Hospitals are a very expensive place to call home, and since 1954 there has been a de institutionalization of most patients with mental illness like schizophrenia. Unfortunately there hasn't always been a lot of attention given to a therapeutic environment for people to continue recovering in the community. Far from it actually, and mostly because housing generally is very expensive, and the disability caused by schizophrenia prevents people from earning enough money to afford housing in the community. In Ontario we have one government ministry for health, a different government ministry that is responsible for disability benefits, and yet a third government ministry that oversees (affordable) housing. Not surprisingly they don't coordinate their services very much. Schizophrenia is an inherently expensive burden for society to bear, because it strikes people just as they are assuming financial independence, and they are at least partially disabled for their whole life, and the one percent of the population which develops schizophrenia is a lot of people.
Housing and financial support are critical to quality of life in the community, critical to a therapeutic environment for people to recover as much as possible in the community. Housing and financial support could be as important as treatment by health professionals, and like that service, very expensive in nature. I have found being desperately poor to be one of the most demoralizing experiences in my life. There is no room for error when you are poor. Almost everyone with schizophrenia is living below the poverty line, often way below the poverty line. It is the nature of the illness that people will have few human relationships, and they are often very isolated socially in the community. And then there are things like the stigma of being poor, which is a more powerful prejudice than the stigma of being schizophrenic, which is significant in itself. All in all we have a recipe for disaster, and that happens on a regular basis across the North American continent. Fuller Torrey wrote a number of books on de institutionalization in the US, none of it very encouraging. Canada was no different, and there is a book entitled "Upstairs in the Crazy House" by Pat Capponi, which documents the sordid life of an Ontario boarding home typical of the immediate de institutionalization in the 1960's. It is definitely not something any government can be proud of, but things have been improving a little, because without a therapeutic environment to live in, essentially decent housing, meaningful activity, and a social network of support, people relapse and cost far more in acute care beds.
In the last half of the 1990's various Ontario governments reduced the number of psychiatric beds available in the province. The cost of these beds is $300-$600 a day. The Ministry of Health uses up half the total annual provincial budget all by itself. Reducing access to acute care beds led to an increase in the homeless with untreated psychotic disorders, and such an increase in the number of people coming before the courts that it jammed the whole system of psychiatric determination of "fit to stand trial" and "not criminally responsible" the two most common assessments made by the courts of people in psychosis who commit crimes. Nobody was tracking the number of homeless mentally ill, but the courts were keeping people in prison illegally awaiting a psychiatric assessment because the system was jammed by the sheer numbers of people in psychosis committing often minor crimes who needed to be assessed. Funding was found for ACT teams across the province, for the serious mentally ill, a lot of funding because each ACT team carry's a caseload of about 60-80 clients and costs a million dollars a year. The ACT teams are cheaper than incarceration of people with serious mental illness in the jails. They were invented in the US, proven to be cost effective, and now we have a lot of them in Ontario as well. The amount being spent on each client is about $20,000 a year, and I've often wondered if they just gave that money to the client, instead of to the mental health professionals who make up the ACT team, what would happen? We'll never know.
There is a lot to consider when looking at housing and financial support. Big cities are inherently more impersonal and more expensive. It is easier to become lost in a big city, literally. You're just another face in an immense crowd. Rents are a lot more expensive in a the big city. I think moving to Guelph was probably the smartest move I ever made. Not only has housing been much more affordable here, over the last fourteen years I've become quite well known here. I'm always running into people I know, everywhere I go. There is a tremendous therapeutic value to that kind of random social interaction. A lot of people with schizophrenia and other serious mental illness know me, and they are usually on foot, so I meet them every time I go downtown. A lot of family members who cut across the social spectrum know me. Many of the mental health professionals in town know me, when I run into them shopping. If I didn't occassionally run into my psychiatrist around town, I would consider moving to a smaller community. Guelph is about 100,000 people and so far it's been the ideal size for a therapeutic community. It's too close to Toronto to keep rents down, but it has a good transit system, lots of hiking trails (which is about the only free healthy recreational activity), and a big university, which makes a community more tolerant of difference.
I was living in a subsidized housing complex with three distinct populations, the poor, the physically disabled, and the psychiatrically disabled. Each group was different, especially between the disabled and the poor. When you're poor because of psychiatric disability, you usually end up spending a lot of time with other poor people, and you are essentially very vulnerable to any predation by those people. I have a distrust of poor people that borders on prejudice. I'm sure there are many with noble characters and I've met some, but there are many others not so admirable.
Before I moved to Guelph I was living in a rundown house in downtown Toronto. People were mainlining heroin in the living room. One fellow had spent time in jail for an attempted bank robbery. Two were starving artists. One of those was being treated for schizophrenia. The house was infested with cockroaches. Nobody cooked anything in the kitchen. I hope I forget I ever lived there.
When I was discharged from hospital in 1990 I had five dollars in my pocket and I didn't know anyone. I was referred to an emergency housing shelter and I looked for a place to live. It is not uncommon for psychiatric hospitals to discharge people to the emergency shelters. Sometimes a patient doesn't won't stay in hospital until housing can be set up. Often the pressure on the acute care beds forces out those who are less ill so that the more ill will have a bed. In Canada governments are reluctant to provide much funding to emergency shelters. They are often understaffed, and really a public shame in such a prosperous country. The one in Guelph is probably the nicest one I have ever stayed in. I visited Seaton House in Toronto a few years ago and their clients get minimal medical attention, but their basic needs for food, clothing and identification documents (which most of them have lost), are usually met. The worker estimated that 40% were really ill with an untreated mental illness. The single men's hostel I stayed at in Calgary in 1980 didn't feed you and I didn't eat that week. Even the Don Jail has central heating, three meals a day, and a semi private bedroom. Jail was preferable to most of the single men's hostels and emergency shelters I have stayed at. We care more about our criminals than we do our homeless. It's pretty frightening to learn how unwanted you are when you're homeless. Some people maintain that the freedom to go penniless and homeless is precious. They should try it first. There is very little freedom in being cold, hungry, homeless and broke. I was lucky if I could keep warm and dry, let alone eat once in awhile. In Guelph now we have better temporary housing for discharged patients while they look for more permanent housing.
I lived on Family Benefits for about eight years, living in basement rooms and having to move every 8 months or so. I waited seven years before I was finally offered a subsidized apartment and I know people who have been waiting longer and still don't have one. It wasthe best housing I have ever had at that point and I didn't think I would ever move. But it was a seven year wait to get it and seven years is a long time to be unhappy with where you are living. Once you are offered subsidized housing people then have to struggle with furnishing it from their disability benefits. Families can help out a lot in this. I lived in a group home for six months because I was so lonely and depressed living by myself but there was a hierarchy of power based on seniority in the home that was so unpleasant I moved out on my own again. Affordable non subsidized housing is a room with a shared kitchen and bathroom. It can be a very isolating experience to have no job, no school, few friends, no romantic relationship, no money, and live in a basement room. It is also fairly difficult and almost unnatural to live alone. You stare at the four walls, you eat dinner by yourself every night and wonder if life can get any worse. For a variety of reasons few people share a place. In fact many people with schizophrenia live with their parents for years because housing is a real problem. Housing is expensive any way you look at it.
After the group home I lived in a very small bachelor apartment that was anything but square. If you put a pencil on a coffee table it would roll off the table. I was courting Rosemary and we moved into a two bedroom apartment, that was huge and downright luxurious. We could afford that as co residents because we could combine our housing allowance of $415 each to pay the $785 rent. With the spouse in the house regulation of 1995 the government made it virtually impossible for for Rosemary and I to continue living where we were. I moved into a subsidized building, which was affordable. When I first looked at it, I was concerned that I was moving into a shoe box because I was getting very used to the space of the two bedroom apartment, but I enjoyed living there. It was incredibly soundproof, and each floor had it's own key, so security was first rate. There were three locked doors to actually reach me in my apartment. The 9 story building was on the edge of downtown and it was a brand new building. Most of the subsidized housing complexes in Guelph are built on the outskirts of town, which tends to isolate everyone who doesn't have a car.
I was very lucky to get that subsidized apartment. I had been on the waiting list for seven years. Now things have changed and women in the shelters are the only priority, and I would probably never be offered another subsidized apartment in my life time. I could be on the waiting list for 25 years and any woman in a woman's shelter who had stayed one night in the shelter would be offered the apartment before me, and the turnover of subsidized apartments is basically: "as people pass away", which is to say turnover is really low to begin with. Half the people I know disabled by mental illness have affordable housing, and what is going to happen now that subsidized housing is no longer available for us is anyone's guess, but it is not going to be pretty. I don't doubt that battered and homeless women have their problems. I do dispute that they are always a higher priority than then disabled mentally ill. I think both populations should have an equal priority.
Rosemary moved in with her mother, and then her mother bought a one bedroom condominium for Rosemary and she is till there. That was obviously the perfect solution if you can convince your parents to buy a house or condominium for you. I was able to convince my father when he sold his house in California and had a lot of extra cash. I live now in a two bedroom condo beside the park along the river on a fairly quiet street. I chose it so I could jog along the trails beside the river in the summer. It took a lot of money to buy the place and quite a bit of money to furnish it.
There are two things that have really made a difference in my life with schizophrenia, not including the medications I take which are the biggest. One is my employment, which really is extremely therapeutic for me, and two is my condo, which is my home. If I didn't have my job, I could still be happy living in my condo, because it is such a nice place.
Ideally financial support programs will facilitate a therapeutic environment in the community for people too disabled to work full time. People need a therapeutic environment to continue recovering from their illness, and to enjoy life in the community again. People disabled by schizophrenia are at risk of becoming very isolated and marginalized in the community. They are also very vulnerable to predation by seedier elements of society.
Being able to earn money is therapeutic. Living with a partner in a romantic relationship is therapeutic. Having a home as opposed to just housing is therapeutic. Being able to make a contribution to your community is therapeutic. Interacting with a variety of people in a variety of contexts is therapeutic. Without a therapeutic environment people are more likely to relapse, become homeless, and/or end up in jail.
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