Caregiving

Bradley Cooper, voice-over: Like most people, I didn't even think about caregiving until my father was diagnosed with cancer.

My dad was somebody who I idolized.

I used to dress up like him when I was a kid in kindergarten and get made fun of because I wanted to wear, like, a suit and a tie, And then to go from that to giving him a bath is quite a traumatic thing.

The only good thing about somebody who has an illness that's terminal is that you really can try to enjoy the moments that you have left.

We went around Philadelphia.

We went to a Phillies game.

We sat in the dugout.

So that was a really lovely thing to be able to do.

He was at a point where he needed a lot of care.

I was lucky enough that I was able to be there for him and I certainly benefited from the help that we also got.

I mean, these are heroic people that are caregivers.

Period.

Their ability to focus and give all of themselves is something that I stand in awe of.

This "Caregiving" story was made possible with the support of these generous funders.

Woman: The king is here!

C'mon.

1, 2, 3.

Don't fall.

I don't know what number I'm on now.

6, 7, 8.

Woman, voice-over: I'm a wife that's caring for my husband 24/7.

Whoa.

16.

Good job, man!

Good job.

We're going this way.

Brown-Ekeogu, voice-over: Today is our 21st anniversary.

You gonna dance with me?

Mm-hmm.

Dance with me.

Brown-Ekeogu, voice-over: He was diagnosed with a neurological disorder.

There is no cure.

I cry but never let him see me cry.

Good job.

I'm like, "OK, girl.

Let's get it together."

You ready to get shaved?

Mm-hmm.

All right.

Brown-Ekeogu, voice-over: Now I'm doing total care-- helping him to walk, cleaning him, bathing him.

Thank God for your feet, right?

You can walk.

Brown-Ekeogu, voice-over: The entire process has been mentally draining, physically draining... One more.

Yeah!

Brown-Ekeogu, voice-over: to the point that I could no longer work.

OK, Ken.

Insulin time.

Brown-Ekeogu, voice-over: It took everything that we had left.

My credit card debt went from maybe $2,000 dollars to over $30,000 dollars.

You ready?

Mm-hmm.

Brown-Ekeogu, voice-over: The journey has been tough, but it made me fall more in love with him.

Lay back.

I got you.

Even though he was disappearing, it's like our love was growing.

You, too!

Brown-Ekeogu, voice-over: Where we are now is that he has deteriorated to the point that he needed hospice care.

Come on.

Brown-Ekeogu, voice-over: Finally, there was help.

We can get lotion, razors, any type of continence supplies, as well as a home health aide that can come in and make it a little bit easier... but as of last Wednesday, I was told that he will be released from hospice.

All of the assistance that was in place for him was gonna be gone.

You'll color a picture for me?

Brown-Ekeogu, voice-over: The social worker said that he's not deteriorating fast enough.

Color the bus.

No, no, no, you can't eat that.

You're gonna color the bus.

C'mon.

Brown-Ekeogu, voice-over: I'm like, "What?

"He's not getting better, he's getting worse.

What is--what's the problem?"

[Phone rings] I had some questions in reference to when you're released from hospice.

Woman, on phone: How many days does he have left?

What do you mean by that?

OK, so basically, it's based on how many days you have left and, if you're not dead by that time, then you gotta come off?

Now say that back to yourself and tell me how that sounds.

Brown-Ekeogu, voice-over: I was told that because he's been on hospice a year and a half and he hasn't died, he doesn't qualify for a humane way to leave this world, a way that doesn't kill the caregiver.

I'm gonna continue to fight for him, but without hospice help at all, I've got to figure that out by myself.

It's not gonna be easy.

It's not gonna be easy.

Woman, voice-over: Care is what makes us human.

Care is the first and most fundamental human connection that we need from the time that we're born throughout our lives.

Man: Care and caregiving is a source of pride, a source of sadness and oftentimes joy.

So my dad is actually a medically retired Navy SEAL, and now he's, like, helping me just get stronger.

Man, voice-over: It's intense.

It's the most intense work that somebody will ever do... Good job.

and it's universal.

Woman: 1, 2.

Do you think we look alike?

Woman: Mom, are you funny?

Yo yo yo yo!

Woman, voice-over: Care includes the work of cooking, cleaning, nursing, teaching, feeding.

[Laughter] Woman, voice-over: This care work is essential to the functioning of the American economy.

So care is much more than just one issue among many.

It is the foundational issue for contemporary American society.

Woman: I'm here caring for two sick people, which is definitely hard, harder than anything I've ever done in my life.

Woman, voice-over: But everyone is burning out, whether it's the family member or the care worker.

I feel like every--every hope and dream that I've ever had has now been taken from me.

There's just this simmering crisis that has been playing out.

The pandemic helped us to see all of that, to see that we do need a new approach to care in this country.

[Indistinct conversation] Uzo Aduba, voice-over: In April 2024, caregivers from across the country gathered in Washington, DC for their most-high-profile-ever rally.

Woman, voice-over: My day started at 5:00 A.M.

I prayed and then went over to the Union Station.

I'm a home care provider from Los Angeles.

I care for my daughter Diamond Smith.

Aduba: Caregivers and the work they do are generally invisible to the wider world.

Man: Mic check, 1, 2, 3, yep, 1, 2, 1, 1.

Aduba: They had come together to celebrate one another--and to press the federal government for recognition and support.

Woman, voice-over: This is caregiver month.

It made all of us feel like we're being seen and heard and we're not forgotten.

Woman, voice-over: This rally is really about putting care work and caregivers at the top of the national agenda.

We're gonna be letting people know that their care stories are powerful and that their voices matter.

[Cheering and applause] Good Morning.

Welcome to our rally for care!

[Crowd cheering] I am a proud caregiver raised by the care of loved ones and care workers, and I'm here today because I know in homes across this country, families are struggling to care for the people we love.

For too long, we have been isolated, unsupported, undervalued.

We are the caring majority in this country.

[Cheering and applause] And we won't wait for change.

Care can't wait!

[Crowd chanting "Care can't wait"] [Cheering and applause] Aduba: As America's population has been aging and the gig economy growing, calls from caregivers for policies that support them have increased in urgency.

What we have in the United States is a situation where every single day, 10,000 people turn 65, and, because of advances in health care and technology, people are living longer than ever before... and we've got none of the systems or policies in place to support a quality of life for that extended period.

And on the other end of the generational spectrum, we've got millennials giving birth.

4 million babies are born every year in this country.

And so across the generational spectrum, we need more care than we ever could have imagined or that we've ever designed for.

All right, Jerome, let me see your arm.

How do you feel about doing it in your hand?

Poo, voice-over: And so we've also relied upon a caregiving workforce, millions of vast majority women and majority women of color who work providing the care that makes everything else possible-- the childcare, the eldercare, the attendants for people with disabilities-- and they're underpaid.

They don't have benefits.

They don't have any kind of job security or health care.

So the women that we're counting on to take care of us and our families can't take care of themselves or their own families in this profession.

[Train rattling on tracks] Good morning, Sherie.

How you feeling this morning?

You OK?

Let me get your stuff together.

Woman, voice-over: I always say, not everyone could do this job.

It seems easy.

Yeah, you take a test, 4-week training.

But it's nothing like when you're in the home.

It's never been easy.

Let me pat dry your face.

Woman: voice-over: But, with time, I found the love for what I do, and I've been doing it now for 23 years.

OK, let me get your fingers.

Let's start with your fingers, like we do.

OK. Now you're flexible, mija.

Woman, voice-over: A lot of people would rather be home, even if they have an illness.

But they're home in their own comfort.

Pretty toes.

A lot of them don't have family.

The holidays come.

Mother's Day come.

Father's Day come.

A birthday come, and we're the one that are there for them.

Man, voice-over: Most caregivers in the United States are women, and for those who are direct care workers, principally, women of color.

And I honestly believe that one of the reasons why we haven't compensated them adequately, haven't paid them the respect that they absolutely deserve, is because of who they are.

Alright, try it now, mija.

Man, voice-over: We need to look in the mirror, say to ourselves, think of the service that these people are providing.

Here you go.

Man, voice-over: The importance of the job.

And let's please reimagine, not only what they mean to us, but how we should treat them, how we should pay them, how we should respect them.

Torres, voice-over: We're there to give them moral support, to let them know they're gonna be OK, that they're not alone.

To see that smile on their face, that fills my heart.

It could be me, it could be my mom, it could be anyone, and it's being selfless and having patience.

We sacrifice a lot.

When I go home, I have a whole family that I got to tend to.

[Birds chirping] Man: I met Kanlaya in 2010, and I knew she was the one.

We knew we wanted to start a family.

So after I proposed, we bought this fixer-upper house and we've been fixing it up together.

Cauli: What are you doing?

Cleaning.

First day of cleaning.

We had our son in 2017.

And then in 2020... Whoa!

our lives turned upside down.

[Machine beeping] We were on the trampoline.

She complained of a headache, so we went inside.

I turned around, and she was in a very awkward position.

She wasn't responsive, so I called 911 right away.

Ambulance came.

They took Kanlaya.

I couldn't leave because I had to stay with Ty, which is pretty much the story throughout... this struggle of my son needs me and my wife needs me.

She was 35, no medical issues, no family history.

All of a sudden, she had two massive strokes.

Her brain was permanently damaged.

They scanned her body, and they found a 10-centimeter mass in her abdomen, and it turned out to be ovarian cancer.

And the ovarian cancer is what caused these strokes.

[Breathing softly] Cauli, voice-over: And this all happened at the height of COVID.

So I had to do everything myself.

And all I had was Kanlaya.

All she had was me.

At that time, I didn't even know what a caregiver was.

I always thought it was for old folks, your parents.

And then I had to quit my job.

I almost felt pushed out as a caregiver because they didn't know what to do with somebody in my position.

They expected things to go back to normal, but for me, like...it's not going back to normal.

Hey, what's going on, TikTok?

My name is Matt.

I'm creating this video just 'cause I'm trying to reach out for some help.

So my wife, she's 35.

She had a stroke back in May.

I have a 3-year-old, and right now I'm the caretaker.

I'm taking care of everything, and it's been really tough.

There was nobody to turn to, and so what I did was turn to social media.

Doing everything I can to see my family through, and I'll get through this, but it'd be great to talk to somebody, so if anybody's ever been through anything like this, please reach out.

Cauli, voice-over: I started to see it resonate.

Crystal Lariza: Roll along, sing your song Paint the sky Do your best, leave the rest, you don't need to ask why Cauli, voice-over: It started out a few hundred and then it became 1,000 and then I started to do chemo dancing with Kanlaya.

But it's a roller coaster and not all just good times.

The videos show happy sunshine and rainbows, but, you know, it's not all the time.

And then I started to post videos that were a little more truthful and not sugar-coated.

This is my wife, this is my partner in crime, you know, the mother to my child, you know, my soulmate, so it's been really tough.

[Screams] I had nothing to lose.

I didn't care if people saw me scream or yell or--I just had to get it out there.

I just feel like my family, my family's been robbed of, like, just a normal... just a normal life.

It actually helped others out as well as helping me out.

People were thankful for it.

I read every single comment and it was a spirit booster, a faith booster.

Lariza: I just want to see you shine Wherever you go, I just want to see you shine Go on in the world, just send me a sign I just want to see you shine Cauli: It's just--it's good to know you're not alone.

Yay!

Yes!

Irving, voice-over: We know the numbers of caregivers are multiplying.

And the challenge for all of us in the United States is, how do we deal with it?

Are we ignoring something that's going to affect not only every one of our lives, but our businesses, our communities, our schools, our hospitals?

How do we measure the success of America?

Is it just GDP?

One of the ways is our success in providing care.

If we are a caring society-- caring for our children, caring for our older adults-- we end up with a country that's happier.

It's a country where more people have the ability to work and work well.

In the next version of America, could care be a driver of our success and how we feel about ourselves?

Aduba: The first time the United States confronted the challenge of caregiving as a country was 100 years ago during the Great Depression.

Millions of families lost their livelihood and all their savings.

Woman: It was fundamentally a crisis of people being unable to care for themselves and to care for their children.

We have to understand, economic crises in this country, whether it is in the Great Depression, whether it is during COVID, as, fundamentally, crises of care.

So economic crisis is also care crisis, and a care crisis is also an economic crisis.

Aduba: When the Depression hit, the president, Herbert Hoover, declined to provide large-scale federal support to the American people.

He believed it would discourage them from work.

[Marching band playing, crowd cheering] Aduba: 3 years later, with the Depression still impacting millions of families, the 1932 election became a national referendum on whether the government should now act.

Hoover held his line.

["Hail to the Chief" playing] [Crowd cheering] [Crowd cheering] Aduba: In contrast, his opponent, Franklin Roosevelt, promised bold government action.

Roosevelt: I say to you now, I pledge myself to a New Deal for the American people.

[Crowd cheering] Aduba: Looking for a way out of the Depression, voters elected Roosevelt in a landslide.

[Crowd cheering] Aduba: From an office in his New York townhouse, Roosevelt chose the members of his cabinet.

He left the most important job for last-- the Secretary of Labor.

To discuss that position, he called a meeting with a trusted adviser and talented administrator-- Frances Perkins.

Woman: Frances Perkins comes up the stairs, she describes the room as chaos.

Papers piled high all around.

And he offers her the job.

With 33% unemployment, the secretary of Labor was really the point position in the whole Roosevelt administration.

They had to do something to help alleviate the crisis state of the American population.

Aduba: Perkins paused before responding to the job offer.

For all Roosevelt's campaign talk of a New Deal, he had not worked out the details.

But Perkins had.

Looking far beyond the Great Depression, she told Roosevelt she wanted to build America's first federal safety net for families and workers.

Downey: She had around 10 items on her list-- unemployment insurance, old-age pensions, help for children, 40-hour work week, a minimum wage.

The last of the items was national health insurance.

None of these things had really been discussed in his campaign, but Perkins had been making her own plan.

Aduba: Perkins' journey to architect of America's social safety net was an unlikely one for a woman in the early 20th century.

Originally a social worker before the Great Depression, Perkins had seen firsthand how the same problems played out in household after household when someone was unable to earn a paycheck.

Downey: People had always been expected to be self-reliant.

That was something built into the ethos of the United States, but it became increasingly obvious, you needed to have supports to help compensate for economic shocks that every family would have.

And one of the things Perkins did was try to create a system that will help them until better times come.

Aduba: Perkins stopped working when she had a child but had to find a job again after her husband fell sick and needed care.

Downey: Perkins is such an unusual person in so many ways.

Most people who end up in leadership positions come from wealth.

Most women who've ever held power in world history have been someone's daughter, someone's wife, or someone's mother.

Perkins doesn't come from that.

She comes from a middle-class family where they have to come up with their own caregiving strategies.

Aduba: She'd earned Roosevelt's trust as one of his advisers when he was the governor of New York.

Now she took the job of secretary of Labor only after he agreed to support her plan for a federal safety net.

"The people are what matter to government," Perkins believed.

"And a government should aim to give all the people under its jurisdiction the best possible life."

Downey: At first, Perkins had to deal with just the most immediate crisis of wholesale starvation, but the big initiative that really changes things is the Social Security Act.

Aduba: Perkins led a committee that devised the Social Security program in just 6 months.

She then pushed the bill through Congress, winning overwhelming majorities in both chambers.

Woman: The Social Security Act was a many splendored thing.

It included a system of old-age retirement pensions, unemployment compensation, aid to dependent children, and a couple of very targeted disability programs.

It's providing people with the economic resources to care for themselves during these periods when they do not have independent sources of income.

But it isn't charity.

That is an earned benefit.

You work.

You get credits, so that when you need the money later, it will be there.

And that's one of the things that's made it so successful and so popular across all political parties.

Aduba: With Frances Perkins standing right behind him, Roosevelt signed the Social Security Act into law.

[Camera's shutter clicks] Woman: It's impossible to overstate the significance of the Social Security Act or the revolution in the role of the federal government that it represented because the federal government had not been involved or expected to be involved in the provision of care.

That was just not its job, but now it was.

Aduba: But for Perkins, it was not the total success she'd wanted.

Affordable, universal health insurance was a core part of her plan for a family safety net, but she chose to drop it in the face of relentless opposition from doctors, who favored private health insurance.

And in Congress, southern Democrats insisted that farmworkers and domestic workers were excluded.

Woman: The people who are excluded are the people who are already low-wage workers.

They're in the lowest-paid sectors of American society, and they're not only denied decent wages during their working lives, but they're denied security in old age.

Aduba: In all, nearly half the American workforce was denied access to Social Security, including most women and minorities, who did the bulk of care work.

Poo: You saw a transformation and you also saw this exclusion of who would benefit from that transformation, and it was codified in those very policies.

And those two groups, domestic workers and agricultural workers, stayed highly insecure, without a safety net, and so those vulnerabilities that were revealed in the Great Depression remained.

[Birds chirping] [Crunching] Woman: Oh, Dad loves his jelly.

[Laughs] My dad has been living with me for a little over 3 years now.

He has Alzheimer's disease.

And in April of 2023, we noticed that he couldn't move.

I had him hospitalized.

They declared him as "failure to thrive" and so they had recommended that I put him on hospice.

Hi, Dad!

[Laughter] You ready to play?

Check out this fruit variety we got here.

Eacret, voice-over: Caregiving was just not something that I had done before.

But I was ready to do whatever it took to make sure that my dad had a quality to his life.

You ready to rock out?

[Rock music playing] Eacret, voice-over: I'll let him know what the day is.

Happy Saturday, Dad!

Eacret, voice-over: And then I change his brief... Be quick.

Eacret, voice-over: give him his medicine.

Dad.

Hey, Dad, you ready to take this?

Here's your first one.

Eacret, voice-over: When I first brought my dad home, there was a lot of fear... Can you hold this for me?

Come on.

Thank you, Dad.

Eacret, voice-over: fear of the unknown, of can I do this and do I have what it takes to be able to care for somebody in this condition?

Whoa, whoa, almost done.

Eacret, voice-over: That also meant figuring out how to maintain his sense of dignity throughout this process.

To the planets.

Eacret, voice-over: It was a roller coaster of grief.

Brush your hair, OK?

Eacret, voice-over: It was, like, becoming so real that my dad was declining and that it was going to be like this until we were done.

I mean, we're both-- we're in it together.

He's just as scared and confused as I am, and I can tell, you know?

And so it's nice to share it with him, and laughter and love will pull us through.

I'm gonna help you get in the chair, OK?

OK. Eacret, voice-over: Once my dad's care is 100% complete... Up, up, and away.

Eacret, voice-over: I like to have a transition period from caregiver to daughter.

Then I'm able to sit down and just be present with my dad and laugh or also sit in silence with him because sometimes, silence is very beautiful between us, too.

I had to be the primary caregiver for my dad because I promised him I would be.

I'm gonna keep that promise to the full extent.

I will do whatever it takes to be able to make sure that my dad is comfortable at home, surrounded by his loved ones, until the end.

Woman: Hi, John.

Good to see you.

We're gonna record your heartbeat today.

Yeah.

Good.

Ha ha ha!

Eacret, voice-over: The heartbeat project is a legacy piece for my dad... All right, John, here we go.

Eacret, voice-over: to create a song with the rhythm of my dad's heartbeat that also encompasses memories that we have together and just who my dad was before the disease took over.

[Heartbeat] That's your heartbeat.

Eacret: Did you ever hear your heart before, Dad?

You've got a big one!

That's for sure.

Woman: He's got a very big heart.

Ha ha!

That's really cool.

Yeah, that was cool.

Eacret, voice-over: One of the scariest things that I'm faced with right now is what do I do once my dad is gone, is to figure out how do I live without my dad then.

Thank you for recording and letting me hear it like that.

Man: That was cool.

Woman: Yeah.

That was just as exciting as hearing a heartbeat in a belly.

[Laughs] To be able to hear somebody's heartbeat that you love.

It's moving.

Eacret, voice-over: I've discovered that my dad is my soulmate.

I feel like our souls were meant to come together.

I'm gonna change your shirt, OK?

Eacret, voice-over: My dad saved me when I was a kid and now I get to return the favor.

[Birds chirping] [Crowd cheering] Newsreader: Throughout the world, throngs of people hailed the end of the war in Europe.

It is 5 years and more since Hitler marched into Poland.

Now the war against Germany is won.

Aduba: World War II marked the end of the Great Depression and the beginning of a new chapter in American history and its care story.

Frances Perkins tried again to make health insurance a core part of the federal safety net, but the moment had passed.

Federal investment went, instead, to America's growing middle class and the highways, colleges, and suburbs that enabled them to thrive.

Poo: You have this story of a nuclear family that gets cemented, where you have a husband, a wife, two kids, a picket fence, and, as the woman, your role is to take care of all things domestic, household and care, and the man goes to work and brings home the paycheck as the breadwinner.

Newsreader: The family as an institution has changed greatly.

But it still carries out its essential functions-- reproduction and the care and socialization of the young.

As long as it maintains these functions, it will continue to flourish.

Poo: That narrative was really only true for a set of people.

For working-class people, in particular, there just weren't the options, but there was kind of an aspirational organization of society around it.

Aduba: But beneath the surface, all was not well in the American family.

And caregiving, particularly childcare, was at the heart of the reason why.

Muncy: The culture is saying to women, care is your responsibility at home and it is a private duty... at the same time that the economy is desperate for women workers who often have to work for a living... and so they're put in this vise that's impossible to bear.

Aduba: By the 1960s, the second-wave feminist movement was emerging from this sense of frustration.

Women began pushing for equality in the workplace and the assistance, especially with their childcare, that would make it possible.

The question became, what's going to happen to care?

So if you don't think this picture of women staying in the house and doing care and men going out to work is an ideal, let alone a reality, what's going to happen with the caring?

How could you think about care if women also are going out in the world and being educated and being in the workforce?

Aduba: In Washington, DC, a group of women, led by the children's rights advocate Marian Wright Edelman, came together to turn childcare slogans into a detailed plan.

Muncy: Groups within the labor movement come together with this emerging feminist movement, come together with welfare rights activists who are demanding a more just welfare system, civil rights activists who think of childcare as a civil right.

All of these groups in that incredibly vital moment of social reform in the late 1960s coalesce behind a program of comprehensive childcare.

Aduba: They were inspired by the childcare policy the federal government had adopted in World War II to attract women to the workplace.

[Steam whistle blows] Man: Fingers and hands that plied the knitting needles are turning their deftness to wing assembly.

Hands that had toiled not nor spun are taking up the torch of the welder.

Woman: The image of Rosie the Riveter made heroes out of female workers who went into defense plants... but this created a crisis for them individually because there was no childcare.

Aduba: Needing to recruit millions of women workers, the government funded high-quality childcare centers near defense plants.

Newscaster: When married women with small children have to take jobs, everything possible will be done to provide day care for the children.

Man: We built childcare centers all over the country so that mothers could go to work.

We extended school, and teachers took on additional responsibilities, educating young folks on what civic responsibility and care for the family and the country looked like.

We created a citizen response that this country had never seen before and, frankly, hasn't seen since.

Muncy: Americans are thinking of childcare as infrastructure.

They're thinking of childcare as the same thing as roads and bridges and the other things you need to get production under way.

So it's a really, really fertile moment.

Newsreader: This is Operation Homecoming.

Aduba: But at the end of the war, public support for women in the workplace-- and the federal caregiving policies that would make this possible-- quickly evaporated.

Woman: The childcare centers provided this glimpse of what could be possible, but it was evanescent.

As soon as the war was over, the federal funds dried up and, with them, many of the childcare centers.

Aduba: But some of the women who protested these closures after World War II continued to lobby for federal childcare.

And, in the late 1960s, they finally persuaded Congress to take up a bill establishing publicly funded care for all children below school age.

[Indistinct chatter] Poo: For the poorest of children, childcare would be completely free.

Everybody else would have access to the same system and they would pay a sliding scale based on need.

It makes so much sense and it made so much sense to Congress at the time because it passed through both houses, which is a feat in this country.

Aduba: Next, the bill went to President Nixon for his signature, so that the work of building these centers could begin.

Michel: At first, people thought that President Nixon might actually sign it.

But there was strong backlash from people like Phyllis Schlafly, conservatives who were very concerned that increased women's entry into the labor force would undermine the traditional family.

The American dream is a mother sacrificing her own career advancement in order to give her children the best care that she possibly can.

I think that a woman can indeed have it all, as I have had, if she realizes that she can't have it all at the same time.

Poo: And then Nixon vetoed it.

And you can start to see the story that is taking hold-- "This is government raising our children."

"This is too costly"-- and really pushing back against the idea that government should have any role in our caregiving, that it should be on the individual, on the individual family.

Man: With one stroke of the pen, President Nixon has broken his own promise and he has greatly damaged the chances for the children of working families, as well as poor children, to have an opportunity for the kind of healthful and stimulating development which the President pledged to support.

Aduba: The United States had come closer than ever to adding universal childcare to its federal safety net for families that wanted it.

But what was put in place instead was a complex system of tax credits for families and employers.

And today, half of Americans live in areas with high childcare costs and the other half live in areas with limited access to childcare centers.

For the country's 50 million working parents, the challenge of balancing work and family is getting harder.

Woman: Women's influx into the workforce led to growth in our GDP--10%, 11%, 13%.

So from a economic standpoint, women in the workforce actually grows our economy.

So it's absolutely clear that if we want to grow our economy, then we have to be willing to invest in women, and that means you invest in care.

[Whooshing] Woman, voice-over: The pregnancy was completely normal, like, by the book.

Having always wanted to be a mom, just like, wow, like, my dream's coming true.

Like, I'm so lucky.

I went to my 37-week exam, which was on a Friday.

And everything looked good.

But come Monday, I woke up... didn't really feel her move and I sort of, you know, like, "Hey, baby, good morning."

Nothing really.

I'm like, OK, so I told Guillaume, I'm like, "OK.

I think I should maybe call the doctor just in case."

They hooked me up to the monitor, and he's like, "I'm so sorry, but we have to do an emergency C-section."

And then I see her come up, and she looks kind of blue, purple, and I looked to Guillaume because it was quiet, like, she was quiet.

Man: And that's when the doctor was just like, "Hey, we need to check her out because, like, she seems to have some difficulty breathing."

[Machine beeping] Kim, voice-over: The time sort of blurs.

And then the doctor said she did suffer a severe brain bleed which has caused catastrophic global damage.

I just remember, you know, screaming, like, "My baby, my baby," like, why... you know, and they would say it's worst-case scenario.

She--you know, she won't eat, she won't talk, she won't walk, she won't be aware of the world around her.

And they said she won't go to school.

She won't make friends.

Like, just basically, like, she was just going to exist.

11 days later, I got a call from the head nurse and she's like, "Hey, Kim, we're gonna need you to come in.

"Charlotte's not doing well.

I don't think she's gonna make it the night."

[Machine beeping] They're like, "Do you want to hold her?"

I'm like, "Really?

I can hold her?"

And they're like, "Yeah, absolutely."

Like, I didn't realize it was because I was gonna say good-bye.

[Machine beeping] Kim: Charlotte.

Beautiful girl.

I love you.

She was basically almost flatlined.

My mind is thinking how do I squeeze in a lifetime of, like, everything I want to tell her.

OK. Love you, baby girl.

Kim, voice-over: I told her, "It's OK. You can go."

"Like, we'll be OK." But, like, knowing, like, "Please don't," like, "Please don't."

And they were, like, just giving us, like, blankets to pick out and, like, a little bow for her hair.

And they took, like, an imprint of her hand.

And I held her and held her and held her and held her.

Kim: Hi, sweetheart.

Kim, voice-over: And then she started opening her eyes.

Hi.

Good girl.

Kim, voice-over: She stabilized in my arms.

Kim: Can we see those eyes?

She didn't go.

She didn't go.

Look at your little face.

Want to see?

Yeah.

Yeah, good girl.

Yeah, good girl.

Kim, voice-over: The care is healing.

Absolutely.

For both of us, yeah.

[Bell rings] Aduba: In the 1960s, America's booming post-war economy made it the most powerful country in the world.

News reporter: Addressing the US Chamber of Commerce in Washington, President Johnson optimistically predicts that business profits will be up several billions to $30 billion this year.

Aduba: But people who couldn't work weren't able to benefit from the good times.

And, as the gap between rich and poor widened, President Johnson looked to strengthen the federal safety net that had been built in the Great Depression.

This administration today, here and now, declares unconditional war on poverty in America.

[Applause] But we shall not rest until that war is won.

The richest nation on earth can afford to win it.

We cannot afford to lose it.

[Applause] [Indistinct chatter] Aduba: He focused on managing families' health care costs.

But instead of universal health care, he pushed Congress to enact Medicare and Medicaid, which provided federal support for just two groups-- the elderly and the poorest.

Newscaster: President and Mrs. Johnson and Vice President Humphrey arrive for ceremonies that will make the Medicare bill a part of Social Security coverage.

The new bill expands the 30-year-old Social Security program to provide hospital care, nursing home care, home nursing service, and outpatient treatment for those over 65.

[Applause] Aduba: The passage of the Medicare and Medicaid programs extended the social safety net, and today, they provide a lifeline to over 135 million people.

I got breakfast for you.

Man: That's good.

[Indistinct] Aduba: But medical care-- and its cost--are only one part of a family's caregiving journey.

Most people need long-term caregiving as they age or manage a health condition.

Man: I have lost track of my many baby boomer friends that are always asking me, "Fernando, my kids aren't around.

I need help.

Who can I call?"

I then have to go through this whole thing of... "You're screwed."

I mean, you know, we don't have public financing that's universal regardless of criteria or savings or condition.

We are the one country in North America, in the OECD countries, you know, the advanced countries, that cannot guarantee you some form of caregiving.

Irving, voice-over: Americans are not prepared for the challenges of caregiving.

Oftentimes, this happens really out of the blue.

What you realize is that health insurance doesn't cover these needs.

Life insurance doesn't cover these needs.

Property and casualty insurance doesn't cover these needs.

Who's gonna help you pay?

And the cost of caregiving is unbelievably high for many, many people, and very honestly, completely unaffordable for most.

Medicare provides no caregiving support, and Medicaid, which is a program that supports low-income Americans, does provide limited support.

So incredibly, more and more middle-class Americans are forced to pay down to poverty so that they can qualify for Medicaid.

That's a crazy system.

It's a crazy system for them.

It's a crazy system for our federal government.

Woman, voice-over: My name is Jennifer Gutierrez.

All right, let's do this.

Hello!

You guys having a good time?

Man: Where's Jacob?

Jennifer: Right there.

Man: Oh, there he is.

Hey!

Jennifer, voice-over: I'm the mother of Jacob.

He is 14.

Man: What's up, lady?

Jennifer: Hi, baby!

Man: How you doing?

Woman: Good!

Jennifer, voice-over: He knows that Mommy has this horrific disease, MS.... Give me a hug.

Jennifer, voice-over: and that there's no cure... but I do take medication once a month and the infusion slows the process of the disease.

They're all so excited and so, like, nervous about going to high school.

Jennifer, voice-over: Jacob is my baby.

Give me a last count.

How many want hamburgers?

Jennifer, voice-over: I don't like the fact that he is always worried about me.

He's like a 40-year-old man stuck in a 14-year-old's body.

Thank you so much.

You're welcome, my love.

Jennifer, voice-over: I want Jacob to be a kid.

He needs to have his time.

Everybody is good?

Jennifer, voice-over: He needs to be able to have fun with his friends because he deserves that.

Man: Come on, Luna.

Man: Come here.

Come here.

Jacob, voice-over: My mom has MS.

So it's a disease where it basically eats away at your body.

And, like, some days she could feel good, some days she could feel bad.

And on those days, it's hard to see her struggle.

Jennifer, voice-over: I don't like asking for help and I don't want to be a burden.

Jennifer: Which kind of pasta do you guys want?

And you can throw out that rice.

Tonight is garbage night.

Man: Uh-huh.

Jennifer, voice-over: My husband's family has a saying-- "If you need anything done, Jennifer's on the case," because I'm the one who gets everything done.

But it's incredibly hard.

All right, Jake, you're gonna need to put the garbage bag on because I'm not fighting with it today.

Jacob: Need to do what?

Put the garbage bag on because I don't want to fight with it today.

Jacob, voice-over: It is unfair that my mom has to go through all these struggles.

Jennifer: Jacob!

Jacob: Yes?

Can you open this?

I could try.

Jacob, voice-over: I've always been a big help.

I make sure that she takes her medicine.

[Water running] If my mom ever needs help cooking, I'm her hands.

Jennifer, voice-over: Jacob, he's my hands, because I don't feel my fingers anymore.

Now you make the balls.

Jennifer, voice-over: When I'm able to get my infusion, I will be feeling a trillion times better.

All right, I'm gonna go lay down.

All right.

[Kiss] I love you.

Feel better, OK?

OK.

Thank you for cooking.

[Kiss] You're welcome.

And I'm not complaining, because I'm glad that I'm a caregiver, I'm glad that I'm able to help my family.

Man: How long do I put them in for?

Jacob: 10 minutes, flip 'em, 10 minutes.

Dude, why are you playing with all the balls?

Because you've gotta have enough room for the balls, OK?

[Man and Jacob laugh] These boys and their balls.

[Man and Jacob laugh] Nadasen, voice-over: We tend to think about care as the care receivers and the caregivers, and, in fact, that's a false binary, because we are all care receivers.

Everybody needs care at some point.

Every good morning we give to somebody, every time we provide food for somebody, all of that is care.

We need to think about care as woven throughout our lives.

[Helicopters flying] Soldier on radio: Proceed with caution.

Over.

Newsreader: It is a different kind of war than we've ever fought.

Soldier on radio: This is last guard 6.

Receiving sporadic sniper fire.

Over.

Aduba: The Vietnam War defined a generation.

[Gunfire] It also marked a significant turning point in the story of caregiving.

We got ambushed, and last thing I remember was a chopper flying in to pick me up.

Aduba: With combat medics pushed to the frontline, soldiers were now surviving with severe injuries.

Reporter: VA estimates that a quarter of a million Americans who would have died in any previous war survived Vietnam.

But that also means that many more soldiers have survived with serious disabilities.

Woman: These individuals, as they were returning home, they were realizing that there weren't a lot of services.

They didn't really have options for jobs.

Am I angry?!

Sure I'm angry!

Why shouldn't I be angry?!

We busted our ass, we went over there.

They give us a piece of paper that says to us we are Vietnam veterans and we can get disability, and we can get a job, and we ain't got nothing.

If we can fight for them, why can't they fight for us Vietnam veterans?

Peace now!

Peace now!

Schwab: The war was divisive.

End the war!

End the war!

End the war!...

Schwab: And so culturally, you saw a 180 during Vietnam from what we saw in World War II.

"Service" became a curse word.

And we saw folks coming back from war who were being spit on.

They were coming home with lots of injuries.

And we were not prepared at all to care for Vietnam veterans.

Aduba: Over time, the federal government responded to the care crisis facing veterans and built a robust, large-scale Department of Veterans Affairs.

Schwab: We saw policymakers understanding that we needed to create an American systemic response to Vietnam.

After the war, we saw the GI Bill pass.

We saw VA start home loans so our veterans and their families can have a home and can work.

Announcer: The disabled veteran, he's given a lot and he's got a lot more to give.

Contact your local VA or state employment service office.

Schwab: Today, there's 160-plus hospitals and health facilities across the country that have been built since the 1970s, a massive, massive investment of infrastructure.

And VAs have become centers of the care economies in small and large America all over the country.

Aduba: While the nation was holding out more of a helping hand to veterans, it left others with disabilities to fend for themselves.

Seeing common cause, many disabled Vietnam veterans joined forces with civilians in the disabilities rights movement to demand change.

Man: We want our civil rights!

Crowd: Sign 504!

Man: We want our civil rights!

Crowd: Sign 504!

Aduba: Their first fight was for the implementation of a law protecting them against discrimination, known as Section 504.

Crowd: Sign 504!

Sign 504!

Ives-Rublee: We saw a lot of protests happen, and people saying, "I want to be able to get a job.

"I want to be able to be paid fairly, to not be discriminated against."

Woman: It would mean that children who've now been educated, if at all, in buildings far from their non-disabled peers would be able to go to school like normal children.

People with disabilities also have civil rights!

Aduba: After the protests won them basic protection against discrimination, disabled people turned their attention to the right to live independently at home, rather than be confined to state institutions.

Woman: The Independent Living Movement was a huge sea change when it came to disability rights.

People with disabilities-- their families were told to put them in institutions, to put them in hospitals.

And then you had some parents starting to fight for the integration of their family members, but it wasn't the disabled people themselves.

So the Independent Living Movement was disabled people taking charge of what they wanted in their future and what they wanted from society.

Geraldo Rivera: I first heard of this big place with the pretty-sounding name because of a call I received from a member of the Willowbrook staff, a Dr. Michael Wilkins.

Aduba: Disabled people's calls for autonomy over their own care struck a chord because of a national scandal about state institutions.

Rivera: The doctor had warned me that it would be bad.

It was horrible.

Woman: Word of the conditions in state institutions was coming out.

People not cleaned, tied up in their beds.

This was seared in my mind and memory because at that time, I already had a child with a disability.

Families were not getting any support, any financial support for keeping their children.

I was told to give up my daughter, which was something that was unthinkable to me.

But I could also understand parents who did do so.

Aduba: The images from Willowbrook eventually forced its closure.

Over the 1980s and 1990s, more and more institutions closed their doors, too.

Man: The system that existed of institutionalizing people was dismantled, and it was not replaced.

It was not replaced with institutionalized care, any government-supported care.

It was replaced by family members.

Crowd: Go, go, go, go, go, go, go, go, go, go!

Man: People are now climbing up the inaccessible stairs.

Aduba: Deeply frustrated, people with disabilities fought for and won landmark legislation that gave them the rights to the care infrastructure they need-- ADA now!

ADA now!

Aduba: the Americans with Disabilities Act, or ADA.

Woman: Just pace yourself, pace yourself.

Ives-Rublee: People say the disability community is voiceless, and it's really that people aren't listening.

Disabled people were getting tired of being spoken for.

They wanted to go to school.

They wanted to get jobs.

They wanted to support themselves.

They wanted to make decisions for themselves.

George H.W.

Bush: With today's signing of the landmark Americans for Disabilities Act, every man, woman, and child with a disability can now pass through once-closed doors into a bright new era of equality, independence, and freedom.

I now lift my pen to sign this and say, let the shameful wall of exclusion finally come tumbling down.

[Applause] Woman: We're almost there, we're almost there.

[Cheering and applause] Aduba: For the more than 40 million Americans living at home with disabilities, the Act, though imperfect, has been transformational.

It's the reason why there are elevators and ramps in public buildings and that transportation is more accessible.

And the benefits of this care infrastructure extend far beyond people with disabilities.

Ives-Rublee: When we create accommodations for the most marginalized, we create access for everybody.

We actually call that the "curb cut" effect.

Disabled people were tired of not being able to get off the sidewalk and go across the street.

And so they and their allies got jackhammers and just, like, created curb cuts on their own.

The rest of the community realized, oh, this is really helpful.

People with baby buggies, people on bikes, and seniors were all benefitting from this curb cut.

Aduba: But whereas public accommodations for disabled people were being made, in private homes, families were still left largely to fend for themselves.

[Charlotte giggling] Kim: Mwah.

That was a lot of emotion.

Wow!

You're funny.

You're funny.

[Kissing] Kim, voice-over: So she was 3 months old when we brought her home for the first time.

Go.

Yeah.

You want to push off of me?

Go ahead.

Kim, voice-over: But the smoke didn't settle until maybe a year and a half, two years after, where I felt like, "OK, we're--we're OK. We're OK. She's OK." Ah!

[Chuckles] I love you!

You're so cute.

You're so cute!

Kim, voice-over: Technically, Charlotte has cerebral palsy, which, to us, was a relief because once you get the diagnosis, getting care and medical resources is easier.

Nobody wants their kid to be diagnosed with, you know, a life-altering condition or disability, but, at the same time, you know, talk to any medical parent and they're like, "Yeah, the day my kid got diagnosed, I was like, "Oh, thank God, because now I can get the services."

Kim, voice-over: So each month, we get our DME, or durable medical equipment, shipment.

Everything is a month's supply.

So feeding bags, syringes, formula, and then a spare G-tube.

So she gets 3 different types of syringes.

Kim, voice-over: First and foremost, I'm Mom.

Then I'm nurse.

Then I'm therapist.

These are, like, regular puzzles that I painted black to make them more accessible for her, for her vision impairment.

Kim, voice-over: Then I'm admin., housekeeper.

[Chuckles] Yeah, I'm all of the above and probably more than I know.

But I try to be first and foremost Mom.

Kim: Uh!

Kim, voice-over: Charlotte is non-verbal... which does not mean non-communicative, so she can communicate.

Can we play on Toby for a little bit?

Voice: Yes.

Kim: Yes?

OK, great.

Kim, voice-over: When she reached maybe 2 1/2, 3, her need to actually communicate became so that she was getting frustrated and I didn't know what to do... until we had a therapist who was like, "Let's try something."

And so we started very primitively with two little buttons.

A green button for yes, a red button for no.

And it became more and more obvious that, OK, she is understanding.

Want to do Brown Bear?

Voice: Brown Bear, Brown Bear, What do you see?

Kim, voice-over: The device has been transformational.

It's given her a voice.

Kim: Want to keep reading?

Voice: Yes.

Yes?

Charlotte: Blue.

Kim: Yeah, blue.

Blue horse.

You want me to touch it?

Kim, voice-over: She's more verbal now.

Kim: Go ahead.

Voice: Yes.

Kim, voice-over: And it's also not cheap.

We applied for it through Medicaid and Medicaid denied the device, but luckily, our insurance approved it.

Our $20,000 device.

OK. Do you want your rings or something?

Guillaume and Kim: No?

Charlotte: No.

Kim, voice-over: At one point, the doctor told us there are facilities where you can put her.

And I'm like, I can't imagine having her in a facility, for one, and then, you know, what do we do?

So we visit her once a week on a Sunday and stop by and make sure... like, I--I can't do that.

Guillaume, voice-over: So now Charlotte is going to school.

We never thought it would happen.

It was just very, very exciting.

And for Charlotte being around other kids, it's just--it's just wonderful because, even though they all have some kind of disability, they are able to communicate to each other, and you see all that beauty in one whole classroom.

Kim, voice-over: School was a huge milestone.

And doing the first-day -of-school picture... like, I don't think people, unless you're in it, can grasp, like, how huge that is.

[Camera's shutter clicks] Care means making sure as many experiences as possible are fun because life is short and we've seen not-fun times.

Making sure all of her needs, and more, are met.

Making sure that she knows that she is loved beyond anything.

Welcome home!

Hi!

You sleepy?

Up.

Kim, voice-over: When I get really, really tired, like, how am I gonna do this?

And I'm not getting any younger.

She's gonna be an adult someday, hopefully.

How was school, lovely?

What's that gonna look like?

You wanna go for a walk?

[Laughs] Oh, God.

Kim, voice-over: And so I've come to the conclusion that I'm just gonna live forever because I'm too scared of what would happen to Charlotte once we're gone.

And so now I try to advocate because I get frustrated.

Like, you should be able to walk without getting caught on the doorframe.

You should be able to swing on a swing in the park.

The world doesn't get her value.

What do you want to do?

Kim, voice-over: The world doesn't get that she's not sad.

[Laughs] Charlotte at the park!

Charlotte at the park!

Kim, voice-over: Like, obviously, I am not living with disability, but, to me, disability would not be as devastating if the world was made for everyone.

[Laughs] You're doing so good.

Like, really.

But there's no pressure, OK?

If you want to take a break, you absolutely can, OK?

Yeah?

OK. That was a good break.

That was a really good break.

Wow!

[Laughs] Wow, look at you walking.

Man: The President of the United States.

[Cheering and applause] Aduba: The 1980s and 1990s saw sustained economic growth and optimism.

Ronald Reagan: Mr. Chief Justice, Mr. President, and my fellow citizens-- Aduba: The administrations in power had very different visions for the role of the federal government compared to what had come before.

Our government has no power except that granted it by the people.

It is time to check and reverse the growth of government.

[Cheering and applause] Aduba: Successive presidents extolled individual responsibility.

They looked to end the, quote, "poverty trap" of federal Social Security programs and encouraged more people to get a job.

Let us work to see how many can be freed from the dependency of welfare and made self-supporting, which the great majority of welfare recipients want more than anything else.

[Applause] Bill Clinton: We will say to those on welfare, "You will have, and you deserve, the opportunity, "through training and education, through childcare and medical coverage, to liberate yourself."

[Cheering and applause] But then, when you can, you must work, because welfare should be a second chance, not a way of life.

[Cheering and applause] Aduba: As many American families prospered and memories of the Great Depression faded, the perceived need for a federal safety net diminished.

And in 1996, Congress passed a reform bill with major cuts to public welfare.

After I sign my name on this bill, welfare will no longer be a political issue.

[Applause] Aduba: While many caregivers were impacted by these wide-ranging changes, millions were supported by workplace and health care reforms passed in the same period.

The Family and Medical Leave Act--commonly known as FMLA-- though unpaid, protects workers who need to take time off to care for a loved one.

And more recently, the Affordable Care Act extends health insurance coverage and lowers costs for many caregivers and their families.

Poo: Throughout history, there's been a back and forth between two different stories.

A story that care is an individual responsibility to be shouldered within individual families, and then we realize just how untenable that is, and then we try to move the conversation towards a more societal responsibility for care... and there's been this kind of dialogue between those two narratives.

Meanwhile, the pressures on everyday people in our country have just exponentially increased, and we've become more and more isolated in how we think about how we solve those challenges.

[Birds chirping] [Bells jingling] Jacob, voice-over: Today, I'm moving on to ninth grade.

I'm nervous, really, because I'm moving on to a new school, there's a bunch of people that I don't know.

It's just gonna be nerve-wracking.

So is the bus stop this way?

Man: That way.

First block.

Can you take me?

I'm not.

I don't want to get this wrong, because if I get it wrong, I'm like... Man, voice-over: Jennifer, she had a very severe bladder infection and got very sick.

I had to take her to the hospital.

Jennifer, voice-over: I had to have two surgeries and I was in and out of the hospital for a little over two months.

I need my infusion and they wouldn't give it to me because my--my blood cells were off the chart.

Mike, voice-over: He really didn't want to go to school knowing that his mom was still in the hospital.

Thankfully, she did get out just a few days ago, just in time.

Give me a hug in case you put on your cologne.

Uh-huh.

Jennifer, voice-over: I'm home.

And I'm so stoked to be home.

All right, bye, Dad.

Bye.

Love you.

Jennifer: Be back about 5:00?

Jacob: Yes.

Bye.

Got everything in there?

You look amazing.

Jacob: Thank you.

Jennifer: I love you.

I love you.

Jacob, voice-over: Obviously, my mom wasn't doing the best, but I'm really happy that, you know, she got to come home and witness me going on to high school.

[Mike sighs] OK. Mike, voice-over: Jennifer said she's probably had MS since high school.

And it really wasn't that bad when we first got together, but it's just gotten a little worse than, you know, we'd hoped.

I went back to work because I've been having to take FMLA.

FMLA, yeah, it secures your job, but it doesn't pay.

So now I've just been trying to basically, like I said, trying to play catch-up here for the past month.

$485.

OK, and who's the doctor?

I'm looking.

Oh, my God.

It doesn't say?

No.

Yeah, they going to have to keep waiting because they ain't getting no money from me.

Mike, voice-over: But, yeah, pulling through it.

Gotta stay strong for the ones you love and, you know, you got to do what you got to do, and, you know, just keep fighting and pulling through it.

This is what happens when you're not here for two months at a time.

They don't know how to take care of themselves.

This is not my normal demeanor, by the way.

I'm a very kind, loving individual.

It's--I'm just in excruciating pain right now.

Jennifer, voice-over: I know my husband is exhausted.

It was like he was overwhelmed.

And I'm just so lucky that he takes amazing care of me.

[Kiss] Love you.

Love you.

[Kiss] [Kiss] Jacob, voice-over: The hardest thing for me is just seeing her in pain.

I missed this red head.

I missed this, I missed this red head.

It's really scary.

So tell me about your day.

It was pretty good.

Nothing, like, too much happened.

Mm-hmm.

My-my--my math class, my algebra... Mm-hmm.

it was nice.

There was a lot of people from Eagles there.

I need you to help me with my arm.

It's stuck underneath.

Yeah.

All right, this all, too, after you get me the ice.

Oh, thank God.

There you go.

OK.

So what else?

That was really it.

And then I went to the bus and got home.

You're gonna put Mommy to sleep.

[Chuckles] Well, yeah, that was basically my day.

That's awesome.

Mm-hmm.

Leave my bracelet.

I like your bracelet.

It's a medical alert bracelet.

It is?

Mm-hmm.

See what that says?

Jacob, voice-over: Sometimes she says, you know, she wishes she was normal, but in my eyes, she is normal.

Mm.

Jacob, voice-over: She's a normal mom to me.

She does everything that a mom does.

I'm so glad that, you know, she's here and not somewhere else.

[Kiss] I love you.

I love you more than life itself.

I really do.

Newsreader: It was a manic Monday in the financial markets.

[Stock market bell rings] The Dow tumbled more than 500 points after two pillars of the Street tumbled over the weekend.

Aduba: In September 2008, America plunged into its deepest and longest economic crisis since the Great Depression.

It was called the Great Recession.

Man: This is gonna be one of the watershed days in financial market's history.

Aduba: The federal government responded quickly, spending hundreds of billions of dollars to prop up Wall Street.

Families got far less.

Among the worst affected by the Great Recession were caregivers, and many were still reeling from its impact when they were hit by a second crisis.

[Siren wailing] [Siren wailing] News anchor: Breaking news.

The first death from coronavirus here in the United States, a man in his 50s dying from COVID-19 infection in Washington State.

We had two patients die during the day today and 4 more who almost died.

Aduba: Within weeks of the first confirmed cases of COVID-19, the country was put on high alert.

Donald Trump: To unleash the full power of the federal government in this effort, today I am officially declaring a national emergency.

When we think about people on the frontlines of COVID-19, we often think about nurses and doctors, but home health care workers face significant challenges.

News anchor: The crisis is exposing systemic problems that predate this pandemic.

Woman: Nursing is a lot as it is before any pandemic came into place.

Now it's, like, 10 times more critical.

Poo: The pandemic brought the care crisis to everyone's doorstep in a whole new way.

Woman: Enough is enough!

Give us what we need to continue to fight this coronavirus!

Poo: It revealed both how essential care is in our lives and also how precarious it was.

News reporter: While millions of Americans are working from home, but if you're, like, a hospital staff deemed an essential employee, well, you must still go in.

Poo: That was the first time we had a conversation about care work as essential work in the national dialogue, and that was a major breakthrough.

[Applause] Charles Grassley: Today, I salute the heroes working on the frontlines during this pandemic.

To the legions of health care professionals across America, thank you.

Aduba: Congress came together to provide emergency relief for families and businesses hit hardest by the pandemic.

Joe Neguse: The American people need relief now.

Not tomorrow, not next week, not next month.

Now.

We have to do something.

There are a lot of people hurting and there are a lot of people expecting us to throw those partisan differences aside and reach agreement.

Aduba: The pandemic wasn't just a health crisis that took the lives of over a million Americans, including many caregivers.

It was also an economic crisis, even worse than the Great Recession, that drove many families into poverty.

News anchor: As COVID cases rise across the country, the economic fallout also grows.

News anchor 2: At least 22 million Americans have filed for unemployment since the pandemic started.

News anchor 3: Lines are stretching for miles in state after state as the millions of Americans now living on the edge are facing disruptions in the food distribution chain.

Man: Your kids ask, "What's for dinner?"

and you're not sure what to tell them.

It's not easy to ask for help and we try to provide for our own family.

Aduba: When President Biden took office in 2021, he pushed for more than emergency COVID relief.

He sent Congress an ambitious economic package to pull America out of the pandemic recession by investing in infrastructure.

He included billions of dollars of funding for caregivers.

It was called Build Back Better.

Biden: My Build Back Better plan is gonna help caregivers who take care of our loved ones.

We have to ease the financial burdens of care that families are carrying and the professional caregivers out there, home health workers, childcare workers-- who are often women, women of color, and immigrants-- are too often underpaid, underseen, and undervalued.

Aduba: It was the most significant investment in caregiving since the New Deal and included proposals such as paid family leave, that had never been enacted before.

The 1930s was actually a very similar time to the one that we're in right now.

They were emerging from this time of crisis and the Great Depression.

So urgent action and public investment in the economy and infrastructure was needed, and that was the vision of the New Deal.

And now it's a new New Deal moment where we're emerging from crisis and we have a once- in-a-generation opportunity to reset our economy.

Aduba: President Biden's plan reflected his belief that caregiving was as fundamental to a growing American economy as physical infrastructure.

He gambled that he could pass it, even if it didn't attract bipartisan support.

In November 2021, Build Back Better went to a vote in the House of Representatives.

On this vote, the yeas are 220, the nays are 213.

The Build Back Better Bill is passed.

[Cheering] Aduba: Ai-jen Poo and many others who supported greater investment in paid and family caregiving saw the opportunity and rallied behind the bill.

Poo: It was the proof that vision, determination, everyday people eventually can make history.

It felt historic.

It felt like this generational calling that we all rose to, and it was happening.

Aduba: Build Back Better now went to the Senate.

News reporter: Whatever they do has to have the support of 50 US senators who are Democrats plus the Vice President.

News reporter 2: Democrats will need all 50 senators on board, meaning hard-fought measures like paid family leave could be on the chopping block.

It could take a while to get through the Senate, I think.

It'll probably be after Thanksgiving.

I will sign it.

Period.

It's time to make some noise!

Woman: Whoo!

Poo: We kept organizing and building and we even had a 24-hour vigil in front of Congress.

News reporter: The measure suffered a major blow over the weekend.

News reporter 2: Senator Joe Manchin yesterday called it "budget gimmicks, shell games, and a recipe for economic crisis."

Suddenly, we started to see it get cut and get cut and get cut.

Manchin, voice-over: I cannot vote to continue with this piece of legislation.

I just can't.

News reporter: The decision stunned the White House.

Jorwic: We continued to push With meetings and phone calls and Zooms and we pushed with rallies.

We pushed on the ground and, unfortunately, we just came up just a little bit short, one vote short, on what would have been literally life-changing for millions and millions of people.

Aduba: What started as the largest investment in caregiving since the New Deal emerged from Congress as a jobs and infrastructure act.

In the backroom negotiations to get the law passed, all the caregiving components were dropped.

Poo: We never gave up until the 11th hour, and we finally got a call.

The bill is gonna go through and it's not gonna include care, and it was devastating.

It was devastating.

Schwab: Care shouldn't be a political issue.

We should be looking at the life cycle of care that citizens need from birth through end of life.

For America to survive, for our democracy to thrive, our citizens need to be cared for and healthy, and right now, they're neither of those.

It's impacting people's abilities to survive and thrive as family members and to achieve the American dream.

Cauli: The transition from hospital to home was tough.

In the hospital, they were all great... Beep beep!

but once I came home, it was like, "Good luck."

Oh.

Cauli, voice-over: I just soaked up as much information as I could from the rehab team, from the doctors, so that I could apply it at home.

Catch!

No, no, no catch.

Tell him to sit.

Took a lot of trial and error to get things right.

Kanlaya: Oh, you want me to do that?

Ty: Yay!

Cauli: You get one point.

Cauli, voice-over: In the beginning, one of the most difficult things was juggling between Kanlaya and Ty.

Rawr!

All right, shoes on.

We're gonna go now.

Cauli, voice-over: He grew up really fast through this whole experience.

Kanlaya: OK. Hope you have a great day.

I love you.

See you after school.

I love you.

I love you.

Cauli, voice-over: My main focus was always just give him the most normal childhood as possible.

Ty: Here this is... Cauli: Here's your backpack.

[Toy clatters] Got it.

All right, let's roll.

Cauli, voice-over: It is tough to see the future right now.

We've been living off of savings and donations.

When something like this happens, there's so many things that you need to look into.

In order to get Kanlaya on Medicaid, I had to take her name off of the mortgage and take her name off of the joint account, and we shouldn't have to do that.

[Line ringing] They could definitely do better, but I hate relying on the government for it, too.

Hi.

Good morning.

I need to refill a prescription for my wife.

Cauli, voice-over: This is not how I wanted it to be at 37 years old.

Everything that you've planned out in your head is just--it's gone... See you then.

Thank you.

-All right.

Take care.

-Bye.

knowing I have 40 more years of this, God willing, but got this far.

Kanlaya: Hey, babe, can you set the bench now?

OK, here I come.

Cauli, voice-over: When you become a caregiver, it's a very different role as a husband.

Here we go.

Ready?

-Make it nice and warm.

-All right.

It's there but it's just, like, a new form.

I still love her more than anything in the world, but I feel more like her full-time caregiver than a husband, and I think that's the struggle right now, is trying to figure out how to get that husband role back.

Your knee, yes.

That's one.

See, it's going out like that.

Try to keep it, like, up like that.

OK. Cauli, voice-over: But in other ways, we've become really close.

Try and make a fist.

Your thumb moved.

Kanlaya: That's a good one.

Cauli: Mm-hmm.

Cauli, voice-over: Kanlaya's not supposed to be anywhere near where she's at today.

Oh, butterfly.

Oh, yeah.

Cauli, voice-over: Just keeping that strong family unit, I really think, is what, what helped progress this far.

Oh, thanks.

Is it buttercup?

Cauli, voice-over: It's a win.

I mean, she's here with us and able to be Ty's mom still.

Kanlaya: Ooh.

Right to, like, his mouth.

Cauli, voice-over: I love my family.

It's really all I have when you boil down to it.

Pick out a book.

I'm gonna put Mom in bed.

Whoo!

Kanlaya: I love you.

Ty: Love you.

Your turn!

[Grunting] Cauli, voice-over: "She chomped on a tomato, the biggest, reddest one."

You want to do this one?

Mm-hmm.

"More I can read books for you to love."

"The end."

Good job, buddy.

Mwah.

You did awesome.

Cauli, voice-over: She needs me.

Ty needs me.

Love you, buddy.

Good night.

Cauli, voice-over: So I'm gonna keep going until-- just keep going until-- There is no until.

Just keep going.

Poo: You've come from LA?

Woman: Yes.

Woman 2: LA and San Diego.

Poo: This is the Chicago contingent.

Woman: Yes.

Poo: Yes.

Awesome.

I'm so happy you're here.

Aduba: After the disappointment over the failure of the national caregiving plan, Ai-jen and her team turned their focus back to the states.

Woman: I got medium right here, you guys.

I have large.

Poo, voice-over: Care is not a nice to have.

It's an essential.

It's not like we can cut costs and not do care.

We just actually have to figure it out because the people we love are at stake.

Man: All right, look over here, and smile.

Perfect.

What was your name?

Jennalyssa.

Man: Jenna?

Woman: Jennalyssa.

Jennalyssa: Jennalyssa or Jenna.

Yeah, so we have round-the-clock care 27/7.

What's your degree?

What's your major?

You sure are.

Woman: Good morning, family.

A good job pays wages you can live on.

A good job has decent health care.

A good job has a pathway to retirement.

We don't have that.

We need to make these better jobs.

I do this for my daughter and for my dad who I care for.

And I do it for all of you here today.

What can I say?

I'm a caregiver.

Thank you.

[Crowd cheering] Poo, voice-over: We are gonna be going to states all over the country, and there are events like this happening.

There's gonna be one in Georgia, one in New York, one in Illinois.

We want people to tell their stories everywhere.

Aduba: Ai-jen Poo aims to connect hundreds of thousands of caregivers with one another, from childcare workers to adult care workers and disabilities organizations.

Poo: This coalition came together to help us win the policies that we need to take care of our families.

Poo, voice-over: It's this bold, almost revolutionary vision for what we should expect of our country.

[Cheering and applause] Aduba: And around the country, change is already happening.

10 states, including Missouri and North Carolina, compensate family caregivers.

And 13 states and the District of Columbia have paid family and medical leave programs.

Irving, voice-over: We need to reimagine caregiving, not simply as something that we don't talk about, but as a universal condition that we will all experience.

Aduba: Employers, in particular larger corporations, are also rethinking their approach to caregiving.

There are many, many things that we can do, not just in our communities, but very much in our businesses, to improve the condition of caregiving in America.

Things like paid family leave, virtual work.

This is not just warmth and fuzziness.

This is good policy.

This is good business.

There's hope.

I see groups coming together to talk about caregiving challenges more.

And when the topic arises, walls come down.

It is an opportunity for us to bridge divides because when we're speaking about our caregiving responsibilities, we express and admit our vulnerabilities.

We admit our frustrations.

We ask for help, and we express empathy in ways, I think, that we don't in many other times.

Poo, voice-over: The story of caregiving in America is everyone's story.

It's profoundly unifying at a time when all we hear about is how divided we are, and the truth is that everyone benefits from a strong care infrastructure in this country, doesn't matter who you are, where you live, what you do, where you come from, who you call family.

You need care.

That unity is powerful.

This "Caregiving" story was made possible with the support of these generous funders.