Even if you don’t have any mobility challenges, funding is a part of life that you need to give attention. With a high SCI your funding decides where you can live, how you get around, and pretty well every part of your daily life. Three main funding sources exist in the US for those with major disabilities: private insurance, government insurance in the form of Medicare and Medicaid, and private pay.
I am fortunate to have private insurance through my father’s employer. They pay for items like wheelchairs, night nursing care, and other regular medical needs. Unfortunately, as time goes by the cost for insurance continues to skyrocket and what they cover drops. While I have this funding source, I have about nine hours a day of nursing through this source and very little out of pocket expense for medications and doctor’s visits.
Federal, or government funded, insurance greatly varies on what country you live in and what state. I live in Iowa in the United States. We do not have the great options, but not the worst either.
Medicare and Medicaid
Medicare is regulated through the federal government while Medicaid funding is decided upon at the state level. Both of these programs are usually considered for the elderly, but they also apply to persons with disabilities. In Iowa, if you require 24-hour a day assistance for your medical needs, like me, and don’t have private insurance, your primary living option is a nursing home. Community living is supposed to be available, but it’s unfortunately rarely done.
I use a waiver covered by Medicaid for my day nursing called CDAC that covers about ten hours a day. It is a lot of paperwork and management of hours, but thankfully it has allowed me to stay at home.
Voc Rehab as I call it is another government assistance that is charged with helping individuals with disabilities find work. They helped me during college by paying for some of my care provider hours so I could live in the dorm and concentrate on my studies. Unfortunately, after graduation I was deemed “unlikely to find work” due to an employer’s potential health care cost, so they no longer would help me. They can be a beneficial resource for many people, so anyone with a disability looking for work should look toward their services. Young persons can learn more about services available in their state through the Association of Youth Leadership Forums.
Everyone uses some amount of private funding for his or her medical needs. Whether it’s a few dollars for an over-the-counter medication or a large fund-raising effort for something like an FES bike, any item that is paid for out of pocket is private funding. I am fortunate that with private insurance and a form of Medicaid, this is a small part of my medical funding.
However, if you are recently injured, watch your spending very carefully as expenses can become overwhelming quickly. Some persons with spinal cord injuries attempt to get compensation from another party that caused the injury and live off of this amount. Unfortunately, this rarely works as funds are spent much faster than expected or they need to last longer than predicted. It is best to get along with the other options above if at all possible.
No matter what funding you use, the political arena can have a big impact on how it can be used. A current example of this is the Affordable Care Act (ACA), often referred to as Obamacare.
For most of my life, I always heard about being careful not to hit my lifetime cap with insurance. With private insurance, most plans have a maximum a person can spend in their lifetime. When that happens, it generally means that the individual can no longer get such insurance coverage and must rely on other sources. Thankfully, the Affordable Care Act ended this practice and it is no longer a concern. However, that’s not to say it is without problems.
In early 2014, I lost the insurance plan I was on due to changes from the ACA. I got on a new plan, but a week later I was told my nursing would no longer be covered due to not being on a vent. Most of the spring and summer was spent battling with insurance, looking at nursing homes, and political assistance. Thankfully, I ended up with the system we have now and is currently stable.