A Story about my life living in a Nursing Home from early 1997 to late 1998.
It is now 2011, but the below story was written in 2003 a brief explanation of what it was like living
in a nursing home after my car accident when I became a quadriplegic, got
out of the hospital and had nowhere to live. I wrote this story the 1st time I ever
gave a testimony to the State of Ohio legislators. Actually, this was one of the early times
of my advocating for people with disabilities since I had been injured. I got
involved as a member of the Ohio Olmstead Task Force, a grassroots coalition
of people with disabilities of all ages, family members, advocates and
organizations advocating together for the right to live, work and participate
in their communities. . If you don't know what I'm referring to as "Olmstead" it
means:
The Olmstead decision of 1999 confirmed that states must ensure that people with
disabilities do not experience discrimination by being institutionalized when they
could be served in a more integrated social community setting. This important
decision has laid the foundation for people with disabilities to sue for discrimination
and impingement of their civil rights in states where people have been put at risk
due to a lack of community-based services.
This link is a good informal video talking about the Olmstead decision 10 years
later, with testimony from those who 1st started the lawsuit:
After leaving the nursing home in 1998, finishing my college education in 2001, I have
been employed full-time for the Federal Government for the last 12 years, live
independently in my own home, and lead a very active lifestyle. I no longer am living on
state and federal subsidized tax dollars, but earning an income salary, like all citizens of
the United States desire, regardless of race, color, nationality, sex, or disability. I have
lived with a spinal cord injury for 15 years. I often think about the year and a half I
spent living in a nursing home when I was 22 years old. There is no reason for any
individual with a disability to be institutionalized, no matter what the disability.
Even for those who have various types of disabilities that may require assistance
and utilize public subsidized state monies, it is far less money spent out of a State’s
budget to have people with disabilities living independently in the community, then
in an institutional setting. Discrimination comes in many forms. For years, people with
disabilities have fought for their civil rights to pass laws against discrimination, through
awareness; we learn to become an inclusive society.
My name Betsy Volk, I am a person with a DisAbility. Notice, “Ability” within the
word first.
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2/2/03- A brief story about my life institutionalized in a nursing home:
There are many different reasons people with disabilities live in facilities such as nursing
homes. Unfortunately, most do not understand the rights we have as people with
disabilities, and are left institutionalized most of their life. My story of life in an
institutional nursing home begins in 1997 until September of 1998, when I moved to
southern Ohio to finish college. Previously, I had been in an automobile accident six
months earlier during which time was spent in several hospitals recovering, and now
faced with a disability.
At the end of my initial hospital stay, I had now been disabled for 3 months, a
quadriplegic, and paralyzed from the chest down, "Where are you going to go" were the
first words uttered from the social director and occupational therapists mouth. This was a
very good question. The only other option besides finding a long-term care facility in
which I could receive more rehabilitation was a nursing home. Luckily, I moved to a
long-term care rehab center in which provided excellent spinal cord injury rehabilitation.
Of course, one cannot stay for too long on Medicaid dollars still receiving rehabilitation
of physical therapy and occupational therapy. So, the search for a nursing home facility
again, was my only option. I had no idea what was available to me as a person with a
disability. The facility where I was currently located no longer was accepting
“quadriplegics”, as they “stated” quadriplegics require too much care and their nursing
dollars were cut short. This was surely an example of a facility in financial instability, as
there were several other quadriplegics living at this nursing home. Now, in 2003, I laugh
a bit at this “too much care” thing, as I require approximately 4 hours in a 24-hour period,
of assisted personal care with my needs. A prime example of why it is cheaper to live
outside of an institutional setting and less state budget tax dollars spent on people with
disabilities, especially when I was 21 years old.
Knowing I wanted to go back to school somehow to get my college degree, I located a
nursing home facility; which was about 15 minutes from the school I desired to attend.
After arriving at my new home, I was wheeled to my room that I would spend the next
year and half. I was 21 years old and before my disability I knew most everything. (Or
so I thought). Suddenly, after sitting in my new room for 15 minutes alone, I knew that
the world was going to be a very challenging place. I felt as if I ever wanted to make
anything of myself again; now was the time to try to figure some mid-term solution.
Almost a month after I moved in the nursing home, I started attending classes at a
community college. Going to classes was my only escape into a world where people did
not look at me as if I lived in a nursing home, look down upon me, or thought I was
incapable of doing things. At times, I would take my power wheelchair into the town
where the nursing home was located. With my power wheelchair that I bought with
donated money to me, I would wheel to the bank, in the center of the small town and I
opened up a checking account. This way at least I could take control somewhat of
finances and deposit my social security check I received of $38 dollars a month to live
on. The rest of my Social Security check went to the nursing home every month.
Eventually, I would wheel around the small town to become familiar. I even went to a
football game in the hometown once, and even to the local tavern bar a few times. The
nursing home had such a fit issue about me going to the bar to have fun. God forbid I
could make any decisions on my own, or do something I wanted to do. But each time, I
had to go back home to a facility full of people three times my age; who may not
remember me from one day to the next. I’m not saying I disliked the resident’s; actually
I cared quite deeply for them and their safety. There were some rather unusual “things”
that occurred with theirs; and my care.
I was able to have a phone line in my room I paid for monthly in which I had a computer
and access to the Internet. The Internet became a pathway to freedom for me. I gained
valuable knowledge of services that may be available to obtain. Some people are not able
to have this resource because of lack of funding. I was able because a local Lions Club
organization donated money in which I could spend on a new computer, and I met a good
friend who would help me learn about the computer more and set it up for me. I was very
grateful. Oh yes, and the cable TV I had was good entertainment especially since the
cable TV was an “amenity”.
Healthcare quality of care went up and down in the nursing home. Only a couple of the
personal care assistants lasted a longtime because they were hard workers and there was
not much work in the town that I lived in. Usually, a new face would always be seen
working as an aide in the home. Many would call off, and they would never get fired. At
first I was told when I was going to get up, and when I was going to go to bed. This was
totally unbelievable, as the nursing home was staffed 24/7, or supposed to be.
Days went by, months went by, yet no one offered to give me any choices to leave the nursing home. One time, I was so ill, that I did not feel I could make my doctor's appointment. The
nurses would not listen to me, and they insisted on wheeling me down the hallway. I
ended up having a seizure from Autonomic Dysreflexia; related to my spinal cord injury.
The seizure caused me to bite off part of my tongue in which I ended up needing six
stitches. Other similar episodes occurred, however I will not continue.
Another time, scabies were present in some of the residents at the nursing home. I was
the only resident allowed to leave the facility or get dressed for several weeks because I
was attending classes. Everything in my room, all my clothing, and decorations had to be
bagged up. By this time, I felt as though I was certainly living in very sad conditions I
never imagined myself to be. Many times I would consult other residents who would not
speak out because they were scared. I felt as though I became a spokesperson for older
residents. Here I was, a 22-year-old by this time playing Pokino, Bingo, and any other
nursing home activities.
Meanwhile, in late summer 1998, with the support of the Bureau of Vocational
Rehabilitation, a State Funded agency, I was able to find a private home health care
agency in Dayton, OH that would help take care of me until my paperwork could be
transferred to Greene County where I would finish my education at Wright State
University. I was constantly on the phone in my room. I knew this was it, or I never
would leave. Many told me I would never leave. I felt as though living in a nursing home
could be a transition, however it wasn't this way. Many times I often wondered if there
was any other options. I knew there had to be, but how do you find them?
After moving out of the nursing home, there was a certain freedom that I felt I had not
had ever since my accident and becoming a person with a disability in 1996. The first
time I went to a store such as Meijjer, I sat in disbelief. I could not believe how fast
paced our world is. It was as if I had been locked away from life and suddenly I felt it
again. Today, I remember those days in 1997 in which I spent with other residents who
had been living in that nursing home for years. It almost brings me to tears. I remember
when each person died whom I lived with day after day, and the woman who died a slow
death of cancer in the room adjacent to mine. When one day she was smiling, and the
next day her smile turned into bones and her yearning for life to end.
I asked myself, is this how it's really meant to be for someone who does not choose their
disability and is 22 years old? Why do I have to be put through these things? Is this how
our government really chooses to have our disabled live their lives? How quickly one
day can change from the next. We do not know what will happen in the future of our
lives. But one thing we should be guaranteed is the independence to choose our own way
of life and living, and not have to be in institutions that degrade and tear us down
mentally every day.
Since moving out of the nursing home, I graduated from college with a Bachelor's degree
from Wright State University. I am currently employed with the US. Department of
Energy’s Miamisburg Closure Project in Miamisburg, Ohio working a 40-hour week. I
no longer receive benefits because according to Social Security I am no longer disabled
due to making wages. I live alone with my service dog Trooper. I receive care in which
I hire all my attendants privately in the morning and in the evening. Otherwise, I spend
days hoping that others like myself will not be subject to living in institutional life like I
did for a year and half.
At times, I still have psychological thoughts that my life could turn in which I would need to return
to a nursing home facility. Being guaranteed the right to not have to live in the nursing
home is only one stepping-stone for people with disabilities. Making sure there are
adequate services for people with disabilities in the community is an important task.
Please consider how your life would be if you are faced with the conditions of living in a
nursing home. You would want to choose the way to live your life just as you do now,
correct?
Thank you for taking the time to read my story. I hope it has enlightened your view of
what life is like for young people with disabilities who live or have lived in nursing
homes. Promote Community Choice living for people with Disabilities!
