I am nervous, very nervous. For my family, there is a lot at stake potentially in the upcoming election. I have never felt this way about a presidential race. Of course, I have felt passionate about candidates since high school, but this is different.
My son was born with a congenital heart defect. There is no one to blame. It just happened. He did nothing to cause. I did nothing to cause it. It is most likely a genetic anomaly.
The stress a family goes through when a child has a serious health condition is indescribable, but it is only just the beginning. On top of worrying about your child’s very survival, there then becomes the question of how will you pay for treatment. Here is the very personal story of our families trials and tribulations with finding health care coverage.
When my son was born, I was on Medi-Cal. Income and asset requirements are different when you are pregnant, thankfully, or else we would not qualify. I own my home; I have money in the bank; I own some stocks. All of this would disqualify me under normal circumstances, despite my income, for Medi-Cal. Exceptions are made from pregnant women and children.
When my son was born, I was working under a grant as a school readiness teacher. Since it was grant funded, the school district would only grant me temporary status, thus no access to employer-based group plan health insurance that by law would have to cover a preexisting condition. Try buying health insurance privately when you are pregnant. It was impossible.
After my son was born, the Medi-Cal coverage lasted for two months. He was diagnosed at two weeks of age with Tetralogy of Fallot, and the social workers were great at getting him signed up for California Children’s Services (CCS). We automatically qualified since I was on Medi-Cal. Our CCS coverage would have to be renewed a year later, eight months after Medi-Cal ran out and I no longer qualified, as I was no longer pregnant.
A word about Medi-Cal: It is a very invasive and confusing process to apply. It is difficult if you do not have a phone, or you live in a remote area, as we do, to be in touch with your worker. By allowing very limited assets, they make it difficult for people to save and get ahead financially. The worker even told me I should switch my bank account, stocks, property, etc. to someone else’s name so I could qualify.
CCS was amazing! They took care of everything: the weekly doctor’s appoints to check blood oxygenation, the echocardigrams, the visit to the cardiologist every three months, and the million dollar surgery! They would have even helped with gas vouchers and housing for the surgery, which was six hours away in San Francisco, but we felt they had been generous enough and did not need the extra assistance.
Unfortunately, we did not qualify for CCS based on our income when it came time to renew. Income guidelines have not been changed since the 1960s. We also did not qualify for California’s SCHIP program Healthy Families, which would have given us automatic CCS approval.
I then began to search for health insurance through the individual market. I was, of course, denied, as my son’s heart condition was one of the preexisting conditions health insurance companies could completely flat out reject to provide coverage. A group plan would have insured him, but that was not an option from my temporary status and work and his father being self-employed.
The next step was California’s Major Risk Medical Insurance Program (MRMIP). In order to qualify, we had to have a rejection letter from a health insurance company (no problem) and be with out insurance for an entire year. During that year, my son needed two out patient procedures completely unrelated to his heart. We spent over $45,000 in health care for him. After that year was up, we were put on a waiting list for a few months, as the MRMIP program is for all pre-existing conditions in the state and has limited funding.
Under MRMIP, we had normal health insurance. The state negotiated the rate, which was reasonable ($260 a month). After being on the program for a couple of years, you were guaranteed coverage on the open market. Here’s where I probably made a mistake.
After a year on MRMIP, our income dropped, and we were able to qualify for Healthy Families. In order to save money, I switched programs…$30 a month versus $260. It also meant automatic enrollment in CCS. We finally had full coverage, but it only lasted a year.
Our income once again put us out of the Healthy Families program when it came time for renewal. We would have to wait another year without insurance to be abled to apply for MRMIP again. Fortunately, my job status changed from temporary to permanent, and I was offered insurance through my employer. Since I worked part time, the premiums were prorated and very expensive taking most of my paycheck each month. I didn’t care. We had insurance. Who needs money for living expenses?
Once again, everything changed when the Affordable Health Care for America Act became law. I was able to apply online and get insurance for my whole family, even my son, at 1/4 of the price I was paying through my school district! The coverage is not equal, so comparing is hard to do, but we have it, and it is affordable! The insurance company was more concerned about my arthritic hip than my son’s heart!
I am tired of Romney’s lies. His plans do not include my son. My son did not have coverage under HIPAA. He has had gaps in his coverage. He is a minor. My son is not alone.
I started writing this post a couple weeks ago before the debate. The lying continues. Paul Krugman writes,
How many Americans would be left out in the cold under Romney’s plan? One answer is 89 million. According to the nonpartisan Commonwealth Foundation, that’s the number of Americans who lack the “continuous coverage” that would make them eligible for health insurance under Romney’s empty promises. By the way, that’s more than a third of the U.S. population under 65 years old.
Another answer is 45 million, the estimated number of people who would have health insurance if Obama were re-elected, but would lose it if Romney were to win.
That estimate reflects two factors. First, Romney proposes repealing the Affordable Care Act, which means doing away with all the ways in which that law would help tens of millions of Americans who either have pre-existing conditions or can’t afford health insurance for other reasons. Second, Romney is proposing drastic cuts in Medicaid — basically to save money that he could use to cut taxes on the wealthy — which would deny essential health care to millions more Americans. (And, no, despite what he has said, you can’t get the care you need just by going to the emergency room.) Wait, it gets worse. The true number of victims from Romney’s health proposals would be much larger than either of these numbers, for a couple of reasons.
This is the first time a president has ever done anything that personally affected my life significantly. Of course, government decisions affect us one way or another, but this one is personal.
I am worried. Americans are believing the lies.
I can’t even convince my son’s grandparents.