People with cognitive disability

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Not all cognitive impairment is associated with disability. People may use different language to describe their experience.

A person’s cognitive disability might be due to intellectual disability, developmental disability, acquired brain injury, other neurodevelopmental conditions or severe persistent mental illness. It often begins in childhood, but not always.

A person with a cognitive disability may have trouble communicating, remembering, learning new things, concentrating, or making decisions that affect their everyday life.1,2 Each person is affected differently.

There are high rates of suicide and self-harm among this population.

  • People aged under 65 years who used disability services between 1 July 2013 and 30 June 2018, died by suicide at a rate 3 times higher than the general population of the same age.3
  • 40% of people with an intellectual disability will also experience a mental health problem, putting them at increased risk for death by suicide.4

Risk factors and challenges

People with cognitive disability face challenges that put them at increased risk of suicide. This can also be a barrier to accessing universal aftercare services. These include:

  • communication difficulties
  • communicating distress through behaviour instead of language
  • the presence of mental health problems, chronic or complex physical health problems
  • increased feelings of isolation
  • stigma
  • diagnostic overshadowing (when a person's symptoms are wrongly attributed to an existing condition, leading to misdiagnosis or overlooked health issues)
  • previous negative experiences with health providers and others.

Considerations

Adapt the way you engage with consumers to meet their needs. This will improve their outcomes with aftercare.

Communication

  • Some people may communicate differently, or require more time to process information or form their thoughts. Consider planning longer appointments, if needed.
  • Use simple and clear communication.
  • Discuss the mode of engagement (in person or virtually). Ask the person what works well for them and explain how care will be provided.
  • Engage with the consumer and their support people (including disability support workers) about what is working; and what the person needs to help their communication and engagement.

Creating a supportive space

  • Plan the appointment in advance. Ensure access to a quiet space; have Easy Read information or visual aids available to share, if needed; allow extra time; and ask the person what else they might need when making the appointment.
  • Ask the person what they need for the space to feel comfortable and safe, especially for different sensory needs, e.g. low stimulus, dim lighting or comfortable seating.
  • Talk to the person about things that help them feel safe, such as special interests or hobbies.
  • Prepare tools and activities for meetings that support their needs for effective engagement, such as sensory aids, walking, colouring or crafting.
  • Consider tools to support de-escalation of emotions or behaviour. Emotional dysregulation or expression looks different for some people. Sensory overstimulation can be misinterpreted as distress, resulting in unnecessary and unhelpful escalation.
  • Ensure engagement is structured and consistent to support safety and regulation; but be flexible and adaptable to change. If an appointment time or location needs to change, be clear about the reasons for this and include the person in the decision-making process, where possible.

Recommended resources

Healthy Mind Easy Read tool for people with intellectual disability
A tool for people with intellectual disability to recognise and regulate their thoughts and feelings.
Source: Black Dog Institute

Intellectual Disability Health Education
Interactive education resource on mental health for people with intellectual disability.

Intellectual Disability Mental Health Connect
Provides information on pathways to mental healthcare for people with intellectual disability.

Just Include Me eLearning
Online training for health professionals to foster inclusive healthcare for people with intellectual disabilities.
Source: Council for Intellectual Disability

Privacy and persons with reduced decision-making capacity
A guide for the NSW public sector to assist when caring for people with reduced decision-making capacity.
Source: Information and Privacy Commission New South Wales

Responding to the needs of people with disability
NSW Health policy directive outlining requirements for staff planning and delivering health services to people with disability across the lifespan.
Source: NSW Health

References

  1. Responding to the health care needs of people with disability. Sydney (AU): NSW Health; 2024 [cited 25 Sept 2024].
  2. NDIS And Cognitive Impairment. Sydney (AU): NSW Health; 2023 [cited 25 Sept 2024].
  3. Suicide deaths among people who used disability services. Canberra (AU): Australian Institute of Health and Welfare; 2023 [cited 25 Sept 2024].
  4. Living Well: A Strategic Plan for Mental Health In NSW 2014–2024. Sydney (AU): NSW Mental Health Commission; 2014 [cited 25 Sept 2024].
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