I want to preface what I am saying here by acknowledging that we are beyond, beyond privileged to have good insurance, and therefore, relatively good health care. This is not true for many I know personally, and it needs to be acknowledged before I dive in. Knowing this, consider also that if this is our story, full of privilege, how much worse it is for your friends and family members who don’t have this access? If we are drowning with our level of access, how far under water are those you know who don’t? Please think carefully about how you can ally with them and care for them in the midst of medical storms.
A few people have been gently curious about why our finances are still so intensely strained. It doesn’t offend me, and I’m glad to briefly answer. Simply put, the medical debt that occurred with Elliana’s and Josiah’s first hospitalizations has been roughly cut in half. However, life didn’t stop that year and hasn’t stopped since. Josiah has been hospitalized repeatedly since; Elliana and Josiah have both required out of state trips to teaching hospitals; Elliana and Josiah have both required surgery; my husband has been hospitalized and required surgery; our special needs son was recently hospitalized. Keep in mind also, that we have a fall full of medical travel, surgery, and therapies. We have to travel either eight hours or four hours for Josiah’s care (depending on what it is), as the local hospitals here are too small to have the right specialists. Our medical debt overall has more than doubled and there isn’t an obvious end or solution in sight.
Even with a job change and an increase in salary, better insurance, and all sorts of help and intervention, we still have to pay out an intense amount towards medical costs. We live on roughly one third to one quarter of James’ income, with about a quarter of that amount going to living expenses like utilities, housing, and transportation, leaving about $400/mo for us to purchase groceries and other household needs for a family of eight (though more often, recently, it is about $250/mo due to our current copay load.) Over half of our income every month goes strictly to medical debt, and it often is more like two thirds on high needs months when payment is required up front for a surgery or hospitalization that we couldn’t plan for. The margin is incredibly thin. A sudden hospitalization can put us under water; and it’s not super unusual to occasionally have a medical bill go in to collections. We regularly cancel routine care appointments and things like needed dental surgeries (three of our children have required dental surgeries since January of this year, and it still hasn’t happened yet and James has needed dental work for 2 years now) and orthopedic surgeries (two of our kids need to have them; they keep getting rescheduled because we can’t afford it and it isn’t quite emergent yet; however one became emergent and will happen Aug 21st.) Part of these being rescheduled is because something more emergent happens in front of them- but either way, we often can’t afford routine care. This year that has been especially true. It’s been a bit better other years.
We often have to make hard choices with medical care, which means that things often go unattended until emergent and can no longer be avoided. Our copay load alone most months is roughly $350-400. Without a dear friend providing for the copays as much as they are able, we’d be even farther in the hole. We wouldn’t be able to afford them and would have to cancel all non-emergency care.
This isn’t even the portions of care we are required to pay for, which is only 10% if completely covered by insurance. Even at ten percent, those can run into the hundreds and thousands of dollars, depending on the care required. It seems like there is only one major surgery or hospitalization we can plan for a year; the rest happen quickly and abruptly, without notice.
It is a nightmare I would wish on no one.
We don’t qualify for state or federal aid (like Medicare/Medicaid, SNAP, welfare) because my husband makes too much, but we apply for any aid we can through the hospitals and medical debt assistance organizations. Sometimes we are approved. Most of the time we are not (again, because he ‘makes too much’). We have considered bankruptcy but have been advised against it as it would not deal with the medical debt. We continue to do all we can to liquidate our assets. I myself have applied for many jobs over the last three years, but at this point we have acknowledged the near impossibility of me working. I spend most weeks driving back and forth between doctors appointments and other such like. Hospitalizations happen on a regular basis. No regular nine to five or service job is willing to work with me and the schedule we keep. I can’t even really work the freelance jobs I used to do in web and graphic design; I don’t have the mental or physical capacity to keep up with them.
All this being said, however scary it seems on paper in black and white…I have also seen God provide us in such amazing ways over these years. Just when we think we’ve hit the bottom of the barrel and don’t know where our next meal will come from, somebody will drop off some groceries, a unexpected check will arrive- all sorts of things, crazy out of the blue things that could only happen in God’s timing. We have learned to hope and to trust and do the best with what we have, knowing that God will provide.
Oh, I feel you. It needs to be so much simpler to at least get *ahold* of. Fortunately my children’s hospital writes off whatever the secondary doesn’t cover, but yeah, a lot of my specialists have high copays and then you get the bill *after* the surgery or the “intervention” and *that’s* always a fun moment. I wish that good social workers were par for the course everywhere, because otherwise, you’ve got to have a pretty high level of intelligence, plus saintly patience, to deal with all this stuff.
Oh Joy I’m so sorry. I know that particular boat you’re in, tho ours is just getting moving. I don’t know anything about anything really, but the social workers at our hospital recommended we get JUST our son on Medicaid – he was 18, so maybe considered an adult? and that has saved our booty this year. All of Gabriel’s hospital/meds/medical anything has been covered. Knowing full well we have THOUSANDS of dollars of testing per year on the other kids is daunting tho. And the non-routine, oh, hey, she snapped her humerus in half and needs surgery and a hospital stay! is just icing on the cake.
Oh, bless your heart! Yea, it sure gets interesting, doesn’t it? We got linked up with a great Autism support group here in our area, and they had a bunch of suggestions for us to try. I feel like we have some new avenues to explore instead of spinning our wheels. Every little bit it something!