Representation of people with intellectual disability in Australian mental health policy

Intellectual developmental disorder, or intellectual disability, is a condition with onset during the developmental period involving both intellectual and adaptive functioning deficits in conceptual, social and practical domains. The estimated prevalence of intellectual disability is about 1–2% of the population (Australian Institute of Health and Welfare [AIHW], 2003), yet the mental health needs of this minority group are substantial. Across the lifespan, people with intellectual disability exhibit vulnerability to common mental disorders, with an estimated 30–50% experiencing mental illness (Einfeld et al., 2011). Notably, people with intellectual disability are two to three times more likely than the general population to develop schizophrenia, and its onset occurs earlier than for other Australians. People with intellectual disability also experience higher rates of other common mental illnesses including affective and anxiety disorders, and the dementias.

This vulnerability to mental illness is due to a complex interrelationship between intellectual disability and other medical, social and psychological factors. Besides genetic predisposition to psychopathology, people with intellectual disability may experience mental ill-health due to various combinations of experiences such as stigma, discrimination, restricted social networks and socioeconomic disadvantage, or due to the side effects of medications, including those for physical health comorbidities. The clinical territory is often complex, and diagnostic overshadowing may result in the symptoms of mental ill-health being attributed to a person’s intellectual disability rather than to a mental disorder. This can delay effective treatment or lead to inappropriate clinical service response. This combination of vulnerability to mental illness and complexity of clinical practice highlights the importance of timely access to psychiatric services which are accessible, equipped and proactive. Effective service provision, however, requires a strong policy framework to drive reform in identifying and prioritising this group as one requiring specific attention.

At present people with intellectual disability are poorly recognised in Australian mental health policy. Indeed, Australian intellectual disability mental health policy falls short of its obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and lags behind leading international standards in intellectual disability health policy. A recently published in-depth analysis and review of current Australian mental health policy to assess the representation of people with intellectual disability by our group (Dew et al., 2018) found limited inclusion of this population. We identified 37 relevant mental health policy documents and less than half of these documents mentioned people with intellectual disability. In addition, nine pieces of mental health legislation for all states and territories were analysed and people with intellectual disability were only mentioned in relation to forensic parts of the Acts addressing fitness to plead and the need for additional support in this context. Importantly, none of the mental health policies consulted people with intellectual disability or their supporters as stakeholders to inform policy development. A specific focus on intellectual disability mental health in mental health policy was recommended as a priority area by disability and mental health experts during a national roundtable on the mental health of people with intellectual disability www.nswcid.org.au/images/pdf/NSW_CID_Communique.pdf. As policy determines allocation of funding and hence service delivery priorities, it is a major driver of practice.

Reflective of the under-representation of people with intellectual disability in Australian mental health policy, this group experiences major barriers in access to mental health services and treatments. These barriers may be heightened due to communication deficits, severity of intellectual impairment and co-morbidity of other health problems. Access is further restricted due to an underdeveloped service system characterised by poor cross-sector coordination and poor preparedness of staff to meet the mental health support needs of people with intellectual disability. These barriers are magnified by separate disability and mental health service systems and are complicated by the recent implementation of the National Disability Insurance Scheme (NDIS).

However, there is some reason for optimism. Relatively recent mental health policy documents and strategic plans such as the NSW Living Well strategic plan for mental health services and the Victorian Because Mental Health Matters reform strategy set a positive example by directly addressing the mental health needs of people with intellectual disability. Furthermore, the recently released Fifth National Mental Health and Suicide Prevention Plan (Commonwealth of Australia as Represented by the Department of Health, 2017) contains specific mention of the needs of people with intellectual disability. This change has only been achieved by concerted pressure from health advocates, people with intellectual disability and clinicians working in this area. This Fifth Plan specifically acknowledges the vulnerability of people with intellectual disability, the difficulties in accessing services and the requirement of ‘a coordinated approach across multiple service sectors’ (p. 8), yet this acknowledgement is not specifically incorporated in outcomes associated with the plan. As the mention is relatively non-specific and without benchmarked actions, it is critical for the Government to fully incorporate the needs of people with intellectual disability within the eight priority areas articulated in the Fifth Plan. Doing so presents an opportunity to address vulnerability and access issues for this group. Furthermore, the limited exemplars of proactive inclusion of people with intellectual disability in mental health policy should be an encouragement to all State, Territory and National jurisdictions to develop an intellectual disability inclusive approach to mental health policy in the future. Enhanced policy frameworks will only be of value if specific capacity building initiatives follow and are supported by an inclusive approach to mainstream mental health provision and services.

In summary, current approaches to policy development lack coherence and detail in describing how the support needs of people with intellectual disability and mental ill-health can be met. Of major concern is the impact that unaddressed mental health problems have on people with intellectual disability, their families and support persons. Every State or Territory, and the Commonwealth has an obligation to address this issue. Doing so will ensure that the human rights of one of the most vulnerable and marginalised groups in our community are upheld. The strong link between disability, physical and mental health for people with intellectual disability highlights the importance of policy and legislation which clearly addresses the complex issues for this population and facilitates implementation via a joint framework for cross-agency service provision. The latter is urgent given the implementation of the NDIS, and the need for cohesive supports across both health and disability sectors.