Consultations - Open Sessions

Open Session in Toronto
519 Community Centre
Toronto, ON
March 20, 2002
approx. 60 people present

Part A/
Intros and explanations

Where is the rest of the task force? They need to hear our voices, not just be given a report!

Lets get to the issues!

The Ministry decided who got to be on to the task force.

No one was elected! They hold secret meetings!

What’s Bill 68?

How many on the task force are survivors?

What is captured on tape and in reports doesn’t capture the frustrations and anger that we feel; the looks on our faces.

If the task force members couldn’t make it to these consultations with the survivor community, what good are future consultations?

How many c/s are on the task force?

There’s nothing we can do now, anyway. Lets get on with it.

We should walk out.

I know that Michael Wilson was part of the reason Bill 68 happened. I almost feel that this is a done deal. He’s a Tory!

This consultation, this meeting didn’t have any importance as far as these people who were to be here today. Why are they not here? Don’t blame OPSEU. OPSEU has nothing to do with that.

I just want to say that we aren’t just a "piece" of the mental health task force process. We should be the most important thing. We should be THE task force!

I’m tired of professionals taking over! [cheers]

Can’t we get on with it? Will you all stop your nit-picking!

Part B/ Raise hand if you have never used mental health services: 0

C/ Raise hand if you are not presently using mental health services: 8

D/ Raise hand if you believe that recovery from mental illness is not possible: 2

[participant] How many believe that mental illness is not a valid medical diagnosis to begin with?

E/ How many believe that mental illness is not a valid medical diagnosis? 18

Isn’t recovery just masking symptoms?

F/ How many believe that you cannot ever completely recover — not just mask symptoms - from mental illness? 11

Erick, can you describe what you mean by ‘recover’?

Erick: Recovery means not masking symptoms, compete recovery.

H/ How many believe that mental health services should not try to help you completely recover?

The concept of recovery is confusing.

Erick: Let me rephrase the questions one more time. Whatever you believe recovery to be; if you believe its just masking symptoms and helping people to get along, or that there is full recovery; who believes that the mental health system should try to get people to that place? Unanimous

I/ Who believes that the mental health system should not try to get them to that place? 0

Recovery means either ‘you don’t need any more help’ or ‘you don’t have an illness’. I think that there is middle place.

Psychiatric drugs take away the mental illness. Drugs can give a full recovery. [a lot of people started talking loudly at the same time]

How do you know if you’ve recovered if you’re still taking medication?

J/ What is the most important thing you need in order to recover?

A doctor who tells it like it is, explains things.

More talented, skilled front line people, more money.

More c/s’s running the system.

Jobs.

Meaningul jobs.

Support systems to help us when we’re alone. Systems that get you out of this mess.

Financial supports, housing, emotional socially isolated, low self-esteem.

More survivor-run places like Sound Times. No day treatment, baby-sitting. Somewhere that we can help ourselves., support from our own people.

C/s in higher, more senior positions.

Having a meaningful connection to the community, having someone who will give you a job, not just being put on the self — being able to have an active role in society.

More education about mental illness. Its not treated like other, physical illnesses, there is stigma.

More self-help groups and programs. More club house programs like Progress Place.

More money in our paychecks!

Pensions should go up over the years as the cost of living goes up.

We have to make sure that 2 years down the road, when there is a two-tier system, c/s who don’t have the money to pay a psychiatrist, can still get services. The government should know about this.

People should be able to choose alternative medicines that aren’ covered by OHIP.

Funding from government should be provided for this.

The general health care system is inadequate. People are being dismissed from hospital without proper after care. Violent crimes have been committed.

I’d like to see supplement therapy included in research.

I just want to say that people on ODSP, with regard to the $160 allowable earnings — they haven’t changed this in 10 years. I believe it could be raised. You work hard and want to put an effort into your job… but the percentage of earnings allowed should be raised. You should get to keep more than 25% of what you earn.

If ODSP hasn’t been raised in 10 years, that should be looked at. A metropass 10 years ago cost a lot less. I’m assuming that transportation is a basic need.

We need decent housing at a decent rent. Also, there should always be a human being available to answer questions at ODSP — not just machines.

Considering that some of the side effects of medications are worse than the illness, I think that the budget for research should be increased for alternative medications.

My meds gave me blood clots. I spent a week in St. Joe’s taking blood thinner. I’ve been taking blood thinners ever since.

There are people who shake so badly they can hardly walk or write. People on meds look like mental patients — but it’s the meds, not the illness.

Its important that there should be more relational interaction between people on ODSP and their workers or doctors. There should be more sharing, more caring — not just be given a paycheck.

It should be mandatory that government officials like task force members hear the voices of mental patients. If they have a paid position, they are receiving tax money, they should be required to listen to people who, through no fault of their own, have a mental health issue.

We need more access to workers and services. I spent years not being told about some services.

I lived in a Parkdale group home for 6 months and I’d like to know how they are evaluated. Something is going terribly wrong. Where I lived, you were like a slave to the landlord. There was nothing happening about the quality of the food — it was cereal or fish and chips every day. No one was taught to be independent, how to access the community. Some couldn’t speak English. In the end, they were just sitting there. Why are we made to feel that we are less than less?

The reason I think that people with mental illness are treated with such contempt, is that they are seen as not being taxpayers, as not contributing to society. Meanwhile, ODSP is barely sufficient, it just keeps you poor, keeps you feeling sick. Until we are treated with respect we will never be taxpayers. Paying taxes is a priviledge. Most people want to work; we want to get out of the cycle of poverty.

A lot of mental illness has biological and environmental aspects, but psychiatry just stresses the biological — just drugs. There is little in the way of talk therapy — you have to pay for that. Ethnic groups have no access to people they can speak to in their own language. ODSP won’t even let me have an upper plate — I can’t even eat anymore. Its very demeaning.

We need more public education — more proactive public relations. We need coverage for psychotherapy and counselling. Every hospital should have a patient advocate. All documentation should be reviewed — all pychobabble eliminated, put into understandable language. Services should be available 24/7

We need more safe houses for the homeless. I am homeless.

We need peer support networks.

Legal advocacy for c/s, for people on ODSP, for those on welfare to be treated like other people in terms of our rights.

Pychiatrists and psychologists should come to our homes sometimes. More workshops and alternative medicines like massage.

More staffing for mental therapy — one to one talking.

I think that the drug card is overemphasized. ODSP makes sure that your drugs are covered, but they don’t reward people enough for trying to work by letting them keep more of their earnings.

We need more training of police and media about mental health issues. There is too much sensationalism in the media.

K/ The task force recommends housing, social rec, alternative businesses, educational and vocational supports, c/s and family initiatives, etc. etc. What do you think?

Money for innovative projects. No segregated jobs.

The biggest problem is education. People may have had a choice 30 years ago, but not these days. Recovery means breaking free of the hospital altogether.

I’d like to see a 24 hour survivor run café. Also, art shops, 2^nd hand shops, etc.

L/ The task force has made a commitment to base mental health system reform on the idea that people can recover from mental illness. Can or should the mental health system try to help people to recover?

I think that the system should be such that it doesn’t cut people off in case of relapse. You should be allowed to reenter.

I don’t want a stamp saying "RECOVERED"

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.

I’ve been around for 20 years and I’ve just heard this word ‘recovery’ a couple of weeks ago. There’s no definition of it. It’s a new catch word. I’ve been fighting to get more community based services for years. As long as the government will not fund non — medical, non-psychatric or drug programs, the supports aren’t there. You can’t fight the system.

I just want to say the Redirection Through Education is a good program.

I just want to say that I have been off medication for 3 years. This was my decision. Recovery is a big word; it can be hard to describe at times. It pretty much leaves you confused about what the topic really is.

Maybe we should use the word ‘control’ instead of recovery.

I don’t get it. This information is going back to MOH but our cheques come from COM SOC. What is the relationship? Do they co-ordinate in conjunction, or do they create completely different policies that are opposed to one another?

I was at the Recovery Festival presented by the Queen Street Outreach Society. Courtney Harding presented a definition of recovery as follows: the universal signs of recovery are no current signs or symptoms of any mental illness, no medication, relating well to family and friends, integrated into the community, behaving as if one was never hospitatlized for psyciatric problems. I think she presented the paper not to run away from it, but to move toward it.

I would like to talk about c/s initiatives. I believe that they are a good idea. But I’ve been involved with some, and I saw a lot of disrespect between peers. It was really terrible. I saw people threatened, harrassed. Its not acceptable.

I’m disappointed about the way people always seem to think in terms of cafes and services. I was thinking more in terms of manufacturing or consulting or maybe even law…

M/ Problems with the recovery approach?

It sounds like ‘unless I get better, I fail’. The concept behind it — I would encourage you to use another terminology. For some people, sure, they have an episode and then they recover. But, that’s not necessarily the case. About 10 years ago, the Feds talked about ‘continuum of care’. I’m not crazy about that term either, but at least it acknowledges us as individuals who might have problems at various times in our lives.

I believe that the concept of recovery is a metaphor that fits in with the medical model. How many so-called normal people are ‘recovered’ from the rigors of life? Recovery is a term that some people — c/s’s -have a vested interest in using because they need to express a rationale for their desire to work — to overcome the idea that we are chronically ill, and will always need to be taken care of. But what happens to the idea of consumer/survivors? If c/s’s who work in c/s centres are deemed ‘recovered’, do they lose their jobs?

Recovery from illness has nothing to do with it. Its all about the right community supports.

I’ve been in therapy for years and my clinician never talks about recovery. I’ve only seen it in the media. Society feels good when when it hears that you’ve recovered. I don’t want to get back to where I was — I’ve learned too much. I prefer the word ‘normal’ or ‘typical’.

In this climate where the government is trying to cut back, a mandate of recovery may be used as an excuse to get as many people off ODSP as possible. We should be very careful.

I just want to say — please don’t ghettoize us! A lot of programs and types of employment do this to us. They think we can do nothing but kitchen work, clerical. Some of us would be better as managers.

It took me 20 years to recover from addiction. I was in a 12 step program.

Maybe we should use the term ‘control’ rather than ‘recover’.

I tried to go back to work three times in the last 10 years. No one explained what happened to me. You’re told that you’re stabilized, but when you go back and can’t work they don’t know why. I’ve met many survivors who don’t understand what the doctor has told them.

We should be careful not to define recovery too narrowly. We should be able to get back on the system, even if we have been out for more than 5 years.

N/ If we don’t approach mental health from this perspective, how should we? Are there some positives in this approach that you would not find in previous or current approaches?

I don’t think that putting a whole bunch of sick people together in a house with maybe one or two facilitators is a good idea. Take one or two sick peple and put them in with a helathy, together and loving family so they get what they need.

There should be more caseworkers; less science, more heart.

It strikes me that whats missing from this process is that there is no in-patient presence on the task force as far as I know. I’m sure that anyone on a 4 hour pass from Queen St. would give an interesting perspective on what its like to live day there after day. While we’re debating concepts like education or recovery or public relations, that person just wants to know how to get the fuck out, how to avoid getting more involuntary shock treatments, etc. The kind of discussion we’re having right now has not even reached the people who are most affected. This really needs to be addressed.

Those people on the wards won’t even talk to you — they’ll be too afraid of being penalized, put into the quiet room, etc.

Open Session in Brampton (Peel)
Friends and Advocates - Peel
Brampton, ON
March 14, 2002
25 people total

Part A/

Raise hand if you have not used mental health services: 2

B/ Raise hand if you believe that you can recover: 22

C/ Raise hand if you believe that mental health services should support recovery: all

D/ Raise hand if medical interventions work for you all of the time: 5

Part of the time: 15

E/ Raise hand if community supports help you all of the time: none

Part of the time: 21

F/ Raise hand if peers help you: 19

G/ What are your experiences of the mental health system?

There isn’t enough time to answer that. Bill 68 is nothing but trouble and should be repealed. It has set us back 60 years.

Hospitals were better 20 years ago. People have nothing to do — no craft groups, no exercise classes — nothing but drugs.

Psychiatrists don’t know anything about what is available in the way of counselling, housing, etc. They should be able to provide such information.

Psychiatrists don’t talk to you

How can a person begin to establish themselves in life when ODSP only allows assets of $5000?

We need to be able to open up to our psychiatrists

Psychiatrists don’t have enough time to spend with you, to get to your issues. Waiting lists are long. They are overloaded.

ODSP workers should be more concerned about a person’s lifestyle — their housing, income, etc.; there has been no increase in ODSP benefits in years.

I live with my husband on CPP, so my quality of life is relatively good, but I only get to see my psychiatrist every 4 months for 45 minutes.

I want to get better. I want to get to the point where I can go out and work. I was a functioning human being, a functioning mother. I want my doctor to figure out my medication — how can you do that in 45 minutes?

I live in a group home. I think that if you are 90% well, you should be allowed some freedom. Staff make me feel like a child.

ODSP benefits aren’t enough to pay for an apartment.

I’ve been on a waiting list for housing for 5 or 6 months now.

I am diabetic. ODSP won’t pay for all of the medical equipment that I need or for the special food I’m supposed to eat. The staff at my group home asked ODSP for additional money for this, but they said no.

ODSP has only been raised $11 in the past 10 years.

Psychiatrists in Peel are nothing but pill pushers. They don’t try to discover the root of your problem. Some run through 6 or 7 people in an hour. Psychiatrists could volunteer, work in the community.

Transportation is a big issue. Its expensive and unavailable.

I just got out of hospital. They gave me some pills.

What helps me the most is my husband.

We need more local programs.

We need a little of everything — not just meds.

Psychiatrists should go back to school to learn how to talk to people. All they do is write prescriptions.

My doctor took me off a pill.

I was on Haldol for 20 years. Now I’m on a more expensive drug. Should’ve been taken off much quicker. I still have delusions. Lots of side effects.

Pychiatrists only tell you what’s wrong with you. That isn’t good for your self-esteem

They look at their watches a lot.

My doctor keeps changing my pills. I have to go to the doctor and the hospital all of the time. The pills have lots of side effects. Sometimes they do the opposite of what they’re supposed to. My doctor is still working on it.

Medication isn’t very safe.

I’ve been diagnosed with a few mental illnesses. Medication works for me.

How can I improve my education when I don’t have funds? There is no support for education. I just get more bills that I can’t pay. How am I supposed to get ahead?

We need more community services. We need education for the public so there is acceptance and understanding. Consumers need it too. They all need to know that we aren’t inept, that we can fulfill responsibilities and contribute to the community.

We need more crisis workers — not just hospital beds.

We need more Friends and Advocates centres in Mississauga. This one group serves the whole region of Peel. We need more money.

Friends and Advocates provides social support, sharing. There is a drop in, but…

We need expansion of all services.

Doctors don’t listen. They jump to conclusions, go by the book, don’t listen to your story. You can’t shop for a doctor anymore. I had problems with my first doctor. Its hard to shop for a doctor when you’re ill.

Has anyone tried to follow their doctor’s precription? Its hard. The doctor wants to find out whether the drug works, and you get side effects. You have to come back every 3 or 4 months. You can’t drive, can’t drink, can’t eat certain foods, and I’m not even going to say anything about sex,,,

We need more funds for organizations like Friends and Advocates. When I was in the shelter system, we got free tickets to football and basketball games. There isn’t enough money for social activities.

Friends and Advocates seems to be getting less and less money from government.

We have a crisis phone set up. But sometimes when you phone, they tell you that its not a crisis.

H/ Recovery?

You can stabilize, not recover.

A person who has been mentally, physically and sexually abused will never recover from the pain.

With the right supports, your quality of life can improve, but if the support stops, regression occurs. Isn’t that stabilization, not recovery?

They want people to ‘recover’ in order to get them off the system.

Bill 68 means that if a doctor or lawyer on a whim wants to, they can form you. This situation makes people paranoid.

Bill 68 is contrary to recovery.

Bill 68 doesn’t meet the community’s needs.

Recovery isn’t going to happen when drugs are pushed down your throat.

Community supports don’t get equal funding. But it isn’t just money. If the public doesn’t understand that you can be a positive asset, then you’ll never be able to fulfill your dreams and desires.

The mental health system didn’t do anything for us when there was physical and sexual abuse in my home. That will go on forever.

Community balderdash! The first line of care is the hospital and they’re not being adequately funded. We need to go back 20 years when there were services in the hospital. I’m an artist and believe it or not, I developed my interest in art in the hospital.

With Bill 68, you’re supposed to be able to call a lawyer. It doesn’t happen. Why?

I need support from a spiritual community.

If ‘recovery’ means being pushed into recovery, pushed into working, I don’t want it.

Some people don’t want to cooperate by taking their meds, so how can they recover?

The Hospital Act says that you can’t see a psychiatrist until you’ve seen a GP. That should change.

There is no 24 hour mobile crisis service

We need doctors to come to you rather than us always having to get to them.

Anything that you think is a crisis, is a crisis — but crisis workers don’t see that.

Case management is a joke.

You can have a case manager for a long time, get to know them, then get switched to a different person when you move into a different program.

I/ Cross-level services and supports?

Sounds like the same old stuff that they’ve said before.

When is it going to happen?

Consumers and peers need to take leadership roles — otherwise, we are just guinea pigs being used by the system.

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