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.
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.***
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
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.