Policy Changes Reshaping Family Caregiving | Age-Friendly Health Series

Welcome to our limited Age-Friendly Health podcast series. This is a multi-year series where each year, we will bring listeners episodes exploring topics at the intersection of aging, health, health care, and health policy.

In our third and final episode for the series in 2026, host Katherine Ornstein welcomes Alison Barkoff of George Washington University to the program to discuss the rising economic and social importance of family caregiving, recent federal policy shifts affecting Medicaid and caregiver programs, and new interventions at the state and private‑sector levels.

Support for the Age-Friendly Health series is provided by The John A. Hartford Foundation.

Related Links:

• Reflections On Caregiving Policy: Progress, Challenges, And Opportunities (Health Affairs Forefront)
• History Repeats? Faced With Medicaid Cuts, States Reduced Support For Older Adults And Disabled People (Health Affairs Forefront)
• Long Term Services and Supports Initiative
• National Strategy to Support Family Caregivers
• Nation Alliance for Caregiving's Caregiver Nation Coalition

What is A Health Podyssey?

Each week, Health Affairs' Rob Lott brings you in-depth conversations with leading researchers and influencers shaping the big ideas in health policy and the health care industry.

A Health Podyssey goes beyond the pages of the health policy journal Health Affairs to tell stories behind the research and share policy implications. Learn how academics and economists frame their research questions and journey to the intersection of health, health care, and policy. Health policy nerds rejoice! This podcast is for you.

Katherine Ornstein: 00:09

Hello, and welcome to a special health affairs podcast episode, which is part of our New Age Friendly Health Podcast Series supported by the John A. Hartford Foundation. I'm your host, Katherine Ornstein, Professor at Johns Hopkins University and Health Affairs Advisor for the Age Friendly Health Series. On today's episode, we are talking about the changing landscape for family caregiving. About one in four Americans serve as family caregivers according to a recent report by AARP and the National Alliance for Caregiving.

Katherine Ornstein: 00:42

And family caregivers provide the bulk of long term care for older adults and people with disabilities typically are unpaid. Most care recipients are older and many caregivers are themselves older and have health challenges. Many are members of the sandwich generation, including myself, caring both for aging parents and their own children while trying to balance work and life. So I'm here today with Allison Barkoff from the Milken Institute School of Public Health at George Washington University who is a nationally recognized expert on family caregiving. Allison, welcome to the program.

Alison Barkoff: 01:20

Thank you so much for having me today.

Katherine Ornstein: 01:22

Wonderful. So I know this is a topic that I am very excited to hear, from you about, so I want to just jump in and get started. But before we get into the specifics of today's episode, can you just give our listeners a sense of the current policy landscape for family caregiving, both opportunities and then the challenges? Let me start by saying there is so much happening around family caregiving policy. I've been involved in this topic for almost thirty years and the momentum and interest right now is really unparalleled.

Katherine Ornstein: 02:00

So let

Alison Barkoff: 02:00

me start with the opportunities. First, I think caregiving is just truly becoming seen as a critical policy issue, maybe for the first time. Now, as you mentioned, it is so universal. Virtually everyone either is or will be a caregiver or receive care. And we have this huge growing number of caregivers in the last ten years, a nearly 50% increase, huge growing population of people who need care, particularly 10,000 people turning 65 every single day.

Alison Barkoff: 02:34

And we are very focused in this country on affordability and economic issues. And just in the last few weeks, AARP came out with a new report, dollars 1,000,000,000,000 every single year is the economic cost of caregiving, including the many caregivers who have to leave the workplace. Second, we are now seeing that caregiving is really being discussed as part of the broader issue of long term care reform. A lot of people do not know. We do not a long term care system in this country.

Alison Barkoff: 03:10

We'll talk about that a little more. And families often have to step in to provide that care. And we are now looking kind of bigger picture at the system. And then finally, on the positive side, I would say that caregiving is really seen as a bipartisan issue. Vast majority of both Democrats and Republicans support investments.

Alison Barkoff: 03:33

I've been looking at the legislation that's been introduced and despite a hyper partisan Congress over the last several years, over 64% of the bills are bipartisan. And we've seen the number of caregiving bills increase. So that's the positive. On the risk side, there are significant cuts, and we're gonna talk about this in more detail, that have been made to Medicaid, which is the primary funder of both long term care and family caregiver supports. And that is really significant.

Alison Barkoff: 04:10

And the major federal agencies that implement family caregiving programs and policies have been cut. There have been serious reductions of staff, and that puts a lot of things at risk. And I'll just mention, I wrote an article about a year ago for Health Affairs Forefront about both the opportunities and risks. And I have to say, the risks sadly have come to fruition, but the opportunities are still there.

Katherine Ornstein: 04:42

Well, thank you for that overview. And I very much want

Alison Barkoff: 04:45

to go and start unpacking this. So I think we have to start with the One Big Beautiful Bill Act, which will affect paid long term care providers. And can you just address its implications? Yes. As people may know, there was a partisan piece of legislation and there are really two major impacts in this bill for family caregivers.

Alison Barkoff: 05:11

First, as you mentioned, HR1 reduces Medicaid funding to states by nearly a trillion dollars as estimated by the nonpartisan Congressional Budget Office. That is the largest cut in the program's history. And as we talked about, Medicaid is the primary funder of the kinds of supports that help older adults or people with disabilities stay in their own homes. Things like getting out of bed, showering, eating, going out into the community, what we call home and community based services or home care. The problem is home care are optional Medicaid services.

Alison Barkoff: 05:51

And so what we've seen historically, and I wrote an article in Health Affairs Forefront about this, is when there are budget shortfalls in states, the first thing to go are optional programs. When we saw huge cuts during the great recession, every single state cut these really critical services. So that's the first thing. And sadly, we are already starting to see across dozens of states proposals to reduce or cut these critical services that help older adults age in place. The second thing is that HR one puts in new requirements to show that you are either working or engaging in community activities for all people who get Medicaid through the expansion that was part of the Affordable Care Act.

Alison Barkoff: 06:43

That's 40 states in the District Of Columbia. This includes the many, many family caregivers who have left the workplace and are on Medicaid as their major source of health insurance. Now, the statute has exemptions from work requirements for certain people. And it does say if you are providing care to either someone under 14 years old or a person with a disability of any age, you don't have to comply with these requirements. But the problem is you have to prove to get into Medicaid and every six months that you need an exemption.

Alison Barkoff: 07:24

And it's unclear now how family caregivers can prove that. Can they just stay on the caregiver? Do they have to get documentation? We don't know, but we know from states that have put work requirements in the past in their programs that many caregivers will lose Medicaid, not because they are ineligible, but because they are unable to make it for the red tape and the administrative burdens. Right, right.

Katherine Ornstein: 07:50

So this is all of the administrative burden. And even though it may not impact the older adults themselves on Medicaid, it's the caregivers. Yes. Although I have

Alison Barkoff: 08:01

to say, shockingly, work requirements go all the way up until age 65. And again, other research I did looking at who is most likely to actually be unable to meet this, younger older adults between 50 and 65 who may have left the workplace to care give but may no longer be care giving are actually the most at risk for losing Medicaid. Back to what you alluded to in terms of changes in programs.

Katherine Ornstein: 08:33

It seems like a key part of the federal infrastructure for supporting family caregivers is at the Administration for Community Living or ACL as part of Health and Human Services. It seems to be in limbo, and this seems pretty important. So can you explain what's been going on with this agency as of right now?

Alison Barkoff: 08:55

Okay. So exactly. We have to say as of right now because things are changing very quickly. So let me start with for people who aren't familiar with the Administration for Community Living or ACL. It's a federal agency within the US Department of Health and Human Services.

Alison Barkoff: 09:12

And it administers programs that support older adults, people with disabilities, and family caregivers, and is the agency's lead on aging and disability policy. And relevant to our conversation about family caregivers, it implements some major programs that directly support family caregivers. That is the Family Caregiver Support Program that's funded through the Older Americans Act and the lifespan respite program. And it also leads an advisory committee that is charged with developing and implementing a national strategy to support family caregivers. So that's who ACL is.

Alison Barkoff: 09:52

Literally about a year ago in April 2025, HHS one morning, actually on April Fool's Day, and it was not a joke, announced a major reorganization and termination of thousands of staff. It announced it was going to completely eliminate ACL as its own independent agency, take the programs and sprinkle it across several other agencies and eliminate many aging and disability programs. And it terminated about half of the agency staff. The aging and disability communities really came out. They worked very hard together, going to Congress to fight to protect the programs that had been proposed to be cut and really emphasized the importance of ACL.

Alison Barkoff: 10:45

In the budget that was passed this March, the success is Congress rejected every one of those program cuts and put in language that it did not support this HHS reorganization. So where does this leave us? We are totally in limbo. ACO has not been eliminated or merged into another agency at this time. That's the great news.

Alison Barkoff: 11:12

Yet in the president's fiscal year 2027 budget, he again proposes to eliminate ACO to move it into another agency. And again proposes to eliminate some disability programs. So, we're in limbo. The other thing is the staff. They are gone and it has made it really hard to implement programs.

Alison Barkoff: 11:36

But, the limbo. Quietly under the radar, ACL is hiring back some mission critical staff. So, in limbo, what I would say is, because of strong advocacy, ACL continues to hobble by. Hopefully, we have turned a corner. And I don't think the signals from Congress

Katherine Ornstein: 12:00

are at all that they are interested in eliminating the agency or its critical programs. So, you know, it's April, mid April. So what do you see changing, Alison, in May?

Alison Barkoff: 12:14

Or when when will we find out more? Yeah. You know, we probably won't really know until congress has to pass the fiscal year twenty seven budget at some point. The end of the fiscal year is the September. I think we're gonna be in limbo for a while.

Alison Barkoff: 12:30

I don't see HHS doing any major reorganizations right now. I'll just point out we're right before midterm. They're not looking to rock many boats. And so I think this limbo even though we are talking today in April, this limbo is gonna be there for a little while with on paper, this intention to reorganize and eliminate programs, and in reality, ACL continuing on, hobbled in many ways, but continuing on. So I want to talk a little bit more about the state level.

Alison Barkoff: 13:05

Can you provide some examples of policies implemented

Katherine Ornstein: 13:08

at the state level, let's say within the past year, that have been effective in supporting family caregivers. And also just speak to the role of the states in this situation.

Alison Barkoff: 13:20

As people who may be watching what happens in Congress, we are in a, as I said, very hyper partisan moment and a lot of gridlock in moving things forward despite, as I said, family caregiving being a bipartisan issue. So, where we have seen the momentum is actually in The States. And I'll give a couple examples. One that has been just, I think, so critical for so long and almost through the Build Back Better Act that was being moved maybe a few years ago in Congress. Again, it was a partisan bill moving by the Democrats.

Alison Barkoff: 14:01

There is a real need. We do not have in this country paid family leave programs. That's one place where we have seen states really stepping in. 60 to 70% of family caregivers also work. And when you talk to people about what their priorities are for support, you know, A, get my loved one paid family support, paid support so I don't have to step in so I have a choice to care give.

Alison Barkoff: 14:29

And two, I need some support. We now have 13 states plus the District Of Columbia who've enacted paid leave policies, And that is really moving quickly. In my own home state of Virginia, we just passed paid family leave. It was amazing. That's one thing.

Alison Barkoff: 14:48

The second thing is we are really starting to see some creative ideas about how to help people access formal care to help them stay in their own homes and age in place. And I think the most notable one is a program that Washington State is now implementing, a state run social insurance long term care program that pays for home care. We're also seeing some states use really creative measures like Oregon and California to reach what we sometimes call the missing middle. The group of people that are not low income enough to access long term care through Medicaid, but do not have enough resources to pay out of pocket. So I think we will see over the next few years innovations at the state level that can really help us maybe build momentum and policies for when there is the right political moment for big federal policy change to support family caregivers.

Alison Barkoff: 15:51

Okay.

Katherine Ornstein: 15:51

So I feel like Washington State comes up all the time relative to sort

Alison Barkoff: 15:55

of progress in family caregiving. Can you talk about how they're able to do that? Yeah. I mean, they worked very hard to bring together, I think, the big 10 of people who care about this issue. Older adults, people with disabilities.

Alison Barkoff: 16:12

They really pitched this as a financial issue. They worked closely with SEIU and labor unions. And I think some of this was educating people about the vast majority of people think Medicare pays for long term care. Medicare does not pay for long term care. People only find out when they No, get and then they're and people think, Oh, I can just pay out of pocket.

Alison Barkoff: 16:40

The costs are extraordinary, extraordinary. And the vast majority of people cannot afford that. So they were able to really build momentum to have a small tax to people who work, they pay in, and then they can access this system. I think it is a mentality about everyone is going to need this, so let's create something to support everyone. And they worked very hard.

Alison Barkoff: 17:10

In fact, there was a referendum about two years ago to undo it. And family caregiving won out. Long term care won out. And that was, I think, the really important pivot point for them to start moving forward with implementation. And what about in the private sector?

Alison Barkoff: 17:32

Are there some like, you know, exciting approaches happening there that they're supporting family caregivers? Yeah, so I think more and more employers are starting to see caregiving as an issue for so many of their employees. Again, when people leave the workplace and they say, Oh my goodness, you are one of my best employees. I invested in training you. Why are you leaving?

Alison Barkoff: 17:55

Many people say, Because I can't balance my caregiving responsibilities with working. So there was a great report that came out from the Milken Institute, really laying out some of the many strategies that we're starting to see in the private sector. Now, one thing, and I think this comes a little bit out of people's experience through COVID, is more employers allowing caregivers to have flexible work arrangements. You can absolutely do your job, but you might need different hours. You might need to be able to sometimes take off time to address caregiving needs.

Alison Barkoff: 18:31

We're starting to see employers provide caregiving benefits like assistance with finding care, support groups, or even paid caregiving leave. And even in some other circumstances, much like we've seen some employers do in the childcare space, they are starting to provide subsidies to offset the cost of privately paying for care. So, I think we are really starting to see that we need to think big picture. When I was at the Administration for Community Living, we submitted the first ever national strategy to support family caregivers to Congress. And we were very clear there is an incredibly important role for Congress.

Alison Barkoff: 19:18

There's an important role for federal agencies. But we need everyone to be part of this. That's states and local government, that's employers, and that is advocates. We need to use every tool in our toolbox to address family caregiving. So we're almost running out

Katherine Ornstein: 19:36

of time and there's so much activity and effort happening. What else have we not mentioned that you think is really important in this landscape that our listeners should know about?

Alison Barkoff: 19:48

Advocacy. How can you keep up with what's going on and how can you get involved at the state or local level or with federal policy change? So let me start by mentioning two great organizations that you can follow or even get involved with. The first is the National Alliance for Caregiving, and they have a national network that they lead, as well as kind of a group of aging and disability organizations that come together to work on caregiving issues. It's called the Caregiver Nation and the Caregiver Network.

Alison Barkoff: 20:27

And I'd really encourage people to look at their website and get involved. AARP is also very involved in caregiver policy, both nationally and in states. And that's a great place to keep up with what is happening and how to get involved. Second, I'll just say for those of you who got your interest piqued by what is happening in Congress, there is an initiative that I am part of where we've been really tracking, you know, what is Congress proposing? What are the major ideas that are out there around long term care reform and about family caregiver policy?

Alison Barkoff: 21:08

I'll just mention you can check out exploreltssinitiatives.org. It is an initiative that I am working on together with partners at UMass Boston LTSS Center and it's funded by the John Hartford Foundation and the SCAN Foundation. And you can go there and look at what are the major proposals that have come out around long term care financing? How are they different? These are proposals and major thoughts, things that have not yet passed.

Alison Barkoff: 21:42

But I think you can look at the momentum and we will be adding this summer an entire collection where we have looked at family caregiving legislation and major policy over the last decade. And you can get all of that information at exploreltssinitiatives.org. So get involved. I think the time is now, both in terms of work to protect existing programs, to fight against cuts, but also to get involved in what is the world we want to be able to support family caregivers and people receiving care. Because there is an incredible momentum

Katherine Ornstein: 22:24

that is happening and there is a role for anyone who is interested in getting involved. Thanks, Alison, for joining us today on this special Age Friendly Health Podcast from Health Affairs Publishing. Thank you to our listeners for joining us. Thank you to all the caregivers out there who do what they do. We hope you'll check out the other episodes in the series available on the Health Affairs website or wherever you get your podcasts.

Katherine Ornstein: 22:52

Thank you all so much. Thank you.