Tag Archives: Disability

Loved and Lost

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Last week I met with a physical therapist and a wheelchair technician to start the process of upgrading/replacing my power wheelchair. Improving and/or purchasing power wheelchairs is a long, involved process, and this session was only the first of several meetings I will have to have to get everything ready, but it is a start at least. Since I will end up spending roughly 10 hours a day for the next five years in this wheelchair, it is important and worthwhile to take the time to make sure that every little detail is correct. While I am not a big fan of change, especially with something as crucial to my life as my wheelchair, after having this initial meeting and getting the process of purchasing a new chair started, I found myself filled with a sense of joyful anticipation. Even though I know that it will be at least four months before I see my new wheelchair, the thought of regaining my ability to drive my chair on my own and getting my mobility back is something that I am really looking forward to. This feeling of excitement that came over me caused me to think about how much my freedom to move about means to me, as well as how it brings happiness to my life.

Scott Drotar New Wheelchair
The process of getting a new wheelchair is a long one.

When I was about 5 years old, I got my first power wheelchair, and with it my first taste of the freedom of mobility. For the first time I could move about on my own, whenever and wherever I wanted. I was no longer reliant on others to get where I wanted to go. Having this independence allowed me to explore the world around me and experience life much like any able-bodied person would. I was fortunate enough to have this freedom throughout my life growing up, and this mobility helped me find success and brought a lot of happiness to my life. A couple of years ago though, when my shoulder started to breakdown and my chronic pain increased, I started having some difficulty operating my wheelchair. As my body slowly deteriorated over the next several months, my ability to drive my chair on my own got worse and worse. For a while I was able to drive my wheelchair with assistance from my nurses, but it eventually got to the point a year ago where I could not operate it at all. Going through this process of losing my ability to move around on my own, after having this freedom my entire life, has been an extremely difficult thing for me to deal with.

Losing my ability to drive my wheelchair was far more difficult to cope with than not being able to walk. This may surprise you, but I have never really missed not having the ability to walk. Of course I wish that I had a healthy body and could walk, jump, and do cartwheels like most people, but since I never knew what it is like to walk, I do not know what I am missing. I used to think that I was lucky in this respect, as I thought it was much harder to have something and then have it taken away from you, than to never have it at all. This is why losing my ability to drive my wheelchair has been so difficult for me to cope with, but I feel fine about never having the ability to walk. I spent my entire life only knowing what it is like to be able to move about freely and without assistance, and in an instant this mobility was taken away from me. As someone who has worked extremely hard to build an independent life, losing something as critical to my autonomy as my mobility is like amputating one of my limbs. Due to numerous experiences like this, where my disability took away an important part of my world, I decided long ago that never having the ability to walk was actually a good thing (as opposed to walking for a while and then losing that ability). While it may have made the obstacles and adversity resulting from my disability easier to deal with though, I now see that it also took away all of the amazing things that I would have been able to experience from having a fully functioning body, as well as the happiness it would have brought to my life.

Scott Drotar Loved and Lost
I got my first power wheelchair at a fairly young age, and it gave me freedom for the first time.

Thinking about getting my mobility back, and the emotions that I felt, has made me rethink how I feel about never having the ability to walk. Even though I have never really missed not being able to walk, being confined to a wheelchair has been difficult to deal with at times. Throughout my life, there have been times when I was unable to do something due to my disability and felt like I was missing out on a great experience. Since these types of situations only occur occasionally and vary so much though, you never realize that they all stem from the same cause. It is difficult to see how this one thing has taken away all of these experiences from your life. Just because it is difficult however, does not mean it is impossible. This process of getting my mobility back has illustrated that, if you take the time to look at your life and think about how different it would be if you could not do something, like walk, see, or speak for example, you can more fully appreciate it. This self-reflection also allows you to see the common cause that has kept you from experiencing certain things over the years, which can then help you to change this part of your life and gain the ability to enjoy these moments you missed out on. This will eliminate the negative moments and feelings from your past and add positive experiences to your future, which will bring a whole, new level of happiness to your life.

As the famous quote from Alfred Lord Tennyson goes, “Tis better to have loved and lost, than never to have loved at all.” This idea does not only pertain to love however, as it can also be applied to nearly every aspect of your life. Although I had a much harder time coping with losing my ability to drive my wheelchair than never being able to walk, I would not trade the numerous years I lived being able to operate my chair for anything, even not having to go through the painful process of losing this ability. Having gone through losing this ability once and knowing how painful it is, I am still working to regain my mobility, knowing that in the future it will again be taken away from me. I am willing to put myself through this, because giving it up would mean also trading all of the incredible experiences I will have because of my mobility. The next time you feel a sense of loss and start wishing you had never even begun to enjoy something, think about all of the wonderful experiences you had as a result of it. Ask yourself if you would give up all of that happiness and wisdom to not have to go through the loss you are currently feeling. This will help you put things in perspective and focus on the positive side of things. By doing this and looking at your world through the right lens, you will bring a lot of happiness and fulfilling experiences to your life.

Did this article leave you wondering something? Are you curious about a certain aspect of my life? Do you want to know my favorite color? Submit your question to “Roll Models Mail Call,” and I will do my best to answer it in a post.

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Discrimination

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As you have probably heard on the national news circuit recently, my home state of Indiana has been quite the topic of conversation lately. For those of you who do not know, on March 26th Indiana passed a piece of legislation called Senate Bill 101 (SB 101), better known as the “Religious Freedom Restoration Act.” This bill states that “a governmental entity may not substantially burden a person’s exercise of religion…” This may not sound so bad, but what this document opens the door for is pretty scary.  It implies that if a business owner does not want to provide his company’s services for a certain group of people because of his religious beliefs, that he does not have to. Believe it or not, a business in my tiny hometown of Walkerton, Indiana, which has a population of only 2,500 people, became the first organization to illustrate the dangers of this legislation. “Memories Pizza,” a small pizza place and one of very few restaurants in my little town, was the first business to openly state that they would deny their catering services to same-sex couples. Whether you agree with same-sex relationships or not, we all can agree that discrimination is bad, and that by allowing companies to deny service to any group of people they choose, we are opening the door for discrimination to occur. As I have been trying to stay up to date on this hot button issue that has been plaguing my hometown, I have been thinking a lot about prejudice and discrimination, and how these despicable parts of human behavior can impact your life.

Scott Drotar Memories Pizza
Memories Pizza, a restaurant in my hometown of Walkerton, Indiana, was the first business to show the dangers of the “Religious Freedom Restoration Act.”

Having been born with a severe, physical disability and having to use a power wheelchair my entire life, I have had to face a fair amount of discrimination. Whether it is a group of teenagers deliberately making fun of my disability at the mall or a business inadvertently not being wheelchair accessible, being singled out and treated differently as a result of something I have absolutely no control over is never easy to deal with. Even though throughout my life I have developed a lot of coping skills to help me manage the negative emotions that arise when these prejudicial situations occur, these feelings of discrimination still have an impact on me. It is not the judgment and discrimination from others that I struggle with however, but rather the feelings of self-discrimination that they create. For example, there are times when I will not go out to do something, because I am worried that I may be viewed or treated differently due to my disability. This self-discrimination is far more dangerous than the judgment of others, because it prevents you from even attempting to experience numerous parts of life. In reality, you could have enjoyed many of these situations without any feelings of discrimination arising, but because of your own fear of these potentially painful emotions, you prevent this from ever happening. As I have matured and learned how to better work through these difficult emotions, I have realized that this self-discrimination is actually what makes acts of prejudice so dangerous, as this is what gives these heinous acts their power.

When I was in my first year of college at Notre Dame, I had to write a term paper on civil rights for my required freshman composition class. As a part of this project, I also had to conduct an interview with someone and include the information I gathered in my paper. To satisfy this criterion I decided to interview a quite well respected professor in the African-American studies department, who I had had for another course the previous semester. During this interview he told me a story from his own life that greatly changed the way that I think about discrimination. Back in the 1970s, when he was 18 years old and was about to graduate from high school, he and his best friend, both of whom were black, decided to enjoy their final Summer of youthful freedom and independence by making a Jack Kerouac-like journey across the country. They spent countless hours planning their way, gathering the supplies they would need, and making all of the other necessary preparations to make their way from the “Deep South” to the California coast, and as the school year was drawing to a close they were merely waiting for graduation so that they could embark on this epic, once in a lifetime journey. Unfortunately though, they never made it to California. In fact, they never even made it out of their hometown. Despite the fact that they had spent a lot of their hard earned money preparing for this trip, devoted an enormous amount of time planning their route, and had been looking forward to their “On The Road” adventure for months, they never even left. They were so concerned, being two African-American, young men, about being discriminated against on their trip that they cancelled the whole thing before even starting.

Even though this was the late-1970s, and a lot of progress had been made in terms of racial equality and civil rights, the powerful effects of discrimination were still a major issue. There were still some people and places where outright discrimination would occur (and sadly, I fear there always will be), and the acts of prejudice and ignorance from these few individuals could be quite upsetting, painful, and at times even dangerous. While these prejudiced people were only a small minority of the general public, and the chances of coming into contact with them was extremely low, the power that these individuals had over their victims was quite large. Despite the fact that these two well-spoken, young men probably would have had no problems with discrimination during their cross-country trip, the anxiety and fear of this happening prevented them from even attempting to live out a dream that they had worked so hard to turn into a reality. This self-imposed discrimination is far more powerful than any form of prejudice that someone else could inject into your life, because it takes complete control over your actions. Whether these feelings of self-discrimination are justified or not, they were powerful enough to stop two young men from seeing the country, as well as keep me from experiencing certain parts of life, and this is what makes them so dangerous. The danger lies in the fact that self-discrimination does not need to have anything “real” attached to it in order to control you. Even though most of the potentially prejudicial situations that you avoid would have been discrimination free, you still do not get to enjoy them because your own self-discrimination and fear prevents it. It is this type of discrimination that you have to learn to control, if you want to stop the prejudices of society from having a major impact on your life.

Scott Drotar Civil Rights
While the “Civil Rights Movement” ended decades ago, even today discrimination is still a major issue in our society.

Just as developing the psychological tools necessary to cope with the prejudices of others is a long and emotionally painful process, learning how to deal with your feelings of self-discrimination is also an extremely difficult task. The first step is being able to recognize these feelings when they arise for what they are. You have to be able to see that your fears are stemming from your own feelings of self-discrimination, and not from something out in the world. The next step is the hard part. You have to be able to realize that your fear and anxiety is coming from possible, yet not necessarily probable, outcomes, and then convince yourself that you have no real reason to believe that you will be discriminated against beyond your own nightmarish thoughts. While this is a very difficult thing to do, if you can make yourself truly believe that your worries about being discriminated against are merely the worst possible outcomes and there is no reason to think they will happen, your feelings of insecurity and anxiety will instantly lose all of their power. Since self-discrimination has nothing “real” attached to it, once you convince yourself that your fears are just highly unlikely possibilities rampaging around your head, this once awful sense of dread ceases to have any meaning. You will immediately be free of your self-discrimination, and you will be overcome by a revitalizing sense of freedom that is beyond words. Now, this is not an easy thing to accomplish, but nothing worth doing ever is, and by learning to deal with your feelings of self-discrimination you open yourself up to a whole, new world of opportunities and experiences to enjoy.

Thanks to the enormous amount of vocal opposition to this unfortunate piece of legislation from all over the country, it seems like this most recent act of outright discrimination in my home state will be eliminated soon. Even though it looks like my hometown and the state of Indiana will survive these sad, despicable acts of public prejudice that have been wreaking havoc recently, the effects of this discrimination will be felt by those mistreated for years to come. Having to face these actual acts of discrimination, only makes your feelings of self-discrimination stronger and more difficult to cope with. In order to effectively manage and get beyond these emotions, you have to recognize that these fears, although extremely terrifying, are only figments of your imagination. They are only as powerful as you allow them to be. Remember that only a very small percentage of the people and places you come into contact with are prejudiced, and the vast majority of the situations you experience are wonderful and discrimination free. Take the time to slow down your thinking, regain control of your brain from your emotions, and see your feelings of self-discrimination for the illusions they are. This will allow you to eliminate these nasty notions from your life, and without these self-imposed obstacles in your way, you will be able to fully enjoy the happy, fulfilling life that you deserve.

Did this article leave you wondering something? Are you curious about a certain aspect of my life? Do you want to know my favorite color? Submit your question to “Roll Models Mail Call,” and I will do my best to answer it in a post.

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Roadtrippin’ Through My Mind

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Throughout my entire life, since flying is extremely difficult for people who require the use of a power wheelchair, if I wanted to take a trip or go vacation somewhere, I had to drive. Thankfully, my family has always been able to afford a wheelchair accessible vehicle that allowed us to travel like any other family of five despite my mobility limitations. To take full advantage of this mobility and freedom, during my childhood my siblings, parents, and I went on numerous family road trips all over the United States, and I have continued this custom now that I am an adult living on my own. Having a conversion van that gave me the ability to travel about the country, not only created the opportunity for me to see some amazing things, but it also helped me make some priceless memories with my family on the open road. In appreciation of this privilege I have had to see the world as a physically disabled person, I have decided to share with you five of my most memorable road trip moments, the number of miles driven on these excursions, and what these miles have meant to me.

Dallas — This was my first road trip without my parents. When I was 23 and in my first year of graduate school at the University of Kansas, my brother, sister, and I decided to take a “siblings vacation.” After deliberating for several weeks over where we should go, we decided on Dallas. My brother, who lived with me at the time, and I drove down while my sister flew in from New York, and we stayed right in the middle of downtown “Big D.” We ate great Tex-Mex and Texas style barbecue, went to the aquarium (manatees!), and visited the JFK Museum. It was a wonderful, fun experience with my siblings, but the most vivid memory from this excursion is making the drive home in a blizzard with my brother, and laughing nervously with him as we just hoped to get home. (Roundtrip: 1,038 Miles)

Scott Drotar Niagara Falls
That is a lot of water.

Niagara Falls — This was the first stop on our family vacation when I was 12 (Toronto was the second stop), and it was the first time that I was in awe of something in nature. The only way to truly appreciate the incredible beauty and raw power of “Mother Nature” is to see something like Niagara Falls in person. That is a ton of water coming over that cliff. What made this trip so special for me was that it was extremely wheelchair friendly, especially for a national park. I could get everywhere and see everything without any trouble, and even the famous “Maiden of the Mist” boat tour was totally handicap accessible (although I did need my rain gear). (Roundtrip: 1,032 Miles)

Galveston — This was my first solo vacation, which I made when I was 25. One of the things on my “Bucket List” was to take a trip on my own with just my nurse. After several months of research and planning, I came to realize that a cruise was the best way for me to go about this. It was a controlled environment with its own medical team (just in case), did not require any travel once you got on the boat (simplifying the logistics), and would give me the vacation experience I was looking for. So, I saved some money, talked one of my nurses into a free vacation (not exactly difficult), and we road tripped down to the port of Galveston to go on a week long Caribbean cruise. It was an amazing seven days, and I got to see and do some incredible things, but the most memorable moment was on the drive home when the fuel pump in my van went out in the middle of nowhere. We ended up being stuck in a small hotel room in Texas for two days, but my wheelchair accessible wagon held up after being fixed, and got us safely back to Kansas with a great story to tell. (Roundtrip: 1,614 Miles)

Disneyworld — This is the earliest family vacation that I can really remember. I was about 6 years old, and my family drove the entire 19 hours from Northern Indiana to Florida. I can still remember getting to meet Mickey Mouse for the first time and getting his autograph. As great as the theme park was though, my favorite memory from this trip is waking up as my dad was driving in the middle of the night and staying up with him while the rest of my family slept. That alone time with my dad on the open road was a big deal as a young boy, and remembering that time always makes me smile. (Roundtrip: 2,228 Miles)

Cincinnati — The Summer before I turned 14, my brother and sister both got to attend week long, sleep away camps, which is something that I could not do due to my disability. My parents decided that since my siblings each got a little vacation somewhere, that I should too, so they took me on a trip with just the two of them to Cincinnati for a few days. We window shopped, saw Ken Griffey Jr. play at Cinergy Field, and I got my parents all to myself. As much as I love my brother and sister and the trips we have taken as a family, this road trip will always be special since it was just my parents and me. (Roundtrip: 478 Miles)

Scott Drotar Ocean
Here I am experiencing the beauty of the ocean for the first time.

Every one of these road trips is special in its own way, and they all impacted my life and who I am today. We do not often think about how much our ability to travel impacts our life, but your experiences with the world around you plays a large part in shaping who you are. If not for the freedom to get out into the world (like my conversion van gave me), chances are you would be a very different person. Think about all of the cherished memories you have from your own family vacations and road trips. The moments fighting with siblings in the cramped back seat, and the first time you saw the ocean, breathed in that crisp, sea air, and just gazed out at that endless blue water. These memories are not only sentimental and emotionally special, but they also helped you grow and develop into the incredible person you are. All of the miles you travelled and places you saw had an influence on your life. They helped you bond with your family, learn about the world around you, and taught you many valuable life lessons that you have carried with you ever since. Be sure to acknowledge the effects these moments with your loved ones on the open road made, and also try to continue these fun-filled adventures with your own family. Most of all, remember that your mobility and ability to travel freely is a great privilege, and that there are people who do not have the opportunity to explore the amazing world we live in. Do not take this freedom for granted, and appreciate all of the incredible gifts these trips have given you.

Total Miles Driven: 6,390

Flat Tires Fixed: 3

Gallons of Gas Used: 391

Impact on My Life: Priceless

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A Message From Your Medicine Cabinet (Part 2)

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The American Recall Center, in celebration of “Patient Safety Awareness Week,” is holding a “Medicine Cabinet Clean-Out Challenge.” For this event, they have asked a few “influential bloggers” (their words, not mine) to write an article about responsibly using your medications and sharing some personal experiences. They asked yours truly to participate, and I was more than happy to oblige. I know it is coming a couple days late, but today’s article is the piece I wrote for their “challenge.” I hope you enjoy it, and that it makes you think about your own pharmaceutical use. 

In the first part of this article, you started learning about how important it is to be a responsible consumer when it comes to pharmaceuticals. We are quite fortunate to have so many incredible drugs right at our fingertips, but these life-improving medications can quickly become dangerous, life-threatening poisons if not used in the proper way. When we left off, we had covered the first aspect of being a responsible consumer by discussing how to properly store your medications. You also began reading about the second component of proper drug use, taking your medicines correctly. Due to the powerful, and potentially dangerous, effects that your meds can have on you, it is vital that you take all of your medications properly, because mistakes can be extremely harmful, and sometimes, fatal. This is something that I had to experience firsthand several years ago, and in an effort to drive this point home, I am going to share my story with you today. I will then move on to the final aspect of responsible pharmaceutical use, properly disposing of your medications.

Scott Drotar Patient Safety Awareness Week
The National Patient Safety Foundation celebrates “Patient Safety Awareness Week” every year by trying to educate people on the safe use of medications.

My second experience with taking my medications incorrectly was a much more serious situation than my first, which you read about in part one, and it is the main reason I am so careful with my meds today. About four years ago, my chronic pain got much worse, and I began working with my doctor to try to find a combination of painkillers that would better control my discomfort. Over several weeks and after trying multiple “cocktails” of pain meds, we eventually found a three drug combination that worked well. After a couple weeks of being on this mixture of painkillers, my pain was under control, but some strange things started happening to me. I first started seeing and hearing things that were not there. Initially, it was barely noticeable, but over time these imaginary sights and sounds turned into full fledged hallucinations. Over time it got so bad that I could not always tell what was real and what was not, and I thought I was going crazy. I was obviously terrified by this, and after speaking with my doctor, I thankfully found out that I was not losing my mind, but I was damaging it. It turns out that two of the painkillers he had put me on could have dangerous interactions that cause seizures in certain parts of the brain. In some cases, these seizures can cause audiovisual hallucinations. While I feel fortunate that no permanent damage was done and everything went back to normal after I stopped taking one of the drugs, this was a very dangerous drug interaction that could have had much more dire consequences. Even though my doctor and my pharmacist should have caught this potentially life threatening drug interaction before it ever happened, in the end it is my life and well-being that is at risk, so I am responsible for being knowledgeable about the medications I am taking. And once again, if I had merely taken a few minutes to read about my medications before taking them, I could have avoided this entire situation. I hope this story helps you understand how important it is to be a knowledgeable consumer when it comes to taking your medications, and that it is your responsibility to make sure that you are taking your drugs in a proper and safe manner.

Disposing of Your Medications

In addition to containing the instructions for safe and proper use of your medications, the paperwork that accompanies every medicine you obtain also has pertinent information about how to dispose of your drugs correctly, which is the third aspect of being a responsible pharmaceutical consumer. While we do not often consider how we should dispose of our unused meds as an important part of using our medications, this is a critical aspect of responsible drug use. One of the main reasons we do not think about the process is that you usually take the entire container before drugs expire. Every now and then however, you will find that a drug you rarely take has reached its expiration date, or you will try a prescription medicine that does not work and switch to a different drug before finishing the first, and in these types of situations it is important to make sure that you discard these expired and unneeded medicines in the proper way. Depending on the type of medication being discarded and where you live, the guidelines for how to best dispose of various drugs can differ, so it is crucial to familiarize yourself with the specific process in your area. While the rules do differ by region to some extent though, there are some general steps that you can follow to get rid of your unneeded drugs in a responsible and safe way.

Scott Drotar Medication Disposal
Proper medication disposal is an often overlooked aspect of responsible drug use, but it is a critical part of using your medications correctly.

The first step to proper drug disposal is to be aware of your medications’ expiration dates, which can be found on the container’s label and the accompanying paperwork with the drug. Just like food, medicine does go bad after a certain length of time. The shelf life is different for every drug, but most meds that are taken orally and are not refrigerated last at least six months, if not longer. As I said before, since most meds have such a long lifespan, you will usually finish the entire bottle before they go bad, but occasionally you will have drugs that last beyond their expiration date. Once again, just like food that has reached its “use by” date, if a medicine has expired, it should always be discarded. You should never take expired medications, as they often have lost their effectiveness and could be dangerous for consumption. It is always best to properly dispose of the expired drug and get a new, fresh supply. This will not only ensure that you do not take a potentially harmful expired medication, but it will also guarantee that the drugs you take will have the potency and effect that you expect.

Once you have identified that one of your drugs has expired or should otherwise be discarded, the next step is to properly dispose of the medicine. Since depending on where you live the guidelines can differ, before you discard any meds the first thing you should do is talk to your pharmacist or contact your city’s trash service office to learn about any local guidelines for proper drug disposal. For example, I used to live in a city that had a “drug take-back program” that would allow you to bring in any unwanted medication to a certain, pre-designated location, and they would take the drugs and properly dispose of them for you, no questions asked. Once you are aware of any local regulations, the next step is to consult the paperwork that is with the medicine. If there are any specific instructions for discarding the drug, like flushing it down the toilet (never do this unless specifically stated), it will be clearly identified and explained in this documentation. If there are no specific instructions listed, you can safely throw away the unneeded meds in the following manner. Remove the medications from their original containers and put them in a resealable plastic bag. Next, add a large amount of any unappealing, inedible substance (dish soap, kitty litter, coffee grounds, etc.) to the bag and mix it with the unwanted medications. This will make your discarded drugs undesirable to animals and unusable to people who may be dumpster diving. You can then dispose of this sealed bag in any trash can. Following these general rules will ensure that you are doing your part to properly dispose of your unwanted medications, and it will complete the process of being a responsible pharmaceutical consumer.

Scott Drotar Expired Medications
Medicine, just like food, has a shelf life, and it is important to properly dispose of your expired medications.

I will admit, for me personally, this is the part of being a responsible medication consumer that I struggle with most. I do not like wasting anything, whether it be time, food, or medicine. On top of that, I am a bit of a pack rat, and I can always come up with some outlandish, hypothetical reason to hang on to something. These personality traits often make it difficult for me to get myself to throw away unused prescription drugs that I stop taking before I finish them. I always think to myself, “What if I end up trying this medication again in a few months at a higher dose? Why waste such expensive medicine?” Even though I know I should discard the old meds, these thoughts have caused me on occasion to save my unneeded prescription drugs long after I stopped taking them. The funny thing is that I have never had a situation arise where I actually wound up using any medications I have saved “just in case,” and I always end up throwing these drugs away a year later anyway, when they finally expire. While this may not be the best way to go about things, I do always follow the proper guidelines for disposing of my meds, even if I do it a year late. I am a work in progress, I guess.

Final Thoughts

You are now fully equipped to become a responsible pharmaceutical user. You have learned how to correctly store your medications, and you are more aware of the dangers associated with taking your medicines in an improper way. You also now know how to dispose of your expired and unneeded drugs in a safe and responsible manner. Following the information contained within these three aspects of responsible medication use will allow you to take advantage of the huge health benefits that modern pharmaceuticals can provide, while also ensuring that you are doing so in a safe way. Remember that it is up to you, as the person using these medications, to be knowledgeable about your meds and how to properly use them. Take the time to read the documentation that accompanies every drug you buy, because spending a few minutes reading these pamphlets could be the difference between life and death. My final piece of advice is to use common sense and trust your instincts. If you ever get even a tiny feeling that you may be using a medicine improperly, do not take it and consult your pharmacist or physician. If you do that, and do your best to follow the guidelines described above, you will not only be a responsible consumer of pharmaceuticals, but you will also have a much happier, healthier life.

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A Message From Your Medicine Cabinet (Part 1)

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The American Recall Center, in celebration of “Patient Safety Awareness Week,” is holding a “Medicine Cabinet Clean-Out Challenge.” For this event, they have asked a few “influential bloggers” (their words, not mine) to write an article about responsibly using your medications and sharing some personal experiences. They asked yours truly to participate, and I was more than happy to oblige. I know it is coming a couple days late, but today’s article is the piece I wrote for their “challenge.” I hope you enjoy it, and that it makes you think about your own pharmaceutical use. 

Few areas of research have made as much progress or shown more growth in recent history than the field of medicine. Just in my brief lifetime there have been numerous, major medical advancements that have resulted in longer lifespans, as well as a better quality of life, for people with all sorts of diseases and disorders. One of the areas of medicine that has developed and changed the most over this time is the pharmaceutical industry. We now have instant, unlimited access to hundreds of over the counter medications, and there are thousands more available by prescription, that would have been considered witchcraft just a decade ago. While these powerful drugs now at our disposal can be extremely helpful and alleviate a lot of pain and suffering, they can also be quite dangerous. If not used correctly, these capsules and tablets can quickly go from life saving medications to life threatening poisons. It is now our responsibility, as individuals with infinite access to these drugs, to make sure that we are taking the proper care when dealing with pharmaceuticals. As Franklin D. Roosevelt said, “Great power involves great responsibility.” In celebration of “Patient Safety Awareness Week,” I am going to share with you my own methods for making sure I am a responsible consumer in regards to my medications.

Scott Drotar American Recall Center
The American Recall Center is celebrating “Patient Safety Awareness Week” by holding a “Medicine Cabinet Clean-Out Challenge.”

Since I was born with the genetic, neuromuscular disease, spinal muscular atrophy (SMA), I have been in and out of hospitals, seen more doctors, and dealt with the medical field more, than most people twice my age. I have never walked, require nursing care 24 hours a day, and have the lung volume of a toddler. Although there is no cure or treatment for SMA, there are lots of drugs that can treat the symptoms that my disability causes and improve my life dramatically. Thanks to modern pharmaceuticals, I am able to open up my bronchial tubes when my breathing gets weak and manage pain that on a good day is almost bearable. There is not a doubt in my mind that without the various drugs I take on a daily basis, I would not be able to lead the happy, fulfilling life that I do. Part of using these medications to better my life though, is making sure that I am handling them in the proper way, both to ensure my safety and the safety of others. Even though I have a team of nurses who oversee my medical care, which includes my medications, I still believe it is my responsibility to make sure I am using my meds correctly. When I think about how I go about this process of being a responsible medication consumer, three things come to mind. These three areas that come up are storing my drugs properly, taking them correctly, and disposing of them in a safe way.

Storing Your Medications

The first step to proper pharmaceutical consumption is making sure you are storing your medicine in the proper manner. For most drugs in most homes, this means putting them in your “medicine cabinet,” which should be a cool, dark place out of the reach of children. While this is fine for the vast majority of over the counter medications, and even most prescription drugs, there are plenty of situations where there is a lot more to it. In my case for example, I have to store my assortment of medications in three separate areas, based on their type and strength. First, I have my typical “medicine cabinet” that houses my over the counter medications, breathing treatments, and other drugs that are not narcotics or controlled substances. Second, I have some meds that have to be refrigerated, so obviously these go in my fridge. In order to keep them safely separate from food, I put them behind the butter tray in the door of my refrigerator. Third, I have a combination safe hidden in my home that holds the majority of my narcotics and other controlled substances, and I only take out enough of each medication for a few days. The few pills I take out are kept out where I can see them in clearly marked bottles. I keep a watchful eye on this at all times, and only my nursing staff and I know the combination to my safe. With my narcotics, I also keep a running count of any drugs I take or get from the pharmacy, so that I can always go count my meds in the event that I thought some were missing.

Scott Drotar Medicine Cabinet
Properly storing your medications is the first step to being a responsible pharmaceutical consumer.

In addition to selecting the best location for housing your medications, experience has taught me a couple of other best practices for storing your meds. One is to always, and I mean always, store your drugs in the container they come in. Whether they are over the counter or prescription, all medicine should be stored in the labeled container you got it in. I know it may be convenient to put a bunch of different meds you commonly take in an unmarked bottle (Altoids tin, old contacts case, empty lip balm container,…) and throw it in your purse or backpack, but it can also be quite dangerous. What if you mix up the diphenhydramine and the ibuprofen, take a couple of sleeping pills instead of some painkillers, and get behind the wheel of your car? At best it is dangerous and a potential DUI, and at worst it is a potentially fatal mistake. Additionally, carrying certain prescription drugs, like narcotics and other drugs used recreationally, in any container other than the bottle you got from the pharmacy is illegal in most states. By simply keeping your drugs in the correct, labeled bottle, you can eliminate issues like this from ever happening.

Another important aspect of proper medication storage that can eliminate life-threatening errors, involves not the drugs themselves, but the paperwork that comes with them. Every time you get a prescription, you get the medication your doctor ordered and a small amount of paperwork. These pamphlets that most people quickly discard without even a glance, can contain vital information for the proper handling of the medication. Information like what foods limit the drug’s effectiveness and what other medications can have dangerous interactions with it, may be fresh in your mind today, but three months from now it will not be. Without the accompanying paperwork, you will have no way of knowing all of this important information, which could result in dire consequences. For this reason, it is always a good idea to keep the paperwork that comes with your medications in the same place as the drugs themselves, or at the very least in a single, well-designated place, so that you will always have easy access to it when necessary.

Taking Your Medications

Having access to the documentation that comes with every medicine you pick up is a critical part of safely and effectively taking your meds, which is the second important aspect of being a responsible pharmaceutical consumer. Due to the powerful effects that medications can have on your body, it is vital that you are taking your drugs as they were designed. Even everyday substances, like Ibuprofen and acetaminophen, can do major physical harm if taken incorrectly, which is why properly taking your drugs is so critical. While safe drug use may start with your prescribing physician and the pharmacist, they are just the first line of defense. The person most responsible for ensuring that you take your medicines correctly is you. Since it is your life and well-being that is on the line, it is up to you to be a smart consumer when it comes to your medications. I go through a three step process to educate myself and make certain that I am taking my drugs in the right way, and if you follow this method you will know that you are safely taking your medications. First, have your doctors explain the drugs they prescribe to you and how you should take them. Do not be afraid to ask questions either, because that is the reason they are there. Next, ask your pharmacist about any pertinent information or dangers associated with your medications. Last, read the literature that comes with any new drugs you begin taking. If you do all three of these steps, and they all give you the same information, you will know you are doing things correctly. More importantly, if they do not agree, you will know that something is off, and you will be able to take action to avoid any possible problems.

Scott Drotar Medication Labels
Taking the time to read medication labels and the paperwork that comes with your drugs is the best way to become knowledgeable about your medications.

While I now know to double and triple check the information on my prescriptions before taking them, I did not come by this knowledge by chance. I had to experience the negative, and potentially life-threatening, effects of improperly taking your medications before obtaining this insight. My first experience with improper drug use occurred when I was in graduate school. I had just been prescribed a very potent painkiller by my doctor, and this drug was taken by placing an adhesive patch on your skin (like a nicotine patch). Both my doctor and pharmacist said to simply place a patch on my abdomen, make sure it was securely adhered to my skin, and replace it every two days, and I followed these instructions to the letter. I knew it would take a while for this drug to build up in my system, but with how strong this medication was, I should have felt at least some relief from my chronic pain within a day or two. Even after a week of using it however, I was still in just as much discomfort as I was without the patch. My physician upped my dosage, but still, I felt no relief. As I was tired of being in constant agony from feeling no effect from this potent drug, I decided to do some research on this medication. After doing some Google searches and reading about this drug and how it works, I was able to figure out why this medicine was having no impact on my pain. This particular patch gets into your bloodstream by being absorbed by fats under your skin. I only weigh 60 pounds, and pretty much all of that weight is organs, bones, and skin. Since I did not have enough fat, I could not absorb the drug, and that is why it was so ineffective in controlling my pain. As soon as I talked to my doctor and switched to an oral version of this medication, I finally got the relief I was hoping for from the beginning. It turns out, that if I had just opened up the literature that came with every box of patches and read it, I would have known this information from the start and avoided weeks of suffering.

This story illustrates the importance of being well-informed about your medications. While doctors and pharmacists are extremely knowledgeable and helpful in giving you information about your drugs, they are human, and they do make mistakes. Even though my story may have had a happy ending, this med error could have just as easily done major, and possibly life-threatening, harm to my body. This life and death nature of using medications properly is something that I have experienced first hand. I will share this story with you, and hopefully show you how critical correctly taking your medications can be, in the second part of this article.

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Di$abl€d (Part 3): Medicaid I

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Before I get into the meat of today’s post, I want to say that I am a proud American, and I feel extremely fortunate that I live in the United States. I am thankful that I was born in a country where my physical limitations do not automatically make me an outcast of society. I am also grateful that our government has implemented programs, such as Medicaid, Social Security and Disability, and Vocational Rehabilitation Services, to help individuals with disabilities overcome the obstacles they face. That being said, this does not mean that I necessarily agree with the way these programs have been implemented or managed, and it definitely does not mean that I agree with how the American government has treated the disabled community in general. Despite the fact that I may disagree with some of the decisions that have been made by the government in regards to disability rights and such, I still greatly appreciate everything that federal assistance programs have done for me. I know that without the assistance of these programs I would have never been able to achieve everything that I have or live the happy, successful life that I do. So if I come across as angry or overly harsh throughout this series, it is not that I am unappreciative or un-American, I am merely exercising my right to free speech/press and trying to create positive change for the disabled community.

All of the numbers and information I will be presenting in this series are based upon my own life and research. Private insurance and Medicaid benefits can vary greatly from plan to plan and state to state, respectively. While my experience may not be universal, it will still give you a good general idea of how these programs work in the real world.

At this point in the “Di$abled” series, you are well aware of the huge financial burden that the medical expenses associated with having a physical disability can be. You also learned in the previous entry about the large amount of relief that private health insurance coverage can provide for the disabled community, but that there are often insurmountable obstacles that either eliminate this source of financial assistance for disabled individuals or at least limit its effectiveness. For those people who are unable to obtain private insurance and/or require additional financial help with their medical bills above and beyond their insurance coverage, the federal government has created multiple programs to assist physically disabled individuals with their extra expenses. The most well known and widely used of these medical assistance programs is Medicaid. This program is available to any United States citizen who is determined to be physically disabled and not have the financial means to afford all of their medical needs. While this sounds great in theory, and this program does do a lot of good for the disabled community, in practice you will see that there are definitely some problems within the Medicaid system that make this program far from perfect.

Scott Drotar Medicaid Eligibility
You must be deemed both medically and financially eligible in order to receive Medicaid benefits.

Medicaid was created as a part of the Social Security Amendments of 1965 signed into effect by President Lyndon Johnson. According to the HIAA, Medicaid is a “government insurance program for persons of all ages whose income and resources are insufficient to pay for health care.” It is obviously much more complicated than this, and there are a few other eligibility requirements, but in a general sense this is what the program was designed to accomplish. It provides medical insurance coverage for people who cannot afford their medical expenses, at little to no cost for the recipient. A unique aspect of this assistance program is that, although it is federally funded, each state is given the autonomy to administer their Medicaid funds however they deem best. This has the effect of making the Medicaid financial eligibility criteria, benefits, and physical disability determination process different from state to state. While this flexibility does have the positive result of allowing each state to make the most effective use of its funds, as you will see, the huge differences between states can be a large obstacle for many people who require these services. Even though every state is different to some degree, you will still gain a good understanding of the pros and cons of the Medicaid system by reading about my personal experiences using these services. If you would like to find more specific information for your state after hearing my story, you can visit the official Medicaid website at www.medicaid.gov.

When I think about the Medicaid program as a physically disabled person trying to lead a happy, successful life, there are two main aspects of these services that should be discussed. These two key ideas that need to be addressed are the eligibility requirements to receive services and the benefits that are provided. In terms of eligibility, there are two types of criteria that must be met in order for you to be approved for Medicaid assistance. You have to be deemed both medically and financially eligible before you can receive services. This is a lengthy process that involves obtaining numerous medical and financial documents, as well as filling out a more than 20 page application booklet. Once you complete this mind-numbing circus of bureaucracy and are finally approved for this program, you then have to become familiar with what benefits your state provides and how to use them to cover your medical expenses. This involves both understanding what your benefits are, and also finding health care providers that will accept Medicaid as payment.

Scott Drotar Medicaid Application
The Medicaid application booklet is a 20 plus page document that you have to complete in order to be approved for services.

In order to receive Medicaid services, you have to meet certain medical requirements. Medicaid is designed for people with minimal financial assets (the financial eligibility criterion that is discussed next) who fall into any of the following categories: children, pregnant women, parents of eligible children, people with disabilities, and the elderly. In most cases, the medical requirements for eligibility are very similar to the requirements for receiving Social Security benefits (SSI), and by being approved for SSI, you are frequently also automatically deemed medically eligible for Medicaid. Basically, you have to prove that you are physically unable to work enough to support yourself financially and cover your medical expenses. This process usually involves having your doctors write letters and fill out forms detailing the severity and limitations of your disability, which are then mailed to your state’s Medicaid office where it is reviewed. Making this long and time consuming process even more complex is the fact that, on top of each state having its own set of rules, there are usually several different medical assistance programs within the Medicaid system for each state. Every subgroup has its own set of eligibility criteria and benefits, and depending on your specific diagnosis and financial situation, you will need to apply for one of these plans. This means in addition to getting approved as medically eligible for Medicaid services in general, you also need to understand the separate benefits programs for your state and apply for the correct one. For example, in Kansas there are separate plans and benefits for developmentally disabled children, called Home and Community Based Services (HCBS), and for adults who are severely disabled but can still work, the Working Healthy Program. Even though I do qualify for Medicaid benefits, if I were to apply for any program other than the Working Healthy Program, due to my specific set of circumstances I would be denied services.

Once you have taken the time to educate yourself on your state’s Medicaid programs, obtained the necessary medical documentation from your doctors describing your disability, and have filled out the medical portion of the Medicaid application booklet describing your physical limitations, you are halfway to reaching your goal of being approved for services. Now that you have met the medical criteria, you must also show that you meet the financial eligibility requirements before you can receive your benefits. This involves filling out several more pages of questions in the Medicaid application booklet, as well as gathering various financial documents from your employer and your bank. In Kansas, you are required to send in 90 days of bank statements for all of your accounts, three months worth of pay stubs, and documentation of any other income (like home business income, trusts, real estate, etc.) when you apply for benefits. Since Medicaid is designed to give assistance only to people with “low financial assets,” you are trying to prove that your financial situation is insufficient to cover your medical expenses resulting from your disability. While every state is different in terms of what “low assets” means, in my experience it basically means that you are living month to month paying your bills, but you have no extra money beyond that. You have to have next to no savings or emergency money in the bank (typically the limit is $2,000 in liquid assets), and you must make just enough money to survive, in order to qualify for services. A more specific definition that several states have adopted is that you are only financially eligible for Medicaid if your income is less than 133% of the poverty line (roughly $30,000 for a family of four). While it does make sense to only provide these free, medical benefits to people who truly need it, the strict financial eligibility requirements that must be met to receive services can put some disabled individuals in a very difficult situation.

Scott Drotar Working Healthy
The Working Healthy Program is designed for people who are disabled, but still would like to work without losing their Medicaid benefits.

For many disabled people, these strict financial requirements you must meet in order to receive Medicaid benefits are a major, and possibly insurmountable, obstacle that prevent them from getting services. In my case for example, I am severely, physically disabled and could never afford all of my medical expenses, but I can still work and earn money despite my limitations. In some states, the financial eligibility criteria would force me, and others like me, to choose between working, making a living, and contributing to society without any Medicaid benefits and not working, sitting at home, and living on disability checks with benefits. Basically, either way I end up broke and sitting at home living off the government waiting to die. You surely agree that neither of these options is especially appealing, and thankfully there are some states, like Kansas, that have started Medicaid programs to give people like myself a third choice. I am able to work, actually earn and save some money (I cannot save a lot), and still receive Medicaid services thanks to a program called Working Healthy. Under the Working Healthy Program, if you are medically eligible for benefits, but are still able to work at least part time, you can still receive benefits, so long as you do not accrue too much wealth ($15,000 in liquid assets and roughly $35,000 earned a year in Kansas). This is a wonderful program as it is a winning situation for everyone involved. I get to lead a happy, fulfilling life as a functioning member of society without having to give up my Medicaid benefits, my employer gets a good employee who helps his business, I pay taxes on the money I earn that helps the government, and the government can then put more money into Medicaid funding. Everyone who is involved gains something through this program, and this is obvious by the number of other states that have adopted similar options. I know Kansas was the first state to start this type of coverage roughly a decade ago, and now more than 13 states have developed similar programs.

We are finally through our “brief, simple” discussion of what Medicaid is and the eligibility criteria for receiving these benefits. As you can already see from how much information you have just covered, this is an extremely complicated topic. My head is practically spinning from covering all of this federal bureaucracy, so I am sure that you are mentally saturated as well. So that we can both give our full attention to the rest of the information on Medicaid still left to discuss, I am going to stop here and finish our conversation in the next post in this series. In fact, this whole notion of the complex nature of these medical assistance programs is actually a topic that will be discussed in that article, when we cover more obstacles to receiving these services. We will not only discuss the obstacles, but also the benefits that the Medicaid program can provide the disabled community to improve their lives.

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“We Have The Technology.”

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Scott Drotar Microchip
I have always had a fascination and curiosity for technology and anything with a microchip.

My entire life I have been a huge uber-geek when it comes to computers and technology. Ever since I was 4 years old and got my very first Apple II computer, courtesy of the Make A Wish Foundation, I have been hooked. Not only have I always been interested in figuring out how various gadgets work and learning to program in as many languages as I can, but I also realized at a fairly young age that modern technology had something special to offer me due to my disability. It became obvious to me early on in my time tinkering with computers, and later on the internet, that in the virtual world of microprocessors and internet protocols my physical limitations were no longer a disadvantage that I had to overcome. For the first time in my life I was on a level playing field with the people around me, able-bodied and disabled people alike. I realized that learning as much as I could about programming, operating systems, and computers in general that I would be able to create an environment where I could operate on the same level as everyone else. Not only does technology level the playing field for me, but it also provides me with the tools to prevent my disability from limiting my world as my body gets weaker with time, which is something that I was reminded of during last year’s Holiday Season.

I have discussed in some of my earlier articles about how travelling long distances is difficult at best when you have a severe, physical disability, even if you are fortunate enough to have your own wheelchair accessible vehicle. One of the effects of not being able to make long trips is that I cannot go to visit my friends and family who live in other parts of the country. Whether it be visiting my old college roommate, attending my 10 year high school reunion, or going to one of my best friend’s wedding, unless it is less than a few hours drive from my apartment, I am probably not going to be able to make it. This could definitely make it difficult for me to maintain relationships and have a fulfilling social life, but thanks to the recent technology boom and my fascination with anything containing a microchip however, this is fortunately not the case. By taking advantage of some of the new features available on our phones, tablets, and the countless other “big kid toys” in our lives, I have been able to find alternative ways to keep my social and professional worlds from being restricted to the greater Kansas City area and maintain a very fulfilling social life.

While I have been aware of my use of technology in expanding my world for a long time now, during the Holidays last year this is something that was really brought to my attention. The Holidays are a time to be with friends and family, and since my loved ones are scattered all across the country, not being able to travel very far makes it difficult for me to share this festive time with some of the the most important people in my life, at least in person. Thanks to several different technological features that are now almost commonplace on most technological devices, I was able to share my Christmas celebration with all of the people who make my life so great. Touchscreen displays for example, which are pretty much a standard feature now, have helped those of us with weak muscles more use of technology, as they require far less pressure and range of motion than previous control options. Live video streaming, available free through programs like Skype and Google Hangout, allow disabled individuals who cannot travel the ability to still be present at any event nearly anywhere in the world, at least in a virtual sense. I was able to still share the Holidays with several of my old dorm brothers thanks to video chatting, despite the fact that they live hundreds of miles away. Even the recent advancement that allows anyone to purchase nearly anything without ever leaving their home has been a major improvement for people with disabilities. I was able to have wonderful gifts for my family, wrapped beautifully and waiting under my Christmas tree, without having to put my body through the physical toll of going out in the cold, subjecting myself to millions of new germs, and risking spending my Christmas in a hospital bed, thanks to the amazing service of websites like Amazon and Overstock.com.

Scott Drotar Social Media
The social media boom has helped open up the world for many physically disabled individuals.

I am so thankful that the various technology companies have inadvertently improved the lives of thousands of disabled people over the last several years. As they have worked to develop more and more new features before their competitors, they have also been giving new levels of freedom and independence to people with physical limitations. Although these companies will probably never realize it, and it will definitely not show up in their stock values or quarterly reports, organizations like Apple, Samsung, and Google have allowed people with severe, physical disabilities achieve goals and experience things that would have never been possible without the developments in technology that they have produced. These advances, which are so often thought of in terms of dollars and cents, to people like me are so much more than that. Being able to chat with one of my best friends about his new job and getting to be a part of my loved one’s Christmas festivities without ever leaving my home are things that are so special that I could never put a dollar value on them. These features have given me a happy, fulfilling life that I am so proud of, and that is something that is priceless.

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Di$abl€d (Part 2): Private Insurance

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Before I get into the meat of today’s post, I want to say that I am a proud American, and I feel extremely fortunate that I live in the United States. I am thankful that I was born in a country where my physical limitations do not automatically make me an outcast of society. I am also grateful that our government has implemented programs, such as Medicaid, Social Security and Disability, and Vocational Rehabilitation Services, to help individuals with disabilities overcome the obstacles they face. That being said, this does not mean that I necessarily agree with the way these programs have been implemented or managed, and it definitely does not mean that I agree with how the American government has treated the disabled community in general. Despite the fact that I may disagree with some of the decisions that have been made by the government in regards to disability rights and such, I still greatly appreciate everything that federal assistance programs have done for me. I know that without the assistance of these programs I would have never been able to achieve everything that I have or live the happy, successful life that I do. So if I come across as angry or overly harsh throughout this series, it is not that I am unappreciative or un-American, I am merely exercising my right to free speech/press and trying to create positive change for the disabled community.

All of the numbers and information I will be presenting in this series are based upon my own life and research. Private insurance and Medicaid benefits can vary greatly from plan to plan and state to state, respectively. While my experience may not be universal, it will still give you a good general idea of how these programs work in the real world.

Scott Drotar Private Insurance
Private health insurance is the best type of medical coverage in most situations, and it can greatly improve the lives of disabled individuals.

In the first entry in this series, you learned what an enormous obstacle the medical expenses that arise from being disabled can be. The large costs of many medical necessities, like wheelchair accessible transportation, attendant care, and prescription medications, put a large financial burden on disabled individuals, as well as their families. The extra costs that the disabled community endures due to their physical limitations are frequently more than they can reasonably afford, and this often leads to individuals receiving substandard care and having a lower quality of life. Fortunately, there are both private sector and federal assistance programs, such as private insurance and Medicaid, that are designed to help alleviate some of this financial stress. While these organizations do not completely eliminate the strain of these expenses, and there are often still large out of pocket costs even with the assistance of these groups, they do give many disabled individuals the opportunity to live fulfilling lives and become functioning members of society. In the next few posts in the “Di$abl€d” series, we will be discussing the pros and cons of some of these assistance programs. This begins with today’s article about private insurance programs.

Both of my parents being public school teachers, which made them state employees, meant two things for my family financially. The first was that they would be grossly underpaid, as all educators are, and the second was that they would have great benefits. One of these benefits was access to high quality health insurance coverage at minimal cost. For as long as my folks have been employees of the John Glenn School Corporation, my entire family has had great insurance. After we paid the monthly premium and my yearly deductible, 80% of all of my medical expenses are covered by my private insurance. While not all of my medical needs were always approved and 20% is still a sizeable amount of out of pocket expense sometimes (like after 15 days in the ICU), having private health insurance of this caliber gave my family enough financial relief to get me all of the medical care I needed, while also allowing us to maintain a middle-class lifestyle. To give you an idea as to the enormous amount of money my private insurance has paid for my medical needs, only taking into account my home nursing care and pain medication, every month they pay over $25,000. That means, just for those two things, that since I have moved to Kansas they have shelled out over $1,500,000. This is an enormous amount of money that my family could never have afforded on our own, and I am extremely grateful that I have access to such quality medical coverage, as it is definitely not the norm. In fact, of all of the other physically disabled people I have met over the years, I have never ran across someone with private insurance as good as mine. Thanks to my excellent health care coverage, I have been able to see the best specialists, have my own wheelchair accessible vehicle, and purchase multiple power wheelchairs, none of which would have been possible for my family financially without the assistance of our insurance plan. There is little doubt that the great health insurance I have had over the years has contributed greatly to the independent, successful life I have created for myself, and without this assistance the lives of my entire family would have been much more difficult.

While I have been extremely fortunate that I have had quality private insurance since I was about 5 years old, I do not want to give the impression that my experience with private health insurance companies has been nothing but rainbows and butterflies. Although having private insurance has greatly improved the quality of life for both me and my family, as well as having played a large part in giving me the opportunity to achieve my goals, it has not always been easy. Anyone who has ever had private health insurance knows about the irritating clerical errors that lead to problems with your coverage. Those occasions when something is denied for payment purely because it was entered incorrectly into their system, and you have to spend hours bouncing around their automated phone system getting things corrected. While I did have to deal with these frustrating moments, at least they could be corrected in an afternoon. In addition to these irksome moments, for people with physical disabilities there are a couple much larger issues that can occur, and they both can have the disastrous outcome of you losing your coverage. These two hurdles are the problems of preexisting conditions and lifetime maximums.

Scott Drotar Preexisting Condition
When my parents first started working at John Glenn School Corporation, they had to wait 18 months to see if their insurance provider would cover me despite my preexisting condition.

Thanks to President Obama, we have all heard of the problems that having a preexisting condition can cause when you are trying to get health insurance. Basically, private insurance companies say that they will not pay for anything related to health problems you had before you purchased their insurance plan (a preexisting condition). For someone like me, who has been afflicted by a genetic disability since birth, this would essentially mean that I could never get health insurance. Fortunately for me though, there are provisions and regulations that are designed to help with this major hurdle for the disabled community. In my case for example, when my parents first started working at John Glenn when I was 5 years old, even though they had a family plan for private health insurance, I was not covered. Before the insurance provider would pick me up and cover expenses related to my disability, I had to go 18 consecutive months without being admitted to the hospital. If I did not make it the full 18 months, the clock would start from zero again whenever I got discharged. Obviously, this was a very tense period for my family.

Thankfully, I was able to make it the full year and a half on my first try, but it was still definitely a very stressful and trying time. Not only was there the mental stress of seeing whether I would stay healthy long enough to gain coverage on our family plan, but there was also a large financial strain during this period. Since a stay in the hospital costs thousands of dollars, and with my health being so fragile and unpredictable, we had to purchase COBRA insurance during this period in case I would get sick. The Consolidated Omnibus Budget Reconciliation Act of 1985 (COBRA) requires employers to provide access to health insurance coverage for a period of time after employees switch jobs or are laid off. This sounds great in theory (and it has its uses), but since employers do not have to subsidize the insurance premiums under COBRA, the insurance is very expensive. This meant that on top of paying the premium for our family insurance coverage, we also had to pay the much larger monthly premium for my COBRA insurance each month. While everything worked out for us in the long run, this was a significant hurdle that could have had a huge impact on my life. Hopefully, with the progress that has been made in regards to preexisting conditions through “Obamacare,” this enormous obstacle will not be an issue for the next generation of disabled individuals.

The second major issue with private insurance coverage for people with physical disabilities is the problem of lifetime insurance maximums. Whenever anyone signs the contract for their private health insurance, somewhere in the fine print there is a section that says how much the insurance company is willing to pay over the entire life of the plan (lifetime maximum). These maximums vary greatly from plan to plan and between providers, but usually the lifetime maximum is around $2,000,000. For healthy, able-bodied people, this number is not important because you will never need more coverage than that. For individuals with severe, physical disabilities though, this number can be reached fairly quickly, and even within just a few years in some cases. Going back to the $1,500,000 that my insurance company has spent just in the last five years on my home nursing care and pain medications, you can easily see how quickly this maximum can be reached. When you take into account hospital stays, medical equipment, and all of the other medical expenses disabled people have, it is obvious that this is a huge problem. Even if disabled individuals are fortunate enough to have private health insurance to begin with, due to lifetime maximums they would run out of coverage long before they no longer need it.

Once again, there are some regulations in place to try to help the disabled community overcome this financial burden created by their physical limitations. Luckily, there are laws that state in certain situations that if a disabled person cannot get health insurance as good as the coverage they have through their parent’s plan, then they cannot be denied coverage due to age or lifetime maximums. In my case, this basically means that unless I can find another insurance carrier that will ignore my preexisting conditions and give me the same level of service I have now (fat chance), that my parent’s insurance company cannot deny me coverage. This is why I am still on my family’s insurance even though I am over 24 years old (the normal age cutoff for dependents on health insurance) and have reached my lifetime maximum several times over. Again though, this is not the norm, and very few disabled people have access to insurance coverage as good as mine. I have met numerous individuals who hit their lifetime maximum and were forced to drastically change their lives due to losing coverage. This is a major problem facing the disabled community, and it is definitely something that needs to be addressed in the near future so disabled people can live without fear of running out of coverage.

Scott Drotar Obamacare
Obamacare is trying to remove some of the obstacles preventing the disabled community from obtaining private health insurance.

Private health insurance is by far the best insurance option as far as what and how much of your medical expenses are covered. In cases like mine for example, my insurance company has spent millions of dollars over my 28 years, and this has allowed me to lead a happy, fulfilling, and independent life. Due to obstacles like preexisting conditions and lifetime maximums however, this type of coverage is not a long-term option for a lot of disabled people. While I have discussed a couple of the major hurdles for the disabled community in receiving private insurance, I have only begun to address all of the problems with private health insurance that face these individuals. I hope that my words have made an impression on you though, and that you have a better understanding of how difficult it is for disabled people to get and keep private health insurance, only exacerbating the financial burden their disability causes. In an effort to alleviate this strain on disabled people who cannot find private insurance or who reach their lifetime maximum, the government has created several federal programs to assist with medical expenses for the disabled. One of the most well known of these federal assistance programs, Medicaid, is the topic of the next post in this series.

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Di$abl€d (Part 1): Putting A Price On Disability

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Before I get into the meat of today’s post, I want to say that I am a proud American, and I feel extremely fortunate that I live in the United States. I am thankful that I was born in a country where my physical limitations do not automatically make me an outcast of society. I am also grateful that our government has implemented programs, such as Medicaid, Social Security and Disability, and Vocational Rehabilitation Services, to help individuals with disabilities overcome the obstacles they face. That being said, this does not mean that I necessarily agree with the way these programs have been implemented or managed, and it definitely does not mean that I agree with how the American government has treated the disabled community in general. Despite the fact that I may disagree with some of the decisions that have been made by the government in regards to disability rights and such, I still greatly appreciate everything that federal assistance programs have done for me. I know that without the assistance of these programs I would have never been able to achieve everything that I have or live the happy, successful life that I do. So if I come across as angry or overly harsh throughout this series, it is not that I am unappreciative or un-American, I am merely exercising my right to free speech/press and trying to create positive change for the disabled community.

All of the numbers and information I will be presenting in this series are based upon my own life and research. Private insurance and Medicaid benefits can vary greatly from plan to plan and state to state, respectively. While my experience may not be universal, it will still give you a good general idea of how these programs work in the real world.

People who live their lives physically disabled, as well as their families, know that they will face many more challenges than most people. In my case for example, I have always had to worry about things like my respiratory issues, my body’s pain level, wheelchair accessibility, wheelchair friendly transportation, having enough medication with me, and a thousand other things before making any meaningful decision in my life. While these types of obstacles may be the types of challenges that able-bodied people think about in regards to disabled individuals, there is another obstacle that most people rarely consider when thinking about the adversity faced by the disabled community. This commonly overlooked obstacle is the financial stresses of living with a lifelong disability. Everything from wheelchairs to hospital stays to home nursing care costs money, and just like everything else in the world of medicine, none of this is cheap. In an attempt to make more people aware of this major hurdle facing disabled people, I am going to be running a multi-part, Roll Models series, “Di$abl€d.” These articles will use my life as an example to illustrate for you the financial side of being disabled and some of the issues it causes.

This introductory post in the “Di$abl€d” series, “Putting A Price On Disability,” will show you how expensive it is to be physically disabled in today’s society. Even if you are lucky enough to have both private insurance and Medicaid benefits, like I do, there are still lots of out of pocket expenses related to your disability. There are frequently sizeable copays on many medical services, and a lot of things are not covered by insurance at all, which can create a lot of financial stress for disabled individuals and their families. This financial strain is more than many families can afford, which is why so many physically disabled people are forced to receive substandard care or go without certain equipment and medications. In some cases it can even come down to the impossible decision of choosing between buying groceries for your family or purchasing your medicine for the month. In an effort to create change so that more families do not have to worry about this financial burden in addition to the other obstacles created by their disability, I am going to share with you some of the most difficult financial moments from my life. Hopefully, after reading my story and becoming aware of what a huge issue this is, more people will be vocal about moving this obstacle out of the shadows and into the spotlight of society where real change can occur.

Scott Drotar Financial Burden
Once I was diagnosed, my parents quickly learned of the great financial burden facing disabled people.

Pretty much as soon as I was diagnosed with spinal muscular atrophy, my parents became very aware that my physical limitations were not only going to be an emotional and physical strain, but a financial one as well. When I was little, although I did not have Medicaid benefits, my family did have good private insurance. At this time, for the most part 80% of my approved, medical expenses were covered by insurance after I met my yearly deductible (roughly $2,500/year). While 80% sounds like a large amount, and it is compared to other insurance plans, you are about to realize (like my parents did) that it still leaves a sizeable financial burden on the disabled person and their family. To illustrate how much this 20% copay is, I went online and looked up the prices of most of the major medical equipment that my family had to purchase shortly after I was diagnosed (I am aware that these are 2015 prices, but they should still make my point). Here are some very conservative prices for just a few pieces of adaptive medical equipment with the 20% copay in parentheses:

  • Pediatric Manual Wheelchair: $3,000 ($600)
  • Pediatric Air Leg Splints: $350 ($70)
  • Pediatric Power Wheelchair: $6,500 ($1,300)
  • Repositioning Seat: $300 ($60)
  • Used conversion van with 150,000 miles, manual ramp entry, and an EZ-Lock system: $21,000 ($4,200)

***The vehicle copay is actually much higher, because insurance will only pay towards the cost of the lift and lockdown system and not the vehicle itself.***

Scott Drotar Repositioning Chairs
Repositioning chairs like this one were just one of many medical expenses that my family had to pay due to my disability.

These five items, which are priced very conservatively, already add up to over $6,000. These things were also all bought within the first two years of my diagnosis, and my family had to withstand this financial burden for at least 18 years until I became an adult. During this time my family had to put an addition and deck onto our house to make it wheelchair friendly ($15,000 out of pocket expense), buy another Braun Corporation conversion van ($25,000 out of pocket expense), and two adult custom, power wheelchairs ($2,000/chair out of pocket expense), this alone puts the grand total my family spent on my disability to $80,000 over 16 years ($5,625/year). That is the equivalent of a really nice car, a great family vacation every year, or the difference between having a bunch of student loans or not. Like I said earlier too, this is just the tip of the iceberg as far as medical expenses go, as in addition to the other medical equipment I needed, there were also doctor visits, various tests and procedures, physical therapy, and medications, all of which had a 20% out of pocket copay. Even at this amount though, you can clearly see that this is not a small inconvenience for the disabled community, but an enormous obstacle.

Once you turn 18 years old, a lot of things change for disabled people as they become legal adults, especially in the world of medical expenses. You now can receive Social Security and Disability checks, your Medicaid benefits change, and your private insurance can change as well (each of these topics are getting their own post in this series). This happens because when you turn 18, you go from being a “dependent” to an “adult” in the eyes of the government, and your benefits are now figured based upon your earned income instead of your parents’. With Medicaid, this usually means that your benefits improve, but there is a catch. If you plan on having a career and contributing to society, you run the risk of losing your benefits if you earn too much money, as Medicaid only allows you to have $2,000 in assets. In terms of your private insurance, it varies quite a bit based on your provider and plan, but in many cases, unless you are a full-time student, you are kicked off of your parent’s coverage. In my case, since I went straight to Notre Dame after high school, I got to retain my “dependent” status, like all college students. After I graduated from college, thanks to an extremely difficult three month period my junior year of university (which I will describe in detail in another article in this series), I ended up being awarded something called, “lifetime unlimited status,” by my insurance company. This basically means that, unless I can find another provider that will offer me the same quality of coverage even with my preexisting condition, my current insurance provider cannot kick me off of my parent’s plan. This, along with my Medicaid benefits, is what allows me to have 24 hour a day nursing care and live on my own.

Even though I am fortunate enough to have probably the best insurance coverage and Medicaid services you can get, I still face a sizeable financial burden due to my disability. While I no longer have to worry about copays, because Medicaid picks up the remaining 20% my insurance does not cover, there are still numerous medical expenses that are not covered by either plan. Items that are not technically “medical,” like the hygiene supplies I

Scott Drotar Social Security And Disability
At the age of 18 all permanently disabled people become eligible for Social Security and Disability benefits.

use for bed baths, certain wound care supplies, and over the counter dietary supplements, are not covered at all. Since I just totalled all of my out of pocket medical expenses to file my taxes, I can tell you that I had over $4,500 in medical expenses last year. For someone who is severely disabled (reducing how much and how often I can work) and is starting their own business, this is a large sum of money. This is about $375 a month that I have to spend that other, able-bodied people do not, purely because I am physically disabled. So not only am I weaker, live in constant pain, and know that I will have a shorter life than most, but I also have to fork over $375 a month to just to live this way. That is like paying David Beckham to kick you in the stones or Edward Scissorhands to give you a prostate check. You would never do that, just like you can see how my medical situation is completely backwards. Crazy, right?

I hope you now have a better understanding of the financial pressures faced by disabled people and their families. Even those individuals who are lucky enough to have both private insurance and Medicaid benefits, there are still countless medical expenses that are not covered, which leaves a sizeable financial burden on the person themselves. On top of all of the other obstacles presented by being disabled, this financial stress is even more difficult to deal with. Think about what your budget would be like every month if you had another $375 bill to pay. What would it do to your lifestyle? This is what I, and thousands of other disabled people, have to live with our entire lives. Try to keep this in perspective the next time you have a one-time $75 copay at your doctor’s office and want to complain, because it could be much worse.

Now that you have a basic understanding of what private insurance companies and federal programs will and will not cover, as well as a decent grasp of the financial burden disabled individuals face, it is time to look at each of these programs more closely. In the next few entries in the “Di$abl€d” series, I am going to discuss the pros and cons of private insurance and multiple government programs. This will begin with the next post in this series on private insurance coverage.

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If You Can’t Take Muhammad To The Mountain,…

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The Braun Corporation creates mobility solutions for people with physical disabilities.
The Braun Corporation creates mobility solutions for people with physical disabilities.

Today’s post is located on the BraunAbility Blog website. I discuss how my disability has impacted, not only my life, but the lives of my entire family in major ways. Thanks to my amazing parents, siblings, and the incredible bond we share however, we always find a way to focus on what is really important in life and make things work. By working together and combining our efforts, the five of us are able to overcome the obstacles presented by my physical limitations and lead fulfilling, happy lives together. 

***There was an issue with posting this article on the BraunAbility blog, as they are in the process of remodeling their website, so I am posting it here instead. My apologies for any confusion.***

Even though I am fortunate to have a van with a Braun hydraulic lift that allows me to travel as I please, this does not mean that my disability does not still present obstacles that make it difficult for me to travel, especially long distances. Without even considering the logistical issues that come with venturing far from my home, like arranging lodging that will meet my needs, finding a caregiver to travel with me, and being sure to pack enough medication and medical supplies, the physical toll that spending all day travelling has on my fragile, weak body is an issue that can make driving great distances very tough on me physically. While I can easily recover from shorter trips in my van, the cumulative effects of the repeated abuse from spending hours getting tossed around on the road are much harder on my body. Due to the nature of my disability and my chronic pain, every crack, pothole, and bump I hit during these long days on the highway hits me like a body blow from Mike Tyson, which for short trips is not a big issue, but withstanding this over an extended period of time is a completely different story. The total effect of repeatedly getting bounced around for hours on the freeway often results in me having to spend two to three pain filled days recovering for every day I spend on the road, so unless my destination is something really special, the trip is probably not worth it. Since I cannot travel long distances and live more than 600 miles away from my family, you may think that I lead a very isolated life having no way to visit my family for holidays and such. And for most people this may definitely be the case, but thanks to my incredible family and by making the most of the distances I can travel thanks to having my own vehicle, I have been able to not only maintain, but improve, my familial relationships and enjoy a fulfilling social life despite my inability to spend long days on the road.

Up until a couple years ago when my body could no longer handle the long drive to my parent’s home, like most families, during the Holidays my siblings and I would all trek to my parent’s house to spend time together as a family. These were always fun visits as they allowed us to practice our family’s Christmas traditions, escape from our busy schedules, and retreat for a few days back to the simpler times of our childhood. Two years ago however, it was fairly obvious that me making the 12 hour drive home was not a good idea, which meant that we could no longer all get together at my folks like usual. My phenomenal family however, was not about to let my inability to make this lengthy journey stop us from enjoying the Holidays as a group, so they adopted the old saying, “If you can’t take Muhammad to the mountain, you bring the mountain to Muhammad.”

Instead of everyone journeying to my parent’s house in Indiana, my loving mother, father, and siblings all travelled to my home here in Kansas City for Christmas. This allowed me to avoid having to spend all day on the road, while also letting us celebrate together as a family. While they were making arrangements to head my way, I was making the most of the mobility my van provides me to create the most festive atmosphere as I could for them. Having my own vehicle allowed me to make the necessary trips to do things like pick up the ingredients to make our favorite Holiday treats and shop for tinsel, lights, and other items to decorate my apartment. My ability to make these short trips allowed me to cook the same foods that my mom would have made back home and decorate my apartment like Santa’s workshop at Macy’s, which created a Winter Wonderland for everyone to enjoy. My family’s willingness to modify our Christmas celebration to accommodate my disability, along with me maximizing my mobility to run errands and such, allowed us to have a wonderful Christmas together despite the obstacles posed by my physical limitations. While doing all of this allowed us to continue our family customs, spend Christmas together, and enjoy the Holidays though, the most important thing was that even though we were not in the same city as usual, we were all together. In the grand scheme of things, this is really all that mattered in the end. Regardless of where we meet, so long as the five of us are together we know we will be happy.

This was our second year of holding our family’s Christmas gathering at my apartment, and I am happy to say that this year was even better than the first. Not only did I avoid having to spend a long day getting beaten up on the road, but we were also able to carry out our family traditions of putting up the Christmas tree on Thanksgiving night, opening gifts one at a time Christmas morning, and watching our favorite Holiday movies (“Elf,” “Christmas Vacation,” “Rudolph the Red-nosed Reindeer,” etc.) together as a family. Even though I would like to think it was my improved decorations and other preparations that made our family Christmas so great this year, the truth is that the ornaments, garland, and Santa shaped sugar cookies had little to do with it. It was our strong family bond and our ability to focus on what I can do instead of what my disability takes away that really made the difference. In the end, the thing that makes the Holiday Season feel so special is that we are all together around our family Christmas tree on December 25th. No matter what city we are in, how many miles of tinsel we hang, or how much Christmas fudge we make (and eat), so long as the five of us get to wake up Christmas morning and sit together around our tree, it will feel like Christmas.

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