Still waiting for accountability on youth mental illness

We are in the vortex of a mental health and addictions epidemic

Karen MindenIn 1998, our family was in trouble. We were on the brink of losing a child – our daughter was in deep trouble due to acute addictions and mental health problems.

Living in Winnipeg at the time, we were on a desperate mission to find help. It wasn’t there. It wasn’t anywhere in Canada. We bounced between psychiatrists, social workers, community agencies and group homes. Yet every door was the wrong door.

There were no residential addiction treatment programs for teens in Canada demonstrating that they would be able to help, and none even existed for children under 16. We were stunned to discover how little help there was until we were in crisis. (In the more than two decades since, I have heard from hundreds of families who experienced the same sense of shock and hopelessness when they needed help for their child.)

We could barely think straight while trying to figure out how to get help. Health care professionals told us, “there’s nothing you can do,” “let it run its course,” “most kids don’t die.”

There was treatment in the United States, but it was expensive, unregulated, and far from home. We struggled until we finally found a program in the U.S. that worked. Our child’s life was saved.

That experience motivated us to act – specifically to commit ourselves to building a treatment centre in Canada.

A paper I co-authored a decade ago titled “Waiting for What?” asked two fundamental questions about adolescent mental health: What are we treating? And what works?. It also proposed that we measure outcomes if we are to transform adolescent mental health and addictions treatment.

Unfortunately, most mental health treatment programs, specifically those for youth, still do not track client outcomes. Funders instead focus on outputs, such as the number of clients and staff, number of hours of treatment, food costs, and length of stay. Not one of these has anything to do with clients’ health or the extent to which they were helped. Health care reforms and initiatives tinker around the edges – better access, better integration, co-design, but they still do not ask the fundamental question: Do treatments work?

From day one, the Pine River Institute, which opened in 2006, has tracked its impact on troubled young people and their desperate parents. It consistently reports approximately 80 per cent success in helping young people return to functional living – attending school, staying out of hospital or jail, pursuing healthy family relationships, and a quality of life where they can see a future for themselves.

Our current Director of Research and Evaluation, Dr. Laura Mills, is convinced that outcome measurement is a core commitment, stating “no program should dare touch a kid unless they can demonstrate they don’t hurt their clients.”

Yet, today, there are woefully few Ontario agencies that can demonstrate their impact on the young people they serve. There is almost no core funding for outcome evaluation. (Some of the organizations that are leaders in this field fund outcome evaluation through their philanthropic foundations or research grants.) But addictions and mental health programs continue, year after year, to get funded without knowing or demonstrating their impact. The bar is still abysmally low.

We can raise that bar; each of us, whether health care clients, providers, or funders, can make it better. Each of us can make sure that children and youth, and their families, get the best available treatment for mental health and addictions.

How?

First, agencies need to determine what they are trying to accomplish and how they will know they are successful. Second, they need to set up a data collection and analysis system. Third, they must use that data to report regularly to themselves, their clients, and their funders. Fourth, roles and responsibilities must be clear and dedicated.

Such an initiative requires strong and consistent leadership support and commitment. This is not rocket science. And it does not have to be expensive.

But how does an agency actually measure success? By knowing how they hope they help their clients, then validating that hope with evaluation. Do they offer treatment to reduce depression or anxiety? Do they reduce suicidal thoughts or behaviours? Do they help clients become more globally ‘functional’ across vocation or education, relationships, and mental well-being with reduced hospital visits and criminality?

Process indicators – knowing that you serve 100 meals a day or 300 people per year or spend 30 minutes per admission – are not measurements of success. None of these help us understand whether we are helping.

Imagine if parents asked what the treatment approach is when their child loses their way, asked to see outcome data on the success rate of treatment programs and demanded that those who provide programs – both the funders and the agencies that deliver treatment – provided data on their outcomes, showing that they are accountable to their patients and the ultimate funders – Canadian taxpayers.

We are in the vortex of a mental health and addictions epidemic. The cost of not acting prolongs suffering and delays the real possibility that we can do better. If our collective belief that people with mental health issues – be it addictive behaviour, depression, or schizophrenia – are a lost cause, our low expectations will continue to affect everything up the chain.

Karen Minden, CM, PhD, is Founder of Pine River Institute and Pine River Foundation, now retired. She has a broad foundation in research, public policy, philanthropy and international relations. As Vice President of the Asia Pacific Foundation, she helped create a national think tank on Canada-Asia relations. She is a member of the Order of Canada. This is an edited version of a commentary that first appeared on the Macdonald-Laurier Institute website.

Karen is one of our Thought Leaders. For interview requests, click here.


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