Q: Ai-jen, I am so honored and grateful that you’re here to share your expertise as a thought leader in elder and family care and gender equality and a crucial part of the I Am Not Alone Care Alliance.
Your leadership and advocacy for caregivers have been an inspiration for us all. Your book, the Age of Dignity, has especially served as a foundation for the ianacare team’s understanding of caregiving and the core values we’ve come to cherish over the years. Welcome again! We look forward to picking your brain on several pressing issues in our industry.
A: Thanks for having me, and thanks for building this incredible community and company to support caregivers who we all know need our support right now.
Q: You have been at this for 25 years, and I have closely followed your message and advocacy. How has the journey been so far? We’d love to hear how you got started, the organizations you created, and how they have evolved over the years.
A: Indeed, it has been a long journey, but my passion has kept me going steadily. It all started in
New York, where the National Domestic Workers Alliance has its roots with nannies, house cleaners, and home care workers who are working in the city, supporting thousands of families.
I was pained by how these workers were struggling with poor wages. There were no benefits, job security, or even a clear work agreement in most cases. This was despite the workers taking care of the most precious elements of the family’s lives – their children and their aging loved ones.
We started organizing here and then it spread all over the country. Our goal was to be a voice for this workforce and raise the level of respect for this work.
I think we often take for granted the work that happens inside of homes. We realized early on that all these families needed care. Childcare, elder care, care for people with disabilities, etc., were all in high demand, but really, there weren’t many programs or policies in place to support these needs. Everybody’s kind of on their own, and it creates a lot of challenges for everyone involved, especially the families.
It’s hard to find care that meets your family’s needs. It’s hard to afford it. Then for the workers, it’s really hard to sustain in this work without basic rights and protections and clear standards.
So in 2011, the Domestic Workers Alliance formed an organization called Caring Across Generations along with groups like Jobs with Justice. Essentially, several organizations came together and said, “What if we brought family caregivers and all the different types of people who need care and support together?”
That’s what Caring Across Generations has been trying to do for the last decade–advocate for policies and programs that value and support caregiving and lift the caregivers in our society and our culture and our economy.
Q: That’s so powerful and it’s so fundamental to how we live, and I love how you pull all the different stakeholders and people involved under one roof.
Now, there’s one powerful phrase of yours that’s seared in my heart, and it is, “To age is to live, and to care is to be human.” Unpack that for us.
A: I first heard it at the White House Conference on Aging. An actor named David Hyde Pierce said it as he opened a panel about elder care, and it’s so powerful to me because we forget in a society that kind of fetishizes youth and avoids aging or is in denial about aging. It’s so powerful to be reminded that aging is living.
As we age, at different stages of life, we need different kinds of support, and that’s what that phrase is all about. It’s about reminding us that we can age and live well if we have the right support, and care is fundamental to that support.
The act of caring is what makes us human. So really valuing that, investing in it the way that we do all kinds of basic shared needs that we have in society – infrastructure, transportation, schools – has to be a priority.
Q: I couldn’t agree more.
Now, one of the things that we both have in common is our preference for action. Research and understanding for the sake of innovation are crucial, but it is the action that counts.
At ianacare, what we do is help family caregivers access the support and resources they need. It isn’t a question of public or private. We essentially delve into questions, like what are your leave policies, what benefits you offer, what local resources are available, etc.
But what we’ve come to realize is that we’re only as good as what those resources are. That’s what drew us really to your work because we’re not creating these policies. We’re not fighting for these rights. You are. But that impacts how we support the private sector and how the private sector supports the public sector. I would love to hear how after all these years you see the importance of that unity, of that collaboration, between the private sector and the public sector.
A: Well, I think that care is such an enormous challenge and part of our society and our lives. It’s an all-hands-on-deck situation, and we need leaders across sectors – nonprofits, government, private sector – working together to solve this incredible challenge of how we care for families in this country across the lifespan.
The thing is that we are one of few developed countries that have never really invested in caregiving programs, policies that make childcare universal and accessible, policies that make long-term care accessible and affordable. We don’t have a single week of mandated paid family and medical leave in this country.
We have a lot of work to do to build the care infrastructure that we need in this country, and I think the private sector has a huge role to play. And we need policy, we need programs, and we need the government to help families who are doing everything they can but are still struggling.
We need all the support we can get. Once we put that in place between products like what you’re building and what the government can do and what families are already doing, I think everyone can truly thrive in this country.
Q: My heart still breaks on the realization that we’re one of the few developed countries that don’t even have those basic necessities taken care of. Why do you feel like we are devaluing all the important parts of care that make us human and make up life?
A: I think there are a few different reasons why this has kind of unfolded the way that it has. One is that in our country we have this idea that care is an individual responsibility and mostly to be shouldered by the women in our families, in the privacy of our homes.
Someone once said, “Most countries have a safety net, the U.S. has women.”
If we can’t figure it out, if we are struggling to afford it, or if we’re struggling to manage it, it’s a personal failure. We don’t have the right job, we didn’t save, we’re a bad mom, and the like. In reality, we are doing our very best.
We are doing everything in our power to take care of the people that we love, and we need more. We need programs, we need infrastructure, we need a strong care workforce to support us. That notion that it’s an individual responsibility, is so deeply embedded in our society.
Q: Interesting. Wow, I haven’t heard that one before.
A: Yeah, it’s like we just assume that the women in our households will take care of it along with everything else that we do, including work outside the home, or that an underpaid, undervalued workforce of mostly women of color will handle it. However, this is just not sustainable.
Q: I mean, that’s so true. As I hear you talk, it’s like we see it as an individual issue. We take it upon ourselves and we feel like a failure. Then that is a huge barrier to even asking for help, or even seeking to build this infrastructure, because we feel like, no, it’s up to me to do it.
When we think about this and building and moving forward, as I’ve heard and read a lot of your work, I see some key areas: everything from leave policy to broadening the definition of family, Medicare, and Medicaid. I mean, it’s a lot, but we can break each of those down a bit. So if we think about leave, and paid leave, what are your thoughts about where we need to move towards in those policies?
A: It’s simple what we’re advocating for. We’re advocating for at least 12 weeks of paid family and medical leave.
If you just had a baby, you can take time with your newborn. I mean, it’s so simple. Whereas so many women are going back to work after a week, or two weeks after giving birth because we don’t have these mandates in place. Childcare should be universally accessible and affordable in our country.
And long-term care: we should have the ability as we age to have the caregiving support we need in the home and community.
Some people want to age at home and in the community instead of going into a nursing home. That should be universally accessible and available to people. Every worker who works in the care economy, whether they’re an early childhood educator or a home care worker, should earn a living wage and can take care of themselves and their own families too. That’s really what we’re advocating for, and it’s in some ways so basic, so simple and obvious, and so clearly an investment in our future and all of our well-being.
Now we’re dealing with a crisis of impossible choices where caregivers are having to choose between earning an income and caring for their loved ones. It’s just an impossible reality for millions, literally tens of millions of caregivers every single day.
Q: What about broadening the definition of family care? I know you speak a lot about this. Caregiving is so deeply cultural and the way we define family or who we care for has changed and it continues to evolve, but we are still stuck in the definition that you have to be blood relatives.
A: The reality is it’s an all-hands-on-deck situation. We have 10,000 people turning 65 every day in our country. Every eight seconds, a baby boomer turns 65 and people are living longer than ever before. We are about to have the largest older population we’ve ever had, and we have not adapted any of our policies or systems or even our culture to support quality of life and care for that aging population.
We’re going to need family, friends, neighbors, workers, and everybody involved in caring. There is that adage that it takes a village to raise a child. It takes a village to care, period, and that’s how we should be thinking about it and that’s how we should be designing for it in the future.
Q: Yeah. So many families don’t live in the same town. Friends become your family. Putting policies and definitions behind this new way of thinking about family care is just very practical and needed.
A: We should be thinking so expansively about family and about caregiving at this moment and the more of us who are thinking that expansively, I think the faster will change our culture to support the range of ways that people are caregiving right now.
Q: Right. So Medicare and Medicaid reform. I know when people even hear those “M” words, it goes over their heads. There’s a lot of confusion. People don’t even know where to begin, they don’t often know what it covers or what it is. But what are your thoughts on Medicare and Medicaid reform?
A: A lot of people think that Medicare covers long-term care and it doesn’t, except in very narrowly defined situations.
Medicaid does cover long-term care, but it’s biased towards institution-based care, which is why you have so many people who want care in the home and community on waiting lists right now. More than 800,000 people who are eligible for Medicaid are on waiting lists all over the country, waiting for those services because the program is underfunded and because the workforce is so underpaid that they have a hard time attracting and retaining workers to deliver home care.
Now, the other problem with Medicaid is that it’s means-tested. You have to be eligible for it, which means you have to have no assets, so you’d have to deplete your assets to get these life-saving services.
That’s the reality of long-term care in this country. It’s that either you have to completely deplete your assets to be eligible for Medicaid, or you have to purchase very expensive long-term care insurance, which a tiny minority of Americans can afford to do, and even with that insurance, oftentimes it doesn’t cover what you need when you need it.
Then there’s the rest of us who are in between, who can’t afford long-term care insurance and don’t want to completely impoverish ourselves to be eligible for Medicaid. We don’t have a solution for those people right now.
That’s why Caring Across Generations is advocating for more funding for Medicaid, so more people can get access to services in the home and community, that we should clear that waiting list of 800,000 people. Those people are eligible for the program. They should get those services and we should figure out how we’re expanding Medicare long-term to be able to cover long-term care for everyone who needs it in this country.
It’s pretty simple, but we have a lot of work to do to get there because we have some people in government who want to take away those programs altogether. We’re kind of fighting an uphill battle but the thing about it is, and you know this, family caregivers are everywhere. We are 53 million strong in this country, which is a powerful force for change.
If all of us who have a stake and a good care infrastructure came together, we could change everything.
Q: This is a perfect example of why our collaboration can make a huge difference. We work with thousands of caregivers, and we’re helping them strategize around their assets and how they can qualify.
Coming to this issue of including homecare in government-based healthcare programs, I’d like to explore how our policies only lean towards one way of how we think about elder care support.
That it’s more institutional and there’s no right or wrong, but there are no options. I know you grew up with your grandparents in your home. My dad is living with me right now, and there are a lot of things that aren’t covered.
I’m now not in an institution, but it’s all on me, and I have to pay for everything, and it’s just not sustainable.
A: It’s not sustainable. 60% of the workforce earns less than $50,000 a year, and the cost of a private room in a nursing home is more than $90,000 per year. Meanwhile, childcare on average is at least $9,000 a year.
The numbers just don’t add up. How are people supposed to afford this? That’s why we need a solution, and I love what you’re doing in terms of helping individuals get access to whatever currently exists, but then also helping them build a community around their caregiving experience.
Those two things are essential. Then what we’re doing at Caring Across Generations is helping those communities find their voice and power to change the policies that long-term is going to free us all to care for the people that we love on our terms.
Q: Yeah, I mean, it reminds me of what you call care force. That one cannot exist without the other or can’t move it forward. It can’t be a sliver of an effort. We have to come together. So tell us more about your vision or what you think is needed as you talk about the care force.
A: During the pandemic, everyone faced their version of a care crisis. The daycare centers, the nursing homes, everything shut down. People’s caregiving supports completely collapsed like a house of cards, and then all of a sudden people realized, “I cannot do this alone. There is no way to do this on my own.”
So we now have the eyes and ears of everyone. They cannot unsee what we all just saw in the pandemic. That was our biggest opportunity in generations. We saw a huge number of new champions in Congress. I mean, we passed a bill in the United States House of Representatives that included more than $700 billion worth of investments in the caregiving infrastructure, from childcare to home and community-based care for the elderly through the Medicaid program.
We put more than $700 billion on the table for caregiving families in the last year coming out of the pandemic. We didn’t get it across the finish line in the Senate, but we have momentum. States are using money from the American Rescue Plan to raise the wages for care workers so that we can sustain a workforce and avert a caregiving workforce catastrophe.
I think the awakening is still happening, and now is the time to turn it into action and policy change.
Q: You’re changing culture in real-time. Now the facts line up, but there’s also the emotional. We saw your This Is Us segment, which was so powerful, so tell us a little bit about how we can change the hearts of people in this critical moment.
A: Well, one of the things that we’ve realized is that caregivers have been handling and struggling through this experience on their own for so long that they have trouble believing that it can ever change. We have to open up people’s hearts to the fact that we can make change and change is possible and it’s already starting to happen.
And getting people to believe – it’s about changing hearts, not just changing minds. You can’t make a good enough argument to help you.
You have to show people that through working together and advocating together, change has happened.
So that’s what we’re doing. We’re partnering with artists and storytellers in Hollywood whose expertise it is to change hearts and touch people. I think more and more storytellers in Hollywood want to tell caregiving stories, so we’re partnering and supporting them in doing that.
This is Us is such a powerful example of a set of artists and storytellers who understood the realities, both the joys and the rewarding parts of caregiving and the challenges of it. To be able to see that experience on screen starts to help people see that they are not alone and that there is a story that they are a part of that is about caregiving in this country. A story that we together can change.
Q: So beautiful. I think that sums it up. As you know, I Am Not Alone Care, that’s what ianacare stands for. That’s what it’s all about. Because there’s so much policy change, there are a lot of logistical things, but at the end of the day it’s, “You’re not alone in this.”
It’s so empowering. It is truly an honor. You are honestly the first person we thought of when we thought about this I Am Not Alone Care Alliance and to be a founding member, it’s a privilege to work with you on this. What does the importance of this Alliance mean to you?
A: I just think the fact that you have built this incredible resource for caregivers (and we are trying to build a kind of community and a force for change among caregivers) is phenomenal. I think that this partnership can reach tens of millions of people with real resources that can make a difference in their day-to-day lives.
Q: Absolutely. I mean, we see that in our brainstorming meetings. You’re working for a policy change. You need advocates or people to sign petitions, and we are rallying that.
We’re looking at this trying to understand the policy reform or Medicare or Medicaid, and you’re helping educate us so then we can educate the caregivers. It’s just such a beautiful collaboration.
A: Yeah. There is so much energy and enthusiasm behind these efforts. Hopefully, we can see an impact today that benefits generations to come.