The Politics of Pressure Support

“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.


  1. So good to hear from you Eric. Even if it is a political post. Which isn’t an easy topic to write about. That and religion and by golly didn’t we both hit those two topics today. Yours so much more important then mine. And so well written and so spot on. That is for sure.

    We are for sure a family of “those people”. We are a family who had social worker from hell in the NICU and were told we made too much and looked into nothing else for us and we got screwed. And lost the house and so on and so forth. We have the waiver now for Zoey thank goodness, but what will happen if the current healthcare reform is revoked? What will happen to a family like us with a child with a list of pre-existing and over 1 1/2 million of her lifetime cap already met at 5 years of age? I don’t want to find out.

    We are 2 that represent many. How are we heard? Who will listen? Does anyone care?

    Again, great post. Hope you all are okay considering the storm and all. We here have been battling one thing or another and Miss Z, hit harder then hard. Her gut just so fragile. Last night her belly was so bloated, her ribs could not be seen, her diaper could not be closed. Scary.

    Best to you all from California.

  2. Fantastic post, and not just because you’ve preached to this choir. I am posting this on Facebook and directing my blog readers here, too. I think you explicate issues that even the most die-hard Obama supporter might not realize. Thank you, Eric.

  3. Wow. I have a Liam, now 12, who spent two months in the NICU because he weighed 1.10 at birth, six weeks early. We never saw his total bill (I probably would’ve passed out) because we had “good” insurance that covered his care almost entirely. But the life of a child shouldn’t hang in the balance because of different insurance policies. I hate to be all judge-y (okay, actually, I don’t mind so much) but why would anyone vote for someone who thinks it’s fine for the least capable among us to be left to fend for themselves? That’s not a civil society; that’s survival of the fittest, the thing that theoretically we’re supposed to have evolved beyond.
    Oh. Wait. I forgot. I guess if a person doesn’t believe in evolution then we ARE living in a dog-eat-dog, rich-get-the-goodies sort of world. But then again, if you don’t believe in evolution, then you may well believe in Christ-the-savior, and correct me if I’m wrong, would the late, great, J.C. really think that dog-eat-dog is how things are supposed to work?
    Great post, although I’m sorry as hell that you have had to live through the story you tell so eloquently. It’s not just “policy,” absolutely not: it’s people’s lives hanging in the balance.

  4. Eric, I happened upon your blog through Varda. This story is very much like my family’s story. We hit the lifetime cap by the time our son was two. He is nearly nine and we’re pretty sure we’ve at least doubled that.

    Thank you for finding the words to convey what so many of us surely feel about such a broken system and a frightening future possibility. The irony in my story is that my husband and I were both staunch Regan Republicans before our lives changed so dramatically…and yet, I wouldn’t undo any of it.

    I wish you well and look forward to reading more of your family’s story.

  5. I can’t begin to imagine what you’ve gone through, and I’m glad you’ve found some resolution. Yes, the health care industry is in need of reform. Obamacare is NOT the answer! It is the most convoluted rubbish I’ve ever had to try to decipher – including a myriad of health insurance policies. Please READ IT before you support it!

    I also try not to post on politics often, but I’m feeling your story, and finding your point so misled.

  6. Thank you! Thank you for taking the time to articulate the impact of the election on your family’s lives and ALL of our lives.

    1. I can completely understand what you went through as my daughter is on the Katie Beckett waiver after 10 months in the NICU. Unfortunately, anyone who thinks voting for Romney will stop or change any of their Medicaid benefits is completely wrong. Read Romney’s and Obama’s plan. Don’t listen to the lies and manipulations spread on tv commercials. Romney wants to help get people jobs, not take benefits away. Read the facts as they clearly are important to you!

      1. Fact: The R/R plan is to ‘send the money to the states’, ie, to block grant Medicaid and index it to the growth of population, not to the rate of medical cost inflation. That means the amount of money available for Medicaid will decrease relative to the cost of care over time. Which means services will be cut. Period. Will this plan ever pass? Probably not. But that doesn’t change the fact that it is their plan, and it is not a good one for children and families (like ours) who depend on this ‘entitlement’ to keep them out of medical bankruptcy due to situations almost identical to the one described above.

  7. Saw this via a friend–just shared on FB. I live in Maryland (also not a swing state), but maybe some of my friends who are thinking about staying home will be persuaded to go out and vote. Beautifully stated; thank you.

  8. This brought tears to my eyes. Thank you for sharing. My family is also a family of ‘takers’. My husband was diagnosed with Type 1 diabetes when he was 13 months (MONTHS) old. In 2009 he had a kidney transplant. God willing in 2012 he will have a pancreas transplant. You need not be a financial wiz kid to realize that transplants are expensive. You need not be a doctor to know that organ transplants do not last forever. As soon as 2019 (or sooner, God forbid) my husband will require a 2nd kidney transplant. And again every 10-20 years for the rest of his life. He’s 32 right now…who knows when money or doctors or our insurance company will say “You’re old enough now, we’re going to allow you to die.” It could be in his 40s, 50s…60s. Who knows? We pay our health insurance premium just like everyone else every 2 weeks but if Mitt Romney gets his way we may or may not get to use it when we need it.

  9. How sad, I to in my life time have had to asset down to get coverage and it works and you can come back from it. The Problem with Obama Care is once you take the hook government will real you in and limit the care you will receive by the Medical board of trustees. The worst part is we will not advance our health care as a government provided health care. Our great private research for new medical treatments and medicines will be greatly curtailed. We may not even see the great care facilities we have now in the near future. If your getting Medicaid for your child but still working and paying your tax you are not part of the 47%.

    1. I beg to differ. My understanding is that if he is getting back (that is, a refund) more than he gave (through out the year, from his paycheck) when he files his taxes, then he is indeed among the 47%. (As am I.)

  10. I too have a medical needy son. I understand about the lifetime caps and pre-existing conditions. For those reasons I like Obamacare and believe Romney/Ryan understand the need for those also. I however am with Dr. John. I am fearful for my son’s future if he needs surgery again. I want to be the one to decide if he gets the surgery, not some medical board of trustees. I don’t want the board to decide if my son is worthy of the surgery, they don’t even know him. They will only be looking at a medical record. If you want someone else to decide your child’s medical care, than you should vote for Obama. I for one am a parent who wants to make that decision.

    1. What doesn’t make sense here is that the worry about a “medical board of trustees” making medical decisions for you is limited to the government. But the same decisions are made with private insurance. The difference is, every cent that insurance companies can shave off by denying or limiting coverage goes back to the shareholders, while the government saving money by limiting unnecessary care is somehow draconian — even though it means decreased expenditures and in theory reduced tax burden.

      The fact of the matter is, we are all shareholders in the government. When it makes good decisions (e.g. reducing costs for medical imaging, pharmaceuticals etc.) we all benefit, instead of the same exact decisions being made by Anthem or Aetna or BC/BS etc.

  11. You have a reader in Texas and I’m praying that Obama is reelected for Liam’s sake and many others facing the same trial.

  12. I’m in RI as well with a preemie who required a vent/trach the works and out only support is Katie Beckett. I’m not blog friendly but I’d love to get to know you better. Perhaps you’d be a support for us. Also, I have shared this!!

  13. Please don’t take this personal, but speaking as someone who has lived below the line that defines the middle class..why is it people think they have some kind of right to own a home? It breaks my heart if you have a child with a life threatening medical condition. But Obamacare forcing my company FUNDED insurance HMO to cover the cost, with zero lifetime cap, makes MY own health insurance cost rise to almost 10k a year, not to mention what it actually costs my company. Thankfully, I have Kaiser as an option now and it only costs me 5k a year personally, but I have always understood healthcare. When I didn’t have $ to pay for my son’s pediatric opthamologist, I knew I might have to choose between preserving his sight and making a comfortable wage. With what I spend on healthcare now, I could get an apartment, not just live in this studio. You already mentioned the social workers salary, so you might agree that your son’s care should not have cost 2 million. I’m just saying there is another side and just forcing everyone to pay is not a solution to fix the system. I know a nurse, a mother of 6 kids who makes enough $ to work for short periods, live in Cali and take months off at a time. There is much to be done to fix the healthcare issue and Obamacare does very little to address the root problems.

    1. You mention forcing everyone to pay is not the solution, but that is essentially what Romney did in Massachusetts. My, my, how his ideas have changed in such a short period of time.

      1. Kelley you can forget Romney exists…officially even. Read Sharon’s reply as well on the things I didn’t mention about recent healthcare increases (my insurance went up over 30% …after Obamacare was enacted…but before “rate increase review” protections were added (which don’t even apply in Ca) Also personal tax increases ON medical care! I guess you don’t have a flexible spending account. The only people I know who paid for fulltime childcare were not even “middle class” and yet we can’t deduct those expenses anymore AND we are now limited to only $2500 to set aside for medical as tax deductible. Literally right now..for those that PAY THE MOST OUT OF POCKET like Sharon, they have already had a tax increase ONLY on what they spend on medical expenses. It makes me want to vomit, and now there is almost no chance this law will be repealed. Thank you Sharon for sharing how it affects you and so many of the rest of us already.

      2. This reply is to Michelle…actually, I don’t have a FSA, as I am on Medicare/Medicaid because I am disabled. I have had rheumatiod arthritis since I was 10. Talk about a pre-existing condition. I go every 6 weeks for an IV treatment that costs over $13,000. If I didn’t have Medicaid I would have to pay 20% of that. I don’t make that much on disability!! While I do make more than most, it is because when I did work, I worked my tail off, and I literally worked until I absolutely physically could not work anymore. Believe me when I tell you, my doctor is not that nice that he would fill out the paperwork if I was able to do anything at all. I have been on this medication for over 10 years now & have seen it over double in cost. This medication has kept my disease from turning me into a cripple. I feel for those that have medical expenses that they can’t pay. If it weren’t for the government I wouldn’t be able to pay mine.

  14. I am going to post on the opposite side and feel free to delete if I offend. I am a single working mom of 3 chronically ill boys who all have mitochondrial disease. While not on vents they are 2 on feeding tubes life sustaining. My boys are 15, 15 & 19. I have been lucky I have never accepted a job with a lifetime cap. Yes 2 of my boys have Medicaid waivers as secondary, the oldest gets SSI. I make a good income and pay for insurance thru payroll deductions. Last year my cost went up $800 a year and this year they are going up $1000 per year. Also my deductibles & out of pocket costs have doubled this coming year. My co-pays have gone from $35 to now 20% of bill. In addition whereas last year I put $7500 in my FSA I am now limited to $2500. Also before I can deduct med expenses now on my taxes it will now have to exceed 10% not 7.5% because of new rules under Obamacare. The amount we can put into FSAs was limited to pay for Obamacare at least some of these costs. The ACA will cost me $5000-7000 more in taxes this year that is not fair. I am not rich by any standards I am middle class & sole support of my boys.

    While I agree there is reform note not ALL parent of chronically ill kids love Obamacare. For many of us it is going to hurt us. And when and if the states have to add all these people to the Medicaid rolls I can guarantee the disable kids itch waivers will be the first ones cut

    1. I feel for you and your children and anybody with any illness, chronic or not. I will repeat my previous reply: Romney did to Massachusetts exactly what you fear. No, no disabled children with waivers were cut, nor do I think what he did was a bad thing, but he DID require everyone in the state to have health insurance, and if you didn’t, you lost your standard deduction. If you are an employer, you are required to provide it to your employees, and if you don’t you are fined. (Not enough to care.) In turn, if your employer does not provide it to you, the state now has to. I don’t bet, but if I did, I would say that Massachusetts is one of the states with the highest percentage of its residents on Medicaid

  15. Thank you for this! I have been trying (without much success) to explain to my mass of Republican friends why I refuse to vote for Romney/Ryan. We are a family with two special needs children (ages 3 &5). We can’t afford for Obama to lose. I reposted this on my facebook tonight.
    {This article is amazing and best explains the primary reasons WE WILL VOTE FOR OBAMA tomorrow. I urge my friends and family that question our decision to read this and know we are also this family. We are in the same place as them… “we are the takers.”}
    Thank you again. God bless you & your family! (Hugs from Wisconsin!)

    1. Mark, I do not know you but I would be willing to bet you don’t work half as hard as Sarah much less her husband and entire family. Passing judgement on those we do not know is cowardly at best. I may not agree with all the other posts related to this article but at least they have a commonality. They try to constructively convey their beliefs, not just criticize someone else for for theirs.

    2. I’ll pray for you that you never have a chronically ill child. Karma will come back and bite you in the ass Mark.

      Also, your mother did a great job with you, or maybe your mother wasn’t around to teach you any manners. At least Sarah is. Call her what you want, but I’m sure her children won’t ever speak to some the way you just did.

  16. I do have one thing to say we need to watch out for with obamacare. When it goes in to effect some companys the currently offer insurance are going to stop and just pay the penality and force their employees to find private insurance. My husband was told this in a conversation with a corp HR person. My husbands response was that he would find another job if they did it. We also have a disabled child and I don’t think it’s possiable to find a private insurance we could afford that will cover her needs.

    1. But the point of Obamacare that you are missing is that even if your husband were to lose his benefits provided by his job he would be able to get more affordable health care because ALL of the people getting private insurance would be able to do so through a collective of your state driving the prices for that benefit way down.

      Obamacare will be a boon to small business because people who have been dependant on their job for their benefits will be able to have more affordable options in the private pool once those collectives begin in 2014. I know many people who are planning their 2013 to prepare for leaving their jobs to start their own business or becoming freelance artists/designers/writers because of the fact that in 2024 they will be able to get healthcare in ways never before possible in this country.

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