We’ve always had private health insurance through my
employer. Our family has been covered
continuously. So we’re just like the
rest of the privately-covered families out there. We still pay almost $600 per month in premiums to
turn around and pay a $3,000 deductible before any services are covered (to break that down quick, we have to pay out over $10,000 a year before insurance touches us... and yes, we end up paying out all of our deductible & a healthy chunk of our out of pocket each year). Honestly, I’m very thankful that we have what
we have here. We are fully aware that
our insurance plan is pretty good [and we know that families buying insurance through the marketplace are paying far more than $600 a month in premiums]. That’s
not to say that insurance hasn’t changed incredibly over the past few
years. There’s no debate there. When I had Lance our deductible was $500 and our
family out of pocket max was $2,500.
Ha - if only! That was only seven years ago…
and we had cheaper premiums to boot. My
purpose here is not to complain about insurance, but instead be eternally
grateful for it. Back in the day when
our private insurance was all the coverage we had, I had a very different view
of government sponsored insurance plans.
I thought they were only for low income families (not that we’re
anywhere near a high income household at all… AT. ALL.) and that they were frequently abused. I had no idea how diverse they were, though.
Towards the end of December 2014, we were nearing the 30-day
mark of being inpatient in Cincy and the financial office for the hospital called me
down to meet with an advisor to talk about options. Uhhh… okay.
Theresa sat me down and explained to me all the ins and outs of medical
billing and options we had to handle the massive financial burden that was
headed our way. When we were in the ICU,
the average daily charges to our insurance were about $14,000/day. So if this had been our first hospital stay
and Ellie hadn’t had additional tests and surgeries, we’d already be looking at
$420,000 hitting our insurance… which is pretty much what happened (but we also
had our prenatal care, three other hospital stays, three surgeries, and tons of tests
hitting insurance that year, too). By
the time Ellie was four months old, she’d accrued over $1.8 million in medical
claims. Now, if that was back in the
days before the Affordable Care Act, she would have already maxed out her lifetime
benefits with our private insurance. LIFETIME
benefits - at four months old. Ouch! This is when we initially realized how
amazing insurance really is. Yes, we
were responsible for our $2,500 deductible that year and we had to cover our
$8,000 out of pocket max, but that was chump change compared to her total
billed claims. [Since this, our deductible and out of pocket max has increased…
but is still a tiny percentage of what we use.]
Fortunately, when you have extensive medical costs like
that, and thirty consecutive days in the hospital, you qualify for additional
medical coverage. Starting in 2015,
Ellie was eligible for the Medicaid waiver program. This meant that Medicaid would pick up most
of her medical costs that insurance didn’t cover. Did we still have to pay our deductible? Absolutely.
Did we still have to cover normal expenses that the rest of our family
accrued? Of course. But once Ellie was on the waiver, it
essentially disregards the income of the family as a condition for eligibility. Whew!
Once we had this waiver established, we had to also work on getting the
Ohio Home Care Waiver secured because Medicaid, on its own, would not cover
home nursing. Now, in the state of Ohio,
the hospital is not supposed to discharge a patient with a new trach without
the Home Care Waiver in place (this is what we were told, at least). It does
happen, but our discharge planner said that they desperately try not to do
that. Here’s the reason for this: once you have a trach, you have home care
nursing hours… you also have a boatload of monthly medical supplies and hella
expensive medical equipment that stays at your house. Home nursing alone runs about $15,000 per
month. When Ellie came home on a
ventilator, we were running about $10,000 per month in medical supplies and
another $8,000 a month for medications.
In our case, our medical supplier (DME) is out of network, so our
insurance would only cover that at 60%.
Our private insurance doesn’t touch Ellie’s medication, and maxed out at
60 lifetime days in home nursing. So
even with our private insurance running at full blast, we’d have to cover
$27,000/month out of pocket just to keep Ellie home and healthy. Heaven forbid she get sick or need another
surgery (or eleven). These programs are
set up to make sure that families like ours are able to function. We have two working adults in our family, we
pay for the best health insurance plan provided by my employer, and we stuff as
much money into our Health Savings Account as we’re allowed by the IRS each
year to make sure we can pay those medical bills coming in. No matter what we do, though, there’s no way
to afford $27,000 out of pocket each month.
We also have a third back-up insurance provider: BCMH.
In Ohio, the program is call Bureau for Children with Medical
Handicaps. Ellie qualified for this with
her congenital heart defect diagnosis. I
believe this coverage can cover her up to age 21 as long as she has at least
one specialist caring for her annually (cardiology, ENT, neuro, etc.). We actually had this coverage lined up before
she was born. It didn’t cover any
cardiology care prenatally, but it helped cover costs once she arrived. BCMH is fabulous. The only hard thing about it was that we had
to make sure that any providers treating her were part of the BCMH
network. While this was easy to do for,
say, a pediatrician… it was impossible to do in the Emergency Room. When we were in Cincinnati, it was hit and
miss who was a BCMH approved provider, and of course, we had no control over
who was ordering tests and who was evaluating Ellie each day. BCMH still helped a great deal.
Even now, outside of the walls of a hospital and outside the
unique qualifications under the Home Care Waiver, these programs are
amazing. When Ellie had RSV last month,
we blew through over $16,000 worth of breathing treatments to make sure she
trucked through it. Yes, of course
$16,000 at home was cheaper than just two days in the ICU, but still… that’s
outrageous.
We are what you would call a "super user" for insurance
companies. At the end of 2015, my
employer sent out a summary of total medical claims paid out by the
company in 2014. I looked at that letter, then
looked at our insurance claims for 2014.
I think there are about 3,000 lives covered by our company. Of the total insurance claims paid out by our
company for all 3,000 lives, my four-month-old daughter accounted for just over 18%. Blah! I really wanted to send out a company-wide email with a picture of our cute girl and say, "I know our premiums are going up... it's her fault... but look how cute! Thanks!" Super user is not a title we want… but we soon realized for every person that
abuses the system (and gives government funded insurance programs a bad name),
there’s a hard working family like ours that couldn’t own a home, couldn’t
work, couldn’t afford to send their children to school or daycare… couldn’t
afford to breathe without programs like Medicaid. Now… do I hope and pray that Ellie will not need these additional layers of insurance some day? Absolutely.
Do I one day hope that she’s a working adult who can subscribe to her
own employer’s insurance plan? You
bet. But until then… until we no longer have
$27,000 a month of uncovered expenses, this is where we’re at. When you think of those covered by programs
like Medicaid, know that without these programs, children and adults with
special needs could not get the medical care they desperately need. For so many families (like ours) who need to
travel out of state for certain care, private insurance is sometimes useless
and these programs are the only way they can cover these medical expenses.
Now to tell you about the hundreds of hours I’ve spent on
the phone with insurance companies… haha… just kidding… that would be the most
boring post in the world. But know that
it’s very much a part of our lives – it’s very much a part of what we do to
fight for our child and for the care, medications, surgeries, and supplies she
needs to live. When the debate turns to
health care, I have plenty of vested interest, folks. So for any of you who had no idea these
programs existed… or how crucial they are to people with special needs or
complex medical needs… now you know. You’re
welcome!
Again, thank you for following along with these posts. We absolutely could not do this without your
love, prayers, and support. Thank you,
Team Ellie Bug! We love you dearly.
Love,
Parents of a $5 million baby (gasp)
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