People who live in adult homes are a diverse group, with varied life histories. Here are the stories of some of our members and some descriptions of what living in an assisted living facility is like.
Woody Wilson: President of CIAD
What does it mean to be a resident of an adult home? It means a loss of identity. A loss of purpose, whatever that purpose might have been. On the first day of your admittance, you are told that there are certain things that will be done for you. You will have a housekeeper to clean your room, to provide you with clean linens, wash cloth and towels once a week. You will receive three meals a day and a snack in the evening. You will have laundry service. You will be provided with recreation and you will receive a personal needs allowance. And you may come and go as you please. There are some state regulations and house rules that you must obey.
It is not long before you feel that the things that are done for you are being done to you. You receive clean linen, wash cloth and towel when and if available. Your room is cleaned on a hit or miss basis. The three meals and snack you receive cost a dollar and eighty cents. You may think you can imagine what these meals are like, but you are wrong. They are much worse. I never knew there were so many beets, carrots, chick-peas, and broccoli stalks in the world. When you send your clothes to the laundry it’s like gambling. You never know what you will get back. Recreation is bingo, Trivial Pursuit and other interesting things. These things are so interesting that they would not hold the attention of a ten year old and are not well attended to say the least.
The personal needs allowance is the most important thing to you. You learn very soon that you must make yourself a budget and stick to it no matter what, because your personal needs allowance never covers your monthly needs. You must make a disposable razor last at least a week. You don’t get a haircut when you need one but when you can afford one by doing without other things that month.
Clothing must be replaced – for this you must save for months. If you need new shoes, it is better to get the old ones half-soled since it will cost about thirty-five dollars out of your monthly allowance. A winter coat or jacket is something else again. You had better have saved up for a new one when the old one falls apart, if you don’t want to come and go as you please in rags.
In the hot summer months you may think of having air conditioning in your room. But that would cost you and your roommate as much as $300.You and your roommate’s combined personal needs allowance is $284. Any mail that comes for the residents can not be important enough to see that the resident gets it the same day it arrives. If you get mail on Friday, and the administrator hasn’t had a chance to check it before he leaves, you will not get your mail until Monday or Tuesday.Medical care consists of residents being lined up to see the doctor, and then only for three to four minutes.
And it seems no one told the staff that they are there to serve the residents. They think they are there to keep the residents in line to make sure the rules are obeyed. They look on the residents with varying degrees of contempt. There is no thought taken of the residents as individuals. They are dealt with as a group. So the residents must respond as a group through the resident council. Resident councils try to work with the administration and staff to improve the conditions in the home when possible. Anyone who speaks up for themselves too often is threatened with a 30 day notice or forced re-hospitalization. This is done loudly and clearly so that the other residents will know better than to complain or argue about anything that goes on in the home. Given these circumstances residents have to turn to outside agencies such as the regulatory agencies, CIAD and MFY Legal Services. Sometimes they are all needed. In many homes the administration is only interested in the bottom line and passing the state inspection, not on meeting the individual needs of residents or improving the quality of their life. And we have all recently read about homes where conditions are deplorable and downright dangerous.
Residents have an important role to play in any revitalized inspection and enforcement system. They should be involved in training inspectors, and residents and resident councils should be able to meet with inspectors during exit interviews at the end of state inspections to find out the results of the inspection. Residents should have their own standing to move for receivership. And we must go much further. Mental health services must focus on rehabilitation and recovery, not maintenance and control. There should be the expectation that for those who can, people should transition to other more independent settings.
I reside in an adult home in Suffolk County. I am a 55 year old man who suffers from mental illness.My road to this point is different than most. I grew up on Long Island as normally as can be expected. As I look back now I can remember that I did suffer from bouts of depression. My life continued though.
I worked different jobs that usually lasted about 5 years each. I met a girl where I worked and after a few years we were married and over the next 14 years had 3 sons. I went to college for 10 years during this time and earned two college degrees. My periods of depression came more often and were deeper and deeper.
Also, at this time, my physical health began to deteriorate. I was in 3 terrible car accidents and ended up having two spinal operations. In 1986, I suffered a minor heart attack and in 1990 suffered a second major heart attack that should have taken my life. In 1992, I had surgery on my colon for what up ended up, thank God, being a benign tumor. My physical health continued to deteriorate. Forty-five percent of my heart muscle is dead and the other 55% required open heart surgery in December 2004. In April 2001, I was diagnosed with diabetes. One month later, I was hospitalized, having suffered a severe case of Lithium overdose due to the fact that I had not had my blood levels checked for 18 months. It was at this time that I was diagnosed with Bipolar Disorder. I believe my physical health is directly linked to my mental condition. Today, I m on 17 different medications. I had to have open heart surgery in 2004 and an implant put in my chest in 2005. I survived all of this including an addiction to pain medication.
I worked very hard for almost 35 years and put a lot of my money into my Social Security Disability. My insurance coverage is with a private HMO as well as Medicare.
Now I am asking for help. Help in erasing the stigma attacking all people with mental illness as well as other disabilities. We need more help in defending our rights under the law. We all need case managers to help us set goals and achieve them. We need more advocates to represent us and push for us. We need advocate peer groups and self-help programs. But in reality, we all know that this cannot happen overnight and without funding.But most of all, all we ask is to be treated as human beings. And being treated in this manner is a God given right.
I have always worked. I have a degree in English education. I taught English to ninth graders for a short time. Then I moved to an advertising agency, where I stayed for twenty plus years. I then lost that job and was hospitalized, and moved on to temporary work as a receptionist. From there I went to a full-time job at an accounting firm where I did administrative work. I always had my own apartment and for the most part, I lived on the Upper West Side in New York City. When I was last hospitalized, in 2002, I became quite scared. I didn’t know if I would be able to recover as quickly as I had from past hospitalizations. I was at loose ends at the time. Then I was able to get a therapist and make a life for myself. I’ve taken on responsibilities that have helped me in my recovery.
In the past three years, I have not only recovered, I have assumed the role of Secretary of the Residents council. I have sisters who live all over the place, so I travel and go down to the City. I have a part-time volunteer position and I recently completed a twelve week peer advocacy training program.
You have to be really careful not to lose hope and lose your independence. You have to be assertive and take advantage of every opportunity to be independent. When you do, you build confidence in yourself.
From my perspective, adult homes serve a particular need. They are a place where you can recover. We then need to make sure the adult homes are up to some kind of standard. And when you are able and ready to go to more independence, there has to be more available housing. It’s difficult to make the leap to total independence. So you need something in between. We don’t want adult homes to be dumping grounds for anyone and everyone. We are all different--that’s why you need different types of housing. People must have the opportunity to move on.
I spent two years in the U.S. Army and had an honorable discharge. I worked as a purchase clerk, mail clerk, and a processing clerk. I worked for the VA Medical Center in Manhattan for about nine years. I bought a house in Jamaica, Queens with my girlfriend.
Then my girlfriend and I started to have problems. I went to the hospital to get checked out, where I stayed for 2 ½ months. While I was in the hospital they served me with papers saying I couldn’t go home again. So I became homeless in the hospital and I wound up going to an adult home in Queens. I met Carla Rabinowitz [an advocate] at a council meeting. I told her I wanted to get out of the adult home, to go back to work and have a normal life.
The day program I was in was supposed to help me fill out my paperwork for housing. First it took them 6 months to do it. Then it turned out they had only filled out half of it. Then my paperwork expired. Then we had to redo it because they put the wrong address down.
I finally got out of there. I went to a treatment program apartment, and from there I moved to supported housing. I’m getting off my medication this month. The only meds I’ll be taking will be diabetes meds.
For the future, I want the same respect and honor, I want to live like everybody else lives.
Mental illness is just like diabetes. It’s just an illness.
Me and my girlfriend been going together for 2 ½ years and we want to live together. The housing program I’m in doesn’t allow us to live together. That’s what I want now.
In my own apartment now, I like to cook. I like to take a bath and soak. I couldn’t do that in an adult home. You can’t tie up the bathroom when there are three other people waiting. Plus now I get to have my girlfriend spend the weekend with me.
I’m thirty-six years old. I was thirty-two when I moved in to an adult home in Brooklyn. I’ve been working since I was sixteen. First I was a camp counselor. At 17, I sold lingerie at Century 21, from 18 to 22 I worked at Waldbaum’s Deli. Then I got a job in custodial at the Board of Ed. I always managed to move higher up on the pay scale. I dropped out of school in the 9 th grade. When I got my GED, I scored high enough to enter a good college, but I had to work.
I was working my custodial job for 6-7 years but I couldn’t do it anymore with my illness. My family went into a homeless shelter, but I rented an apartment and paid for my family with my job. Then I was hospitalized—I was very sick. I still hear voices, but I can handle them now. I thought my life was over. Someone told me to join CIAD and get more active in your illness. Being part of the CIAD Policy Committee gives me control over parts of my life.
A volunteer for CIAD named Jennifer came and asked if anyone would like to learn to do videotapes. Now I am a cameraperson on the CIAD media team. I joined another video club for mental illness and made a video called Phat City—it’s about weight gain and anti-psychotics. The medications slow you down and make you gain weight. I used to be thin five years ago.
My boyfriend and I have been together for four years. Now my life feels like I havesome control and I have a future.
Until 2 ½ years ago, I was part of regular society. I worked for eleven years as a medical librarian in a hospital in Tel Aviv. I then worked for eleven years as a librarian and archivist at Tel Aviv University, which is one of the best universities in Israel. My late wife was Israeli.
I came back to the States after my wife died. I wound up living in my uncle’s office. I couldn’t get a job because of age discrimination and I had a nervous breakdown. After being hospitalized, I wound up in an adult home in Brooklyn.
I have two Master’s degrees—one in Library Science from Queens College and one in History from Tel Aviv University. As an educated person, I felt an obligation to help others in my condition, so I became involved in CIAD.
I read a lot of history and classic and contemporary literature. I listen a lot to classical music. I follow baseball closely—I like the Mets.
At the moment I am contented where I am, but who knows what I will want in the future.
My name is Michael Drutz and I am a resident of an adult home in Brooklyn. I’d rather not live there but right now I have no where else to go. Here is my story. I lived in my own apartment in Brooklyn for twenty years. Five years ago, my mother moved in with me after having a stroke and I cared for her. I also worked as a security guard at Kennedy Airport. I was working for Air Canada and they went bankrupt and had to let people go. I lost my job in July 2003 and my mother died the same month. I tried to find another job without success and was not able to pay the rent.
I was hospitalized for depression in October 2003 and continued treatment at a local mental health clinic after I got out of the hospital. When I was finally evicted from my apartment in July 2004, my doctor put me in South Beach Psychiatric Center, where I stayed until October. From there they put me into a group home in Staten Island. The hospital social worker didn’t offer me any choices, and didn’t even know anything about the place, had just been given a flyer about a place. They told me—this is where you’re going, and that was it. This unlicensed group home turned out to be very religious. They took me to a shelter because I wouldn’t go through with their religious program. I ended up riding the trains for three months while continuing to go to Mapleton clinic. The social worker at the clinic didn’t help me find a place to live. Another client there was a resident of an adult home and he told the administrator about me. That’s the way I found out about the home I live in.
I want the life I had before. You’re always under someone’s thumb in an adult home. You have to eat when they want you to eat. They treat you like you’re inferior and they don’t like you to have independent thoughts. There’s too much emphasis on profit and not anything for the residents. I haven’t had medication for about a week now because I don’t have Medicaid and they haven’t helped me with my benefits. The casemanager at my adult home told me she doesn’t work for the residents—she works for the home. I want a casemanager who is independent and who will advocate for me and help me get the things I need.
In addition to case management, we need housing options. In the hospital and in adult homes, they don’t see the differences between people. They put you all in one lump. I’m high functioning and I’ve lived on my own. If I had had the chance to get supportive housing when I was in the hospital I would have wanted it. Now I want to be completely independent. The services I’ve had—in my clinic, the hospital, the group home and the adult home—never helped me get a decent place to live.
Gerard Heller has lived at an adult home in Coney Island for almost nineteen years. He has been in the mental health system since he was eight years old. He lived in various facilities in the Bronx and Far Rockaway as a child and young adult, thenlived with his mother for three years in his early twenties. She died in a fire that destroyed his building. He was taken to Kings County hospital for treatment of his injuries, and placed from there at Surf Manor.
Gerard is Vice President of the Resident Council at his adult home and President of the Community Council at his day program. He is on CIAD’s Board of Directors and has been an active member of its policy committee since its inception. He is eager to have the chance to live more independently.
Gary Stuart Levin
Adult homes are basically a facility in which the residents range from the frail elderly to people with psychiatric disabilities. The homes are often run and owned by people who do not have a background in psychiatric treatment. In the end, it operates like any business, with the residents as their commodities.
The way I see it right now, the psychiatric services that are made available in adult homes are too conflicted. There is a conflict of interest when the provider is more concerned about the impact they will have on the operators of the home versus the benefits that they could make available to the consumer. For one thing, the psychiatric treatment providers rent space in the home to conduct business. As such, it creates a problem, being that they do not want to lose their position in the home. The home could decide at any time to not use this provider. Also, because of this situation they are quite often forced to see as many people in as short a time as possible. I myself have never seen the psychiatrist one-on-one in an office, and I have been living at an adult home for four years. The only time I do see him is whenever he shows up in the building, walking from his car to the home. Then I only speak with him for one or two minutes, three at the most. And the conversation usually goes, “How are you, are you having any problems? No? Great see you later!” How is this supposed to be considered a psychiatric session? How is he supposed to base treatment on so little information? There is no privacy and nothing of any consequence is really talked about.
The thing that bothers me the most about all of this is that the people that live in adult homes should be getting all of the services that they need, not those that the home is willing to accept. If people want to get into supportive housing, or find work, or get involved in the surrounding community they should have help doing those things. Also, while some services may technically be offered, the quality is so low as to make the services almost nonexistent. Recreational activities include sitting in a chair and watching television or using crayons to color in coloring books. We are people just like you, and just because we live in an adult home does not mean that we should be treated like children, who need to have everything done for them, including thinking for us.
I came to the adult home when I was at a low point in my life. Depression had gotten the better of me and I wound up hospitalized at St. John’s in Far Rockaway. When it was time to be discharged, I was given two options: long-term psychiatric treatment or an adult home. Of course, I chose the adult home.
The adult home is not the right place for me—it’s too restrictive. I am capable of living in a looser setting where I could do things for myself if I was given a chance. Under the current system, you don’t get a choice. It’s a one-size-fits-all thing. This is what we’ve got and this is where you’ll go.
There is a solution—create more supportive housing and make sure some of it is for adult home residents who want to move on. We want more control over our lives and we don’t want people making decisions for us.
Yes, I have a roof over my head. But--I am not allowed true self-reliance or independence. The problem is, everything is being done for me. I cannot shop for and prepare my own food because there is no kitchen for me to use. I got yelled at once for changing my own linens—I was told to let the maid do that for me. I’ve even had to fight for the right to have a private phone in my room.
Many things led to my homelessness. But, the final circumstances were a week spent in the hospital with pneumonia, and a telegram letting me know I no longer had a job. That was in November and December of that winter. For the rest of the winter I battled pleurisy, and I fell further and further behind in rent, telephone, gas and electric. All of this deepened my depression, something I had struggled with for my entire life.
Living in an adult home was supposedly a temporary solution to homelessness. That was twelve years ago.
Getting into an adult home is easy. But getting out can be nearly impossible. I would have opted for something entirely different if I had had a choice. My only choices were an adult home or a shelter.
I had my own apartment for over twenty years and I had always worked. But I am treated as if I am completely helpless in the adult home, unable to think for myself. Over a period of time this cuts into your self-confidence and you begin to doubt your ability to start over again, especially when you have a mental illness.