Presentation to Ontario Legislature Committee on
Mental Health and Addictions StrategyWednesday, September 30, 2009
The Chair (Mr. Kevin Daniel Flynn): Our next presenter today is at 4:30, and that's Jordan Stone. Jordan, would you like to come forward? Make yourself comfortable. Pick any one of the chairs you like. Mr. Jordan Stone: I just wanted to thank Patricia Teskey-she's with the Schizophrenia Digest Magazine and the Schizophrenia Society of Ontario-Jyll Simmons, who's with CAMH family council; Annick Aubert, who's with the family resource centre; and Susan Allen, who's the director of the family council. They really support what we're doing.
The Chair (Mr. Kevin Daniel Flynn): Okay. Thank you. It's great to have all your friends here.
Let me tell you what the rules are before we start. You get 15 minutes like everybody else. You can use that any way you see fit. If there's any time left over at the end, we'll split it. If you could introduce your colleague as well just so that everybody at Hansard understands.
Mr. Jordan Stone: This is Bowen McConnie. He's another member of the group.
The Chair (Mr. Kevin Daniel Flynn): Okay. It's all yours.
Mr. Jordan Stone: We just want to show a film first. It's four minutes.
The Chair (Mr. Kevin Daniel Flynn): If any members of the public would like to see the film, you could probably see it from over in this corner, here.
Mr. Jordan Stone: The reason why we showed that is because it's kind of like a glimpse into the schizophrenia experience, and also to show that our members are very talented. We have three Ph.D.s in the group, artists, musicians and amazing people.
What we're doing is different. Nobody has done this in Canada; I can't speak for the United States, but I haven't found anybody doing what we're doing. I started the first and only diagnostic-specific schizophrenia peer support group and network in the country.
What we have done in five years is save the government tens of thousands of dollars in hospital admissions. Not one of our members has died-and I know that sounds grim, but you know, it's a 1-in-10 suicide rate for schizophrenia, higher than any other mental or physical condition.
We have basically-we just lost our clubhouse. We received maybe four or five donations in five years. I think there's a handout showing about 30 or 35 different mental health organizations we've approached, including the provincial government, for help. We've not received a dime from any of them, with the exception of CAMH, who paid for three months of our rent before we lost our place.
Maybe you can go to our website sometime. On our endorsements page we have some of the top researchers in schizophrenia, doctors and social workers, from the pro- to anti-psychiatry movements, supporting what we're doing.
I guess why I'm here is because although everybody supports what we're doing, they can't help us because we don't fit into anybody's mandate. Basically, what I've discovered is that mental health is a business first, and whoever has the best fundraiser and marketing people and whatever wins.
Nobody has done what we're doing and I know why now: because it's very difficult. We deal with stuff 24 hours a day, seven days a week-crises and the poverty. When you're living at one third of the poverty level and you have nobody to talk to and you've lost everything, sometimes even your family, it's pretty sad. You're basically dealing with that wreckage. Most people with schizophrenia will not talk to other people who don't have it in the same way they will talk to people who do have it because of the shame and stuff like that.
The Chair (Mr. Kevin Daniel Flynn): If you need some water, we've got a glass of water down there.
Mr. Jordan Stone: No, I'm all right for water. I don't need water.
We want to somehow have the government change, shift-how I also figured how it works is, whoever has the money is in control of your care and your life. We've had 30, 40 years of a model that is not working, and we've actually developed our own recovery model which does work. CAMH has recently adopted a model which is a non-diagnostic-specific model coming from the States, which is very well marketed and not very practical.
Everybody is talking about peer support and recovery, but nobody is defining it, and we have. It's not life skills like the program they're doing at CAMH, and it's not just befriending somebody. It's understanding and learning how to manoeuvre a thought disorder or a paranoia or a hallucination or whatever and be there for somebody when they need you.
We've also developed this thing called psychotic symptomatology, which the PANSS Institute in New York-they're taking what we're doing very seriously. The PANSS scale is the most used rating scale for people with schizophrenia in the world-almost every psychiatrist uses it-and they actually are developing, based on what we've done with our new scale, a new scale for clients.
What we're doing is a little bit more scientific. We want to have best practice statistics, but we have nothing We've been doing what we've been doing for zero; nobody has been paid anything. All the other mental health organizations out there have staff who are getting paid, okay? We have nothing. Almost everybody's on disability and the few people who aren't are examples to everybody that there is hope.
I guess that's why maybe something can happen so that some time in the future, it's not so difficult. We just lost our clubhouse. We had a donation from a family member that ran out. CAMH helped us with three months of rent and then we got kicked out. The place fit six people; we have 25 members and 85 on the waiting list. The place was a cockroach-infested dive in Kensington Market. The toilets stank. It was cheap, though, and it was all we could afford. This just may be an eye-opener for you people to see that we can do something ourselves. We know what we need and we want to somehow make it work.
I'll just pass this off to Bowen, who has been a member for many years as well.
The Chair (Mr. Kevin Daniel Flynn): We've got about three minutes left, just so you know.
Mr. Bowen McConnie: Jordan Stone has been my friend now for about five years, since the beginning of the group. He's been critical for my ongoing recovery, in sharing knowledge about medication and supporting each other when you decide to change medications or you're going through a difficult period, which I went through. I stayed with Jordan for about a week. I went through a difficult process of changing medications, but now I'm on about one tenth the dose I was on before; I used to be just a zombie.
Before the group, I had no friends, and now my life is a lot better; my quality of life has improved greatly. Now I have a number of friends who I can talk to and can understand, because we have similarities. Everyone's different in their symptoms, but we think the diagnostic-specific model is very important, especially for schizophrenia, because it's so different than just depression or whatever it might be.
We hope that we could receive support and we would like to have more dignity in having a clubhouse where we could work. Members could get some pay for volunteering-or not have to volunteer, but putting their time in and running the clubhouse. We have high aspirations and we want this to be a model for other places too, other cities across Canada and the world, eventually, that a schizophrenic isn't just a useless drain on society, but has many important things they can contribute and talents. Just having a good clubhouse that can accommodate the number of people who are wanting to be part of this group would definitely save a lot of money for the government in hospital admissions and could ultimately save lives.
I had a suicide attempt and I was pretty overwhelmed with symptoms. I had a lot of people visiting me in the hospital and talking to me and so I didn't feel alone. Eventually, I came out of it and now things are much better. Most of the people in the hospital didn't have that at all and they were just alone, or relatively so. I hope you believe in the diagnostic-specific and could help us.
The Chair (Mr. Kevin Daniel Flynn): Thank you very much, Bowen. Thank you too, Jordan, for the presentation as well and thank you for showing your film. I noticed that you produced and wrote it. Very good. Thank you very much for coming, both of you, today.
Mr. Jordan Stone: Actually, it was produced by Workman Arts.
The Chair (Mr. Kevin Daniel Flynn): Okay. So you wrote and directed it?
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