“I’m glad you are both here. We have to talk about your insurance.” The social worker said as she sat down next to Karin across from Liam and I in the rocking chair next to his isolette in our little corner of the NICU.
“I added Liam as a dependant when we got his Birth Certificate. I’m sure you should have gotten that information from the insurance company by now, I sent all of that in over a month ago. I can bring you the confirmation paperwork tomorrow if the hospital needs it for his file.” I said to her. Shifting in my seat while holding Liam close. He was barely 100 days old at the time.
“Well no, that’s not the problem, your insurance information is fine, the problem is with your insurance policy itself.” She said clutching Liam’s thick manila folder to her chest. It was obvious that whatever she needed to tell us, it wasn’t good news. “ It’s just that the policy itself has what’s called a “Lifetime Cap of Benefits” in the fine print. For each beneficiary there is a 2 million dollar cap. Once that cap is reached there will be no more benefits for the rest of that beneficiary’s life.” For the rest of Liam’s life. The words, just like hearing his diagnosis for the first time hung in the air in front of us as if I could have reached out and touched them.
My nervousness growing I shifted Liam in my arms again and looked at his isolette, the medicines, the ventilators and other equipment close-by (to say nothing of the doctors, nurses, therapists, x-rays, specialists) and saw nothing but dollar signs. 2 million dollars? I had no idea how long that would last.
Our hospital Social Worker (Hmm while we are at it let’s add her to the list, I wonder how much her services cost my insurance.) started to explain. “We generally wait to have this conversation with patients since we want you to focus on the health of your child until things get more stable. Liam is still not out of the woods and I know we are not yet talking about him going home but it’s time to talk about how you will pay for his care when he reaches that cap.” There — she said it. When he reaches the cap. Not if, when. We were in trouble.“Right now Liam has used a little over a million dollars of that cap, but again, he’s far from going home and since he may get transferred up to Mass Eye and Ear for the eye surgery soon, there is still a chance that he could use up all of his benefits before he does go home. ” I could feel my stomach drop and the blood rush from my head making me dizzy. “ There are some programs though that can help you, but of them are based on financial need. Have you ever heard of the term ‘spend down your assets’?”
Of course I hadn’t. Why would I? How could I possibly know that even though I was paying roughly $6000 a year for the most premium insurance package that my company offered I would be faced with the possibility of selling off any assets (i.e. house and yes even car depending on its value), using any funds I had in savings and possibly even leaving my job for one with a lower salary so that my family would be close enough to poverty to qualify for Social Security, Medicaid and other benefits that would help us survive the crushing debt we were now facing. Remember, switching insurance companies was never an option either. The words Lifetime Cap of Benefits go hand in hand with the words Pre-Existing Condition. In a country known for prosperity and opportunity the birth of a sick child was going to wipe out any chance of a financial future for my family.
But we got lucky. There was one program called Katie Beckett, funded by Medicaid, and based on medical need not financial need. If Liam was sick enough we could be covered by this as a secondary insurance, provided that we still had a primary insurance of our own. We filled out the necessary paperwork and hoped and prayed that Liam was as sick as he needed to be to qualify. Otherwise Liam would be completely uninsurable by his first birthday. What a country, hoping and praying for my kid to be sick because if he was even a little bit healthier I would be unable to take care of him at home and would be in millions of dollars in debt.
Just about a year after that conversation the US House of Representatives passed the Affordable Care Act. The Senate would go on to approve it as well and what we all know today as Obamacare was made the law of the land. Shortly after its passage my insurance company sent a letter explaining that the lifetime cap of benefits which by then Liam had already passed, had been lifted ( only because it would soon be illegal to enforce) and Liam would continue to be covered under my plan. We can talk some other time about the hoops we need to jump through for them to approve even the most life saving and necessary equipment but at least he had coverage. The Katie Beckett (read Medicaid) program would still need to cover much of what the insurance company denied. Despite medical bills topping $30,000 a month (close to 20k of that just in the necessary nursing help, the rest in ventilator rentals and medicines, and all that is a good month, don’t ask about all those other hospital stays.) things for our family were looking up. We were “takers” now. Yes, that’s right — we are the 47%!
Who we vote for matters. It matters to real people not just arbitrary numbers or large groups dismissed with a word. The takers or the makers, the undocumented or the illegals, The middle class or the working poor these are not just concepts but real people trying to make their way in this world and nation the same way that Karin, Liam and I are. The same way that you and your family are. I will admit to being cynical enough in my youth to think that no matter who was in the white house my own life would plod along at pretty much the same pace. I can’t stress to you enough how wrong I was.
Governor Romney has repeatedly promised that on his first day in office he will work to repeal Obamacare. Insurance companies will again be free to deny my family coverage for whatever reasons they see fit. The Ryan budget which Governor Romney plans to enact as president includes enormous cuts to Medicaid. A vote for the Romney/Ryan ticket is a vote to completely destroy the financial security and medical safety of my child and family. If you are planning on voting for him I’m sure that you are doing it for other reasons but these will be the consequences of that decision. You may not like hearing it but it’s the truth. A vote for Romney/Ryan is a vote that will hurt hardworking Americans like me and my family.
He said it himself. It’s on tape. In front of a room full of people who need not worry about a family member becoming sick because they can afford to pay $50,000 a plate for a fundraiser, Romney said that it’s not his job to worry about those people. “Those People” — the takers, me and my family. I have worked hard my entire life. I pay my taxes, and yes, I feel I am entitled to my government to look out for me. To protect me from predatory policies at places like insurance companies and banks but not Mr. Romney and many others like him. He looks down his nose with contempt at the 47%. Looking down at me at my wife and most infuriating of all, at my son. He looks down at us implying that we are moochers, takers, and not worth helping. We’re not real Americans. He does this from an ivory tower of wealth and privilege and when you vote for him your saying that you agree.
I’m not naive enough to think that there aren’t people who take advantage of the system and try to get something for nothing. Of course there are. I’m sure there are plenty of people on food-stamps (like us. Yes because of Liam’s complex diet and the fact that in order to take care of him it is impossible for Karin to work, we are recipients of WIC along with other government ‘entitlements’ – without them I don’t know how we would survive) who could get a job but don’t, but that is hardly unique to the lower class. Are there not also people in the middle class who cheat on their taxes? How many welfare queens (like my wife if you want to get down to it.) taking food-stamps does it take to equal the amount of taxable revenue that was hidden from the government in offshore holding companies and banks by Romney himself? This man who expects us to believe that he believes in this country, just not enough to keep his money here. I wonder who costs the government more, those lazy dishonest poor people, or the privileged dishonest rich ones? Both are beside the fact, Why should my law abiding American family be punished because a small number of cheats game the system?
But that Romney, he’s a business man! He’s a business man I keep hearing as if this great nation of ours could be boiled down to something as simple as a profit and loss statement. Need I remind everybody that so was George W. Bush? A man so revered for his leadership that only 4 years after his presidency he wasn’t even invited to his party’s national convention. Businesses worry about one thing. Profits. How to make the most profit using the least amount of resources. We are a nation of 300 million people. How do children, the disabled, retirees, figure into that equation? Seems to me they aren’t pulling their weight. Dragging down profits. Best just to ship them overseas right? Be better to our bottom line. To simplify running a nation as diverse, and powerful as ours to running a Dunkin Donuts is irresponsible and fool hearted. We are not a business, we are a Nation.
I don’t post about politics here very often. Actually, I can think of only two other posts. One the night that ACA passed the house and the other, the night after the Supreme Court upheld the law. But the closer we get to election day the harder it is to look at myself in the mirror without putting this out there. This is certainly NOT a one issue election for me. Just because I don’t post about it here doesn’t mean that I am not a junkie for political news. I could go on and on about why I believe voting for the Romney/Ryan ticket is a bad idea for the future of this country but today I will focus only on this topic that I can speak to with authority. I am sure that I can speak about it with more authority than Governor Romney and yes even President Obama. Something tells me that neither of them had the financial future of their families torn from under them because of a chronic illness.
I live in Rhode Island. We will never be a battleground state even if it weren’t so heavily democratic. Our 2 electoral college votes mean little in the road toward 270 but with this blog I have a voice that can reach farther than my Little Rhody. I even have a reader or two in Ohio. And while I would be shocked to hear that any of my angry ramblings changed anyone’s vote, I couldn’t live with myself if I didn’t put our story out there about why this election matters to us. It matters to real people like Liam and millions of other families who need help and get it from where they should get it – a government who has their concerns in mind and wants to lift up even the least of us as a society rather than propping up the only the highest. That is the America I want to live in.