We’ve all been there, or we will be: at some point in all of our lives, most of us will find ourselves in the position of having to care for a loved one who is sick or elderly, or we will need to take on that responsibility ourselves. Although many of the practical and emotional challenges involved with caregiving are universal (I’ll talk about this in a moment), I want to talk about some of the specific challenges that are unique to rural America.

By any measure that matters, family caregivers are the largest care workforce in rural America. The work of caregiving has to happen, even when a county has just one home health agency and a waiting list. That work typically transfers to adult children, or a spouse, or even a neighbor with power of attorney and a spare bedroom. Rural areas have far fewer paid aides for their older residents than cities do, and the gap gets filled the way it has always been filled: by people who never actually applied for caregiving as a job, but need to do so anyway.

More specifically, this necessary ad-hoc network of rural caregivers is also the only workforce with no license, no association, no conference, no credentials, and no line item in most budgets. That last part is where I want to talk about the Rural Health Transformation (RHT) program, what it is, and how it could be used to do more for rural caregivers across the country.

Last December, the Centers for Medicare & Medicaid Services (CMS) approved Rural Health Transformation awards for all fifty states. It’s the largest deliberate investment in rural health in most of our lifetimes, 50 billion dollars over the next five years, and it is being spent right now, this year, in state plans that were written over the winter and are being rolled out as you read this.

When the National Academy for State Health Policy went through what the states actually proposed, most of the plans were built around the things you would expect, like recruiting clinicians, loan repayment, telehealth, and technology. Regarding family caregivers, only a handful of states included anything for that group at all, and the program itself contains little to no dedicated caregiver benefit of any kind. But considering the need, the allocated amount is nowhere close to a number that reflects how much responsibility those rural caregivers are actually carrying.

The knee-jerk response is to declare that most states don’t care about caregivers, but I actually don’t think that’s the correct read. Most state health officials can describe this problem in more detail than I can, and as I mentioned before, most people will ultimately find themselves in the position of personally having to wrestle with the question of caregiving.

I think the more useful explanation is that every other line in those spending plans likely arrived with somebody already attached to it. Think about hospitals, who have associations with staff whose entire job is to be in the room when a plan is being written. Or clinicians, with licensing boards and residency programs. Emergency services have a chief who can call the governor's office and be put through. Even technology vendors have sales reps, and sales reps are very, very good at showing up.

What I’m getting at is that the family caregiver has none of that, because they aren’t an industry. They are people in a category that can’t attend a stakeholder session, they can’t submit written comments, or even pick up the phone if a program officer called to ask what a reasonable caregiver pilot program would look like. In the context of Rural Health Transformation awards, when the person writing the plan needs a fundable idea with a name attached and somebody who will answer, nobody hands them one for caregivers. So the plan gets written around them.

Again, the distinction is that caregivers are a category, not a constituency. Categories get mentioned; constituencies get funded. The distance between the two is a communication problem, and a communication problem is solvable in a way that the underlying shortage of aides is not.

On the other side, there’s the valid argument that caregiver support is diffuse and hard to measure, and CMS grades states on outcomes they can count. But a caregiver who burns out doesn’t just stop caregiving. They appear on grief counseling lists, or emergency room visits, or hours spent navigating Medicare and Medicaid red tape. That invisible labor is what’s really measurable. And when you think about it, it’s being measured already: it’s just being counted somewhere else, under a different heading, as though it came from nowhere. The RHT workforce pipeline investments are significant, but they will realistically take most of a decade to put a clinician in a rural county that needs one now. That’s what matters to a family managing an aging parent who needs care at home this winter.

The urgency comes from the fact that RHT money moves on a clock. Funds committed for one year have to be used by the next, and the discretionary portion gets re-awarded annually based on how well a state's plan lines up with the program's goals. Every year is a fresh chance for a state to name something it didn’t name the year before.

Which means the counties where caregivers show up in the plan three years from now will be the counties where somebody specifically included them in their budget this year.

Getting started would take less than people assume:

The organizations that hold trust in these communities are the ones best positioned to do this, and they are already doing more with less than anyone outside those counties understands. Hospital foundations, elder care agencies, and other organizations don’t have to solve the immediate problem of a shortage of aides to change this. They just have to make sure that when the plan for next year gets written, the largest invisible workforce in the county is finally counted as part of it.