Tuesday, March 23, 2010

Health Insurance

I never watch daytime television. I used to, but found time slipping through my fingers. This morning I had to ice my sore shoulder, which requires sitting still for 30 minutes or so. I turned on the morning news and watched President Obama sign the Healthcare Bill into law. The debate is over. This is now the law and over the next several years we will see changes for many people. It will be interesting to see how the provisions of the law are actually put into action. I know it will be expensive, but I also know it will make a change in the lives of many many people.

My family has been lucky. We have always had health insurance. However, health insurance works best when you are healthy and need it only occasionally. When Maggie was born, we quickly learned the limitation of the health insurance and the devastating effects those limitations can have on a family. The insurance we had when Maggie was born was considered quite good. However, it had a lifetime cap of one million dollars. Once the policy paid out that much, we were on our own. Maggie’s first hospitalization was 11 weeks in the NICU. The bill was $550,000. We knew that was only the beginning. She would go through that million-dollar cap in less than two years. We were trying to deal with the shock of Maggie’s complicated diagnoses and the surgical road she faced while the realization of financial ruin faced us. We were completely freaked out.

Financial ruin did not happen to us. My husband changed jobs and started over with a new insurance policy. That took the immediate pressure off us, but co-pays and non-covered things were still taking a huge bite out of our budget. When you added that to the financial hit we took when I had to stop working, it was still daunting. We had not even considered her disabilities, at this point. We were running as fast as we could to deal with the increased expenses and 50% reduction in income.

Maggie’s disabilities were becoming more and more apparent and therapy and equipment added to the financial and emotional stress. There were programs to help her, but we were still reeling. We were saved by the State of California. When she was about two years old, she was the first child in San Francisco to be “institutionally deemed.” This is a fiction that opens the door to additional programs, especially medi-cal (California State health insurance). The way it works is that a child as complicated as Maggie could easily be institutionalized. If she were in an institution, the additional state programs would be available to her. Keeping Maggie at home is an obvious benefit to her, her family and a financial benefit to the State. It is a win, win, win. In order to encourage this, the state “deems” her to be institutionalized and opens the door to those programs.

I will not lie. Meeting Maggie’s needs is very expensive, but doing it this way is better and cheaper than an institution. I am an unpaid case manager who works 100 hours a week, so I can tell you right off the bat that the state is saving a lot of money by having mom do the work. This is the price I pay to get to keep my daughter at home and it is worth it. We could not possibly have kept Maggie at home without this program. Even with it, we struggle to keep all the balls in the air.

I know there are thousands of people out there who are not as lucky as we are, they do not have health insurance or have a catastrophic illness and find their health insurance is not enough. I don’t know exactly how this new Health bill will work, and I don’t know if the cost will cripple us, but I do know that a government-sponsored program can make a difference in the life of a person and a family.

Maggie is an extreme example, but she is not unique. There are thousands of kids like her and gazillions of less extreme examples. Whatever you think about the wisdom and cost of this healthcare bill, please remember there are real people with life and death issues who may be able to survive and lead better lives because of this.


  1. As usual, Sally, well said.

    I don't believe in luck.

    I think it is important to give understanding (over judgment) to parents who are less capable (vs. unlucky) and elect to place their child in an institution. Meaning that of the few children as extreme as Maggie, fewer of their parents are as capable as you and your spouse.

    I like how you use the word 'fiction' and find the term 'institutionally deemed' just another semantic that makes services possible.

    Will new law make Medi-Cal available to more of the less-extreme children?


  2. Thanks, Barbara. There are days I don't feel very capable at all.

    I don't know how the new Health Care will effect state insurance. It could have a negative effect, but I don't know. It's such an unusual situation, it's not really being adddressed. Hopefully it will take more low income or unemployed people off the state insurance because they will have to get regular coverage - meaning those like Maggie might be able to access more services. Of course I don't know how they are supposed to pay for that, but time will tell.

  3. Hi Sally. I did not realize that among Maggie's many accomplishments and distinctions, being SF's first institutional deeming child was among them. Liz was "deemed" at about age 2 and at the time we did not have employer-based insurance and no individual plan would insure Liz (and frankly, I don't blame them). Medi-Cal is a great program with a wide range of services. Further cuts are inevitable but it will continue to serve as a safety net for uninsurable medically complex children like ours.


Hi Maggie loves your comments. It may take a while for the comment to post, but you will see it eventually.