Secondary Medicaid: Our Story

Monkey Jump Medicaid


Our daughter now has Medicaid coverage in addition to our private insurance.  I am writing about it for two reasons.  First, it is a link between my previous post in which I explained why we declined home nursing for two years, and my next post in which will explain why we are reluctantly seeking it again; our new-found Medicaid coverage is a major reason since our waiver program (see below) requires that we utilize some nursing.  And secondly, while the existence of Medicaid is common knowledge, and it’s often  alluded to in conversation in general and usually negative terms- especially in this time of political activity- I have found that most people (myself included) have a vague and inaccurate idea of what Medicaid is and who uses it.  So I’m sharing a little of our story in hopes that some may be able to relate to the insurance headache (part of that surprise job every special needs parent lands) and that I may dispel a few myths along the way.


So, I’ll start with why our daughter now has Medicaid in addition to our private insurance coverage.  After all, before having a special needs child, I assumed that people with private insurance would have no use for Medicaid.  I assumed that they wouldn’t qualify, either by virtue of having insurance coverage or due to the level of income that allowed them to pay for private insurance in the first place.  I assumed that the patient could access whatever care was needed, with insurance covering it as long as the family’s premiums, copays, and out of pocket max were dutifully met. As it turns out, these assumptions are not always true.  For a wonderful explanation from a fellow blogger and special needs parent, see the blog post Why Our Special Needs Child Has Secondary Medicaid by blogger AllThatHathLife.

Personally, the major reasons we sought Medicaid after going two years without it is that our primary insurance doesn’t cover everything that June needs, presumably because the private insurance company knows that kids with extraordinary medical needs/expenses are eligible for government programs such as this.  Something our caseworker told us way back in the NICU days has proved to be a very widely held assumption by the insurance companies and medical providers alike:”You insurance doesn’t cover this, but don’t worry– Medicaid will kick in.”  In fact, this is such a common assumption that early on in our journey with June, our private insurance company refused to pay claims for her until we provided proof that she did not, in fact, have Medicaid coverage.


I’m told that the waiting list to receive Medicaid in Texas is about 10 years long.  But the state has several waiver programs in place which allow specific populations to have priority, or effectively skip the list.  One waiver program is for children with complex medical needs like June- the aim of which is to provide support which will reduce the amount of time the child spends in nursing facilities and hospitals, which will in turn reduce the overall cost of care for that patient.  (Win for the patient and family, win for the community as a whole which shares medical costs in both the private insurance “pool” and the government program “pool.”)


Where can we use Medicaid? That’s the question!  Another misconception I previously held is that Medicaid is widely accepted by doctors.  We live in the suburbs of a major city, and I was shocked to find that no one near us takes Medicaid.  I assumed that most physicians did, because in my experience, most providers in my own field (mental health) do; the feeling being that the comparative reliability of reimbursement (provided that you tough out the billing and paperwork learning curve) compensates for the lower pay rate.  Apparently that is not so in the medical field.  Finding that my preferred pediatricians did not accept Medicaid, I called down the list of nearby doctors provided on the Medicaid website.  The responses I got include:

“I’ve never heard of that doctor.”

“She no longer works here.”

“Yeah, that guy died like 5 years ago.”

So, like any special needs mom at her wits end, I took to the forums.  Every local parent of a trached child that I asked said they use a specialty pediatric clinic associated with our daughter’s hospital, which I never knew existed.  I finally got her signed up there, after a few conversations reminiscent of “Who’s on first?” with the nurse who explained that in order to see one of their PCPs, I needed a referral from a PCP, despite the fact that the reason I was calling was because we were not established with any PCP at the moment.  Also, the fact that our primary insurance acts as an HMO made it all the more fun when I discovered that the “doctor” we were- at long last- scheduled to see was in fact a nurse practitioner, not an MD, and therefore wasn’t eligible to be our designated PCP.  But I digress.


As for when we applied and what was involved- applying for Medicaid through the waiver program is a long, detailed and convoluted process.  When June was in the NICU, the hospital started our first application process on our behalf.   After a 3-month process of interviews with caseworkers, many many phone calls, signing forms every few weeks in person and by mail, and having paperwork completed by our PCP, we were ultimately denied coverage.  This time we applied, we did all of these steps plus the subsequent steps in the process including having a caseworker interview us in the home, having a registered nurse interview us in our home separately, having additional paperwork completed by the PCP, paying out of pocket for June to be admitted and discharged from a local nursing home facility, then having a second round of paperwork for the PCP…..all over the course of EIGHT months.

So, that is our Medicaid adventure so far.  And, just a note, *our little monkey did not fall and bump her head.  But we do play that game a lot in our safari household, and adding that last line made me crack up for an entire day during this insurance chaos recently, so I couldn’t resist.

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