Herschel Hardin, October 5, 2021
Second in a series on innovation.
In my last contribution to RVICS Commentary, I explored what lay behind social innovation, in particular the role of hands-on experience and the direct perception of need. These were major factors leading to RVIC’s proposal for an intentional community for the seriously mentally ill, on the səmiq̓ʷəʔelə/Riverview Lands.
At the heart of that experience, in this case, was the involvement of family members – those with a loved one with serious mental illness.
It got me thinking about how much innovation this commitment by family members has generated – how creative, bold, iconoclastic and on-target it has been.
I’ll start with a couple of local examples and, in a subsequent commentary, move on to much larger, continent-wide, history-changing cases.
The local examples have to do with the North Shore Schizophrenia Society (NSSS, now Pathways Serious Mental Illness Society). Full disclosure: The central figure is my wife, Marguerite, and I also was involved.
In 1995, Marguerite, then NSSS president, established a full-time peer-governed, peer-operated Family Support Centre. It covered all serious mental illness – bipolar disorder, major depression, and borderline personality disorder as well as schizophrenia. She created the model. There wasn’t anything like it anywhere else in the world, as far as I know.
“A home of our own,” was the slogan.
The Centre’s programs came to incorporate five different functions: support, information, education, advocacy, and outreach.
The creation of the Centre seems ordinary enough now, 25-odd years later, but at the time it was revolutionary: a statement that family members, and their importance and understanding, would not be denied. Remember that it wasn’t that many years earlier – a decade or two – that parents could still be blamed for causing schizophrenia in an ill child. Somehow, the way they had brought up the child had done it, went the mantra. Mothers, slandered as “schizophrenogenic mothers” for allegedly having induced the illness, were particular scapegoats.
For the pioneering Centre, a location separate from Lions Gate Hospital and Community Psychiatric Services was chosen to underscore the Centre’s independence and to reinforce the premise that family members could get the peer understanding and empathy often missing in mental health services.
Behind Marguerite’s innovation was not only her own experience trying to get help for her son, who developed schizophrenia in his early teens, but also the experience of countless other family members she had come in touch with in years of advocacy work and networking.
This led to another bold innovation by Marguerite. When the Centre was established, she had already done some informal one-on-one support work in the natural course of things, as an extension of the traditional support group. This slowly evolved into something more focused and intensive: permanently available one-on-one family peer crisis-counselling and support, often having to do with getting someone quite ill and psychotic into treatment in the face of an unresponsive system.
By the time she retired, in 2015, she was dealing with several hundred situations per year. Some of the cases were perfunctory and dealt with quickly. Others, however, were intensive and time-consuming. Some would be full-blown emergencies.
Another aspect of the crisis support was advocacy, a long-time mission of Marguerite’s.
A couple of characteristics of the work should be pointed out.
Family members felt safe in the peer context of the Centre and would share with Marguerite and other family members things they would never tell to a service provider – matters such as a lack of understanding and inadequate responses by mental health services. Marguerite, dealing with crisis cases – by their nature, quite serious – also saw the system’s failings and lack of accountability.
The result was that, after hundreds and hundreds of cases, Marguerite and some other family members around her knew more about mental health services, on some crucial matters, than the service providers themselves – had insight into how the system worked and didn’t work that was beyond service providers who, for the most part, lacked the necessary distance and independence.
The one-on-one peer-support work in turn generated a spin-off innovation – a largely case-based advocacy bulletin. Without the support work, the bulletin would not have existed or would have been a pale version of itself.
The bulletin’s journalistic quality was helped by its independence. At one point, a crude cost-cutting measure by the then health authority (North Shore Health Region) eliminated the society’s funding. This turned out to be a blessing in disguise. The society rebuilt its funding independently, which consequently allowed it to report on system failures without having to worry about financial repercussions.
If you’re curious, you can access the applicable NSSS Bulletin issues –see Vol 1, No. 1 (November 2008) through to Vol. 8, No. 1 (September 2015) – at the Pathways Advocacy Bulletin page.
What inferences can we draw from these innovations? Maybe the most important one is how the experience and sensibility that led to the creation of the Centre also informed its successful implementation.
Without that particular experience and understanding, the necessary underlying connection to the innovative concept would have been missing.
This is another way of saying that innovation has its own dynamic. Implementation has to flow from that dynamic and the people who are part of it. Otherwise, it won’t reach its potential or will even go sideways.
Next in the series on innovation: Family-based initiatives in Canada and the U.S. that dramatically changed, for the better, our thinking about mental illness.
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