Consultation Overview

QSOS Findings in Consultation with People who have
Experienced the Mental Health System

To Our Membership and the Task Force

The Queen Street Outreach Society (QSOS) is a community non-profit made up of people who’ve experienced the mental health system directly. We are sometimes known as mental health consumers or psychiatric survivors, ex-patients or users of the system. QSOS provides education, information and training on mental health issues from an experienced perspective.

In accepting a consultation contract with Jenny Carver, we hoped to assist the Toronto Peel Mental Health Implementation Task Force to hear directly from isolated and under-represented people. Our report considers barriers to inclusion that our community faces, and possibilities for reform in reaching out to our community.

As agreed in the consultative design and contract, this document is written independently to report to our membership and to complement Jenny Carver's cross-sector report, "On the Way to Making It Happen: A Brief Summary of Feedback from Consumer-Survivors, Family Members, and Providers Consultation Sessions". Any comments regarding this report are welcome. The report is divided into two parts:

• Excerpts, quotations and points from our community regarding emerging recommendations from the Toronto Peel Implementation Task Force
• QSOS outreach methods and issues pertaining to future consultation, feedback mechanisms and participation

Macro:
Base Priorities

An ordered list of people's stated hopes and concerns (each given in three minutes or less) regarding system services and supports (beginning of May 8^th Toronto Reference Group Meeting).

Basic Needs

• hope
• social mobility

Housing

• addressing housing market issues
• permanent affordable housing built
• addressing violence in the shelter system

Employment

• opportunities for real employment (reducing discrimination)
• ODSP disincentives to work removed
• skills updating for the current market and workplace
• job co-op placements
• higher education costs subsidized

Responding to Crisis

• safe houses and crisis centres funded
• major issue of isolation dealt with

Legal Issues

• Bill 68 and ACTT reconsidered
• address legal rights
• need for consumer survivor legal and political protections
• more advocacy
• invisible disability important to raising awareness
• legislation: anti-discrimination
• more acceptance from society
• Ontario Disabilities Act reviewed

Public Awareness

• more education [e.g. sensitivity/experience training] to police, providers and the public
• more focus on media violence, and myth of survivors being violent

Clients Need

• more mental health counselling
• use psychosocial models
• more psychotherapy at all levels
• recovery preferred to "symptom management" approach
• reduced reliance on medical model (mind/body split)
• deal with people's side effects
• establish risk or "seed" money
• more supports
• more alternatives
• more youth staff
• need for better food (nutrition crucial to health)

The System

• deal with hospital funding cuts
• more access to services
• more networking within and between agencies
• find and remove "system traps"
• how can we deal with each other in this community

Mezzo:
How to Coordinate Involvement of Consumer Survivors, System-wide

"I’ve been listening to the task force and I think that we really need a c/s initiative that is Toronto wide and that would be sort of the voice of consumers at whatever governing bodies are put in place. Consumers right now are not together in any coherent group. We don’t have real training or background or even people to bounce ideas off. We go out to these meetings and we’re isolated among all the service providers. They’ve been talking a lot about consumer/survivor representation, but there’s the question of needing an organization to keep the issues and advocacy moving on behalf of consumers. Such an organization could do independent research and consumer evaluations of the service system and where the gaps really are, etc. I don’t think service providers should be evaluating themselves." (West Toronto Invitational Group)

Coordinating Involvement on Cross-sector Governing Bodies,
And on Consumer Survivor Advisory Bodies

Reference group comments (from Peel and Toronto) were not transcribed verbatim due to existing resources, but paraphrasing and key points were noted from responses to questions developed by the Task Force.

Brampton Reference Group discusses barriers to participation on governance and policy development bodies:

• Povertyprevents basic level of participation in governance (both in and outside the consumer survivor community). Poverty can be used to influence or prevent participation.
• Reliance on agencies and professionals for contacts and information can be used to influence or prevent participation.
• Personal responsibility must be generally promoted: consumer survivors must engage in participation (as they would or do in recovery).
• Terms and usage, or codes of governance, must be explained and made usable ("Come to our level!"). Established codes of governance do not communicate to general experience, ethnoracial diversity, individual difference, "outsider knowledge", economic disparity. Thoughts, feelings and expression must be heard cross-disability, cross-difference.
• Saying you need us (participation in content) vs. doing something together (acknowledging and following our agenda, in form) is an issue in the present consultation. "Will our suggestions sit on a shelf?"
• Equality by quorum necessary [33.3% - 50% + 1 widely suggested], but we must be better informed and up to date (e.g. advocacy research, consumer/survivor co-chairing committee).
• Strategy training and planning important. Participants must be advised regarding financial and legal issues, be given information (e.g. regarding other stakeholders' interests).
• Participants must be trained on building confidence and deflecting manipulation. Training on finding, checking and using information, seeking and confirming systemic transparency (see below).
• Holding people accountable and getting consumer survivors to recognize their importance to other consumer survivors: "how to get others to change their opinions, answer questions and inform people, get them to become the voice of consumers".
• Constituency must provide a base for addressing issues in priority. Consensus building important, establishing caucus and discussions utilizing difference. Work from individual's abilities and style ("Just because I’m slow, doesn’t mean I’m stupid").
• Community building and support crucial to constituency and its mechanisms. Public education (including legal) important.

Thus Positive Consumer Survivor Involvement =

Possible Incentives for Participation in Representative Process (from QSOS)

• Establish an expense-based replacement to "honoraria"
• Offer ongoing participants free education (e.g. on assertiveness training, anger management, self-advocacy skills, etc.) delivered in conjunction with peer planners.
• Offer long term representatives co-op placements with guarantees against punitive ODSP or OW practices (or offer free help from an employment counsellor who is culturally competent).

Toronto Reference Group discusses System-Wide Expanded roles for Consumer Survivors

• 'Services should be designed in part by consumer survivors, and their involvement should be grassroots-centred.'
• 'Peer contact/ support system should be made available upon entry into the system [e.g. hospital, youth, early system contact].'
• "In general, peers like myself should have access to the system in the same way that professionals do."
• 'Buying in: Peer knowledge should be instituted in professional development, involving merit and credentials [awards, certification, standards, evaluation of compliance].'
• 'Like in the addictions system, peers should be seen as credible sources of treatment and recovery.'
• "Remember that peer support worker is also recovering. They need training and support."
• 'C/S Representatives should not be appointed by the DHC.'
• 'C/S Representatives receive professional advise, training and information on self-esteem, fiscal and governance issues."

Summary of consumer survivor responsibility to constituency:

• Grassroots or un-funded groups are contacted, supported and work with consumer survivor organizations (e.g. to contact isolated persons).
• Funded organizations collectively help establish education and other goals for the community. Representatives (to advisory body or system governance body) may be elected through wholly independent process.
• Advisory body is involved in systemic advocacy/ ombudsman role ("yet where's the ceiling on advocacy?").
• Interaction between c/s advisory body and c/s organizations unexplored.
• Interaction between c/s and other stakeholders unexplored.
• Research and development piece unexplored.

• "Need a Pass/Fail indicator for services, such as not receiving a phone call in a month. When they don't provide services they say they do."
• "Need a silent audit, undercover evaluators, like those 'mystery shoppers'. Consumers who know what a service does and what it says it does, asking the right questions."
• "Consumer survivor evaluation of services should be required in policy." (Toronto Reference Group)
• "[How would you determine whether you were doing a good job with any c/s initiative you might start? How would you measure that?]
• Accessibility. Number of people who attend. Versatility. If you are able to have many different programs available. A group for whatever our needs are. If I can make friends there. If I can come when I want — days or evenings — but I’m not forced to attend every day. Should decrease number of hospitalizations. Should be a place (like Eden Place) where you can come and go, shoot the shit, sit in front of the computer, watch tv, not be judged. A place to do art, music, writing. Its all hypothetical — we don’t have the money!" (Brampton and Caledon Invitational Group)

Outreach to Isolated Consumer Survivors (Underrepresented within the C/S Community)

• "Outreach is a skill. You can’t just start asking questions. You have to be there, with people." (West Toronto Invitational Group)
• 'Talk about basic needs first, before asking for involvement.'
• 'Non-intrusive is necessary: open, relaxed. Informal space. Not exploited.'
• 'Basic credibility is possible with peer-to-peer contacts.'
• 'Trained on emotional trauma, sensitive to where person is coming from.'
• 'Use existing baseline services [Out of the Cold] for connections'
• 'Trained to listen'
• 'Offer what's available, not what a person should be doing.'
• 'Offer people on the margins ways to manage stress and provide social opportunities.'

Brampton and Toronto Reference Group discuss Advocacy:

• 'Advocacy isn't so important if services did what they say they do.'
• 'People should have the option of leaving a service if not appropriate…'
• "Pills can't talk for you."
• 'Power to establish contracts between various providers (who's responsible for what).'
• 'Ability to call professionals on standards of practice and treatment expectations.'
• "We need a 'Basic Needs Act'."
• "We need a Bill of Rights." (Toronto Reference Group)
• "We need a human rights organization" (Toronto Reference Group)
• "Advocacy should be enforceable. Complaints should go somewhere." (Toronto Reference Group)

What different kinds of advocacy should there be and what should they look like?

• Self-advocacy and personal relationships (first level)
• people need basic and legal education (e.g. through brochures: how to do it yourself, representing yourself, self-esteem, not just the what the law says)
• basic needs must be met
• access to computers, telephones
• assistance with literacy and comprehension
• access to advisors who "know the ropes"

Staff support (second level)

• advocacy component to job description (may cause tension between providers) for professionals.
• consolidate contracts between other providers
• family physicians should be able to advocate in medical areas where psychiatric opinion is unavailable or inappropriate (GPs informed and able)

Peer advocates (second level)

• set up meetings, groups and information networks
• make presentations to people in the hospitals and others in (and out of) the system)
• use existing consumer survivor agencies to help people
• encourage active advocacy by people using the system
• function made respectable to professionals (even if unpaid)

Professional Advocates (third level)

• work with lawyers
• advocates in the College of Physicians and Surgeons complaints process

Ombudsman / Commission

• "We need an ombudsman so we have some power to advocate." (West Toronto Invitational Group)
• systemic level (system and beyond system) issues like housing and employment
• work with Canada wide health reform issues
• clout and determination to deal with system wide issues

Micro:
People's Personal Opinions, Feelings and Experiences On Mental Health Reform

Legend of Consultation Meetings

Reference Groups:

2 in Peel, 2 in Toronto

Quoting Isolated People

I want to be free, that’s all I want, and to do what I want to do. What’s the system: justice or injustice? There’s no system. (Interview with a forensic patient / inmate)

I tried housing several times but it never worked, the people were just so intolerant. What really helps me are people who give me money when I bum in front of the beer store. The people at the Corner Drop-In are okay, at least they let me sleep and I can have some better food. (Interview with homeless person living beyond the system)

Some like myself are on medication and we’re treated very badly. Very often I can hardly walk, and lay for days in bed but no one really cares…. I’m waiting for a place in a geriatric ward or old age pension home with support for almost five years. I have applied to several. But I’m poor, so I don’t think I will make the cut and will die in this place. (elder person in rooming house)

Most others are not so well off like I am, helping out, but that doesn’t matter. I’m treated the same as anyone. Got no family, no visitors, no fun, just the same daily routine…. To never have enough money to make ends meet and to have to beg for food or money. I had to wait to get in here [the ward], but it’s okay, at least I have a roof over my head. (Interview with elder person in a "psychogeriatric" ward.)

It’s okay being in here [the ward]. That’s really the only thing that was helpful. Going for years to the doctor’s didn’t do much and my family didn’t want me, neither did my kids. They don’t come to say hello. I couldn’t afford to go into a better place, no money. So, it’s okay where I am. I’ve been drugged and under medication for as long as I remember. It helps but it doesn’t make you feel really better. Very often, I think that it was useless and made me feel more depressed. (Interview with elder person in a "psychogeriatric" ward.)

Nothing really helped me coping with my illness and it has gotten worse since I’m in here. They don’t let you smoke when you want and are very strict. What really kept me from flipping out were some of my friends, they talked to me and I wasn’t feeling so lonely anymore. From hospital to jail, back into the hospital, no one really cares. This has been the cycle for over 20 years. And the medications do nothing, they tried too many of them. I think that my body becomes drug resistant. (Interview with a forensic patient / inmate)

Medication should be reduced, too much locked up for long periods of time. I think they make people lose their independence, reliance on the system. The hopelessness, despair, take confidence away. I can’t take care of myself to a large extent. I never sat down to feel sorry for myself. (elder person in rooming house)

Underrepresented Groups

Among the black community, people are private. They would rather suffer before going on welfare. They’d rather work for next to nothing. Some won’t even collect unemployment insurance. I wouldn’t tell people in my community that I have a mental health problem, and they wouldn’t tell me. (Scarborough Invitational Group)

You have to remember that North York is a vastly diverse area. The Jane-Finch area for e.g. is its own very strong community. So is Bathurst and Sheppard. It would be hard to open that up. The YMCA has had a big role in some of these community programs. These communities are good at meeting their own specific cultural needs. For example, even though there are generally few programs for youth regarding mental health issues, the Jane-Finch area has made a real effort to put such programs for youth into place there. The Jane-Finch area has had a lot of single advocates who, through their own initiative, got people involved. I don’t know where they got their funding. (North York Invitational Group)

I’m from China, where I had never heard about ‘consumer/survivors’. Now I’m aware; I learned. I used to work in a bank. I want to pursue my education, my dreams, live a normal life, not be on a fixed income forever. I’d like to see c/s’s have access to higher education if they wish. (West Toronto Invitational Group)

In Caledon we have a shortage of services. [even compared to Brampton?] Yes. At the Peace Ranch, we have to come down to PAR every Tuesday to join the clubhouse. I was sexually assaulted… and I went to get counselling in Caledon. The counsellor said it was too dangerous for me to get counselling. She was afraid that I might try suicide or something, if I brought up all the old feelings. So they wouldn’t give me counselling for that. There are buses to Brampton, but they’re few and far between. Services need to be extended to Caledon. There is no psychiatrist, no crisis line. (Brampton and Caledon Invitational Group)

I’m a single mother. I’ve been in and out of psychiatric care most of my life. For the last 10 years I’ve been in supportive housing. It has helped immensely. It's created employment opportunities and skills for me. I’ve stayed in positive institutions such as the Gerstein Centre. I have a philosophy of what I think is helpful and not. I found a recent stay in hospital not helpful. I’d like to see more places like the Gerstein Centre. Places that are non-medical, compassionate. I will say that during my last hospital stay, the only positive thing was being around other people who had experienced mental illness. I found that they were more supportive in my recovery than doctors. (East Toronto Invitational Group)

I can read some, but I have a learning disability. I find it hard to comprehend things like this document. I’m in a building for special needs. Most of the people in the building — it’s a group home — are ok. But some will call us retarded or slow. I usually just walk away. But sometimes its hard. If we confront, we get into trouble. Police were called on us. We weren’t doing anything wrong. Until about 5 years ago the PAR program officially couldn’t take anyone with learning disabilities. Now they can, but it actually isn’t a good fit. They are two different illnesses. There’s discrimination both ways. (Brampton and Caledon Invitational Group)

One population whose needs aren’t addressed by ‘diversity’ is trauma survivors — victims of torture. (North York Invitational Group)

Support, literacy, getting around. Not to be told how I feel. Just because I’m slow, doesn’t mean I’m stupid. (Brampton and Caledon Invitational Group)

You mentioned the Urban Alliance on Race Relations. There is also an association that gives out awards to black entrepreneurs. We could have a festival, show movies about c/s’s - look at the success of A Beautiful Mind. We could show the other side of c/s’s. There are lots of c/s’s who are writers, artists and performers. Produce films and artwork by c/s’s. Open up the dialogue. Expand Rendevous With Madness to something really big, create something like the jazz festival in the Beaches, which used to be just a small thing! (Scarborough Invitational Group)

Youth services kept me out of jail. I got into trouble, they did an assessment with me, gave me 3 years probation, and I had to stay on my meds. I was in Penetang before that. It was terrible. (Brampton and Caledon Invitational Group)

In Caledon, the closest service is in Orangeville. They have a psychiatrist come in once a month. There is no psychiatric ward at the hospital in Orangeville. But there is a lot of need. We do run a day program and we have a lot of people come in who suffer from schizophrenia or manic depression or whatever the diagnosis may be. We have 10 residents on Wednesdays, but we can get up to 30 people at our day program. They don’t have enough services for that many people. Some people have to go all the way to Guelph to see a psychiatrist. If someone at Peace Ranch is in crisis, there’s no hospital. We have to go to Brampton, an hour’s drive away. (Brampton and Caledon Invitational Group)

Crisis and Recovery

I’m not sure that recovery is the right word. I know that I need drugs — if I go off my drugs, I go nuts. (Toronto Open Session)

I believe that you can be cured of mental illness. (Etobicoke Invitational Group)

With mental illness, [recovery] means managing the illness, bringing it into balance. (Etobicoke Invitational Group)

I’ve been diagnosed with a few mental illnesses. Medication works for me. (Mississauga Open Session)

I’m lucky. When I was diagnosed with depression, I wasn’t sure that the doctor was really listening to me. But my GP knew him and he told me that he was one of those ‘laid back’ types of doctors. Now I really like him. He listens, and he helps me. My depression isn’t that bad. I wanted to go off my meds after four months, and he showed me why its important to stay on for at least 6 months. But he had me off them within 6 months.(Mississauga Invitational Group)

The idea of recovery goes against everything I’ve been told. I was told by a psychiatrist that in the 22 years that he’s been practicing he never heard of anyone recovering from a mental illness without medication. But I’ve seen people living the lives they want to live — maybe not lives that I personally would choose, but lives that they want to live — without medication. So, I know that that psychiatrist was wrong. (East Toronto Invitational Group)

The first thing needed is an experienced front-line worker. This could be a peer. They would help a person navigate the information about the system. They would need listening skills. They’d need to know the right questions to ask. (North York Invitational Group)

I was recovered and I thought, cured, for 18 years. But then my circumstances changed. I lost my job and my symptoms re-occurred. I became sick again. Now I can’t work. (Etobicoke Invitational Group)

My doctor gives me my meds, makes me calm. So now what? Does that mean I’ve recovered? No matter how good I feel, I still have to go out and face society. Society triggers me. Society treats me the same. (North York Invitational Group)

I was dissatisfied with the document. I didn’t understand it. I see my psychiatrist every month. I have a mutual understanding with him. He doesn’t force meds on me. He is open. I feel that he does a good job diagnosing and medicating me. (Brampton and Caledon Invitational Group)

I read the document carefully. I wasn’t impressed. Of course people can recover from mental illness. But certain mental illnesses rebound. Certain mental illnesses are permanent. Certain mental illnesses require that you take meds. You may recover enough to live an adequate life, but you can’t go back to the workplace. Such people shouldn’t feel inadequate…. I was dissatisfied with the document. I didn’t understand it. I see my psychiatrist every month. I have a mutual understanding with him. He doesn’t force meds on me. He is open. I feel that he does a good job diagnosing and medicating me. (Brampton and Caledon Invitational Group)

The rhetoric of the ITF is that people aren’t necessarily mentally ill for biological reasons. This implies a bootstrap mentality that says people can do it on their own. (Etobicoke Invitational Group)

I do believe that recovery is possible. It depends on your definition. The dictionary definition of recovery is ‘to return to normal’ — but for each individual, returning to normal is different. How are service providers supposed to know what recovery is for their clients? For me, recovery means being off meds, having friends, meaningful work, etc. But does that mean I’ll never relapse? Recovery should be the basis of an approach because we need a base line. But it has to be consumer driven. Nobody can ‘recover’ another person. (North York Invitational Group)

My doctor put me in hospital even though I told him not to. I knew I wouldn’t get better in a hospital. He released me after a week, I went home, and overdosed. This happened several times. I would have preferred a 24 hour crisis service. Recovery can’t take place in hospital. I agree that we need more natural, non-institutional settings and encouragement to take risks. My husband helped me, not the hospital. (Brampton and Caledon Invitational Group)

I agree 100% with the document regarding recovery. I don’t believe in mental illness but I believe that we can make use of the concept of recovery for what the government is trying to do right now. (North York Invitational Group)

Recovery for me is 25% my meds, 25% my doctor and 50% me. I understand that there is no cure, that all I can do is learn more about it. (Etobicoke Invitational Group)

We have a strong financial argument to make. Not only has the system been failing, its not at all effective in financial terms. The system isn’t cost effective. Recovery can save the government big money. We have moral leverage as well, but they’re more likely to listen to the financial argument. (East Toronto Invitational Group)

I was diagnosed as schizophrenic. Now, I’m a devoted Catholic. I was put on meds a couple of weeks ago. Recovery takes a lot of work. (North York Invitational Group)

I don’t believe full recovery is the goal. (North York Invitational Group)

Doctors should state exactly what recovery is. Doctors should be honest about the need for patients to do some of the work. They shouldn’t just say "if that pill doesn’t work, I’ll give you a different one". Clients need to take an active role in their recovery and providers should recognize that. (North York Invitational Group)

They’d have to be liberal, flexible, open minded [to respond to me]. My values may be different from the general society’s values. (Mississauga Invitational Group)

An angry person can be given pills and be made calmer. But something like anger management therapy gets more to the causes. (North York Invitational Group)

I’ve been going to the group for 5 years. I’ve asked the staff when they think I’ll be ready to move on. They said ‘its up to me’. I’ve had people tell me that they’d never keep going to such a group for so long — but where else do I have to go? (Scarborough Invitational Group)

My experience of being a survivor is that its like a war zone. People are stressed — they’re engaged in too much self-disclosure; they can’t clear their minds enough to be able to talk about what’s wrong with the system that they’re in. I’m in a place now where I’d really prefer to try to solve my own problems. All the abuse in the past 10 years — I don’t want to go to any agency — I’d prefer to get help from my neighbour or my partner. I don’t want to have to go to agencies. (West Toronto Invitational Group)

I wanted to go to the funeral of someone in the group home who died. The staff didn’t want me to go. That upset me. I called the crisis line, and they told me it wasn’t a crisis. They referred me to the distress line, which was busy when I tried to call. We were so upset at suicides that were happening at PAR — but nobody would talk about the fact that they were suicides. They tried to deny it. Finally, they called in a grief counsellor. He gave a workshop and grief counselling. The entire clubhouse turned right around. If it wasn’t for members demanding that, we’d still be all screwed up. [Why aren’t staff providing that?] Because that’s not their mandate, not what they’re qualified to do. (Brampton and Caledon Invitational Group)

Even if a worker does ask you what you want for a change, you may be so used to not thinking about it, you can’t even answer such a question. I remember one time, my worker asked me what my thoughts were about my future. I just stood there going "um". I wasn’t prepared for the question; he had never asked me before. (Etobicoke Invitational Group)

Your records from your past follow you around. You wonder whether the case manager will just go by that. You may just want to leave the past behind as part of your recovery process. I’ve had workers ho say ‘remember you’ve done this or that’. I need to move on. (North York Invitational Group)

Recovery encompasses the physical, mental and spiritual — not just the medical; it's more inclusive, not just about symptom alleviation. (North York Invitational Group)

Basic Services Including Housing

For those without computers or TTC fare, the ITC report could have been mailed out to make it more accessible. (East Toronto Invitational Group)

One of the things touched on a little bit in the document is housing. This is where the federal, provincial and all levels of government are sorely lacking. There aren’t enough dollars to create affordable housing. This is a reason for concern. The fact that people with a mental illness don’t even have a place to stay should be a priority. (West Toronto Invitational Group)

It was mentioned that there’s no money for housing. Should we just sit still or try to do something? We should have a task force like this every year until something is actually done. They have money — it’s a matter of whether they want to give it out or not. We should make noise to get them to listen. (East Toronto Invitational Group)

The stigma of mental illness, particularily the way we are sensationalized in the media. — that makes it hard to get housing! (East Toronto Invitational Group)

You aren’t going to change private landlord’s views about mental illness. It would be a lot more expensive to try to do that, than to build more subsidized housing. (East Toronto Invitational Group)

Most people still don’t consider housing a human right, even in this society that prides itself on a belief in human rights. (East Toronto Invitational Group)

They seem to be almost turning some of the shelters into psychiatric hospitals — but they are even worse than psych wards —they have some really terrible rules. You have to give them your medication and they say when you get it, which contravenes the Canada Health Act right to consent. I refuse to stay at those places. I was sitting in the cafeteria at one shelter and some of the women who seemed seriously mentally ill were screaming and yelling; I have no problem with that; it just seems that at the shelters no one seems to know how to help these women without shooting them up with drugs. There needs to be at least 4 or 5 mental health workers in this system who have been consumer/survivors themselves. I’d rather sleep out on the streets than stay there. I’m sure its much worse for anyone who is severely mentally ill. Most of the people there have hair trigger tempers anyway, because of the overcrowding. (East Toronto Invitational Group)

There are c/s groups in North York that aren’t funded by MOH. I have a vision of there being a 24 hour drop in for c/s’s to support them in whatever they need. That would be complementary. It's not a replacement for the medical system. (North York Invitational Group)

Every time we try to get more housing we have to go to community meetings to defend ourselves. People there call us horrible things — murderers, rapists. People need to be educated. They really don’t understand anything about poverty and mental illness. (West Toronto Invitational Group)

Most of the helpful services that I’ve received from social workers or agencies were not in their job description. I’ve found alternative therapies helpful, but I can’t pay for it. I once lost all my belongings in a fire. I went to social services to ask for some money for clothing. I had a pair of rubber boots with a gash in the foot. They gave me some TTC tokens to go to Canadian Tire to buy some patches for the boots. Meanwhile, they spent $800 a day to keep me in the hospital. (East Toronto Invitational Group)

Perhaps information about events and services could be included in our ODSP cheque envelopes or a hot line run out of ODSP. Even if you get the information with your cheque, you need to be ok enough to take it in. (Etobicoke Invitational Group)

Making our F and A bigger, more staff. That would be cheaper than building another F and A in Scarborough. (North York Invitational Group)

Housing, housing, housing. (East Toronto Invitational Group)

There is a need for more one to one interaction between workers and clients. I never even knew anything about ODSP for a long time when I could’ve used it. No one told me. It's hard to get on it, even when you know about it. I had to appeal. (Etobicoke Invitational Group)

I think that every survivor needs a case manager. That goes against my grain to some extent, but I’ve learned over the years that we all need someone to look into these issues for us — and they should be well funded. I asked for one and was told that I didn’t need one. But I know from experience that I can’t cover all the bases myself. I don’t think for example that the public trustee necessarily knows all the ins and outs of the different systems. For a time I tried to be my own case manager, but even getting a health card was difficult for me. (Etobicoke Invitational Group)

There should be alternatives to 911, police, hospital emerg. Mobile crisis is usually out on a call when they’re needed. They say they can’t come for 8 hours. By that time, the person’s anxiety will have built up. When they do come, they usually just ask whether you want to be taken to emergncy. If I’d wanted that, I could have gone there in the first place. We need safe beds, respite services. (North York Invitational Group)

ODSP doesn’t just hand out a Metropass. They won’t let you have tickets to come to Friends and Advocates meetings for example. They just give them out for the doctor. I had to walk for half an hour to get here. (Etobicoke Invitational Group)

We [Etobicoke] could use a drop-in centre, like PARC. With an open—door policy. We need a way to learn about what’s in this area; an info line. We need a place to get alternative medical treatments. (Etobicoke Invitational Group)

Work and Volunteerism

I applied for a part time job at Houselink. I figured with medication, I’d be working poor. This would incline me to want to try to make it without my medication. And if the job didn’t work out, I’d be destitute. They don’t make it worthwhile to take a part time job. (West Toronto Invitational Group)

I see the bottleneck as being the job situation. No matter what training you get, if there are no jobs, that’s where it ends. I don’t know how you’re going to create a caring community if people can’t get jobs in the community. [Playing devil’s advocate, what about the 150,000 jobs presently created in Canada because of its strong economy? That’s coming from the government of Canada]. Yeah, but if you go cold-calling for a job and say you have a mental illness — forget it! If you can go in with people knowing you and what you are, that’s fine. But if not…(West Toronto Invitational Group)

I applied for a job as a manager, awhile back. I was short listed. Then, it was between me and one other person. I was asked if I had any absentee problems. I said ‘no’. Then I was asked if — for ‘insurance’ purposes- I had ever been hospitalized. What should I have said? I told the truth, that I had. Then, I was asked what it was for. I had to say ‘mental illness’. I didn’t get the job. (Scarborough Invitational Group)

The document says a lot about education and stigma. Companies need to be educated about mental illness. (Etobicoke Invitational Group)

We need more employment for consumers in the mainstream agencies. We should be challenging agencies, asking them how many consumers they employ and plan to employ. There’s a dichotomy between what the agencies say they want to do — ‘empower’ the consumer’- and what they actually do, which is often to refuse to hire consumers to work in their agencies. (West Toronto Invitational Group)

The Ontario Conservatives want to blame mentally ill people who don’t want to work, but they won’t hire us either. They don’t want to look at us. (West Toronto Invitational Group)

I know that I’d be better - my self-esteem would be better - if I had a little more money. Maybe then, I’d be well enough to get a part-time job! And then, maybe I’d be saving ODSP money in the long run. But ODSP doesn’t see it that way. They’d rather see people sell their work and labour for nothing, than allow them to keep a little more money. They’d rather keep people scared. They aren’t interested in giving people incentives. They are only interested in forcing people into minimum wage jobs. But when I’ve tried to work, I’ve always gotten sick, and when you take time off, employers don’t put up with it, they think you’re lying, and they fire you and then its really hard to find another job. I’m not proud — look at my teeth! I’ve asked for an upper plate — that’s all I want. My doctor applied for one on my behalf. They said ‘no’. How am I going to get a job with no teeth? Never mind getting a job — how am I supposed to feel, walking around like this? It would cost several hundred dollars. I can’t save anything. (Scarborough Invitational Group)

I’ve been an employment counsellor for street youth. I have no education. I was hired based on my own experience with being on the streets.

- I have degrees, a lot of us do. I’ve supervised people, I’m also an artist. I’m very adept at helping people get work.

- I’m in the process of applying for a job in a consumer/survivor position as a volunteer coordinator. I can’t tell you what a relief it is not only not to have to hide my experience with the mental health system, but to actually have it valued! (East Toronto Invitational Group)

In society, if you do something worthwhile, you should get paid, but most of us are on ODSP or welfare and would get our money clawed back anyway. There is something other than monetary value. If we had a well-coordinated group with expertise — if it was really given a chance and listened to-that recognition would be a reward in itself. On the other hand, when you’re the only volunteer in a room full of service providers who you know are getting paid maybe, 50 or 80 thousand dollars a year, it gets to you. (West Toronto Invitational Group)

It depends on how you define work. I have a nephew who is autistic. He works in a part time job at the library. He doesn’t do high level intellectual work, but it means everything to him. Its work to him. (Etobicoke Invitational Group)

Peer to Peer

I started a consumer-run coffee shop at the hospital. I went in twice a week to the patients in al the rooms, introduced myself. I did it for 6 months, but then the government cut the funds. This was more than 10 years ago. (Brampton and Caledon Invitational Group)

The stigma isn’t there. Peers can appreciate poverty. There is nothing to hide. Sure, my psychiatrist says ‘You can talk to me about anything", and that he wants to be my friend, but I know that there are boundaries there that aren’t there with a peer. Psychiatrists use the pretense of friendship to get you to talk. I once had a late session with my psychiatrist. The buses weren’t running and I knew my psychiatrist was driving my way, so I asked him for a lift. He just advised me to take the bus. (Mississauga Invitational Group)

Alcohol and drug programs are peer run and have a much higher success rate. The value of peer support has not been recognized by the mental health industry. If they want to talk about recovery, they’ll have to start funding consumer/survivor designed, operated and evaluated programs. (East Toronto Invitational Group)

Consumer/survivors— not just a product anymore. (email feedback)

It might not be allowed to pay c/s’s to sit on boards where membership is voluntary. But you could pay them to take part in doing research or to participate in leadership training courses. (West Toronto Invitational Group)

I see a lot of angry people, some activists you may know, whom nobody’s listening to. I’m prepared to be more subtle. I’ve worked at Out of the Cold, I was the only volunteer who came every week. One woman thought the food was poisoned and I offered to eat a bite of every meal that she had; another guy started throwing a chair; but I found that you have to go by your gut with people — being calm and liking him worked — he put it down. But I’m also scared all the time. (East Toronto Invitational Group)

Tell them [people who are isolated]: if your life isn’t what you want, if you are hurting, you can’t get any more hurt than you already are by coming out and "trying it out" with us. (Brampton and Caledon Invitational Group)

I go to 24 hour coffee shops so I’m not alone. (East Toronto Invitational Group)

On page two under ‘a recovery-oriented approach focuses on…'personal empowerment and autonomy’; I think that is patronizing. Personal autonomy is god-given- we shouldn’t need to ‘focus’ on it. This just encourages us to feel that we are given this by others. Also on page two: ‘best practices’ I would feel better if I knew exactly what is meant by that. What is ‘best practices’ for one person, may not be for another. (Brampton and Caledon Invitational Group)

I don’t want to be known as a consumer; I am first and foremost, a human being. I want to be equal to everybody else in this world. Eight years ago, ‘consumer/survivors’ became the greatest thing on earth. That was what you told people you were if you had a mental health issue. But it's still a label. I prefer to just come out and say "I have mental health issues that I deal with every day". I’m not a consumer/survivor. (Brampton and Caledon Invitational Group)

I’ve been listening to the task force committee and I think that we really need a c/s initiative that is Toronto wide and that would be sort of the voice of consumers at whatever governing bodies are put in place. Consumers right now are not together in any coherent group. We don’t have real training or background or even people to bounce ideas off. We go out to these meetings and we’re isolated among all the service providers. They’ve been talking a lot about consumer/survivor representation, but there’s the question of needing an organization to keep the issues and advocacy moving on behalf of consumers. Such an organization could do independent research and consumer evaluations of the service system and where the gaps really are, etc. I don’t think service providers should be evaluating themselves. (West Toronto Invitational Group)

We need a body with some clout, some resources. People have been abused out there and we don’t know where to cry. Everything comes down to money. There could be a consumer council attached to a governing body. But I think that there needs to be a focus on consumer survivor advocacy that’s separate. Maybe such a body could train and provide experienced advocates to sit on things like the regional authority and local care management delivery systems. (West Toronto Invitational Group)

The MOH should fund political action groups for c/s’s just like political action groups are funded for people with AIDS, people with cancer and for business organizations— I think its called the Board of Trade. The Schizophrenic Society, Mood Disorders, get money from them. These groups have access to money that we don’t. (East Toronto Invitational Group)

Why are we holding the c/s movement to standards that others don’t have to meet? Four out of five businesses fail. (East Toronto Invitational Group)

This body could also be responsible for compiling information about the system that could be given out to people right when they enter the system, before their situation deteriorates- information about jobs, housing, etc. — before they lose their housing. (West Toronto Invitational Group)

[Should people like yourselves be setting up a mental health program with counsellors, grieving processes, etc.?] 365 days a year I am doing just that, for no money. I’m on Mayor’s committees, for homelessness, I’m the vice president for Peel Mental Health Housing Coalition, etc. It's never ending.

[How would you determine whether you were doing a good job with any c/s initiative you might start? How would you measure that?] Accessibility. Number of people who attend. Versatility. If you are able to have many different programs available. A group for whatever our needs are. If I can make friends there. If I can come when I want — days or evenings — but I’m not forced to attend every day. Should decrease number of hospitalizations. Should be a place (like Eden Place) where you can come and go, shoot the shit, sit in front of the computer, watch tv, not be judged. A place to do art, music, writing. Its all hypothetical — we don’t have the money! (Brampton and Caledon Invitational Group)

The first thing needed is an experienced front-line worker. This could be a peer. They would help a person navigate the information about the system. They would need listening skills. They’d need to know the right questions to ask.

—How does a client receiving case management know what they are supposed to be getting? I had one who sat and talked to me, but there was nothing said about goals or agreements regarding what he would do. (North York Invitational Group)

Compassion and Caring

You’ll never have a caring community when the message comes right from the top that the mentally ill cause all the problems in society. (West Toronto Invitational Group)

I’m really concerned with pharmacological treatment. I’m also concerned about the way police treat people in the emergncy wards. They show no respect or understanding for any body with a mental illness. (East Toronto Invitational Group)

You get what you pay for. Caring and devotion are something else. (West Toronto Invitational Group)

We may be a subculture, but we are part of the city, we have to mingle with others.

[But some would say that we aren’t a subculture — we simply have a medical condition]

That’s why we are a subculture — because no one understands us but ourselves. (West Toronto Invitational Group)

We need a database for media people, journalists to go to get information about mental health issues. I see an ombudsperson as someone who would put the word out about mentally ill people not being evil. (West Toronto Invitational Group)

Professionals like doctors and nurses, who are working with people with mental illness all the time, should show more understanding and compassion. A kind word helps a lot when you are ill and in pain. Most of the time I find this doesn’t happen. It makes you want to die. A lot of the professionals seem to have their own issues. They go on about being overworked, underpaid, stressed out, etc. It shows. It’s the way that they speak to people. If they would at least explain, apologize if they’re too busy. (Mississauga Invitational Group)

I think that we’ll have to depend on people like that TD Bank guy who said that homelessness is impacting on business. The government of course, says that’s wrong. But wake up! When bankers are saying it — we should be going after that guy. (East Toronto Invitational Group)

Our society is very busy, ambitious and shallow in some ways, all about keeping up with the Jones’s. Lots of survivors like me haven’t done so much in the past few years; but that’s also given us time to smell the roses. We’re a lot more introspective. We spend more time asking ‘Why has this happened to me?’ I think about the same things that I did when I was well. I guess I still want to be Mr. Big and I still have expectations, but I wouldn’t trade the people here for anything. I think survivors are in general more compassionate, non-judgmental and supportive. (Mississauga Invitational Group)

I’ve been bounced back and forth from one professional to another. No one gets it. Sometime I don’t think they want to get it. That makes me feel isolated. There are survivors who sit on committees, who try to change things. But people are being burnt out. We’re getting older. There probably won’t even be a Survivor Pride day this year. People are tired. I need a community. The only community I’ve had is being defunded. (West Toronto Invitational Group)

Emergncy Rooms, ACT Teams and Community Treatment Orders

The last time I went to Credit Valley Hospital was for my back. As soon as they saw on the computer that I had been in previously for mental illness, they put me in the crisis room. I tried to explain that I was there for my back, but they just told me that I was crazy. I had to wait for the doctor to come and explain to him, so that I could get treatment for my back. Their excuse was that they were ‘busy’. (Mississauga Invitational Group)

Peer support on ACT teams is a joke. The document implies that the effectiveness of ACT has been proven. I question that…. If its such a good model, why don’t they all use the same guidelines? I can think of ways that we could use that $12,000,000 here in North York! (North York Invitational Group)

I’d like to see better staff. I’ve seen a lot of consumer/survivors evicted for behaviour that wasn’t acceptable to a particular staff member. That shouldn’t happen. Housing staff often have no understanding; they act more like security officers. (West Toronto Invitational Group)

We had a member coming to the club house. He seemed ok, but his psychiatrist knew he wasn’t taking his meds. The psychiatrist got the CTO coordinator involved. We saw no need for this — he seemed fine at the club house. (North York Invitational Group)

I have an article written by a psychiatrist who says that forced treatment can ‘free’ people from their mental illness. —That can be abused. (North York Invitational Group)

Pills can't talk for you (Brampton Reference Group)

I have concerns regarding crisis teams at the hospital. When I needed help I went to the crisis service at the hospital and I was immediately put into a ‘safe’ room. No one talked to me or asked me any questions. One worker popped her head in for a minute and said to wait for the doctor. She also told me that I’d probably have to leave because there were ‘no beds’. When the doctor came he managed to find a bed for me, but the wait felt like days. (Mississauga Invitational Group)

Yeah, especially in the emergncy room. They throw you in and leave you all alone when you’re in crisis. You’re treated like a second class citizen in the emerg if you have a mental illness. (Etobicoke Invitational Group)

Recovery has to be self-empowering. I’ve realized that if I present myself as out of control, I will be controlled —that’s just a rule of society. I see my job right now as being in control and trying to present myself as controlled all of the time. And I’ll know that I did it — not a drug, not a doctor. There’s a lot more than somebody showing up and giving you a magic pill and saying "look what I did for you". (East Toronto Invitational Group)

Peer support groups utilizing consumers’ knowledge. I’m aware of at least one ACT team with a c/s on it, but they don’t give him anything to do. They keep telling him that he doesn’t have a degree. Its like they’re just using him to fulfill the criterion that they have a consumer on the team. We could all use a peer to sit by us when we’re in crisis, who’s been there. (Etobicoke Invitational Group)

I see ACT teams mentioned in the document. Are they the accepted thing now? Perhaps we should make it more apparent how we feel about ACT teams and CTOs. I think that ACT teams and CTOs have had a big effect on us. This should be reflected in the report. The medical system is big on pushing drugs which in many cases don’t help. ACT teams don’t give people a choice with regard to drugs. (West Toronto Invitational Group)

Actually, most homeless people are not mentally ill. A small percentage are. The right wing wants to believe they are because then more ACT teams and CTOs can be justified and instituted to control homeless people. Rents have doubled in the past 5 years. What we have is a housing problem, not a mental illness problem. (East Toronto Invitational Group)

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