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Policy Changes Reshaping Family Caregiving

Welcome to a new, limited podcast series exploring major policy changes affecting older adults. This episode is part of our Age-Friendly Health series, which explores 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.

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Katherine Ornstein: 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.

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: Thank you so much for having me today.

Katherine Ornstein: 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.

So let

Alison Barkoff: 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.

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.

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.

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.

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: Well, thank you for that overview. And I

very much want

Alison Barkoff: 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.

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.

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.

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.

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: 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: 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: 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: 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.

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.

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.

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.

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.

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: 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: 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.

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.

Can you provide some examples of policies implemented

Katherine Ornstein: 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: 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.

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.

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.

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.

Okay.

Katherine Ornstein: So I feel like Washington State comes up

all the time relative to sort

Alison Barkoff: 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.

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.

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.

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?

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?

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.

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.

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: 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: 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.

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?

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.

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: 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.

Thank you all so much. Thank you.

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