I started in the West Haverstraw Nursing Home when I was about three years old. I did not like it there because of the treatment the residents received. We were not treated with the respect due any human being. Because we have physical impairments, many of us were assumed to be, and thus were labeled, mentally retarded. I believe that no matter how you are labeled, you should be given basic rights like decent treatment, education, and the right to live in the community. Later I was moved to Rome Developmental Center.
At Rome, I received much of the same treatment as at West Haverstraw.
I later moved to Syracuse Developmental Center, where I lived from 1979
until 1982. Residents were not respected. We were given no choices and
no freedom. Some people were abused, although it was better than at Rome.
In 1982, I heard about supported apartment being run here in Syracuse
by United Cerebral Palsy, now know as ENABLE. The apartment program was
just getting started and I wanted to be a part of it. [Editor's note: This
program is an ICF/MR operated in an apartment building in Syracuse. Eight
people live in two apartments adapted for people with physical disabilities
and staff on a 24-hour basis. The agency calls the program, which receives
Medicaid funding and meets ICF/MR and state regulations, as "supported
apartment" program.] I had wanted to get out of the institution for years
and I finally saw my opportunity. In August of 1982 I moved into the apartment.
I had three roommates who also had a variety of disabilities. I lived in
this apartment for six years. It was a great improvement over Syracuse
Developmental Center. Now I was living with three other people instead
of 20, the number of people I roomed with at SDC. But what I liked most
was that it was in the community. I could be seen as belonging to the community,
and I could experience being around people without disabilities.
A supported apartment might be a much better place than an institution. However, thinking about it now, it would have been best if I could have moved directly to a place of my own, with the support I needed. I think I could have made it if I had had the supports to make it work. In the supported apartment, I did learn a lot about living in the community, and I made new friends. After awhile, though, I began to feel very restricted in my growth. I was still feeling that my life was being controlled. I was not making decisions for myself. There was still instances when others made decisions for me. For example, I travel a lot for my job, and there were many times when I got home to find that plans that involved me had been made without asking me. I had to leave the apartment every day, even if I was tired after a trip (though they did occasionally make exceptions, if I made arrangements ahead of time). Also, I didn't get to choose who my roommates would be.
The staff at the apartment were excellent. They did all they could to create a homelike atmosphere. However, since we were funded by Medicaid, they had to develop and submit things such as personal goals for all the residents. The staff people did realize some of the state requirements were ridiculous and a waster of time, but they were unsuccessful in getting any changes made. They even went so far as to challenge Medicaid to cite them for violations instead of fulfilling certain requirements.
During my fifth year at the apartment, I began to feel strongly that
I was ready to leave. Although on a much smaller scale, the apartment still
retained some institutional features. For example, whenever I wanted to
go somewhere, I had to tell everyone where I was going and when I was coming
home. I am an adult and I felt that I was capable of using my own judgment
regarding where I was going and when I would return. I felt I didn't have
any privacy. I didn't feel truly free to make my own choices. I decided
I was ready to move on. So I began to talk with our administrators about
how the apartment was better than the institution, but because of the regulations
it was still somewhat institutional. I felt the apartment had no more purpose
for me. I had gotten everything from the experience I was going to get.
I actually moved into my own house on September 30, 1988, after six
years in the supported apartment. I moved in with my friend John, who had
worked with me at the supported apartment, and John's roommate, Gordon.
We rent a house on Hawley Avenue which was bought by our landlord (also
a friend of mine) specifically with us in mind. She bought a house she
thought could easily be made accessible for me and my wheelchair. My name
is on the lease for the house. I think it is important to say that neither
of my two roommates are disabled. Our neighborhood is one which we chose
for ourselves. The way this happened was that ENABLE had been working for
a few years to start a service offering individualized support for adults.
They wanted a service that would combine private residence and the supports
necessary to assist a person with developmental disabilities to live there.
[Editor's note: The options for community living through New York State's
Office of Mental Retardation and Developmental Disabilities (OMRDD) are
based on a continuum model and are quite rigidly applied throughout the
state. ENABLE submitted a special proposal that permitted use of OMRDD's
"family care" funding to provide individualized support for a small number
of people who are assisted to live in their own homes.] I was the first
person to benefit from this program.
The unique things about this situation is that the agency did not set this up for us. It was the choice of the three of us working together. The agency was very supportive of our decision to live together in this particular house. Even when their own consultant advised them not to go with this house because it would be costly to make it accessible, they backed up and did a lot of work to make it accessible for me. Also, because the landlord is my friend, she had been very supportive and is still working on improving it, like enlarging the bathroom for me. I consider myself very fortunate that I was able to maintain my services such as visiting nurses, doctors, and therapists. I was able to carry those services over, with Medicaid funding. This was all my decision. I am currently in my thirteenth month in my house and everything is going fine.
The difference between my new living situation and my former living
situations are numerous and immeasurable. I am now responsible for paying
my own bills. Previously, I had never been entrusted with responsibilities.
It was always assumed I could not be responsible for myself because I was
disabled. Although I still receive financial assistance to pay my bills,
everything is in my name. I am responsible for budgeting my money. My roommates
expect me to pay my share of the bills. Another difference is that my mother,
who lives more than 200 miles away, has been able to stay at my house for
the weekend. She could never do that before, both because we didn't have
the room and she wouldn't have felt comfortable. For the first time in
all these years, I've been able to host my mother in my own home.
Being responsible for my life led to my having control over my life.
I make decisions for myself. I have equal say in everything that happens
regarding our house. I make all the decisions that directly affect me.
In the institution and supported apartment, my decisions were all made
for me, often without my consultation. I did not have real control over
my life. In my former living situations, recreation was decided by majority
vote. I did not control my choice of activity. Now, I go out when I want
and where I want. I don't need to ask anyone's permission.
As a consumer, I would like to propose that parents and professionals give people the opportunity to make personal choices themselves. I would also like the government to allocate more funding to support people in their own homes.