What Would a Long-Term Care System Designed Around People Look Like?
At our Coalition meeting this month, I asked a deceptively simple question, partly in context to the series of surveys our Coalition is fielding in the Fall and in connection with our workforce pipeline project we are partnering with The Washington Home:
What does it actually mean for the long-term care system to work for people?
We spend a great deal of time talking about programs, benefits, funding, regulations, workforce shortages, training and individual agencies. All of those things matter.
But ultimately, the system exists for people.
And I think we need to spend more time looking at long-term care from the perspective of the person trying to navigate it.
Start with the consumer
Our working hypothesis is straightforward:
Consumers of long-term care in the District should be able to access high-quality, culturally responsive, affordable and coordinated services through a system that is understandable and relatively easy to navigate.
People should have meaningful choices about their care. They should be able to rely on well-trained caregivers. They should participate in decisions about their own lives. And, most importantly, the system should help people maintain their dignity, independence and quality of life.
But there is another part of that hypothesis.
Many people today encounter unnecessary barriers.
They don’t know where to begin. They receive information from multiple agencies that doesn’t always connect. They may have difficulty understanding what services they qualify for—or how to actually obtain them.
They may encounter workforce shortages, caregiver turnover, administrative obstacles, financial barriers or gaps in coordination.
And when something goes wrong, the consumer or family caregiver is often left to figure out which agency to call, who is responsible and how to get the problem resolved.
That raises an important distinction.
We shouldn’t simply ask whether someone likes their caregiver. Of course that matters.
We shouldn’t simply ask whether services arrive on time. Of course that matters too.
But those questions are largely about individual programs.
I think we also need to ask whether the system works.
Was it easy to figure out where to start?
Did someone help you understand your options?
Did agencies communicate with one another?
Were you given information you could actually understand?
Did you have meaningful choices?
Could you get help when something went wrong?
Were your caregivers stable and adequately trained?
And ultimately, did the services you received allow you to remain as independent as possible and live with dignity?
Those are systems questions.
A person can have a wonderful relationship with an individual caregiver and still have a terrible experience with the long-term care system.
We need to understand both.
Today’s consumers—and tomorrow’s
There is another dimension to this conversation that I believe deserves much more attention.
We often talk about consumers of long-term care as though they are a defined group of people who already need services.
But there is another group we need to think about:
Future consumers.
Most of us are not prepared for the possibility that we—or someone we love—will eventually need long-term care.
We may spend years thinking about retirement. We may think about Social Security and Medicare. We may think about where we want to live.
But many people have never had a serious conversation about what happens if they need help bathing, dressing, preparing meals, taking medications, getting around the house or simply remaining safely at home.
There is enormous misunderstanding about this.
One of the most common assumptions is that Medicare will pay for our long-term care if we eventually need it.
For most people, that simply isn’t the case.
Medicare is an important health insurance program, but it is not designed to be a comprehensive financing system for the ongoing custodial care many people may eventually need.
That gap between what people think the system will provide and what it actually provides can be enormous.
And that means the conversation about long-term care shouldn’t begin when someone is 82, has had a fall and suddenly needs help at home.
By then, many of the decisions have already been made for them.
We need to ask not only:
How well are we serving people who need long-term care today?
We also need to ask:
How well are we preparing people for the possibility that they will need long-term care tomorrow?
That means improving public understanding. It means making long-term care planning a normal part of aging—not something we avoid until there is an emergency.
Today’s 40-, 50- and 60-year-olds are also part of the long-term care system of the future.
In that sense, there really aren’t two groups of people: people who need long-term care and everyone else.
There are current consumers and future consumers.
Listening to the journey
This is one reason I am particularly interested in where we go with the Coalition’s consumer survey work.
I don’t think our opportunity is simply to conduct another consumer satisfaction survey and produce a list of percentages.
We should try to understand the consumer journey.
What happens when someone first realizes they need help?
Where do they go?
What information do they receive?
Who helps them?
Where do they get stuck?
What happens when they move from one program or provider to another?
What happens when their caregiver leaves?
What happens when their needs change?
And what happens when the system fails?
These are the experiences that can help us understand the long-term care ecosystem from the inside out.
This is also where qualitative information becomes especially important.
Quantitative data can tell us how many people experienced a problem.
A conversation with a consumer can begin to tell us why it happened.
It can reveal the three phone calls, the confusing letter, the agency that didn’t communicate with another agency, the family member who had to quit work to provide care, or the person who didn’t know a particular service even existed.
Those experiences can reveal pathways and obstacles that aren’t visible in a spreadsheet.
And they give us something extremely important as a Coalition:
a way to connect policy to people’s lives.
When we go before the Council, the Mayor or agency leadership and talk about workforce shortages, fragmented systems, administrative barriers or gaps in coordination, we should be able to say more than, “Here is a policy problem.”
We should be able to say:
Here is what this policy problem actually looks like in the life of a District resident.
That is powerful advocacy.
The workforce is part of the same system
This perspective also connects directly to the Coalition’s Healthcare Workforce Pipeline Project, made possible through the support of The Washington Home.
For years, many of us have talked about the growing challenges facing long-term care and the healthcare workforce in the District.
We know the population is aging. We know demand for care is increasing. And we know employers are struggling to recruit and retain enough qualified workers.
At the same time, there are people in our communities who could enter these careers but face barriers to training, certification, employment and career advancement.
So the challenge isn’t simply that we don’t have enough people who want to care for others.
The challenge is that the system connecting people to healthcare careers is fragmented.
Training providers are doing important work. Employers are doing important work. Community organizations are doing important work. Advocates are doing important work.
But too often, those efforts aren’t connected in a way that creates a true workforce pipeline.
That is what this project is designed to address.
Our goal is ambitious: to help increase the number of trained and employed healthcare workers in the District by at least 1,000 over the next four years, while improving retention and strengthening the overall pipeline into direct care careers.
But the number 1,000 is really a measure of something much bigger.
It represents 1,000 people who have an opportunity to build a career.
It represents thousands of hours of care that will be available to older adults and people with disabilities.
It represents families who can have greater confidence that a qualified caregiver will be there when they need one.
And it represents the possibility of creating a healthcare workforce system that works better for both workers and the people they serve.
We will also learn as we go.
We need to understand where people enter the pipeline, where they get stuck, what prevents them from completing training or becoming certified, what happens when they enter employment, and why people stay—or leave.
We will use data, but we will also listen to workers, employers, students, educators and consumers of long-term care.
Because the workforce challenge and the consumer experience are not separate issues.
They are two sides of the same system.
You cannot build a consumer-centered long-term care system without a strong workforce.
And you cannot build a sustainable healthcare workforce without understanding the people that workforce exists to serve.
From individual improvements to systems change
I see all of this as part of a larger evolution for the Coalition.
We will continue advocating for specific policy changes. We will continue working on workforce issues. We will continue bringing partners together to address immediate problems.
But we also have an opportunity to step back and ask a bigger question:
What would a long-term care system designed around the consumer actually look like?
A system that is understandable before you need it.
A system that is navigable when you need it.
A system that gives people real choices.
A system that respects culture, family, independence and dignity.
A system where workers are valued, trained and supported.
A system where agencies actually coordinate.
A system where people’s experiences help shape policy.
And a system that recognizes that long-term care is not somebody else’s problem.
If we are fortunate enough to live long lives, many of us will eventually become consumers of long-term care—or caregivers for someone who does.
That makes this work personal for all of us.
The opportunity before the DC Coalition on Long Term Care is not simply to make individual programs better, although that work remains essential.
It is to help imagine—and ultimately help build—a system that works better as a system.
One that begins with the people it is intended to serve.
One that listens to their experiences.
One that prepares people before they reach a crisis.
And one that recognizes that the quality of long-term care depends not on any single agency, program or organization, but on how well all of the pieces work together.
That is the larger opportunity before us.
And I believe it is one worth pursuing together.
neilrichardsondc@gmail.com