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 itís 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 donít get a haircut when you
need one but when you can afford one by doing without
other things that month.
Clothing must be replaced Ė 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 donít 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
roommateís 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 hasnít 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
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
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
didnít 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. Iíve 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
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. Itís difficult to make the leap to total
independence. So you need something in between. We donít
want adult homes to be dumping grounds for anyone and
everyone. We are all different--thatís 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 Ĺ months. While I was in the
hospital they served me with papers saying I couldnít 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
I finally got out of there. I went to a
treatment program apartment, and from there I moved to
supported housing. Iím getting off my medication this
month. The only meds Iíll be taking will be diabetes
For the future, I want the same respect
and honor, I want to live like everybody else lives.
Mental illness is just like diabetes.
Itís just an illness.
Me and my girlfriend been going together
for 2 Ĺ years and we want to live together. The housing
program Iím in doesnít allow us to live together. Thatís
what I want now.
In my own apartment now, I like to cook.
I like to take a bath and soak. I couldnít do that in an
adult home. You canít tie up the bathroom when there are
three other people waiting. Plus now I get to have my
girlfriend spend the weekend with me.
Iím thirty-six years old. I was
thirty-two when I moved in to an adult home in Brooklyn.
Iíve 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 Waldbaumís 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 couldnít 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
hospitalizedóI 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 Cityóitís 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 Ĺ 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 uncleís office. I couldnít
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 Masterís degreesóone 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 closelyóI 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. Iíd 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
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
didnít offer me any choices, and didnít even know
anything about the place, had just been given a flyer
about a place. They told meóthis is where youíre going,
and that was it. This unlicensed group home turned out
to be very religious. They took me to a shelter because
I wouldnít 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 didnít help me find a place to live.
Another client there was a resident of an adult home and
he told the administrator about me. Thatís the way I
found out about the home I live in.
I want the life I had before. Youíre
always under someoneís thumb in an adult home. You have
to eat when they want you to eat. They treat you like
youíre inferior and they donít like you to have
independent thoughts. Thereís too much emphasis on
profit and not anything for the residents. I havenít had
medication for about a week now because I donít have
Medicaid and they havenít helped me with my benefits.
The casemanager at my adult home told me she doesnít
work for the residentsóshe 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 donít see the differences between people. They put
you all in one lump. Iím high functioning and Iíve 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 Iíve hadóin my clinic, the hospital, the group
home and the adult homeónever 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 CIADís 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
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, ďHow are
you, are you having any problems? No? Great see you
later!Ē 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. Johnís 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
meóitís 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 donít
get a choice. Itís a one-size-fits-all thing. This is
what weíve got and this is where youíll go.
There is a solutionócreate 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 donít want people making decisions
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 linensóI was told to let the maid do that for me.
Iíve 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
Living in an adult home was supposedly a
temporary solution to homelessness. That was twelve
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