Senate Special Committee on Aging Issues Testimony From Jackson Area Center for Independent Living
"Hello, Chairman Collins, Ranking Member Casey and members of the Committee! My name is
"Let me share a bit of background on myself. I have not always lived with a disability. My disability occurred on
"This is where my life took a turn, after being stabilized in
"At Shepherd, I continued to work the program 'hard' and eventually made it to the day program. I was taught more life skills and therapy from,
"Through my hard work and dedication, I was able to return back to high school for the start of my 11th-grade year at
"My boss,
"The bittersweet of my recovery and employment is that the individual who caused my hit-and-run accident was never found. It continues, to this day, to be a cold case. In order to keep hope alive, I created a website (https://edwardmitchellhitandrun.weebly.com/) as a digital archive of my hit-and-run accident in my own words, news publications, local TV interviews, as well as an about me section that lists my accomplishments, goals and aspirations, such as one day getting into TV or film acting or opening my own small business. I also try to prod the local sheriff's department into reviewing my cold case and featuring it on the local
"Till this day, whenever someone asks me about my hit-and-run accident, I tell them I'm glad it happened to me and not my little brother Rendell. I know he is strong, but I don't think he would've been able to deal with the obstacles that come along with having to live with a spinal cord injury and use a wheelchair. As it stands today, I primarily use a power chair as not to wear myself out, I do have feeling in my legs but no voluntary movement. I can feel pressure and hot and cold in my legs and trunk. If there are medical research advancements in stem cells, the connection is still being made for my brain to my legs and it is only the scar tissue that needs to be cleared up in order for me to walk again. But until then, I'm dealing with the "bad poker hand" and making the best of it.
"As they say, it's hard to keep a determined individual down, after being equipped with the tools necessary to be as independent as possible and you can say that about me. But I still need nursing care assistance with my nighttime routine and with getting up and ready for the next day. I also need assistance with home modifications. I need to try to figure out what I could do and what changes are needed for my family to take care and assist me. My determination is the same but my and my family's roles have change now that there are things I can't do on my own.
"One of the problems is when nursing care does not show up to assist and an agency doesn't notify me that no one is coming. Then my parents have to do my care. After all, I still have to go to work.
"One of the consequences of my accident is that my father had to reduce his work and dip into savings. . He used some of his 401 savings to help with expenses. He also took a job in another state to keep me and my family in a stable environment.
"When I first got home from the
"Before making my college matriculation. I experienced a once-in-a-lifetime opportunity in writing an essay for a competitive cross-cultural study abroad program.
"After that great international experience, I was ready to begin my college quest, but how? I was totally lost as to where I would end up going to college because before my hit-and-run accident I told everyone that I either want to attend Arizona State or UC Berkeley in
"The strange part is that ever since we moved to
"I was offered a full scholarship to Lane, not because of my disability, but due to the fact I had the grades and ACT scores to back it up. I accepted the scholarship and then would give it back to the school because I qualified for vocational rehabilitation benefits, which would pay for my schooling I figured my scholarship could be used for another deserving student.
"My college life was like any other hard-working student. No slack was given to me because of my disability I was taking 21 to 23 credit hours per semester because I wanted to graduate on time, I was also working on the weekends. Before graduating college I had the honor and privilege of joining the Beta Pi chapter of
"One of my best experiences was learning to drive and finally being able to be independent. Unless you've been in my position you don't know how it feels not to be able to drive yourself to your high school prom or do the things typical teenagers do between the ages of 16 and 23. I had great fraternity brothers, as well as a high school friend, who had the skills necessary to drive one of the big conversion vans to different events, such as movies, concerts and anything in between. I had worked on driver training since my senior year of high school and then was working with my local vocational rehabilitation office to get a modified vehicle. After much back and forth during my years in college, they finally approved me to be able to drive a 2008 Chevy UPLANDER.I had to pay for the cost of the minivan, approximately
"Driving, especially in a rural area, is freedom when you have a disability, but it is quite costly. Without the continued help of vocational rehabilitation I would not have the freedom I have today. Hopefully vehicle manufacturers will be able to cut the cost of vehicle modifications by doing them in-house instead of letting third-party companies do the modifications. With factory-installed modifications, more individuals with disabilities would be able to drive. Vocational rehabilitation supports obtaining adapted vehicles to keep individuals with disabilities employed and to have their independence..
"While continuing to be infatuated with the independence I had by being able to drive, as college graduation approached I had to buckle down hard and prep for my GMAT test in order to get into the
"After completing my MBA in 2011, I continued to work for
"At that point, I went through a period of unemployment. I went to numerous career fairs, such as attending National Black MBA conferences and interviewed for local jobs, but it always seemed that I was perfect on paper but once I enter the interview room, they saw more of the wheelchair than the individual. Living in rural
"That's when I noticed an internship available at the Jackson Generals minor league baseball team here in
"At the same time I accepted another part-time position with the
"To this day, I work with the Jackson Generals minor league baseball team AA affiliate of the
"Now I know you're probably wondering why do I keep taking part-time jobs? Even at Lane College I had taken a reduced salary, compared to others who were at my same job level. Working part-time and taking reduced salaries hurts my income. I have been gaining experience and have completed my Masters, but I can't accept a full salary because it would impact my nursing benefits. If I accepted a full salary, I would make too much and lose my disability benefits but I would not make enough to directly pay for nursing care, even if I gave the home care agency my entire check. Of course, if I did that, then how would I pay for medical expenses, car insurance, car repairs and gas. I need money to have my vehicle maintained at a dealer who is 85 miles away, the only authorized mobility dealer in the area. And, I pay a portion of my income for rent to live at home. I don't want to put more of a burden on my family.
"When it comes to my support services, my father still works out of state, so he can't help. I have limited nursing hours through my Medicaid waiver, so my mother stills perform at least 35 hours of my support a week. Form the state, I only receive 27 hours of support, which I appreciate, but many times those hours are not used because the agency can't find a nurse.
"We are sometimes told by my agencies that because I don't have an 8 to 5 job that they can't find staff to support me. It is not easy to find a job if you're disability, but I have been able to get and maintain jobs, not because I ask for my bosses to make exceptions, but because I have the ability to learn the job, to learn new skills at the job and to be the best person for the job, with or without a disability. Everyone wants the best person for the job, I train and perform the job with or without a disability. I do what is required of the job to maintain, it no exceptions.
"My mother, Ms.
"On this one evening, as my mother was trying to wind herself down for the night after helping me, she stumbled onto the Tennessee ABLE program.
"Once we stumbled upon ABLE, we thought it was a lifeline. It would allow me to start saving without penalizing or jeopardizing my benefits. You see, my parents worry what will happen to me when they are no longer able to help or they have died. They keep this thought in their heads every day.
"You see, when people with special needs apply for disability benefits, they must show that they do not have enough money to support themselves independently. Money saved in a traditional bank account counts against the ability to qualify for disability benefits or Medicaid waiver programs.
"As a result, individuals with special needs are not able to build savings with the money they earn or that they receive through inheritance, gifts or a life insurance policy. On a day-to-day basis, this means that individuals must live with very little money if they want to receive government aid. Or, as in my case, qualify for a Medicaid waiver program that pays for nursing care. As I've said, I get 27 hours a week of nursing support, which breaks down to four hours a night and three hours on Fridays. The reason I only qualify for 27 hours is due to the fact I have a spinal cord injury but because of the things I am able to do it doesn't allow me to have the full benefits that I once had which allowed me to have someone there at night to help me get down but also to get up in the morning.
"One way in the past to save money and avoid losing benefits is to use a special needs trust, which provides a place to save money that can be used for the benefit of the person with a disability, without affecting his or her eligibility for benefits. But special needs trusts must be controlled by a trustee or trustees, not by the person with special needs who benefits from the trust. Not only does this leave the individual with the disability with little control over his or her finances, it also limits the person's independence.
"ABLE accounts give individuals with disabilities the opportunity to manage a modest bank account without penalty against their eligibility for SSI, Medicaid, or other government benefits. Contributions are capped at
"Since I found out about ABLE I've tried sharing it with all the consumers that come through the
"I have tried to put away a little bit from each check since opening my ABLE account but it is hard to contribute much when you can only earn $2000 a month. But the ABLE program has given my parents peace of mind because they are aging. My father,
"I want to make two recommendations about making it possible for people with disabilities to be economically self-sufficient. It is my wish that states would make it easier to transfer waiver programs. If you receive waiver services in one state, you can't take those services with you to another state. That means you are locked into staying in your state and can't go to another state to get a better job. The second recommendation is that it would be better if individuals like myself could continue to advance in our careers without losing our benefits. I would be willing to pay according to a sliding scale for my nursing care. Basically as people like me advance in our careers we could pay a percentage back into the waiver program as we obtain higher rates of pay. We shouldn't be scared of losing our benefits and we shouldn't be held back from advancing our careers. We need to be able to build a future for ourselves and also have a family and do the things other hard-working Americans do.
"In closing, I want to be self-sufficient and continue climbing the career ladder. I never wanted to be receiving SSI benefit, but my life changed in 2003. As my path is leading me, maybe into a career in politics, I might, with the help of the disability benefits I receive and my ABLE account, be able to help make changes and improve the lives of others."
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