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Graciela Tiscareno-Sato

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To SCOTUS and President Obama- My Uninsurable Child Thanks You

Posted: 07/05/2012 9:56 am

No issue has ever drawn me into a two-hour debate on Facebook; last week's Supreme Court announcement upholding the Affordable Care Act did it.

Voices of parents raising children born prematurely, or with disabilities, have not been the loudest in this debate. I want us to be heard now so that those of you clinging to old, Tea Party/Limbaugh-inspired rhetoric about how you have lost something (you know who you are), that it's violating your individual freedoms, etc, can begin to realize that this decision is not about you. This decision is about my child, about a child you know, about a child or grandchild you might someday have, and about millions of others who are rejoicing with the recent SCOTUS decision confirming the constitutionality of the ACA.

First, a quick thanks to recognize the wisdom and courage of Chief Justice John Roberts on this, and the four others that voted with him. We parents of children with special needs are rejoicing today and are significantly less fearful of the future.

Why? My first child was born into the world weighing one pound two ounces, at 25 weeks gestation -100 days too soon. We thank you because:

- You upheld the individual mandate under congressional taxing authority - a smart move to ensure Americans of its constitutionality and make it clear that choice remains, whether they love the choices or not.

- Because you upheld two provisions that, had you struck them down, would have forced us to relive nightmares already lived -- like when my daughter was dropped from my employer-provided coverage after reaching the "lifetime maximum" on day 82 of her life, two weeks before her due date, while still hospitalized in the NICU (a journey that would last 137 hellish days.) Because you upheld this key provision of the ACA, other mothers and fathers won't have to go to the extremes I did to keep her covered, extremes that included threatening to kick my own employer and our insurance company in the PR nuts to keep her covered, stressful stuff like that.

-Because you upheld the provision that protects my daughter from corporate entities that called her "uninsurable" to my face. She was uninsurable because she had five surgeries after birth just to save her life, and a tiny bit of her sight. She was deemed uninsurable because her medical history includes "lung disease," (scarring) which developed when a ventilator was used to save her life in the very beginning when she barely had functioning lungs. Those faceless insurance companies didn't want to take that kind of risk on insuring her, even though she's a super healthy kid now. She just doesn't see beyond light and shadows. But she's damn good on snow skis and getting better in the pool. Thank you SCOTUS.

Not everyone is happy with the decision of course and that's why I spent two hours on Facebook expressing my joy and encouraging them to read beyond the headline. From military friends I saw stuff like "SAD DAY IN AMERICA...R.I.P Freedom" linking to the story. Thoughts like "As military member(s), we live, fight, and die for INDIVIDUAL FREEDOMS, and the right to be free from tyrannical governments imposing their will on you with an Iron Fist!"

As a military veteran myself, I offered this soldier three ways to think about it, hoping it might help him (and others) in some way:

1. As a military member with all healthcare benefits provided, you have already happily surrendered so many individual freedoms to serve haven't you? Freedom to wear your hair as long as you want? No. Live in base housing and want to let the grass grow to 12" tall? No. Want to attend your friend's wedding that takes place 3 weeks after your deployment date? Sorry. Want to use your freedom of speech to tell the major to go *!&! himself? No. Shall I continue? You love the will imposed on you or have at least come to accept it; it's this President you love to hate, yes?

2. You have a choice: buy insurance (pay a private company) or pay a fine/tax (to the government) into the pool of money you're going to use when you are in a car accident and end up in the emergency room with no private insurance. Easy, choice is preserved. You do your own math, choose your risk and live with consequences. But, now you're required to take personal responsibility to prepare for that contingency and not free load when your gamble goes against you.

3. Use the social security analogy - you have no choice but to pay, because you will very likely use it someday.

One of those approaches will hopefully help many get over the whole loss of freedom rhetoric they've subscribed to, now that this has finally been ruled constitutional. You don't have to love it. Who loves paying Social Security taxes? Yet we know we must and that we'll likely benefit as we age. Now this thinking can be applied to healthcare insurance coverage, but you still have a choice.

Let's try to read beyond the headlines. Let's return to appreciate the very real benefits that children (17 million kids alone) and adults with "pre-existing" conditions can now breathe easier, as I'm today. There's a little girl in my life that is blind, wears hearing aids and has other medical needs you can't imagine -- so just trust this mother on this point. The Supreme Court has ruled that they too must be insured by insurance conglomerates, who before were happy to drop them, and healthy people when they become sick. And their coverage won't end, as it did when she was born, when some random number, some maximum, is reached. Human bodies, disease and disability are all unpredictable.

Kara Ramirez, another mommy raising a premature child that I connected with in the Facebook group called It's a Preemie Thing, posted, "Thank you Mr. President for ensuring my daughter, who has several preexisting conditions, the ability to be medically insured for the rest of her life. It doesn't make sense to me how people can be denied healthcare based on numbers on a paper or what they've been through."

One of her friends eloquently stated, "I am finding those that are opposed are misinformed about the topic." BINGO.

For the invincible "I shouldn't be required to buy insurance or pay a fine because I don't need it" crowd, who can pay but would rather stick the cost of their care to the rest of us, I offer this thought: Project your mind into the future day when you will be sick, in a likely car accident or simply old and worn out. That's the day you'll look back and begrudgingly thank our President for his leadership on this, even though you'll hate it. You'll also realize then that these actions likely helped you avoid bankruptcy due to medical bills. In fact, I remember a CNN article titled "Medical bills prompt more than 60 percent of U.S. bankruptcies," that you should read if you're still screaming individual freedom violation.

Lastly, if you have no children yet and do plan to reproduce, I wish for you supremely healthy offspring someday. But if something out of your control should intervene (genetics, fibroids, mysterious premature birth, childhood cancer, any one of many syndromes, etc) and you bring into the world a child like mine, you too will look back and thank all three branches of our government for getting this one right.

 

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