Continuing a Croakey series on mental health reform….

Sophie Howlett writes:

Access to, and quality of, mental health care for people with intellectual disability is very poor.  This results in great human cost to people with intellectual disability and their families, as well as considerable financial cost to the health, mental health, and disability service systems and those they interface with.

At present, two complementary systems (health and disability) function in relative isolation, encouraging a quarantining of expertise and thereby complicating access issues for people with an intellectual disability. Consequently, this population is falling through the gaps.

What is needed is an appropriately skilled and tailored clinical approach within both community and acute inpatient mental health settings. This is currently desperately lacking.

In the initial debates about health and hospital reform, mental health reform was considered secondary to the primary goal of fixing our health system. Thankfully, the Federal and some State governments have since recognised that including mental health in the reform process is fundamental to any overall investment in health.

However, the voice of those with intellectual disability who experience mental illness remains is barely audible against the background of main players in the mental health reform debate.

People with an intellectual disability make up approximately 2% of the Australian population (AIHW, 2003). They experience both a higher burden of mental illness than the general population (at 2.5 times higher) and higher rates of morbidity and lower rates of detection of illness and treatment than the general population.

This is due in part to communication difficulties experienced by this population. It is also attributable to a phenomenon known as diagnostic overshadowing, whereby the symptoms of a mental health disorder are not recognised on account of the range of behavioural and other symptoms that the individual is displaying.

But for the most part, poor recognition of mental disorders in people with an intellectual disability is symptomatic of an ill-equipped system.

In most jurisdictions, there is very little basic epidemiological data on the prevalence and predictors of mental disorders in adults with an intellectual disability. Consequently, policy in this area has not been developed proactively and is poorly coordinated between disability and health sectors.

There is currently no shared triage and assessment capacity between disability and mental health services for cases where intellectual disability and mental disorder co-exist and while there are a few pockets of expertise across the country, such as specialist intellectual disability mental health services, these are intermittent.

Further, research indicates that GPs, psychiatrists and trainees lack confidence and training in relation to people with intellectual disability and mental disorders, and consider that they receive a poor standard of care and that community mental health supports are inadequate (references available on request to Croakey).

There is generally a lack of awareness in staff of the mental health issues experienced by people with intellectual disability and a lack of skill in managing these complex cases. There is little training in intellectual disability and mental health, no mandated minimum standards for frontline staff in health and disability services and further, there is a lack of current funding to carry out any such training.

Ensuring an adequately skilled and confident mental health and disability workforce is a critical component of improving mental health outcomes for people with intellectual disability.

Evidence has highlighted the role that untreated mental illnesses have in the development of challenging behaviours and how this can result in a person entering the criminal justice system by way of what are usually mere misdemeanours.

People with intellectual disability are grossly over-represented in the criminal justice system and this is of grave concern. The intersection between intellectual disability, personality disorder, mental health and offending or at risk behaviour represents one of the most challenging in the field.

An illustrative story is  found in “Jessie” (an illustrative rather than specific case), a 28-year-old man with an intellectual disability and autism who despite hearing voices and behaving in an agitated manner, was declined a mental health crisis team assessment, because the assessing mental health worker thought he should first get support from the disability service.

Three months later, Jessie’s behaviour became increasingly disturbed and erratic, including bouts of absconding, self-harm and aggression towards staff and other residents. He was finally admitted to a mental health unit, in which staff struggled to manage aspects of his disability support needs. By that time he had severe psychotic symptoms for which a prolonged admission was required. He was discharged with minimal mental health supports, heightening his risk of relapse.

Jessie’s case is a typical one that highlights the difficulties of access to appropriate mental health care for people with intellectual disability.

Substandard access and care for this population is the default mode of a mental health system which has yet to realise its obligations under the UN Convention on the Rights of Persons with Disability which Australia ratified in 2008.

However, with enhanced support in education and training, service development and further research into the mental health needs of people with intellectual disability, there is hope that this situation can be improved.

There have been some major developments in the disability sector in recognising the complexity of issues faced by people with intellectual disabilities. Largely this has come in the move to person-centred care and the promise of Federal commitment to the National Disability Insurance Scheme (NDIS) in the coming years.

But until the discrepant bureaucratic systems talk effectively to one another, this group of people will continue to be overlooked.

The gaps in services, policy development and research are very present and will continue to prohibit people with intellectual disability from accessing appropriate mental health treatment until we have improved awareness of the issues, greater collaboration and a staff skilled in managing these complex cases.

• Sophie Howlett is Project Officer, Department of Developmental Disability Neuropsychiatry, University of New South Wales


For previous posts in this series on mental health reform: 

• Suggesting some long-term goals for mental health reform

• Important for mental health: a fair society and a good start to life

• Don’t rush the roadmap for national mental health reform: Alan Rosen

• What matters for people living with psychotic illness

• More effort needed to strengthen shared care arrangements for people with serious mental illness

• Some lessons from rural innovation in mental healthcare