The 32-Month Wait: What Happens to Families in Between

When a developmental pediatrician hands you a printed list of waiver programs and tells you to “get on every waitlist now,” she usually does not say how long the line is. We learned later. Across the country, families on Home and Community-Based Services waiver waitlists wait an average of 32 months for services to actually start. That is almost three years.

Three years is not a holding pattern. It is a child’s entire kindergarten experience. It is the gap between learning to use a communication device and learning to read with one. It is the time during which a sibling becomes a teenager and starts driving. Whatever a child needs help with during those years, those needs do not pause to wait for an envelope from the state.

What I keep thinking about is what families actually do during those 32 months. The answer, mostly, is everything.

The work that happens off the books

Forty-one states currently maintain waitlists for their HCBS waiver programs. Some prioritize by urgency. Some don’t. While families wait, they are providing personal care, coordinating therapies when they can find them, managing medications, navigating IEPs and 504 plans, training every babysitter and grandparent who walks through the door, and translating a child’s needs to every new doctor, teacher, and aide who shows up. None of it is on a paystub. Most of it is invisible to the systems that will, eventually, write a service plan.

The paradox is that the system recognizes care exists once a waiver is approved, but treats the years of unfunded family labor before the waiver as if they did not happen. Families develop extraordinary expertise about their own children during those years. They build routines, schedules, communication systems, and protocols that would put a clinic to shame. And then, when a paid caregiver, a respite worker, or a school aide finally arrives, families are expected to onboard them from scratch, in the spare minutes between bath time and bed.

This is not a small inefficiency. It is a slow leak in a household that is already running on empty. Every new caregiver who does not have access to what the family has learned costs the family time, sleep, and trust they cannot afford to keep spending.

What infrastructure should look like in the meantime

It is reasonable to want shorter waitlists. It is also reasonable, in the meantime, to want infrastructure that respects the work happening right now. That is the part of the problem InclusiCare exists to address.

We are not going to fix Medicaid waitlists. What we can do is make sure that the years of expertise families build during the wait do not have to be re-explained every time someone new shows up. A child’s profile — what works, what doesn’t, what to watch for, how to speak to them, how to help them regulate — should belong to the family, not to whichever system happens to be funding services this year. When the waiver finally comes through, the paid caregiver who walks in on day one should be able to read the same profile the school aide has been using for two years. When a respite worker covers a Saturday, a parent should not have to brief them like it is the first day of orientation.

This is the quiet equity issue sitting underneath the waitlist numbers. Wealthier families can sometimes hire their way through a 32-month wait. Working families cannot. But every family, regardless of income, is producing the same caregiver knowledge during that time. The least the rest of us can do is build tools that let that knowledge travel with the child, instead of evaporating each time the cast of characters changes.

The 32 months will keep being 32 months until policy changes. That work matters and we should keep doing it. Until then, the families doing the waiting deserve more than a printed list of agencies and a wish of good luck. They deserve infrastructure that treats them as the experts they already are. If you are one of those families, or you support one, we are building InclusiCare for you. We would love to hear what you have learned during your wait.