Intellectual disability

More than 125,000 people in NSW have an intellectual disability. A very large number of these also live with mental illness. They need a combination of supports that our system largely does not provide.

Photo of Anna and her mother Michele

People fall through the gaps between services, with neither the health nor disability sectors taking full responsibility, nor having the right skills to deal with the complexity of the situation.

Read the story of Maia who has experienced mental illness and has a mild intellectual disability

On this page

Introduction
Expertise, integration and access
Barriers to best practice

Introduction

There are more than 125,000 people in NSW with intellectual disability and up to 40% of them also live with mental illness. This is a huge number of people needing a combination of supports that our system largely does not provide.

Specific genetic conditions associated with intellectual disability can increase the risk of mental illness, as can developmental brain abnormalities, and certain medications and their side effects. Those of us with intellectual disability also risk more physical health conditions which in turn increase the risk for mental illness.

If we have an intellectual disability it usually affects our coping skills and our ability to choose and do things for ourselves. This just creates more stress, making us even more vulnerable.

Distressingly, those of us with an intellectual disability experience higher rates of physical and sexual abuse and this too serves only to magnify vulnerability to mental illness.

Our risk of mental illness also increases because our social networks are restricted and we have fewer opportunities to engage in a range of life choices. Other social factors that have an impact are poverty, a higher likelihood of contact with the criminal justice system, negative experiences during schooling, and financial and emotional strain within the family.

If we have milder intellectual disability and good communication skills we are usually able to describe what we are experiencing. But for people with more severe intellectual disability or communication difficulties, mental illness may be interpreted by others as problem behaviours.

Expertise, integration and access

There are pockets of expertise in NSW which support the physical and mental health needs of people with intellectual disability, but they are scarce and not integrated with mainstream services, so access is limited.

People fall through the gaps between services, with neither the health nor disability sectors taking full responsibility, nor having the right skills to deal with the complexity of the situation. This is further aggravated by the lack of adequate resources.

The NSW Ombudsman has found hospital rehabilitation units are, in effect, becoming long-stay units for people with an intellectual disability. This results from a culture among agencies, the lack of a model of care that specifically addresses the needs of people with both mental illness and intellectual disability, and the lack of appropriate step-down community support to provide transitional care between hospital and home.

Informal care from overworked families forms the backbone of the support people with intellectual disability receive. Inadequate access to services and skilled clinicians adds significantly to the burden on carers, diminishing not only their quality of life but that of the person they care for.

Infographic showing statistics of disability relating to mental health

  • Australian research following a group of children and adolescents with intellectual disability for four years showed 10% of those with schizophrenia received intervention
  • Whereas 35% of the general population has access to mental health supports in one year

Barriers to best practice

We don't have

  • enough data on the prevalence of mental illness in people with intellectual disability
  • enough data on the interaction between disability and mental health services
  • enough training and confidence among mental health professionals
  • a good understanding among carers, disability and mental health workers of what mental illness look like in people with intellectual disability
  • coherent mental health service models for people with intellectual disability or sufficient funding to operate them
  • co-ordination between community-based and clinical services and
  • an inclusive approach to people with intellectual disability in mental health policy. 

People from a range of backgrounds such as culturally and linguistically diverse communities or people who are lesbian, gay, bisexual, transgender or intersex need special consideration. But Aboriginal Australians with an intellectual disability require a particular focus. They have a significantly higher rate of disability compared with non-Aboriginal people, they often suffer multiple disadvantages and they are over-represented in the criminal justice system. Many mainstream services are not perceived as culturally appropriate or accessible.

Towards change

We must

  • include people with intellectual disability in all mental health reform initiatives
  • provide better access to prevention and timely intervention for mental illness where professionals are able to identify co-ordinated and effective care and referral pathways for treatment
  • engage in direct mental health service provision within the disability sector
  • ensure equitable access to skilled treatment
  • establish a pool of specialists in intellectual disability mental health with specialised services supporting mainstream services in providing care
  • support collaboration among agencies at local, state and national levels.
  • have workforce education development and training in intellectual disability mental health for staff across sectors
  • develop training for mental health professional groups, including curriculum at undergraduate and postgraduate levels and placement options in intellectual disability mental health
  • alert tertiary education institutions to future workforce needs in intellectual disability mental health. Consideration needs to be given to the ongoing training of GPs, including in relation to health care co-ordination
  • link data among mental health services, disability services, Medicare, the NDIS and other relevant agencies
  • have more and better research.

Related links

Strategic Plan and Report

References

Source material for content on this page is from the Living Well Report

Last updated: 5 April 2017

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