The Five-Month Runaround: When Coverage Breaks Down for Basic Medical Needs
Starting in June—right around the time Abby was “almost 21”—everything that had worked for years suddenly stopped working. Orders that had always gone through without issue were suddenly “pending,” “under review,” or “awaiting prior authorization.” For five long months, we went without essential items: her enteral nutrition, G-tube supplies, bandages, gloves, chux, and briefs.
Abby has been on the Community Supports Waiver since her mid-teens. For years, the system made sense: Medicaid covered what insurance didn’t—things like briefs, gloves, wound care, and formula—and the waiver covered the extras such as wipes, additional tubing, and syringes. But as her 21st birthday got closer, something shifted. Without warning, we were told prior authorizations were required for everything, yet no one could explain why. Even though I called insurance nearly every day and informed our SC of the issues my concerns were met with a shrug or what seems like complete lack of training or knowledge.
Where Everything Went Off the Rails
By June, the “almost 21” rule changes began. Insurance said it was Medicaid’s job or said something different every single time I called, or it changed with each representative I spoke to. Medicaid said it was insurance. The DME said they were waiting on approvals, or denials. Each call led to another explanation that didn’t make sense—and still no supplies. I faxed, called, and emailed for months while the clock ran out on every refill and reorder.
Eventually, someone at the DME finally told me the truth: once Abby turned 21, briefs and certain medical supplies had to be billed under her waiver—not through insurance or Medicaid anymore. That single sentence explained everything no one else had bothered to say. I don't feel like the correct info was withheld from us. I feel like the system is that broken. I've said before that there is a real sense of sucks to be you, or that she doesn't matter anymore because she wasn't still supposed to be here, so why bother ? Harsh? I can be sometimes. This person is not a number or a file and she and people like her deserve the same care for their entire life span.
They don't suddenly become continent once they turn 21. Their brains and bodies don't suddenly work. Look, I'm no dummy. I get that the issue is how much and where the funding will come from. What I don't get is that no one seems to know or comprehend their own policies. That is unacceptable.
What We Were Finally Told
- Before age 21: Medicaid covered medically necessary supplies (briefs, gloves, wound care, enteral nutrition) while the waiver covered supplemental items like wipes and spare tubing.
- After age 21: some of those basic items—especially incontinence products—shifted to the waiver’s responsibility for payment.
- No one—Medicaid, insurance, or the DME—seemed to know when or how that transition was supposed to happen, so nothing got billed correctly for months.
How It Played Out
- June: Everything started going “on hold.” I was told prior authorizations were being processed and to wait.
- July–August: Medicaid said insurance needed to approve first; insurance said Medicaid was responsible; the DME couldn’t move forward without a decision.
- September: Our new PCP resubmitted paperwork to restart briefs—one month was approved after another full authorization process, but no other supplies came through.
- October: We were finally told that because Abby has a waiver, the DME could no longer bill insurance or Medicaid for briefs. The account for those items would be closed, and future orders had to go through the waiver directly.
Why Families Deserve Straight Answers
This wasn’t about misunderstanding coverage—it was about not being told that the rules were changing. No family should have to discover midstream that years of coverage are suddenly being rerouted through a different system. The cost of that silence was five months without essential care. Trust me when I tell you that I can not possibly recount how many times I was told that things would change once she turned 21. each and every time I asked how, and in what way, the person relaying that information had no details.
If You’re Facing the Same Confusion
- Ask your DME directly if any of your supplies are shifting to waiver coverage after age 21.
- Confirm with your service coordinator what the waiver will cover and how billing should be submitted.
- DO NOT be afraid to ask for a supervisor or director for fear of getting in trouble or hurting someone else's feelings.
- Keep a written record of every call, name, and date—especially if they say your account is being closed or “transferred to waiver.”
- Request written clarification whenever possible. “We’ll look into it” isn’t enough when someone’s health depends on the answer.
My Takeaway
Abby went five months without the basics—not because we didn’t qualify, but because no one took ownership of explaining a policy change. Families like ours deserve more than a paper trail of finger-pointing. We deserve clarity before the supply chain stops.
This is why I keep speaking up—because no caregiver should have to learn policy by trial and error.
Note: This post reflects our experience in Missouri under the Community Supports Waiver and the guidance we eventually received. Coverage rules vary by state and program, so always verify with your service coordinator and DME how your supplies should be billed once your family member turns 21.
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