Ramblings on healthcare, medical education, and life with a spinal cord injury
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A Bombshell and the Magic of Medicaid

Often times I think about how regularly I post to the blog, and wonder if I should post more often. Maybe more regular posts, but smaller in length. It would be easier to digest and easier for me to write. But then I ultimately come to the conclusion that posting every couple of days would just be too often and not provide enough fodder for quality posts. So I post once every week or two (well, it’s been once every two weeks lately) and wind up having more to say than I’d realized. This whole act of blogging is incredibly cathartic, as you might expect, and the process of organizing my thoughts to write really helps me to deal with everything.

A lot has happened in the two weeks since I posted. Crawling is still an integral part of my therapy, and last week I picked up a significant speed gain. When I lift my knee and contract the hip flexors to bring my knee forward, I’ve started really almost throwing my knee forward. When Kristina saw it, she was quite surprised. Having heard that I was crawling but never been home to observe it, she expected the short, choppy movements from the first time I tried to crawl. Now I’m crossing the 15+ foot floor with strides that belie the severe damage that was done to my spinal cord. I think I’m ready to start taking on a few babies – maybe even some that are a few months old.

Three weeks ago, I went to a follow-up visit with Dr. Anant, the neurosurgeon who put my neck back together again. I hadn’t seen him since I was discharged from Lutheran Medical Center to Mount Sinai in early February. At that point, both of my arms and hands were incredibly weak, I couldn’t hold my body upright when sitting, and my manual dexterity was significantly weakened. I certainly had no movement in my legs, and the prognosis was bleak at best. Many of the medical staff, unbeknownst to me, felt the likelihood of my walking again was very low. Even when I arrived at Sinai, the assessment was the same – there’s always a chance for things to return, but walking? Statistically not very likely.

When I showed Dr. Anat how much my legs were moving, and his examination revealed the significant return in upper body strength, he was ecstatic for me. He said the progress was amazing, and he was very optimistic about my chances of walking again. “It may take two or three years, and you might need leg braces or something to help stabilize your ankles, but things are looking good.”

Such a positive opinion from a skilled neurosurgeon was worth a lot in my mind, and really lifted my spirits. It really made me think about how far I’ve come in the five months since I was injured, and how much progress is still yet to be realized. It felt good. It felt better than good.

Then he hit me with a bombshell. “This is all incredible. Now you need to get into Kessler as an inpatient for another six months.”

Wait, what? I was just discharged a month ago and I’ve just gotten adjusted to life on the outside again. I’d lived in the hospital for four months. I still remember what it was like to have no less than five different people each day see me stark naked for one reason or another. I had just spent a month in the hospital trying to locate a new apartment to live in while simultaneously being a full-time patient. I’d coordinated a move of my entire apartment (thanks to Kristina and some friends of mine) from the hospital. I’d just completely restructured my entire life from a hospital because the doctors all felt I was ready to go home, and now I need to completely undo it all and check into an inpatient facility in New Jersey?!

For days after, I was shellshocked. The thought of living in a hospital in the suburbs until Christmas, far enough outside the city to make it difficult for people to visit, was further from what I expected than I thought possible. I literally had no idea how I was going to manage it all. But I did my best to follow his recommendation, and made the calls to see if it was truly an option.

While in Mount Sinai, I submitted a Medicaid application. Since I can’t work and private insurance only pays out so much, I needed Medicaid to keep me in Sinai for more than one month. Yes, my private insurance only provided thirty days of inpatient rehabilitation, regardless of my actual medical condition. Thankfully, Sinai took my Medicaid-pending status for payment of my hospital bills. If they hadn’t, the costs would have risen to well over $300,000. I’ve seen the claims they submitted. Mount Sinai has a Medicaid office on-site, and they were able to file the application that I had an attorney prepare for me.

The problem with being Medicaid-pending is, while the place that submitted it for you will take it, pretty much everybody else will refuse it until you are Medicaid-approved.

I called Kessler and managed to find my way to the inpatient coordinator. They said that since I’d already been discharged from another inpatient facility, I would have to schedule a visit to Kessler for an evaluation. They seemed dubious of my need to be checked back into inpatient after being discharged, but when I explained that my neurosurgeon had told me this is what I need to do and would provide documentation indicating that, they agreed to schedule an appointment. But first, we needed to figure out if it could even be paid for.

Yes, they take Medicaid. But not New York Medicaid, since it is out-of-state. I spoke to my Medicaid attorney, and he told me that out-of-state services CAN be paid for by Medicaid if the services are unique enough as to be unavailable in the home-state. I shared this information with Kessler, and they said all they would need is a letter from NY Medicaid stating that they would agree to pay for services. Unfortunately, I later discovered from somebody in my attorney’s office (and not my attorney himself), that such a letter can only be obtained once you are Medicaid-approved. Not pending. If you’re pending, do not pass go.

So with my insurance already drier than the Sahara and Medicaid not an option, Kessler was not an option. I had already tried to locate a suitable outpatient facility in Brooklyn that was covered by my insurance, to no avail. And of course, none of them would accept my Medicaid-pending status. The only facilities that were in-network for me had little to no experience dealing with patients with spinal cord injury, and I need specific expertise for rehabilitation.

Since then, I’ve been in touch with Mount Sinai and it looks like I will be returning there as an outpatient. It’s a hike from my apartment, and it will be a pain to get to, but they have a very ample facility, extensive equipment specifically geared towards SCI rehab, and most importantly, they are staffed with therapists and physiatrists who deal exclusively with SCI. So I will get the care that I need there. This is becoming increasingly critical, as the in-home PT that I’ve been receiving up until now is also almost out of insurance coverage. I haven’t started yet at Sinai, but I expected to have an appointment within a week or two to begin the intake process.

Medicaid and insurance have sucked up a LOT of my time during this whole process, and added an unnecessary level of stress. I also find that the majority of people involved in providing care (physicians, therapists, nurses, etc) do not have an intricate knowledge of how the process works. Not that they should – their jobs do not involve advising on the intricacies of the public support system. But when I explain to them how difficult it is to get things processed or approved, they all seem shocked. Medicaid is supposedly easy and a quick approval if you have zero financial resources. And I mean zero. The minute you have a few dollars, it’s suddenly a whole different ball-game. As usual, the very poor and very wealthy are fine, but the vast majority of us in the middle are the ones that suffer. But I digress, and this isn’t that kind of blog. :)

Next time, more pleasant news on some exciting therapy I’ve done lately.

Oh, and I’d like to say a big hello to everybody visiting from the Case Western community! For those that don’t know, Case Western Reserve University is where I will be attending medical school next year. I can’t speak more highly of the school, and I’ve felt welcomed there from my interview day. Even when I was just a lowly applicant who had a question on his secondary, Mrs. Rosenblum was genuinely kind and thoughtful to me on the phone.  Heck, after I was accepted, my interviewer offered me a spot doing research in his lab. Since sharing the details of my injury with the admissions office, they have gone out of their way to make me feel welcomed by the Case community, and that Case will do whatever it takes to ensure that my injury does not prove too significant a liability to complete the curriculum.

And the notes I’ve since received from students have been awesome to read as well. I’m really glad to he calling them my colleagues next year.  Although as a native New Yorker I never thought I’d say this, I can’t wait to move to Cleveland next year.

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