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Taking ChargeJoel Spencer Reese’s Personal Story: Taking Charge
For the past several years, I resided in an ISL setting and shared a
home with three roommates that I had very little in common with.
I never really felt like that was my home, as there were frequent
staff and roommate changes and when my mom and friends came to visit
me, my roommates and staff were always around so no one really felt
comfortable to visit. There were also many rules that made me
angry. For instance, it was a big deal for me to eat in the
living room while I was watching TV at night. I also had to have
someone with me all the time, which made me feel like no one trusted
me or thought I was capable of doing some things by myself. Lots
of meetings were held over the years with the provider agency and my
mom to discuss my behaviors. At one of the meetings, my mom was
informed about a program called Self Directed Services. After hearing
about this program, I thought I could finally have more control and be
more independent. I just wanted and needed more freedom. That
decision changed my
life. I had a whole team behind me. Amanda, Andrea and Terri
have always supported me and encouraged me to move forward.
In September of 2009, I moved into my own apartment. I have
chosen not to have a roommate at this time. By self directing,
with the assistance of my mom, who is called the employer of record, I
am able to assist in managing the care I receive. One aspect of
this is the hiring and firing of staff. Self direction allows me
to choose who is going to work for me, so I’m not stuck with a
personal assistant that just doesn’t quite get along with me.
The people that work for me, I truly trust and like. I’ve been
able to hire relatives that know me well and a previous staff member
that worked for me in the past that I think of as a second mom.
Through self direction, I have the opportunity to assist my mom in
training my own staff. Staff members work for me, so I don’t
have to worry anymore about being told I can’t eat in my own room or
I can’t go to the races tonight because my roommate doesn’t want
to go. My personal assistants are trained on what my needs and
supports are so they can assist me in reaching my goals and assisting
me when I need help with something. Currently, I’m learning how to
cook and manage my money.
Another feature of self directing that I really like is being able to
adjust the times of day my staff works for me. If I need to be dropped
off at the RC races on Friday evenings, or go to my volunteer job at
the Fire House onTuesday’s and then shopping at 2 pm on Saturday, I
can adjust my staff’s schedule to match my own. I’m not
stuck at home staring at the walls. I can go out and have fun
with friends and family when I choose. It is also much easier to
figure out how I can spend time with my Mom based on mine and her
schedules.
For the first time in a long time I feel like this is my home and I am
very comfortable having family and friends come over to visit. I was
also able to get a pet rabbit, Bugsy, to share my home with. I have
many more friends and natural supports than I ever dreamed of having
before. I have friends who often pick me up, and we go to races
together. A few weeks ago I went to St. Charles for the weekend and
participated in a big RC race with a friend, who also enjoys race car
races. Of course, my mom knows my friend and feels comfortable with
him taking me places. My mom tried calling me several times on
Saturday to make sure I was doing ok. When I finally answered my phone
Saturday evening, I told her I was too busy to talk. I now know more
about how my mom feels when she is trying to work and I call her
several times.
Thanks to self directed supports and self determination, I am able to
spend a few hours every night by myself in my own apartment without
staff’s assistance. If I need something, I have my mom’s
number and back-up numbers to call if an emergency should
happen. I feel like I’m finally in control over my own life
and people trust me now to make responsible decisions. I’m
also able to ride my bike to Wal-Mart and my Dr’s office without
staff following me. Currently, I’m volunteering at the Fire House
where I received the Serviceman of the Year award. A few days
ago I had an interview for a night position at Wal-Mart. I have
my fingers crossed that I will get the job. Night-time is my
best time. But if I don't get the job I will keep looking until I find
one. Taking charge of my own life has enabled me to have the life I
have always wanted and be a part of the community where I live. it is
a decision I am glad to have made.