Tag Archives: Overcoming

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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My Other Family

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Scott Drotar Hurricane Katrina
Hurricane Katrina made landfall in Louisiana on August 29th, 2005, and in doing so changed my life forever.

I will always remember August 2005 as the time when I moved away from home, started my collegiate career, and began living as an adult on my own. While these were all monumental moments that were major milestones in my life, there was another event that occurred at this time that was much more important and influential. The impact of this occurrence was felt for years by millions of people all over the country, and its effects are still being felt in some areas, but it also had an unexpectedly large effect on my life as well. This awful moment that took place the last few days of August was Hurricane Katrina. This terrible event killed hundreds of people, ruined the lives of thousands more, and damaged the entire nation, but even with all of this carnage and mayhem, thanks to the strength and resiliency of the human spirit some good did come out of this horrible destruction. I will never forget that night Katrina hit, sitting in the chapel with my new dorm brothers, hoping that everyone’s family and friends were alright. As I sat there with my dorm brothers from the New Orleans area, as they were watching and waiting helplessly to hear from their loved ones, I learned an important lesson about life. This tense, stressful time filled with prayer and brotherhood showed me the power of community.

I was only 18 years old when I moved away from home and began living in the dorms at Notre Dame. Like every teenager on the cusp of adulthood, I thought I had everything in life figured out, and I was certain that my transition from living in a tiny, Midwestern town to being on a college campus with a graduating class larger than the population of where I grew up, would be a piece of cake. Also like most young adults, I could not have been more wrong. Almost as soon as I got to campus and began freshman orientation, I was in culture shock. I had spent my entire life in a one stoplight town of barely 2,000 people, nearly all of whom were white, Middle-class families, and now I was in an environment with over 10,000 students from all over the world and from every background you can imagine. I will admit, I was a little overwhelmed and taken aback by this huge shift in my surroundings. I do not want to give the impression that I was not enjoying my new life away from home or that I was not making friends, but for my first couple weeks on campus, even though I was trying to be very active socially, I never felt like I was really connected to my dorm brothers and other fellow “Domers.” This all changed though on the night of August 29th, when one of the worst hurricanes in our nation’s history struck New Orleans.

While I had been aware that a large hurricane had been heading for the United State’s gulf coast area, I really had not been paying too much attention to the specifics of this storm. Since I had no family or friends in that region, to me it was just another hurricane that the weather forecasters were trying to dramatize for higher ratings (“storm of the century” and “snowpocalypse” come to mind). The evening Hurricane Katrina made landfall in Louisiana, I was going to check my mailbox that was down by the dorm’s chapel, and I noticed that there was a pretty big group of guys in the pews. This seemed a little strange to me, since there was no priest in the room and was not time for mass yet anyway, so I decided to see what was happening. As soon as I entered, before I even spoke to anyone, I could feel from the atmosphere of the room that something terrible had happened. I sat in the back next to an upper classman I had gotten to know during orientation, and once I was certain he was done praying, I quietly asked him what was going on. He explained to me how bad Katrina was, that currently there was little to no communication with people in that area, and that they were all praying for their loved ones and hoping they were safe. Looking at all of the red eyes, tears, and silently moving lips of prayer that surrounded me, I immediately felt bad for my new “siblings,” and the terrifying unknown they were currently in. Even though I am not Catholic, or even what you would call “religious,” I stayed there with my new brothers of Keough Hall and silently supported them with my presence. When one of them stood up and said that some of them were going to light candles at the Grotto, I decided to go along to offer any solace I could.

Scott Drotar Grotto
The Grotto on the University of Notre Dame campus, made famous by the movie, “Rudy,” is a very sacred place.

For those of you who are not familiar with the University of Notre Dame campus, have not seen the movie “Rudy,” and are not Catholic, I will give you some background. First, the “Grotto of Our Lady of Lourdes,” or just the Grotto, is a miniature replica of the French shrine where the Virgin Mary appeared to Saint Bernadette multiple times in the mid-19th century. Father Sorin, the founder of Notre Dame, was so awed by the beauty and divinity of the original site, that he vowed to recreate it in some form on campus. It contains a stone from the original site in France, and it is one of the most sacred places on campus. Every evening, no matter how cold or wet it may be, the Rosary is prayed, and there is rarely a moment when there is not someone kneeling before the statue of the Virgin Mary, lighting a votive candle, and saying a prayer. Which brings us to the second topic to cover, the act of lighting candles in worship. I believe some other faiths do use candles as symbolic offerings during worship and prayer, but it is most widely known as a Roman Catholic tradition. While I am not Catholic, as best I can understand it, the lighting of a candle during prayer is a symbolic offering of devotion when you pray for someone or something. Generally, you light a candle for someone specific, and that flame is representative of your prayer. This is a very special and holy act that is quite sacred, and it is typically only used during difficult or trying times, like the night Katrina made landfall.

It was a dark, balmy August night as my dorm brothers and I made the quarter mile trek over to the Grotto. I do not think anyone said a word during the entire walk. There was nothing to be said anyway, as we all knew how each other was feeling, and there were no words that could make things better. When we arrived at our destination, some guys lit candles, others were kneeling with their rosary beads gripped tightly in their devoted hands, and a few, like myself, simply took a seat before the Virgin Mary, but we were all doing the same thing in our own way. We were all praying, not just for our own family’s safety, but for the safety our new brothers‘ families as well. This moment of destruction and terror had forged between us a bond that we would carry with us the rest of our lives. We now belonged to two families, our biological family and our Notre Dame family. Sharing in each other’s pain and suffering that night brought us together, and it did not matter what our backgrounds were, because we were all in the same family. Our group slowly dissipated as guys slowly trickled back to the dorm, but I will never forget how I felt walking back to my room that night. In just the couple hours I was out that evening, I had gone from a home sick, culture shocked fish out of water to a confident man with over 200 new brothers that I could count on. After that night I never felt like I did not belong or wonder if I was fitting in around the dorm, because I knew that we were all family.

Scott Drotar My Other Family
My second family is so precious to me that I have the Notre Dame logo and my graduation year tattooed on my chest.

I am not trying to compare my relationships with my parents and siblings to my relationships with my dorm brothers, as that is comparing apples and oranges, but this connection I formed that night in the Grotto is something special. It showed me the strength of banding together in a common goal, and how by coming together in your shared pain you can alleviate your suffering. Most of all though, this story teaches you the power of community and brotherhood. In that one evening, we created a union between us that to this day is extremely strong and has a major impact on our lives. If you have the courage to open up and let yourself feel with others, empathize with them, and support them without judgment, you can harness the true power within your hearts and minds. Whether you call it resilience, the might of the human spirit, or something else entirely, you will know it when you feel it, and its impact will last a lifetime. The force of this banding together will pleasantly envelope you and help you overcome whatever you are going through together. Sharing this powerful, emotionally charged experience will create a connection between you that will never weaken. It is a bond forged in the fires of suffering and despair, and like iron hammered on a hot anvil, it is unbreakable. It is a relationship you can only describe as family, and just like your original family, you will be much happier having these amazing connections in your life.

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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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Setting Boundaries

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Scott Drotar Purple People-Eater
I am a huge “people-pleaser,” not to be confused with a “flying purple people-eater.”

I have something I have to tell all of you, but it is not going to be easy. I have not addressed it explicitly thus far in my Roll Models articles or talks, but I have decided that I need to be open with you. If I am going to share my world with you, then I need to share the good, as well as the bad, in order to give you an accurate depiction of my life. I hope this will not change your opinion of me, but I will totally understand if you see me differently after this post. I better just do it before I lose my nerve, so here it goes. My name is Scott, and I am a “people-pleaser.” That is right. I, Scott Drotar, your wise, witty, wheelchair-using wordsmith, is a “people-pleaser.” Not only that, but I am probably one of the worst “people-pleasers” in the world. I have a compulsive desire to please others and make people happy. I have a problem saying “no,” volunteer for things even when I have a full schedule, and often burn the candle at both ends. I fear missing a deadline and “dropping the ball” on a project more than death. My drive to help others live better lives even caused me to create (at least partially) my own speaking program and website to motivate and inspire as many individuals as possible, and if that does not scream, “people-pleaser,” I don’t know what does. However, I know that admitting I have a problem is the first step to coping with my issues, so I am here telling you today that I am a “people-pleaser.”

Ok. I know that this is a bit over-dramatic, and I do not mean to make fun of addiction issues or recovery groups, but I am a bona fide “people-pleaser.” When I get the sense that someone is not happy with something I have done, I get this physically ill and uncomfortable feeling throughout my body. I do not know why I get such a strong physiological response, but when I say “no” to someone, do not meet someone’s expectations, or otherwise let someone down, I get these horrible, sick feelings. I get this nauseated feeling in the pit of my stomach, my breathing gets shallower, and my body gets

Scott Drotar Setting Boundaries
Growing up, my siblings and I were always being told to think of others before ourselves.

flushed and sweats like a sinner’s on judgment day. While I do not know why it happens, I do have a good idea of how it started. Growing up, one of the things that my parents were constantly preaching to my siblings and I was the importance of thinking beyond ourselves. They were always telling us to put the needs of others before our own and to focus first on the happiness of the people around us. These altruistic ideals are something we all need to learn, and they have been quite valuable throughout my life, but it is important to remember to keep things in perspective. Just like everything else in life, you need to find the right balance. If you are only ever worrying about the well-being and happiness of others and completely ignoring your own needs, you will end up being just as bad off as people who only think of themselves. Sure, people may like you a lot more than these greedy, self-serving individuals, but you will not be any better off since you are not addressing your own needs. By constantly giving to others all the time, you will end up burnt out and miserable from ignoring your own wants and desires. This is not only bad because you deserve to be happy, but also since in giving too much of yourself and burning out in the short-term, you will no longer have the drive to help improve the lives of others over the long-term. In order to help others as much as possible, maintain your own happiness, and avoid fizzling out and imploding on yourself like a dieing star, you have to learn to set boundaries.

When I was in my first semester of graduate school, since I was new to the quantitative psychology program, had almost no knowledge of theoretical psychology, and had a much different background than my colleagues, I felt like I had something to prove. I felt like I needed to show everyone that I belonged and could be an asset to the department. In an effort to prove my worth, I would volunteer and sign up for anything that I was even remotely qualified to do. When my boss would start looking for people to handle certain jobs at our weekly staff meetings or email the entire department looking for someone to take on a new client, I would be the first to speak up or hit reply. As you can imagine, after a couple months of signing up for anything and everything I could, my plate was very full. It got to the point by mid-semester where I had zero free time or personal life, and if I was not in one of my own classes, I was working on something for a client. I was well on my way to burning out, and if I had continued much longer this way I am certain I would have (probably ending my academic career), but thanks to some wisdom from a professor, I was able to avoid this unpleasant fate and learn an important life lesson.

I was sitting in a lecture hall the week before Fall Break waiting on one of my classes to start, and as I was quietly sipping my Starbucks latte, the professor walked over and asked how my first semester of graduate school was going. I told him that I was enjoying myself and thought I was doing well in my courses, but I was still struggling with finding enough time to complete all of the projects I was working on. He smiled and said that time management was a big part of grad school, and then asked me what projects I was currently helping with. I started going through my mile-long list of current projects, and after about the sixth one, my professor stopped me. He said that I had more projects going than he did even as a tenured professor, and that I was definitely doing way too much for a first year graduate student. He then went on to ask me who had assigned me to all of this work. I shook my head quickly and told him that no one had assigned these projects to me, but that I had volunteered. I added that I thought as the new person in the department and being “low man on the totem pole,” that I was supposed to volunteer a lot and show people what I could do. At this point, a gentle smirk came across my professor’s lips as he said that I had things “completely back-asswards.” He then gave me two great pieces of advice. The first was that the people that mattered already knew what I could do, or I would not be there in the first place (a universal idea that we all forget occasionally). The second, and more valuable, nugget of wisdom was the importance of setting boundaries.

My professor explained to me that in academia, one of your most valuable commodities is your time. There is only so much time in the day, and you will always end up having more work to do than time allows. Unless you can learn to set some boundaries, you will end up going crazy as you painstakingly try to do everything for everyone. If you do not protect your time today by learning to say “no,” you will not have the drive or mental faculties to say “yes” later on when you do have time. It is all a matter of having the ability to help as many people as possible in the long run. It is much better, both for you and others, to help on a few less projects every year, but be around for four years, than to help on every project this year, but burn out and leave after this Spring semester. Having it explained to me this way, as a cost and benefit type problem, really put everything in perspective for me. I realized that you have to balance your “yes’s and no’s” by setting boundaries, in order to get the best result and participate on the most projects.

Scott Drotar Totem Pole
As the “low man on the totem pole” in my first semester of graduate school, I rarely said “no” to a project.

As important as my professor’s sage-like advice was for surviving my grad school career, it was only after I thought about his words for a few days that I realized their real value. It turns out that this same concept about protecting your time and setting boundaries is applicable to nearly every part of life. Just like I needed to say “no” to some projects early on in my grad school career in order to maintain my sanity, graduate, and achieve my long-term goals, you also need to create and sustain limits in all of the other areas of your life if you want to be happy and successful. By developing boundaries you will be able to better prioritize your life and maintain a healthy balance even when you are being pulled in a thousand different directions. Whether it is turning down a “happy hour” invitation from a colleague to have family dinner, or saying “no” to your boss’s request that you stay late to watch your child’s dance recital, your boundaries will ensure that you do not get beaten down by life or lose sight of what is most important to you. Developing these limits, learning to say “no,” and remembering that long-term success is most important, will make you feel much happier and fulfilled with your life, and since you will be better equipped to help others in the long run, it will improve the lives of others as well.

I am a “people-pleaser,” and that will never change. The feelings I have to make everyone around me happy and not disappoint others will never completely go away. Like any other compulsion or addiction though, you can learn to manage these feelings and live a happy, successful life. Developing good boundaries, and sticking to them, will go a long way towards controlling your “people-pleaser” urges. If you too suffer from this horrible affliction, take the time to really think about the wisdom my professor shared with me. What areas of your life are making you feel burned out? What parts of your life are you ignoring because of other obligations? Make a list of what aspects of your life are the most important to you, and then create boundaries that ensure you devote your time to the right things. If you develop good boundaries, and stick to them even when it is hard, you will no longer be a slave to your urges as a “people-pleaser.” You will enjoy a long, happy life with your loved ones, and better yet, in the long run you will be able to give more of yourself to others.

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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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His Greatest Achievement

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Scott Drotar Lifetime Achievement Award
My father was given a lifetime achievement award for his more than two decades of service to the students of John Glenn High School.

This year the school district where my father works awarded my very deserving dad with a lifetime achievement award for his nearly 25 years of service as a teacher and coach to the students of John Glenn High School (JGHS). In bestowing this prestigious honor upon him, I am sure that they will bring up the numerous teams he has coached, the dozens of different classes he has agreed to teach over the years, and his work to improve the school’s AP program for college bound seniors. While all of these accomplishments are worthy of praise and recognition, these types of things are by no means his greatest achievements as an educator. His most important accomplishments as a guide for his students did not occur in the classroom, on the football field, or softball diamond, and the impact that he has made is far more valuable than any tackling technique or test score. His greatest feats as a teacher are things that his students will remember and carry with them for the rest of their lives, as they mature into successful, happy adults.

One Summer several years ago, I had gone out with my father to run some errands around town, and he needed to stop by the high school to grab something out of his classroom. As he ran down to his room to grab whatever he wanted to pick up, I decided to stop in the school’s main office to say “hello” to my old guidance counselor. While I was in the office talking about my time at Notre Dame and such, the newly hired assistant principal of the school walked in. After introducing ourselves, I came to find out that even though he was now going to be my dad’s superior, he had actually been a student of my father’s years before at another high school. This was strange enough to hear, but as I was waiting on my dad to return, this young administrator told me a story about my father that I will always remember. Not only will this story forever remind me of how amazing and wise my father is, but it is a great example of the way he has made a lifelong difference in the lives of so many of his students.

Scott Drotar Young Teacher
Even as a young teacher and coach, my father was extremely devoted to making an impact on the lives of his students.

When my father was just starting his career as a high school teacher, he worked at a school in a rural, farming community in Northern Indiana as the government teacher and football coach. During this time, the new assistant principal of JGHS was a senior and both a student of my father’s as well as a player on his varsity football team. He was a popular guy and a leader on the team with a bright future ahead of him, but as so often happens with hormone crazed teens however, life happened, and he and his girlfriend got pregnant. An unplanned pregnancy is something that fully grown, mature couples can barely deal with, and for a couple of high school kids, who cannot even buy a lottery ticket, this type of situation is even more impossible to manage. A few days after learning this life altering news, this young father-to-be went to speak to my dad after school one day to discuss how it may affect his ability to remain on the football team. It was this conversation with my father that this young man credits with having the greatest impact on him during this trying time in his life. He even believes that without my dad’s guidance that he would not have been able to overcome this adverse set of circumstances and create a successful life.

After hearing about his life changing situation, my father had this troubled teen take a seat in one of the student desks in his classroom, and my dad sat down in a desk right across from him. Out of everyone this adolescent had spoken to about the pregnancy, this 18 year old was being talked to and treated like a man for the first time, because that is what he had to be now that he was having a baby. My father did not talk down to him as an adult to a child, but instead like a man, an equal, advising another man. My dad basically said that the most important thing was to do right by this child, and that he would have to sacrifice some things in order to make this kid his number one priority. My wise father did not pretend to have all the answers or know what to do, but by helping this young man gain some perspective and re-prioritize his life, he got him on the right track to overcoming this difficult situation. While he did not receive any specific advice on how to move forward, the scared, 18 year old kid that entered my father’s classroom that day left that room a much more confident, mature young man, thanks to the wisdom and guidance of my incredible dad.

This emotional, inspirational story about how my father helped this distraught teenager keep his life on track was moving enough on its own, but the look on the face of the now assistant principal made it even more powerful to hear. As I listened to him recount this tale from his past, I could see the tears welling up in his eyes as he remembered how my father had made him feel that day many years ago. The look on his face and the inflection in his voice made it obvious how much that conversation meant to him, and the immense amount of gratitude and respect he had for my dad because of it. You could tell that this young administrator truly believed that if not for the guidance of my father, he would not have been able to keep his life in order, graduate from high school, raise a family with his high school sweetheart, and become a high school principal. And while you would think that this sort of life altering event would be a one time occurrence for the careers of most teachers, and for lesser men than my father that would probably be true, but this is just the tip of the iceberg for Mr. Drotar. I cannot begin to tell you the number of former students and players we have bumped into over the years who have that same look on their face when they come up and shake my dad’s hand. Even though most of these thankful individuals did not have anything as life changing as a teen pregnancy to deal with, they all had the same feelings of respect and admiration for my father and the way he treated them as adolescents. They are all grateful for the way he treated them as young, emerging adults and the life lessons and wisdom he was always willing to share.

Scott Drotar His Greatest Achievement
My father has accomplished many things during his career, but his greatest achievement are the successful individuals out in the world whose lives he has touched.

Anyone who has worked with my father for any length of time would definitely agree that this recognition of his years of dedication and service to the students of JGHS is much deserved and long overdue. While this award may focus on his students test scores and the number of winning teams he has put on the field during his career, the people who really matter, the thousands of young men and women who have sat in his classroom, know that his greatest professional achievements have little to do with academics or athletics. His greatest accomplishments as a teacher are the happy, successful individuals that were able to grow into functioning members of society thanks to the wisdom my father passed on to them. These life lessons and guidance will never show up on any spreadsheet of test scores or in a box score of a high school football game, but that does not mean that they are not important. If anything, the fact that these words of wisdom he has shared with so many young minds were done without any recognition or acclaim makes his sage-like guidance that much more incredible. I want to say congratulations to my incredible father for this much deserved award for his life of dedication to his students. I am so extremely proud that I get to introduce you as my father, and I hope that the wisdom you have imparted on me has helped me to grow into a man that you are proud to call your son. You are a terrific teacher, an amazing coach, and most of all a phenomenal father. I love you and hope that you enjoy your time in the spotlight (although I know you will want to return to your spot behind the scenes as quickly as possible).

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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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