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.
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.
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.
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.