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See Serena Kataoka's letter to the editor to the North Bay Nugget on their site attached, but for ease of reading and potential discussion here it is... http://www.nugget.ca/2017/11/2...e-death-of-1000-cuts

To the editor:

My brother, Jason, is the type of person who is happy to share whatever he has with those around him.

When there was a car accident in front of our home, he was there for survivors with water, blankets and gentle care until first-responders arrived. When a neighbour in need was depressed, Jason went to their home every day to do their dishes, bring a smile to her face, and accompany her to a community event once a week.

When Jason went missing on Friday, even the staff at our local convenience store were upset, because “he is a good guy” – gentle, compassionate, funny and polite. 

I hesitated to write this letter because Jason struggles to live with dignity in a society in which people who live permanently with “mental illness” are stigmatized and socially excluded.

Collectively, we have taught him that in order to be seen as “a good guy,” he needs to lock down the mental anguish and emotional impacts of living with complex, serious mental health issues (that have been variously labelled over the past 20 years). As his sister and best friend, I have helped protect his dignity from the schoolyard, through to the home we now share on Nipissing territory. But in part because Jason lives with dignity, the mental health care system in Ontario is failing him and, ultimately, our entire community. 

Friday afternoon, Jason boarded a bus from North Bay to Toronto, with no plan and nothing aside from the clothes he was wearing, a partially-charged cellphone and $30.

On one hand, this reckless move was predictable. Four years ago, he had walked from Huntsville to Toronto and landed on the streets (a lot shared with some 447 other people there, according to the Homeless Hub) – scared and alone.

Four months ago, he had requested a respite stay in the hospital (which he has used in the past to do intensive therapeutic work, but such treatment is no longer available). And over the past few months he has been requesting an appointment with his psychiatrist (who he only saw twice in the previous year, for therapeutic purposes).

The day before, he had left a note on our kitchen counter that read “I am so sorry, but I have to go. I love you”and purchased a bus ticket to Toronto; in the course of four hours waiting at the terminal. However, he became so scared that he returned home of his own free will, for the night. 

On the other hand, Jason’s departure Friday afternoon from a loving home and toward the streets of Toronto was shocking.

Over the past few years, working alongside members of his Assertive Community Treatment (ACT) Team, I have seen Jason ease into routines that have enabled him to rebuild his life – to manage his weekly budget, prepare his own meals, quit smoking and even become more involved in activities outside the home such as going to the YMCA for recreation and social events.

So when I took him to the North Bay Regional Health Centre on Friday morning to try to provide him with a more structured opportunity to work through the extreme “stress” that had made him want to leave the day before, he presented with dignity (as opposed to “disturbing the peace”) and did not meet the “suicidal” criteria for admittance.

But how could his plan to live on Toronto’s streets in this cold, wet November have been interpreted as anything other than an attempt to throw his life away? I was mad – angry at a system that could refuse to help someone that was showing us (even if not telling us) how very much he needed it. 

Within six hours of being turned away from the hospital, and one hour of leaving a social activity with his ACT team, Jason was on a bus, headed toward Toronto’s streets. He left no note this time, but when I returned to an empty home, I knew he was gone. My heart sank.

Along with ACT team members and my loving partner, I combed through the throngs of people at the Old Fashioned Christmas Walk, where Jason was meant to be. I traced his usual pathways through North Bay, and eventually arrived at the bus terminal with a copy of his community treatment order (CTO), and staff confirmed that he was en route to Toronto.

Thanks to the strong relationships Jason builds, our uncle John was happy to put his Friday night on hold to surprise him at the Toronto bus terminal, and host him for the night.

Anxious to connect with Jason before he strayed toward the streets again, my partner and I drove to my uncle’s condo, arriving in the middle of the night to the welcome sight of Jason curled up on an inflatable mattress.

With the immediate stress of trying to find my brother dissipating, I realized that I myself was becoming mad – overcome by stress in trying to fill the widening gaps in our mental health-care system, I was no longer in my right mind. But there is no professional support available to me to negotiate this strain, unless things get so bad that I come to consider harming myself or someone else. So I sat on my uncle’s bathroom floor with my partner to have a drink and take a breath. Not the healthiest choice, but it was the best I could muster in the situation. 

Successful as our intervention in Jason’s plan to become homeless in Toronto seems to have been (with him returning home with us), it made me an accomplice to a longer history of failures.

After three days of living on Toronto’s streets in 2013, Jason was picked up by the police for behaviours stemming from coming off his medications so quickly, and admitted to the Centre for Addictions and Mental Health. Deemed “medication-resistant,” he was subjected to electroconvulsive therapy (which research suggests is inappropriate for people living with his diagnoses), and I was forced to stand on the sidelines, watching as this “hail Mary” robbed my brother of his memory and made him permanently disoriented.

After his release, I invited Jason to live with me in North Bay. And after a two-week trial, we moved into a new apartment together. I was happy to be close with him again, and as his secondary decision-maker under a CTO, working with a caring interdisciplinary ACT team, I swore I would never let things get so bad for him again.

But apparently, they have.

Why is Jason’s psychiatrist so overextended that he can only do biannual meetings with some clients?

Why did the hospital turn him away?

Why has his ACT team lost two of the three members that my brother is comfortable sharing his inner world with?

Why am I and other family members left carrying the emotional, financial, social and professional costs of making much-needed interventions? 

As a university professor whose dignity is given, and who has done research on homelessness in Canada, I have the privilege of affirming Housing First as a more affordable and effective model for supporting people who live with a “serious mental illness” (SMI).

But housing is not enough. Even with a strong network of supports, therapeutic work is needed.

Furthermore, the burden of that work would be lighter if our wider society embraced the diverse ways people contribute to our communities. My brother should not have to over-perform being “OK” (which is how he describes his state of being most of the time, even though he lives with mental strain that would break most of us), in order to live with dignity. I should not have to transmute my own madness – both anger and mental/emotional stress – into crisis, in order to be heard and supported. 

Cliche as it might be, we are killing our communities through a thousand cuts. Cuts to hospitals that once provided respite care, cuts to psychiatric services that have lowered the bar from “wellness” to “maintenance” of basic functioning, and cuts to community-based social services that make medication-delivery their primary activity.

Police and family members are dealing with the fallout of these cuts, and neither are adequately trained or funded for doing so. Communities are losing out on the potential contributions of people living with SMIs (e.g. Jason maintained part-time work at a pet store when he was well, rather than relying solely on ODSP), and the fulsome contributions of family and friends who are “spent” (literally and figuratively). 

This letter may not be news, insofar as it is ‘just’ a personal instalment in a well-worn story of a broken system, but I hope you might read it as an indicator of how very bad things have become.

Jason is a model community member with a loving home and caring friends, who is doing everything right – in terms of seeking access to and complying with mental health services.

If things have become so bad for him that being homeless in Toronto is a compelling option, then what does that say about the majority of the 481,766 Ontarians who report having a mental health or addiction disability (Ontario Human Rights Commission 2015), who do not have similar supports?

How many more people and families must be sacrificed in Ontario (and Canada, more generally), before governments heed calls to provide adequate funding and enhanced therapeutic and social services for mental health care? How close does mental illness need to strike in your own family or community before you embrace and become an ally to people with extraordinary minds? 

This letter is my cry for help.

The ultimate cost for ignoring such cries can be measured by the growing numbers of people – especially young men – committing suicide in this country, each year. It has become critical that all of us “Speak up for mental health” (CMHA). Add your voice to movements for improving our mental health-care system, and to fight stigma in our communities (see letter templates on the Facebook page: @FortheloveofJasonKataoka). Demand answers from mental health-care providers and government officials about why people are falling through the cracks, and how we can support them in making much-needed improvements to our mental health-care system. Find, encourage and respect the dignity of people like my brother, whether on the streets or in your neighbourhood. Together, we can make our communities places that offer better options than the streets or death, to people living with mental health issues.

Serena Kataoka

North Bay 

Last edited by Registered Member
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I am in tears...THIS is exactly what I am experiencing with my son Adam.  No help. No access to care when he desperately needs medical care, an ear, and housing.  He is on the streets of Toronto due to trauma caused when my older son was shot by police.  Another tragedy of mental health.  What is CAMH doing about access??  I am so angry like this sister that the "experts" and "evidence exchange" is not gleening out the one very important thing we all need.  ACCESS TO CARE.  Until that is worked on and is available to one suffering with brain illness (my words to prompt change in "mental") we are not further ahead than in the 1980's.

I brought this up at our last meeting of People with Lived Experience Panel at CAMH.  Nobody could answer my question of "what has changed in 30 years regarding access to care??"   Anyone??

What Serena Kataoka and Karyn Graham have shared with us through their actual experience is striking because of their discriptions of struggle with mental health and being homeless.  We have created devided systems of care – Homelessness, Mental Health, Addictions, rather than a population based approach. 

For sure, these divided systems have come a long way, over decades to take a whole system, integrated approach.  Yet a whole system – inter-ministry, inter government - municipal, provincial, federal--driven approach laid out by the mental health commission 11 years ago,  https://sencanada.ca/content/s...rep/rep02may06-e.htm has a long, long way to go. While we have some very good stand alone examples of integrated care, they remain as pockets.

Homelessness has been around a long time, no one is pretending there are instant answers, rather we have to keep stock and think through how we got here and how historically core everyday services – housing/health/social -that helped individuals and families were broken or not built well enough to help people. 

I think of my brother in the 70’s who fit the profile of drugs, mental health, no place to go, who yes was helped by shelters and the mental health system, but who needed a more focused, whole person approach. This might well have helped us as a family as well, in our own broken approaches of help for him.

Principles like these (developed by researchers/practitioners and the people being helped) outlined below can help us more directly shift our system/philosophy of care

Housing First principles: 
1 Immediate access to housing with no housing readiness conditions 
2 Consumer choice and self-determination 
3 Recovery orientation 
4 Individualized and person-driven supports 
5 Social and community integration

Recovery Principles:
• life goals, 
• consumer involvement, 
• diversity of treatment options, 
• consumer choice, 
• individually-tailored services, 
• inviting environment.

While I think Karyn, that the CAMH people could actually demonstrate to you many good examples of progress in care approaches over the years, I think we need to bring focus on accountability for care on our Local Health Integration Networks http://www.lhins.on.ca/  where the system plans are being developed.  I’m not saying go join a committee, but I see it as the venue that shifts the focus from individual organization’s approach and instead has potential to promote actual cooperation on an individual’s care.

Last edited by Registered Member

Vision of System - Mental Health Commission excerpt from chapter 3 https://sencanada.ca/content/s...-e.htm#_Toc133223067

What will be different

 

Individuals with a psychiatric disability live in integrated housing that they have selected in their community; work in jobs and/or participate in meaningful activities that they have chosen; have positive relationships with their families; and have friends who rely on them for support and on whom they can rely.

 

Individuals have services and supports available that they have had a central role in developing, selecting among, and evaluating. These services and supports are focused on supporting people in their recovery processes in their local communities, and are delivered as close to home as and in the least intrusive way possible.

 

Individuals have access to a comprehensive, well-integrated and balanced range of community, ambulatory and inpatient services and supports, offered by both professionals and peers.

 

Services and supports are offered in the context of and are responsive to people’s economic, cultural and social situations, are based on the latest relevant knowledge and are oriented toward successful coping, empowerment, self-direction and recovery.

 

Efforts to change negative public attitudes and their resulting behaviours, such as discrimination, are in place in local communities and are working. Local community resources and the responsibility to include all citizens in community life are seen as an integral part of the community framework for support.

 

Users of services have the resources and authority to hold service providers and funders accountable for the quality of mental health treatment, services and supports they receive.

 

Individuals with a psychiatric disability are not defined by their disability or illness, are recognized for their strengths and are empowered and have the resources to define and live the lives they want to lead to the absolute best of their ability.

 

Source:  Government of Ontario. (December 2002) The time is now: Themes and recommendations for mental health reform in Ontario. Final report of the Provincial Forum of Mental Health Implementation Task Force Chairs.

 

The key types of services that are required to make such a system a reality are presented in graphic form in the diagram “The Continuum of Care.” This diagram is drawn from one of the Ontario Mental Health Implementation Task Force reports (Toronto-Peel Implementation Task Force Report).[166]

Text Box: As discussed in Chapter 3, the Committee believes strongly that mental health issues should be approached from a variety of perspectives, only one of which is the “medical” model.This framework does not present a definitive listing and categorization of services and supports; those listed are not exhaustive but are illustrative of the services and supports that are needed. Thus the model should be regarded as one useful way of depicting the range and types of services and supports that are required in a transformed mental health system.

One advantage to this framework is that it is able to encompass the full range of services and supports, listed under three “levels of need” (first-line, intensive and specialized), with a fourth category that cuts across the three levels. This terminology moves away from commonly used terms that some associate with an overtly medical approach, i.e., primary, secondary and tertiary care. As discussed in Chapter 3, the Committee believes strongly that mental health issues should be approached from a variety of perspectives, only one of which is the “medical” model.

 

Text Box: First-line refers to prevention, assessment and treatment provided by frontline providers.Each level of need is associated with a particular array of services and supports. People will usually receive most of their services from within a particular level, but they are not limited only to the services within that level.

Bill, thank you for your acknowledgement of struggle.  Its like loosing another son all over again....and I blame the health system. I have tried so hard to do so much with the bureaucracy at CAMH...the layers and layers of research over research has failed us all.   A lot of it is just fluff and our government is throwing money at it not knowing what to do.  

I met with Minister Lalonde this past Thursday in her office in downtown Toronto. Her senior policy director and policing policy official was with her.  I presented the issues our Affected Families of Police Homicide want included into the Safer Ontarios' Bill 175 should include. 

One was trauma supports for AFPH and second was police training.  This is where the conversation was shifted to the mental health care system.For all it has not done to all it still does not provide. My experience had us all teared up. I made an impact....

At that point I found it perfect to ask for a meeting with the Minister of Health Deb Matthews...to discuss my solutions to a far reaching issue that really needs access to care more than any other puffery.  I look forward to that meeting and all that my losses have been  EVIDENCE  for CAMH and all agencies to stop  spending money on more research and put money into CARE ACCESS  when one is desparately seeking it all over the province!

I have also requested a meeting with Premier Kathleen Wynne.  

My meetings with top policy advisor's and decision makers will push for access...and police are pushing for it too. 

Not enough has been done for simply....access to care...this. is. critical. 

 

 

Hi Karyn, Moving to the political level is such a key, vital move by you and for any attempts at system change.  It also is what every organization has in play, yet hard to negotiate, an often neglected area of learning/discussion in the world of practice implementation. Some kind of version of "separation of church and state."   

I'm glad you said this rather taboo part of system change out loud to us.  Especially because it can become an intrical driver of change, but I would say the research crew, the people on the front lines improving practice in a systematic way, are a relevant component too.

I think about how the initiation of a national homelessness strategy in 1999 was actually launched.  It needed political heat to be applied, along with the reality that people were dying... on the streets of Toronto, then research and scholarship bridged to practice.

Would anyone in this discussion have some guidelines and references on the role of politics but also the relevance of individuals stepping forward, leading it?

Last edited by Registered Member

Thank you for starting this discussion, Bill, and for sharing that poignant and heart-wrenching letter.

I truly believe that there is a hidden but intrinsic connection between political will and the stigma that surrounds mental illness. The various anti-stigma campaigns in existence now and in the past, Bell Lets Talk, We all Belong, Emerging into Light, etc., all have one thing in common: the message of inclusion within society. Political will can be spurred by the desire to "save"or "help" the "unfortunates" of society but true paradigm shifts only really occur with the realization that the change will impact everyone in a positive way.

Even if we use the old stats of 1 in 5 Canadians, it still means there is not a person in Canada who does not know and probably care about someone living with a mental illness and/or addiction. As long as politicians and change-makers continue to see this as "helping others", none of the changes will last longer than the flavours of the month/political party/election campaign in which they are touted. We need to, for want of a better term, "normalize" Mental Illness and Addictions so that we speak of them as we would any other illness that challenges our lives. We need to get our leaders and politicians to be comfortable sharing their personal experiences and challenges without fearing judgement and reprisals from the voters. 

I have lived with Mental Illness for most of my life and loved and lost a mother who also lived with one. Currently, I have a daughter who is trying to face her own challenges head-on within an academic world that spouts acceptance and understanding while limiting services because of the way resources are prioritized. I have worked in Mental Health for 25 years and have reached a saturation point with the rhetorical tautology of our service systems. If we took even a portion of the money we spend on research, campaigns, planning and platitudes and put it toward giving immediate service to people at the time they need it, we could save so many resources that are now used for crises, emergencies and often, sadly, apologies.

Jaded as I am, I still really want to believe that when my daughter reaches my current age, she will live in a world that offers services that are accepting, accessible, affordable and effective. In the meantime, I will continue to voice, argue, advocate and pressure in whatever way I can and I am so glad there are so many others out there that are willing to do the same.

Rheanon, so right to put in context

...realization that the change will impact everyone in a positive way

In the everyday efforts of everyone in the designated catagory of "health" I believe or aspire that we all know deeply what you are saying, although it doesn't get said out loud very often.

I think this also is linked to another category of help called "work place mental health,"  where for example really... the local pizza shop people/workers have  their version of care for each other.  This "Sociological Imagination" I am suggesting comes from an 70's/80's lefty idealized vision of people, community, society which can get me into personal troubles with public issues - to steal and reform from Sociological Imaginationhttp://www.faculty.rsu.edu/use...ts/Essays/Mills3.htm                                                (Super Summary by Frank W. Elwell)

For me, my version of anger/frustration about system change that you are talking about is the disappointment of the promise embedded in the rhetoric and the efforts to implement it.  So your last paragraph of keep chipping makes sense to me, grounded in our individual efforts, and Betty Lou's post https://www.eenetconnect.ca/top...-is-not-good-opioids too, while keeping our sociological imagination.

 

Last edited by Registered Member

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