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.
Dual diagnosis resources for patients, families and clinicians can be found at https://www.porticonetwork.ca/treatments/disorders-qr/dual-diagnosis
This article was reprinted with permission from the EvidenceNetwork.ca.
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You make some valid points. I agree, LTC is in sad shape as well. I had 2 inlaws in LTC (one passed away in Dec) and see first-hand the sad lack of sufficient resources to address the needs of residents. There is no allowance for time to attend to their emotional and mental health needs. Funding doesn’t even provide enough for their basic physical needs where is the quality of life, dignity and respect for our elders, who gave so much of themselves throughout their lifetime. Shame on all of us for allowing them to languish in this current state. It’s too easy to blame a faceless, distant government. We all need to rise up and be heard if we have any hope of making things better.
This is hopeful. Thank you for sharing Anne.
All good points. I have a 34 year old daughter with Down syndrome, possible autistic tendencies and mental health challenges (high anxiety). She hasn’t seen a psychiatrist since her teen years, is on the same anti-depressant she was prescribed back then and is followed only by her family doctor. Any other treatment has been a patchwork cobbled together by me, eg. off and on counsellors, alternative therapies.
Finally!! I have been pushing and advocating for our local Mental Health agency to provide counselling to children with developmental disabilities and Autism for years with no success. They have many reasons why they cannot provide counselling. I always assured the counsellors that they could. I just felt they needed to adapt their ways as schools have to teach, adapt language level, use pictures etc. The developmental systems have been teaching children with developmental disabilities for years to learn all kinds of skills, but alas we are not Mental Health workers with this kind of expertise.
Thank you to Community Living Ontario for advocating for this much needed focus on future Mental Health services for children and adults with disabilities!
If education, support for families is needed has engagement of these families for their perspective started or is it still JUST about talking about the problem. Where’s the leadership and initiative on this? Seems there is quantifiable evidence about the problem. Solutions begin by taking a first action step! It’s the same in what we provide to our seniors in the community and Long Term Care. I advocated for my father for 15 long, hard years with NO support or, change…but yes, murders and lots of talk about how much money was being spent….. our vulnerable citizens are not important. Listen to what our leaders say….watch what they do. The MOH and policy folks need to stand up and be counted.
As a nurse working in the mental health and addiction field with clients with and without developmental disabilities it is absolutely true that we do not have sufficient training for programs to be able to include clients with developmental disabilities into some of the our programs. However in saying that we have recently been able to pilot some work with teams to do cross training of staff and worked on ways that everyone can be informed of each others roles in the clients care. Clients are able to get the treatment they need in a much more timely fashion. Unfortunately due to the increase pressures to the system these types of training and collaborative work plans are much more difficult to organize. I am hoping that with some of the health links and care plan for clients initiatives that we will learn to work smarter together to help individuals and their families receive the care they need and deserve.