Open Road

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I have many goals in life. One is almost done and that is to have my own home. Another big goal of mine is to start driving. The redesign of my new home will give me significantly more independence, but that comes at a cost. That cost is not having my family always around to give me a ride in my wheelchair accessible minivan. My new home is walking or rolling distance to many places. It also has an accessible community shuttle, but it is very slow.

I believe that there are very few alternatives for true independence other than being able to drive. I have looked at many different driving systems currently on the market and I believe the Paravan Space II Drive-By-Wire System is the best for me. It is available in three steering options which include a joystick, mini-steering wheel, and a rotational steering device. After doing a lot of research I believe that the rotational steering device is the best for my specific needs.

The main issue is that very few to no one in my area train people to use the Paravan Space II Drive-By-Wire System with a rotational steering device. The second issue which is huge is that it costs around $70,000 which does not include the cost of the modified vehicle. Vocational Rehabilitation will pay for this in most cases, but I am not most cases. Vocational Rehabilitation will pay for things if you are working or looking to work, but I cannot work as I cannot afford to lose my Medicaid Long Term Care as I mentioned in I might be in a wheelchair, but I don’t just sit on my ass. I am not giving up on this next dream. I even bought the website domain www.mostaccessiblevehicle.com so I can share my process with others. If anyone has any ideas of how I can make this a reality or knows someone at Paravan please comment or contact me.

Beyond the Door

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Most people open and close doors every day with very little thought. For me and many with disabilities the task can be daunting or even impossible. My new home is almost finished and I wanted to make it extremely accessible with my doors being no exception. My architect came up with idea of using a huge pocket door to separate my bedroom from my living room. I wanted to have the ability to open and close it  without any assistance. For years door openers for swing doors have existed, but very little for residential sliding doors. I was determined to find a solution when I found Autoslide Automation System that made a door opener for all types of sliding doors. I reached out to them and they offered to sponsor me with their Autoslide Automation System.

Most door openers like the ever popular Open Sesame which is used on swing door like my front door simply open and close the door. Yes, the Autoslide Automation System open and closes the door, but it is much more advanced than that. It actually learns about your door and entry. It calculates how big the opening is and how heavy the door is. It uses this to know how much power and force to use. It also has safety features to reopen if something touches it when it is trying to close. This all might sound very complicated and well it is, but it does not make it any harder to use. I actually found it much easier to setup than the swing door opener as the Autoslide Automation System does most of the programming work.

There are several ways to open and close the Autoslide Automation System. You can use a keychain remote control, a wall mounted remote control, a motion sensor, or as I did connect to a home automation system. One day hopefully in the very near future I hope to have the financial ability to get an assistance dog. When I do the Autoslide Automation System has a pet feature so my assistance dog can also use the Autoslide Automation System.

Time for Change

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If you read my recent blog entry I might be in a wheelchair, but I don’t just sit on my ass then you know the issues I am facing along with many others trying to keep their benefits while earning an income. I have recently met with staff from my state representative’s office and federal representative’s office. It has all come down to the fact that if real change will occur it must come from the governor. I have recently written a petition to Florida Governor Rick Scott and the members of the Florida state legislature.

I understand this issue may not concern you directly, but if we only stood up for issues that directly affected us we would be a very apathetic group of people. One fifth of the world is disabled and I think that is a very large minority. I am asking you take a minute to review and sign this petition. I am also asking you to please share this with everyone you know. If you choose not to sign because you disagree with it I do not mind, but I would ask you to please share with me what you disagree with and or what your idea for a solution is.

Inherent Challenges

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I recently wrote about how I want to make an income and live the American dream. Aside from medical costs certain living costs and entertainment costs might be significantly increased. For example, when I travel the cost is much higher because I am unable to go alone. If I go to New York I have to purchase two flights, food for my caretaker, and possibly extra money for their time since they are basically working round the clock. Any places I go that have entry fees also cost me double. Even if I am not traveling and I go to lunch it is common courtesy to offer to pay and I do not want to sound stingy, but this is constantly double the cost which can really add up. This applies to so many things that include movies, concerts, events, museums, and much more. I am not saying persons with disabilities should be given these services or be assisted by the government. I am explaining that the cost of certain expenses are higher for persons with disabilities and feel that we should be allowed to earn higher than normal income under Medicaid guidelines.

I might be in a wheelchair, but I don’t just sit on my ass.

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I recently went on Medicare, Social Security Disability Income, Florida Managed Medical Assistance Medicaid, and Florida Long Term Care Medicaid. Sometimes it truly feels like a full time job just juggling all of these benefit programs. The most vital of these programs and the hardest to obtain is Florida Long Term Care Medicaid. This programs is what gives me the care I need to do the things that most can do independently. Medicare and Florida Managed Medical Assistance Medicaid are great programs that cover traditional medical expenses just like typical health insurance that most can purchase or receive from an employer. Since I have worked in the past and earned income credits I receive a check from the federal government in the form Social Security Disability Income which is wonderful, but not nearly enough to cover my living expenses.

I am not writing this blog saying I want more from the government in the form of a higher Social Security Disability Income or more benefits. I want to work just like everyone and earn an income. It is not that I cannot work or cannot find work. The issue is that Florida has very strict income and asset limits for persons on Medicaid. If I ever have more than $2,000 in my bank I will lose my Medicaid and if I make more than $2,199 before taxes in a month I will lose my Medicaid. There are many programs that help you to keep your Social Security Disability Income and Medicare while you try to go back to work. There are also many programs that allow you to shelter your assets over the $2,000 asset limit. As of now I have nothing that allows you to earn income above the $2,199 limit.

Florida does have a share of cost program called Medically Needy Medicaid which I was on for two months and makes no sense. First, this program does not cover any long term care expenses. The state of Florida determines what you can pay for your care and the numbers usually make no sense. For example, if you make $1,200 they will tell you can pay $1,000 which is your share of cost. If that month you have very few medical expenses and they add up to $350 then you pay the $350. If your medical expenses add up to $1,000 you still pay the $1,000. Now if your medical expenses are $1,000.01 the state of Florida will pay all $1,000.01 and you pay nothing. In essence the state of Florida is encouraging you to increase your medical expenses.

I am asking that the state of Florida to have a way that persons with disabilities that need the services from Florida Long Term Care Medicaid that cannot be found in private insurance be able to keep them while still earning a living. I am not saying I want to be a millionaire and still receive government assistance. I am saying that I want to work, buy my own health insurance, pay income tax, and live the American dream. I cannot live the American dream with an income limit of $2,199 before taxes as it does not even cover my living expenses. When my care that is covered by Florida Long Term Care Medicaid costs over $100,000 I truly do not how I can make this and money to cover my living expenses.

Queen of 💩 Robots

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I have recently become of big fan Simone Giertz who is the Queen of 💩 Robots. I would highly recommend you check out her YouTube channel, but I warn you that most of her content may not be suited for young children. Simone invents robots that do not really work, but they are supposed to do normal tasks that we as disabled persons refer to activities of daily living. I am hoping that her ideas can lead to inspire to be more creative projects that can the disability community. For example, she created a robot to pour milk in cereal and a robot that can brush teeth. These idea might sound very silly, but this can help a person with a disability live a much more independent life. I have recently reached out to Simone about possibly helping with a new secret project that I will share soon. I hope you like her videos and they inspire you to create something even if it is useless.

Missing In Action

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The following is not my typical review or upbeat writing. As many people might have noticed it has been quite a long time since I have written anything. I am sure some people might have given up on the idea I would return, some people might be wondering where I went, and some people might not of cared. So here is where I was and where I am going.

Last year was one of the absolute hardest years of my life and that is saying a lot as my life has had many crazy twists. For quite some time I had been battling an upper respiratory infection which kept coming and going. Soon into the year I lost my cobra health insurance and I spent an endless amount of time on the telephone trying to figure out how to get Medicaid. First, I got Florida Medically Needy Medicaid which was an absolute disaster and put me into debt. After about two months I went on Florida Medicaid which makes things complicated, but was a huge relief.

During all of this I broke my left arm while changing my shirt. I went to see an orthopedic surgeon who said I had a cyst in my arm. The orthopedic surgeon said I needed to have an MRI and see an orthopedic oncologist. I was very nervous and began taking it one step at a time. I was also in an extreme amount of pain, but I have to be extremely careful as narcotics can not suppress the pain, but also suppress my already compromised respiratory system. The break in my arm caused many issues because I use it eat, use my phone, type, for balance, and to position myself. A few weeks later I went to get an MRI as recommended and during the transfer from my wheelchair to the MRI I severely injured my left hip. I still do not if I broke it or just severely strained it. A week after I injured my hip I was getting dressed and trying not to hurt my hip or arm when I over stretched my right knee. I was already not sleeping well from the pain in my arm and hip, but now with the added pain of my knee sleeping was not an option. To top things off the upper respiratory infection I had came back with a vengeance causing pneumonia. While being treated for the pneumonia I found out that my chronic anemia also came back to the point my skin was almost translucent. At this point I was in severe pain, had literally not slept for more than one hour a day in over two months, could barely eat, and could hardly breathe.

I wish I could say this was a dream, nightmare, story, movie, or even an exaggeration, but it was not. It was one of the hardest times of my life physically, emotionally, and monetarily. I am not telling this story because I want pity or sympathy. I am telling this story because this is where I have been and what I have survived. I found out after doing the MRI I have no cyst in my arm, but I do have osteoporosis. My hip and knee have fully healed. My upper respiratory infection and pneumonia are gone. My arm is no longer causing me pain, but is still swollen and I am slowly working to regain strength. I continue to monitor my chronic anemia, but it is under control. Soon I will begin treating my osteoporosis. I am also off all narcotics and sleeping through the night.

I want to thank all of my friends and family that were there for me during this time. I know I might not have been the greatest at staying in touch, the happiest to be around, and or the nicest. I also know I might caused you a lot of fear and or worry.

I love life, but sometimes it just sucks and we learn to fight for that better day. In conclusion, I am still getting my strength back, but I am hoping to begin writing a lot more so please stay tuned. Over the last few days I have begun typing with two hands again and begun be able to feed myself. These might seem like simple tasks to many, but it means I am going in the right direction and slowly getting my independence back.

Delivering More Than Happiness

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I recently purchased a pair of shoes from Zappos for the first time. I placed my order late on a Saturday night and on Monday the shoes had arrived. I was very excited that I found a shoe in my size as I typically have a lot of difficulty given my small feet. Once I tried on the shoes I found that they were to tight. I called and they told me I would have the larger size the next day and just give the delivery driver the shoes that did not fit.

I had previously read Delivering Happiness by Tony Hsieh about Zappos. I expected good service, but was really amazed by the speed of my order, their return policy, and how helpful the staff was. My amazement did not stop there. A few days later I got an additional package from Zappos with a handwritten note from Zaid the customer service representative that helped me place my order. Along with the handwritten note was a throw blanket.

I do not think Zaid and Zappos have any idea what this gift means to me. Due to my disability I am always cold. First, I am very thin which does not help. Second, I take a beta blocker which causes me to be cold and thyroid medicine that causes cold intolerance. Last, I suffer from anemia which makes it hard to stay warm. I recently found out that to control my anemia I need to have a series of iron infusion treatments. These treatments last about forty minutes at my doctors office which is extremely cold. Just before I received this gift from Zappos I was looking to buy a blanket, but thanks to this gift from Zaid and Zappos I will be feeling warm and loved. Thank you Zaid and Zappos.

Magic Wheelchair

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I recently discovered a nonprofit organization called Magic Wheelchair that is different type of a charitable organization. This nonprofit organization is not looking to cure any disease, solve a complex problem, or the typical goals of a nonprofit organization. The focus of Magic Wheelchair is to create Halloween costumes for children in wheelchairs. If you look each year on Facebook, Twitter, Pinterest, and other social media outlets you will see some awesome and creative ideas. Magic Wheelchair is a nonprofit organization helping to bring these ideas to the children.

Are sport utility vehicles the new minivans?

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Many years ago the main vehicle of choice for persons that were wheelchair bound were large full size vans. Over the years this changed and the vehicle of choice became the minivan. I have only used minivans and for the most part they do their job. The simplistic design of the modification, the size, and gas mileage make it very desirable. The truth is there is very little that is cool about a minivan. You can dress it up, trick it out, and fill it with luxury, but at the end of the day it is like putting lipstick on a pig.

Now there are several sport utility vehicles designed for persons who are wheelchair bound. These sport utility vehicles include the Mobility Ventures MV-1Fiat 500L, Scion xB, Kia Soul, Honda PilotFord Explorer, GMC Acadia, GMC Acadia DenaliGMC Yukon XL, GMC Yukon XL DenaliChevrolet Traverse, Chevrolet Suburban, Buick Enclave, and Cadillac Escalade ESV. These vehicles are available through Mobility Ventures, Freedom Motors, BraunAbilityMobility SVM, and All-Terrain Conversions.

Have you tried any of these or other wheelchair accessible vehicles? Please share your experiences in the comments section below.

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