issues of identity, health implications for children and extended family, and future health.
- For example, after a genetic diagnosis Katrina said:
I feel like I’m not normal now. - However, people with intellectual disability told us they were rarely connected with appropriate psychological supports after their diagnosis.
- […] I knew I wasn’t normal to others – I knew I was missing, some part of my brain has gone missing.
- […] I knew I wasn’t normal to others – I knew I was missing, some part of my brain has gone missing.
Change is underway
- Failing to address this means fewer people with intellectual disability getting health checks and screenings, leading to poorer long-term health.
- The average life expectancy of Australians with intellectual disability is already shockingly low compared to the general population.
- But slowly, change is underway.
- If this article has raised issues for you, or if you’re concerned about someone you know, call Lifeline on 13 11 14.
- She is also a Board member of Self Advocacy Sydney, an organisation run by and for people with intellectual disability.
- The institute that Jackie Leach Scully directs has received funding from the NHMRC and the NSW Department of Health.