Individuals with developmental disabilities are an invisible population in Canada’s mental health system

By Yona Lunsky and Robert Balogh

Almost half of those with developmental disabilities are diagnosed with mental illness or addiction — and they are among the most frequent visitors to emergency departments

A version of this commentary appeared in Policy Options, the Vancouver Province and the Winnipeg Free Press

Individuals with developmental disabilities are an invisible population in Canada’s mental health system

With the recent federal commitment to increase mental health funding across Canada, we need to turn our attention toward a group of individuals who are currently invisible within Canada’s mental health system — a group that has some of the greatest needs for mental health services and supports, yet is rarely acknowledged or targeted in mental health efforts.

Those with developmental disabilities, which includes Down syndrome, fetal alcohol syndrome and autism are rarely recognized in mental health statistics, policy priorities, education and training or even clinical practice.

There was a time when this population was not “seen” within mainstream mental health initiatives because they received their care in a separate system, primarily through institutional care. But with the closure of institutions and an emphasis on community inclusion Canada over the last several decades, those with developmental disabilities are expected to access physical and mental health care, like everyone else, in their home communities.

Unfortunately, their health needs are often not adequately addressed.  And our inability to ‘see’ this population is costing the health system enormously.

In August of 2016, the Ontario Ombudsman released “Nowhere to Turn,” a disturbing report following a four year investigation about the care and treatment of adults with developmental disabilities.  The report found frequent emergency department use, lengthy hospitalizations, as well as homelessness, incarceration, family burnout and cases of abuse and neglect.

Although mental health was not the focus of the investigation, it was clear that poorly addressed mental health issues led to many of the social and health problems highlighted in the report.

Similarly, recent research from the Centre for Addiction and Mental Health (CAMH) and Institute for Clinical Evaluative Sciences (ICES) in Toronto shows that 45 percent of Ontario adults with developmental disabilities are diagnosed with a psychiatric disorder and at least six percent have an addiction.

Perhaps because of the complexity of their health needs (both physical and mental health problems are prevalent), this group is more likely to have repeat emergency department visits and to be re-hospitalized than other individuals — a sign that the connection between community and hospital-based care for those with developmental disabilities is not what it should be.

A national study of hospitalizations, published in the Canadian Journal of Psychiatry, found that psychiatric hospitalizations accounted for almost half of developmental disability hospital admissions. The majority of those with developmental disabilities hospitalized for psychiatric issues were youth and young adults, in stark contrast to what was observed in those without these disabilities whose psychiatric hospitalizations tended to occur later in life.

Sadly this complex and vulnerable population is also often treated by mental health and general health providers who are unfamiliar with their disabilities and frequently do not feel comfortable working with them.  Indeed, the training of health care providers on the mental health needs of this group is very limited in Canada.

So what needs to be done to help policy makers finally ‘see’ this invisible population and to support the mental health system address their needs?

As a start, since we know that adults with developmental disabilities are prone to mental illness and addictions, our mental health promotion efforts need to include them.

We should be investing in screening for mental health issues and early intervention in this population and we should play an active role in helping those with developmental disabilities obtain an accurate diagnosis and receive accessible evidence-informed treatments and supports.  This would also mean that all mental health care providers require some basic skills and knowledge to support those with developmental disabilities.

Repeated emergency visits and lengthy hospitalizations could be reduced or avoided if we delivered more extensive outpatient-based mental health care to those in need.  Across the country, mental health and social service sectors must work together, especially once someone in this population is hospitalized, to plan for safe discharges with the appropriate mental health supports in place.

Finally, the phrase “nothing about us without us,” should be kept in mind. A quality patient oriented solution means those with developmental disabilities and their families need to be at the table alongside other groups with mental health or addiction expertise.

It makes good policy and good economic sense to ensure individuals with developmental disabilities are included in mental health plans, strategies and funding going forward.

It’s time their needs were seen — and met.

Yona Lunsky is an expert advisor with EvidenceNetwork.ca, a Professor at the University of Toronto Department of Psychiatry, and the Director of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program at the Centre for Addiction and Mental Health.

Robert Balogh is an Assistant Professor at the University of Ontario Institute of Technology, Faculty of Health Sciences.  He co-leads the mental illness and addictions component of H-CARDD and leads a project looking at the complex health and social needs of Ontarians with dual diagnosis.  

They are both adjunct scientists at ICES.  Dual diagnosis resources for patients, families and clinicians can be found at https://www.porticonetwork.ca/treatments/disorders-qr/dual-diagnosis

April 2017

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