My letter to Medicaid, appealing my child's Medicaid denial

2021/06/17

RE: Sterling Raspe Medicaid Financial Ineligible & Notice of Dismissal

To Whom It May Concern:

As a taxpaying citizen of the State of Indiana, I was under the impression that the State would be there for me and my family during our times of need. Unfortunately, I now know otherwise.

My daughter, Sterling, was born on September 8 2020. She was diagnosed with a very rare heart condition at her twenty-one-week scan, a condition considered to be incompatible with life outside of the womb. The State of Indiana forced my wife and I to decide, in just a few days, whether or not to continue with our pregnancy—a horrific decision that no sane person could easily make. I thought the State that claims to care about children so much would care about my child throughout her life. Unfortunately, I now know otherwise.

Sterling was in the ICU across town—and state lines—in Illinois, the closest facility to our home in Gary, Indiana, for seven of her eight months on earth. In addition to her heart condition, she received a new severe diagnosis every week, until at three months of age, she was ultimately diagnosed with an incredibly rare genetic condition called Kabuki syndrome. The odds of her heart condition and Kabuki syndrome occurring simultaneously are between 1 in 700 million and 1 in 2 billion.

Kabuki syndrome did a number on Sterling; she was highly affected by the condition. For instance, Sterling was severely immunocompromised, her tiny body far more susceptible than most to infections. To help protect her, she received weekly injections into the thin layer of fat in her thigh to give her a temporary immune system, and for ten long minutes every week, my wife and I watched our daughter squeal and cry in agony as she received these painful IgG treatments. Thankfully she only received a few.

Sterling had severe hearing loss, which, despite the raft of other challenges she faced, was about the only thing that qualified her as being “disabled”. She was severely hypotonic—a debilitating condition where the muscles lack their normal tone and shape—and in the last few weeks of her short life she was barely able to bring her hand to her mouth. Sterling had severe hip dysplasia and spinal cord abnormalities, and had she survived would very likely have had difficulty walking, if she had been able to at all. She was both G- and J tube- fed... the list of problems and indignities she faced goes on and on.

During Sterling’s time in the PCICU at Advocate Children’s Hospital in Oak Lawn, due to rising COVID-19 infections, Illinois initiated a Stay-at-Home order, and my wife and I were confined to our daughter’s ICU room, and the local Ronald McDonald House a few minutes away. We weren’t allowed to go grocery shopping, or visit any place other than her room, or our room. Our home in Gary, Indiana, was considered a “hotspot”, so we were prevented from returning there, which meant that I wasn’t able to check the mail at my house. Unbeknown to me, the Medicaid application has a deadline, and to make a valid claim, all information must be completed and received before that deadline. I understand the rush on my part—with the care and treatments Sterling required, the costs were mounting quickly and were only going to climb even higher—but why the need for this initial deadline on Medicaid’s part? It did nothing but add further stress to what was already an incredibly distressing situation.

My wife and I spent hours looking at the in.gov website, talking to friends and family, talking to the ICU social worker (who was only familiar with Illinois laws), contacting the local FSSA department, and conducting endless searches on Google and in Facebook groups, etc. about what Sterling was entitled to; as it turns out, there wasn’t much.

The State that supposedly cared about my disabled child as a fetus, forgot about her disability the moment they realised my W2 income and tax document showed that my earnings were above the poverty line. I was also told that before Sterling would be accepted into Medicaid, I would need to spend the GoFundMe money in my savings account. I had no issue with this in principle. This was money we had taken the initiative to raise ourselves to help towards her escalating medical bills. But it was never going to be enough, and some of it we had put aside for her funeral expenses; yes, my daughter was only weeks old, and we had already been forced to consider the worst and plan for her funeral. Can you imagine that? To then be told that even these funds were not sacred was a real kick in the teeth.

In applying for Medicaid I was asked whether my disabled six month-old bedridden child was “anxious or depressed” and if she “lives a meaningful life”; my personal favourite was, “does she earn an income”. I was asked how I earn and how much I have in my 401(k) pension plan. At a time when I shouldn’t have had to worry about money, I was worrying about money.

The State forced me to waste many precious hours of my daughter’s short life away from her, on menial tasks such as printing copies of my bank statements, 401(k), savings and car documents, stock certificates, etc. I will never understand why Medicaid needed to know how much I have in my retirement account, as a 30-something-year-old, when I was applying for assistance on behalf of my disabled child.

The Medicaid application was painful and fraught with what felt like irrelevant questions, and unnecessary demands. Why should I have to hire an Elder Law attorney? Why difference does it make if I own two cars and have private insurance? Why did you need to know my 401k balance? With medical bills in the millions of dollars, why was my fairly standard salary even relevant?

Surely a diagnosis is all you need to be “disabled”.

Unfortunately, I now know otherwise.

I wasn’t asking for a handout, but some recognition of the specific circumstances we faced would have been appreciated. Something like, “Hey, don’t worry. We understand that your daughter has a lifelong disability, and we know you’re likely to max out every year’s out-of-pocket maximum, deductible, etc. And we get that there’s likely still going to be a lot of unexpected costs associated with your child’s care—such as the suction machine, oxygen rental, prescription medication, hearing aid replacement, and plenty of other things that are either under covered or just not covered at all by insurance. We know that your wife or partner might not be working or receiving any income or benefits, and that you, the sole provider for the family, must never, ever, slip employment or lose your private insurance, just in case your daughter needs another major open heart surgery, or other critical procedure. Don’t worry, we’ve got your back. We can’t do everything, but we can do something...”.

But there was nothing. All I got were impersonal personal questions that felt like searing insults to my efforts to provide a decent life for my family.

The private insurance provision was, in truth, no less disappointing. Sterling was admitted to the ICU on four occasions. During one of her stays she had an emergency heart surgery, in the course of which she lost twice the volume of blood in her small, fragile body. On the way to the hospital for that admission, we received a phone call from our private insurer telling us to pay $11,000 to the hospital, or to set up a payment plan. I pay $700+/month to have the lowest out-of-pocket maximum and deductible, which added together total around $4,500, so $11,000 was a surprise and a shock.

I logged in to my private insurance provider to check the figures. I saw the $11,000 bill—bad enough—but then next to it I spotted the bill for Sterling’s initial 147-day ICU stay, for which cover had been denied due to it not having been “pre-approved”. The total of that bill? A whopping $2,500,000+. The number was so big it didn’t even fit into the box. Again, during a time when the last thing I needed to be worrying about was money, my attention was distracted, this time with a bill for 31x my annual salary. I thought it was a mistake. Or a bad joke. Unfortunately, I now know otherwise.

Sterling passed away on May 11 2021 from respiratory failure due to her complex heart disease.

The day we arrived home after losing our child, my wife received a letter from a collections agency for the paltry amount of $16.50. What a lasting memory of our first few moments home without our daughter: a near permanent mark on my wife’s credit history for the lousy amount of sixteen dollars and fifty cents.

We were so saddened and distraught following our daughter’s death, that Sterling’s mom and I went on a vacation immediately after the funeral. We got back on May 31. I opened the mail we had received while we were gone, to find a letter from the “Office of Administrative Law Proceedings” with a notice of dismissal dated May 21, citing the following:

[...] the appellant did not appear at the scheduled hearing, and no evidence of good cause for failure to appear has been offered.

I would just like to offer my sincerest apologies to The State of Indiana, the Office of Administrative Law Proceedings, and Eric Holcomb himself. I apologize that my daughter’s short, agonizing life in the middle of a pandemic got in the way of our Medicaid application, and that I missed our very important hearing due to Sterling’s sudden death and subsequent funeral. It seems that, unfortunately, I mourned longer than I should have, as the response to the dismissal letter needs to be received within ten days of receipt. But, more importantly, I am sorry for the additional paperwork and resources that my daughter's application must have cost your department, and for those hours on the phone with your thoughtful, respectful, and empathetic employees who really went above and beyond for us, asking all the right questions. That is, until they realized I wasn’t poor. I can’t help but think about all those emails, and the paper, postage, and toner ink, that were wasted for nothing.

I’m sorry for wasting your time, for attempting to be a burden, for not earning minimum wage. My wife and I promise to only have healthy children from now on.

Thank you for genuinely caring about the children, especially mine.

Sincerely,
Kingsley Raspe