'They treat you like an it': people with intellectual disability on seeing medical professionals

• 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.