People with an intellectual disability experience mental health problems at a rate up to three times’ higher than the general population yet the system is failing them. A unique guide now provides a national framework for action for frontline mental health service professionals and providers, writes Karen Keast.

“One of our worst times was when my daughter was admitted to hospital with prolonged delirium,” Michele states.

“We explained that she was usually a bright, sociable young woman with lots of friends and an excellent quality of life.

“The medical team disbelieved us and assumed she was always like she was on admission.

“We were told to put her in a nursing home.

“After discharge from hospital we accessed a specialist, and further treatment led to a complete recovery for our much-loved family member.”

These words from a mum and carer of a child with an intellectual disability (ID), who also has a mental health problem, are featured in a new resource for frontline mental health service professionals, including mental health nurses, psychiatrists and psychologists.

University of New South Wales (UNSW) researchers recently launched a quick reference document - the first of its kind in Australia - in a bid to improve access to mental health services for people with an ID.

The Accessible Mental Health Services for People with an Intellectual Disability: A Guide for Providers, also known as The Guide, is available online.

Associate Professor Julian Trollor, UNSW Intellectual Disability Mental Health chair, says about 400,000 Australians live with an intellectual disability and they are up to three times’ more likely than the general population to experience mental health problems, such as depression and schizophrenia.

Assoc. Professor Trollor says access to health services and the capacity of health services to meet the need is inadequate.

“In fact, access is very poor - there are very limited specific services and generic providers, general practitioners, mental health specialists in terms of psychiatrists, psychologists and mental health nurses.

“They feel ill-equipped to deal with this area and they don’t have the skills and the training.

“They struggle to be able to adapt their approach or the approach of their service to cater to the complex needs of the group.

“There’s a vulnerability, there’s a lack of workforce and capacity and then there’s the lack of appreciation of specific issues for people with intellectual disability.”

Assoc. Professor Trollor, one of the document’s authors who also heads the Department of Developmental Disability Neuropsychiatry (3DN) at UNSW Medicine, says the guide was developed after 15 months’ comprehensive consultation, research and collaboration with funding from the Department of Health.

The guide provides practical steps to improve accessibility within four different groups of service providers - from primary care to generic public health and private health through to specialist ID health providers.

“The guide is basically saying…the way to address this issue is by understanding what should be the underlying principles of service delivery, what should be the key components and how do you do that in real time,” he says.

“We are trying to say to everybody really, there’s a strong policy and human rights basis to make sure services are accessible and this is how you can do it.”

The Guide outlines an overview of mental health needs and highlights barriers to accessing the appropriate mental health services for people with an ID.

It also details the principles underpinning the provision of mental health care to people with an ID, a range of reasonable steps mental health services can implement and the implications for each major component of the mental health system.

Assoc. Professor Trollor says it also features quotes from health care professionals, parents and carers of people with an ID, and colourful illustrations that work to enrich the document.

“You will see the art work, which is all art work from people with an ID, that vary in severity - some of them quite severe - but the art work has been collected to complement each chapter and we’re excited we have been able to illustrate the inclusive approach by including that art work.”

The Guide provides a selection of tools and diagnostic resources, examples of models of best practice, and tools and resources for consumers, family and carers.

It also outlines lists of advocacy services and guardianship, professional associations and interest groups, research and academic organisations, training and education, and other resources.

Assoc. Professor Trollor says for those wanting to up-skill, there are also free e-learning modules that the university launched last year focused on ID mental health at IDMH eLearning.

“What’s on there currently are a range of modules that introduce ID, its impact on people’s lives, the intersection of mental health and ID, that outline of taking people through the skills and assessment of a person with ID and possible mental health problems, taking the person through management - what are the principles of things they should consider in managing that person, and it takes you through how you communicate with a person with an ID,” he explains.

“We are about to complete an emergency presentations module for people who work in the emergency department.”

With eight free modules available, Assoc. Professor Trollor says the website will continue to expand to offer more free modules and resources.

“We are really pleased with the feedback from that site,” he says.

“We have got a couple of thousand users and they are very active and have been very complimentary about the material.”

As Australia embraces the National Disability Insurance Scheme (NDIS), Assoc. Professor Trollor says the time is right to improve capacities within the nation’s health service.

“The idea is that we try and build capacity and awareness more generally so that everybody is doing a better job, right from the generalist in primary care right through to more highly specialised services,” he says.

“The benefit in doing that is that you then have a vision for this vulnerable group who need early intervention.

“If you carry that forward you reduce things like recurrence rates and secondary disability that arises because of the compounding effect of mental health problems in people with ID.

“That in itself makes a huge difference when mental health conditions are well managed, a huge difference to the person and their ability to be able to participate in society to the fullest extent possible,” he says.

“It also makes a huge difference to families and carers who are often at the coal face and bear the brunt of the stress and behaviour that may manifest as part of the mental health problem in a person with ID.”