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

Retrieved on: 
Tuesday, October 17, 2023
People, Ministry of Health (New South Wales), Diagnosis, Health, Language, Health care, Family, Royal commission, Learning disability, Research, Name, Brain, Bullying, Risk, Genetic, Intellectual disability, Suicide, Genetics, Mutation, Royal Commission on the Future of Health Care in Canada, Life expectancy, Stigma, Friends, Genetic testing, Hospital, Disability, Child, Patient, Time, Nursing, Tutoring, Medical imaging, Health insurance, Medical device, Chalk, Easy read, Violence

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.