Lucas Camilo

We’ve ranted about the challenge of getting good health care coverage for Lucas before, most recently a few weeks ago when Krista talked about the pains of moving as it relates to insurance – about fighting “an industry that has billions of dollars which it mobilizes to justifying denying necessary services.”  Back in 2009 at the NICU we wrote a rant about how exasperating it was to get Lucas out of the hospital.  And about two years ago we discussed the benefits of the Affordable Care Act as it related to Lucas and our life (even as we acknowledged that the legislation was insufficient to solve our country’s vast healthcare problems.)

Now it’s time for another such missive, given some recent developments with our post-Seattle move insurance situation.  It’s not always fun to write this stuff out but we really believe that these stories need to be told, that only through talking about the shortcomings in our system and directly confronting the insurance companies will things ever get better.

So…. as you know Lucas is a complex, medically fragile kid.  Because he has a tracheostomy and uses a ventilator it’s necessary for someone well-trained in suctioning, CPR, changing trach tubes, etc be with him at all times.  That means means one of us or a vent-certified nurse.  Lucas’s nursing coverage in Washington DC came through the Medicaid-funded Health Services for Children with Special Needs (HSCSN) which he qualified automatically for after spending the first 3 months of his life in a hospital.  Moving to Washington state we knew it would be difficult to get approved for a Medicaid waiver, and frankly we’d prefer that private insurance cover all of Lucas’s healthcare needs – especially knowing that Medicaid is getting cut and there are families out there that need the coverage a lot more than we do.

So even though CareFirst, our insurance company, has an exclusion for private duty nursing in their contract we decided to submit the nursing claims and fight it out.  That was back in February as we were preparing for the move.  They denied coverage for Lucas and we immediately appealed, insisting that there was medical necessity and referring to the clause in the contract in which nursing should be provided  in lieu of hospitalization.  We provided about a hundred pages of supplemental documents – doctors notes, previous legal precedents, etc.   We spent lots of time on the phone with case managers, doctors, social workers, and a lawyer, knowing all along that it was an uphill battle but one that we had to fight: as much out of principle as necessity since some of those same professionals assured us that Lucas would eventually get a Medicaid waiver and qualify for the Medically Intensive Child Program in Washington State.

On Monday we finally heard back from CareFirst that the denial had been upheld.  We can submit a second appeal to the DC government but we have to wait four months.  Attrition, that’s their strategy.  And it looks like this time they’ve beat us; it would cost a ton to pay out of pocket for nursing while we wait to submit another appeal, and we’re not ready for the Medicaid fall-back.

We’re fortunate to be working with an awesome lawyer here in Seattle who has a background in community organizing and is providing pro-bono support.   She foresaw that the denial would be upheld and recommended that we purchase a child-only insurance plan for Lucas (which is to say, a second insurance plan beyond the one we get through Burke’s work).  Part of the problem we’re dealing with is that the CareFirst insurance was issued in DC and therefore is subject to DC law.  Washington state has much more progressive statutes related to health insurance, which, combined with the Affordable Care Act, have led to successful appeals challenging Washington-based insurers.

So Lucas now has a second health insurance plan, this one through Regence BlueCross that we purchased on the open market – it has a moderate monthly premium but relatively high deductible and co-pays.  This plan officially doesn’t cover nursing either, but our lawyer has helped other families challenge Regence around this issue and won.  So she’s confident that we’ll overcome their nursing exclusion so that Lucas will finally have at least a few days of nursing a week covered by insurance.  This strategy of buying insurance for Lucas is only possible because of health care reform.  A few years ago, Lucas’s “pre-existing condition” (in quotes because it’s a phrase created by the insurance industry) would have meant we had no option but to hope the state would fill the gap.