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

2 Comments

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.

Missing In Action

2 Comments

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.

Happy Birthday ADA

No Comments

Today, July 26th the Americans with Disability Act turns 25 years old. The Americans with Disability Act is a law designed to make the United States accessible for persons with disabilities. Originally enacted in 1990 it has been updated over the 25 year period.

The Americans with Disability Act is a great tool that has literally and figuratively opened many doors for persons with disabilities, but it is not perfect by any means. The biggest challenge for persons with disabilities is the fact that our abilities and inabilities are extremely unique. Each and every persons has certain strengths and weaknesses. The best accommodation for one person may not be the best accommodation for another. For example, I have recently been looking at refrigerators and many are rated accessible by the standards set in the Americans with Disability Act, but these refrigerators are still not accessible for me.

My advice is always follow the regulations in the Americans with Disability Act if for no other reason then for not getting sued. Just be there to assist a client, friend, and or family member that has a disability. Do your best to assist them even if that means going above and beyond the Americans with Disability Act. For example, if the door to your store is legally considered accessible by the Americans with Disability Act, but you see someone in a wheelchair struggling offer to hold it for them.

I see the Americans with Disability Act as a set of legal guidelines for us to follow. I also do not believe that it should mean we ignore what is right in front of us. We have a moral duty to try and provide the best services for everyone regardless of our abilities or inabilities.

I believe that the Americans with Disability Act has done some amazing things for persons with disabilities, but I believe that it should be a living document ever evolving and expanding. I feel that the United States and the Americans with Disability Act is amazing, but we can continue to learn and make things better.

Supporting Others

No Comments

This Sunday I volunteered as the Activities and Entertainment Lead for the 2015 National Multiple Sclerosis Society Aventura Walk. Many people tend to assume that since I am volunteering I have Multiple Sclerosis, but I do not. If you wondering I have a neuromuscular disorder that I was born with. I feel that if we are able to support another we should. A few years ago a friend of mine who worked for the National Multiple Sclerosis Society asked me to help. At the time I did not know anyone who had Multiple Sclerosis, but I was thrilled to help. Today years later I am still helping and now know several people that are affected by Multiple Sclerosis. I am not saying you have to volunteer, give money, or support the National Multiple Sclerosis Society or any cause for that matter. I am just saying that it is very rewarding even if you do not have a direct relationship with the cause.

If you would like to contribute to the National Multiple Sclerosis Society please click here. Please share your volunteer stories in the comments section below.

I’m right here…

No Comments

Yesterday, I attended the DisAbility Expo at Nova Southeastern University. While attending I had an expereince that is not unusual to persons with disabilities, but it still stunned me. I went to a table for a governmental organization offering benefits and assistance programs. I began asking the staff questions about what they offer. A moment later my mother who was with me walked up behind me. The woman assisting me stopped, asked my mother if she was with me, and began telling her the answers to my questions. I have encountered people who are ignorant and think that I am incapable of communicating, but to stop speaking to me and disregard my presence was just rude. On top of that this woman works with persons with disabilities for a living and should know better. I have decided to start offering consulting on things people and businesses can do to help serve clients with disabilities better. If you are interested please feel free to reach out me. Also please share any questions or experiences you have in the comments section.

Flipping Idiot?

1 Comment

Do you think I am a flipping idiot as this young woman puts it for thinking that everything happens for a reason? Please share your thoughts.

Follow

Get every new post delivered to your Inbox

Join other followers:

%d bloggers like this: