One Less Thing

This entry is from Linc’s dad Sam.

Parents worry for their children. We all do. Yours did. You do (or will). It’s written into our genetic code. We worry whether our children will be safe, whether they will rise above ridicule, whether they will be decent people. We worry whether or not they will find happiness and joy.

But Linc adds just a few extra of those worries onto his parents’ shoulders than his ‘typical’ brother. Liz and I wonder whether or not he will ever drive a car, whether he will ever marry, whether he will ever be able to live without the constant assistance of another person. We wonder what will happen to him when we die. Trust me, the list goes on and on.

But recently we were marvelously relieved of one of these crushing worries. As of September 23rd, Lincoln will never be denied health insurance coverage due to his pre-existing condition of Down syndrome. The Health Care Reform Act (HCR) has lifted this looming guillotine blade from our necks.

Since this is not my blog, I will refrain from unleashing the full weight of my political opinions on this subject, but this blog is intended to raise awareness of what life is like raising a child with DS, and this is a big part of that.

The provisions of the HCR are on a staggered timeline. A few weeks ago, the first of the provisions of this new law went into effect. It states that children are no longer allowed to be dropped or denied coverage by health insurance companies because of a pre-existing condition. Until that moment, they were all subject to the whimsical control of corporate America, which had heretofore operated blissfully free from any legal or moral obligations.

No longer.

For generations, families of children with DS have had this worry looming over them, and with good reason. Some medical professionals make the case that people with DS have suppressed immune systems while others argue that their physiology (lower muscle tone, inherent heart problems, less steeply angled Eustachian tubes, etc…) is the culprit. But whatever the reason, they do tend to get sick more often then ‘typical’ people. As a human being and as a parent, I would think this should have been a reason to provide an even greater degree of health insurance to these individuals. It’s not as if they are chain smokers or Hollywood stunt men. They were simply born. Corporate America, however, has traditionally disagreed with my assessment.

Even though Down syndrome is not a disease to be cured, it has always been used as an excuse to deny these people coverage if they begin tipping the scales of the cost/benefit analysis too far against the favor of some of the world’s wealthiest companies.

Families have been forced into bankruptcy over this issue. The case can be made that children have died over this issue. This provision in the HCR law ensures that this should never happen again.

I recently was debating the merits of this provision with someone whose argument was that forcing a health insurance company to cover someone with a pre-existing condition is like driving a car with no insurance, crashing it, and then calling StateFarm to have it covered after the fact. There are a few logical problems with this argument.

The first problem is that people are not machines. My son should not be treated like a commodity whose smooth operation can be statistically wagered upon. Nor should your son, or daughter, or anyone else’s.

The second problem is that Linc’s pre-existing condition actually pre-exists his very existence. The moment his first cells split in two, Lincoln had DS; not the day he was born, not the day he implanted in his mother’s uterine wall; but the instant his first cells divided. He didn’t develop a disease, or break his hip in a hiking accident. He was just conceived. This has always been enough to make him a pariah in the eyes of the world of health insurance companies.

The third problem with the ‘wrecked-car/after-the-fact’ argument is that he IS (and many children like him are) covered under insurance, but our insurance company was not legally bound to honor that coverage.

Now, let me just take a moment here to say, “Thank God for Liz, and thank God for the University of Texas and their wonderful health care plan!” When Linc was hospitalized at the Dell Children’s Hospital last February, our insurance took what should have been a devastatingly expensive experience and made it (through the help of family and the kindness of distant strangers) financially manageable. But (and this is the point) they did not have to. At any point during that ordeal, we could have been denied coverage because Lincoln had a pre-existing condition.

The problem with the argument against HCR is that it conjures up a faceless, aggressive, malicious perpetrator, “Big Government”. Never mind that “Big Corporations” have historically been far more destructive to the American citizen than their government (let’s exclude the Civil War for the moment). The problem with the case against HCR is that the only faces that it is willing to attach to the issue are those of Bill or Hillary Clinton, Speaker Pelosi, or President Obama. But theirs’ aren’t the true face of this issue.

This is.

That is what a liability looks like.

At this moment he was struggling to breathe. His lungs weren't properly oxygenating his blood, so he, quite literally, felt like he was drowning. You and I look at him and think, “What can be done to help him? He looks so miserable,” while insurance companies have historically looked at that picture and said, “Now wait, how many chromosomes does that kid have again? Uhm, we don’t think we want him on our rosters anymore. Thanks for all of those premium payments though”

There is something fundamentally wrong with that way of viewing humanity. And, thankfully, it is now illegal.

Now, I am not happy with everything in HCR, believe me. I won’t go into all the pedantic details, but I would love to have a conversation about this with anyone who has the inclination. But this blog is not about all of the sterile, cerebral arguments about over-protective governments or money-grubbing corporations. It’s about our family, and the day this bill was signed into law was a very good day for us.

We will always still worry about Lincoln. Will he be mainstreamed in his school? Will he ever be able to go to college? Will he be able to find and keep a good job? The list of our worries is long and growing. These things can keep piling up. But we don’t have to worry any longer about whether or not he will have health insurance.

So that’s one less thing.

And that feels really nice.

-Sam