Policy is a powerful lever to change people's lives, but it's often not informed by people's lives. In order for this lever to drive real impact, we need to shift from thinking about policy as the driver and delivery as an afterthought to policy and delivery working in tandem, continuously informing and improving one another. Sarita Gupta, co-director of national nonprofit Caring Across Generations shared her experience in doing just that at Code for America Summit, where she spoke about designing policy with delivery at the table, and how to radically improve our country’s outdated care system.
“Our work needs to be informed by both of these perspectives, theory and the lived experience, to have impact.”
By 2040, nearly 30 million Americans will need some form of home care to meet their basic daily needs. There are more than 42 million unpaid family caregivers in the country today, because our system of care was built so long ago that it a relic of a time when our economy functioned on the presumption of women’s full-time, unpaid labor in the home. We need a new system that’s suited for the 21st century. The concept of Universal Family Care covers the full span of child care, elder care, and paid leave. It’s one social insurance program that everyone contributes to, that everyone benefits from, that helps people afford care across the entire human lifespan.
“One the things we grapple with is how to make Universal Family Care feel doable and real. We set out to answer how might we translate our policy vision into a tangible user experience?”
Sarita spoke about working in the space of policies, regulations, and guidelines, because that’s where government articulates its intentions. But even the most well-intentioned policies can be translated into subpar services—and services are part of the equation that actually affects people’s lives.
“But, we know that what people experience isn't the policies… Each of our relationship with our government is through its services.”
To examine how best to achieve the vision of Universal Family Care, Caring Across Generations partnered with IDEO to look beyond the policy realm and toward putting human-centered design into practice. They went into the field to gain insight into families’ day-to-day lives, needs, behaviors, and struggles. They sought inspiration from real people in order to design for their real lives, not just a hypothetical user. And the stories they heard informed both their policy vision, and the user experience of the implementation of that policy.
To hear Sarita’s presentation in full, watch the video or read the transcript below.
Good morning. My name is Sarita Gupta and I'm the co-director of Caring Across Generations. Thank you to the organizers of the summit for inviting me to speak this morning. I'm really thrilled to be here to talk about a new policy concept called Universal Family Care and the work that we've done in partnership with IDEO to advance a delivery driven approach to this policy design. I just want to acknowledge Kate and Amanda and the team at IDEO who are here who have been amazing partners in this process.
I want to share a little bit about myself to begin with. I am a working family caregiver in the sandwich generation. I just said a lot, so let me unpack that a little bit. I work full-time, but I am also a family caregiver to my father who has Alzheimer's and my mother who has declining mobility issues.
They have been living with me for the past three years and then most recently a few months ago moved into an independent living community in Maryland where I live. At the same time that I'm now caring for my parents, I also have a young daughter to help care for and raise, hence the sandwich generation label or I like to call it the Panini generation. Actually, my husband and I really do honestly feel squeezed as we try to manage the care needs on both ends of the spectrum. Navigating my family's care needs and wishes have been really difficult.
Learning about Alzheimer's disease has been overwhelming. Everything from researching adult day services to support groups for my mom, to managing the costs of care, to finding direct care workers, and just ensuring that my parents have all that they need to be able to live independently for as long as they can. Here's the thing. I am not unique in this or special. Millions of families are headed down this path. My own life experiences have deepened my commitment to this work and the work of Caring Across Generations, which is a national movement of families, caregivers, people with disabilities, and aging Americans working to transform the way we care in this country, so that all families have options to ensure that their loved ones can age with dignity.
We've been organizing in communities around the country to transform our caregiving systems and policies that create access to affordable care options for aging adults and people with disabilities, that ensure that there are more supports to family caregivers, those who are in the labor force and those who have left the labor force, and to improve the existing direct care jobs and really grow this workforce.
We know that caring for our loved ones can create some of the most special and joyful moments of life. Yet, the current care paradigm overshadows these moments as families struggle to both work and provide care. Our care needs are exploding in our nation. We are in the midst of an unprecedented elder boom. Every eight seconds another baby boomer turns 65. That's four million per year and they're living longer than ever, about 20 years longer than when our safety net was put into place. Their stagnant incomes and diminished savings are no match for the longer lifespans, the reality of rising costs of treating chronic medical conditions, and addressing long-term care needs.
We know that by 2040 nearly 30 million Americans will need some form of home care to meet their basic daily needs, and we know that most seniors prefer to age in their homes and in their communities. On top of that, millennials are having children at a rate of four million babies being born per year, and we know there's an incredible need for child care supports. Our system for supporting caregiving as a whole from child care to eldercare is broken. Almost two decades into the new millennium, we still have a system of caregiving that was built during a time when the economy functioned on the presumption of women's unpaid care in the home.
This is no longer a reality. More women are in the workforce. The burden of care is falling heavily on family members and in particular on people like me in the sandwich generation, caught between the demands of both childcare and eldercare. The cost of care is outrageous for seniors and people with disabilities and for most families. Let's do the math a little bit. 70% of our workforce in America earns less than $50,000 per year, and the average cost of childcare is over $10,000 per year. The average cost of a private room in a nursing home is between 80 to a hundred thousand dollars per year.
Like my family, about half the workforce expects to be providing care for elders in the next five years, and not just a little bit of care by the way, but a pretty substantial amount. Of the 42 and a half million unpaid family caregivers in the US, more than half provide an average of 20 hours of family care per week while working full-time. Yet, we don't have the supports in place in workplaces like paid family medical leave or ensuring that eldercare is included in leave plans to help people meet their caregiving responsibilities without risking loss of their jobs.
The numbers just don't add up. We can't afford the cost of care. We need a bold solution to address the real pain points families are facing or will be facing in the coming years. We began to imagine what a policy vehicle could look like that is portable and universally accessible, that helps families afford childcare, eldercare and paid family leave, and everything you need to work and care for your families too. That's the concept of Universal Family Care, one social insurance program that everyone contributes to, that everyone benefits from, that helps people afford care across the lifespan, and allows for an infusion of money into our care systems to support professionalizing and stabilizing the care workforce.
We are in a moment of big ideas and we believe Universal Family Care is a big idea that speaks to one of the key needs of people today, care and caregiving supports. Our plan over the next few years is to build a powerful dynamic movement to support family care and the idea of Universal Family Care in America through culture and narrative change, like really creating a 360-degree storytelling environment about the urgent need to invest in our care infrastructure in this country and longterm to transform how we value care and caregiving in our nation.
We want to win state level family care and longterm policy change that models aspects of the federal policy change we seek. A few years ago we won the Kupuna Caregiver Program in Hawaii, that's a financial benefit for working family caregivers. Just a few months ago, we won the first publicly financed longterm care benefit for Washingtonians in Washington state.
We want to continue to work with partners and policymakers to advance the needs and opportunities and vision for Universal Family Care at the federal level and begin to offer actual building blocks of legislation towards this vision. Finally, we want to work to bring eldercare and Universal Family Care into a crowded national political discourse in 2020. One the things we grapple with is how to make Universal Family Care feel doable and real. With IDEO, we set out to answer how might we translate our policy vision into a tangible user experience?
We work a lot in the space on the right in this image here where the policies, regulations, guidelines live, and where we know it's where the government actually articulates its intentions. But, we know that what people experience isn't the policies. It's the services that these policies translate through government programs into. Each of our relationship with our government is through our services. Think about the DMV or the post office or public schools, it's been the interactions with those services and programs that form how we even feel or think about the policies behind them. This way, the delivery of our education policy is actually our experience at school.
The delivery of our policies about road safety is what happens at the DMV, so we wanted to answer what would it look like for all of us to interact with the policy vision that we've laid out for Universal Family Care that brings together early childhood, eldercare, and paid leave.
How might it really work in practice for each and every one of us throughout our lives and how might we actually unify a base around Universal Family Care? We headed into the field to understand families daily lives, their needs, hopes, challenges, behaviors, and work arounds. We wanted to get inspired by people to be able to design for real life rather than abstractions. We focused on the sandwich generation as an extreme circumstance in that these people like me are caring for both young children and aging parents and our team joined IDEO's design researchers and team shadowing along to listen in on the interviews and people's homes.
Here's where we started with a vision for a way of combining a set of three existing programs into one bucket that provides targeted support across one's life from child rearing to helping aging parents to aging ourselves. This is an image of one of the white papers we've authored that captures that policy vision. This is the policy agenda that was recently on the ballot in the state of Maine. It's highly detailed, well-researched document that lays out how we believe Universal Family Care could be legislated. The first thing we did together with IDEO was to map out, to visualize the intent of that white paper, to look at the stakeholders, assumptions, guidelines and programming implications, what it promised in terms of delivery of service.
We met with a diverse set of families. They came from a range of backgrounds, income levels, languages, and family types. Here are a few of the families that we visited with.
Theresa with her granddaughter and her mother, Esmeralda with her daughter and mother, Sally with her mom, and Leah with her son and her parents. We also spoke with care workers. What you see in this picture is a round table discussion. At the back in the middle, you see one of the architects of our policy vision, Ben, who was completely inspired by the home interviews he was a part of. It was actually fascinating to be part of really understanding people's perceptions and challenges and to get inspired by their hopes for a program like Universal Family Care. We often use exercises to draw out stories about division of labor, routines, hopes, wish lists. This one shows an exercise about an ideal support system.
Here's a bit of what we heard from each of them. Let's go to the video.
My mom has dementia. Sometimes, I don't know if she even knows I'm here or doesn't remember that I came to visit, but it makes me feel better knowing that I care about her and I love her. She did so much for me growing up and it's like now it's just the other way. You grow up in your mom takes care of you and now it's you taking care of your mom. With the care my mom needs, I don't know how I could work full-time and I find that frustrating because I feel like I'm not contributing much to the family income. My Mom's had full-time care for the last 10 years and luckily my dad set aside money that we'd be able to go this far, but the money is running low and I'm concerned about the next steps that we need to take.
My family doesn't see my taking care of my daughter and my mom as a job and it sucks because it is. It's an all day, everyday job. Because of her epilepsy, she's developed her mental health issues. She's schizophrenic. She takes medicine for that. It's not good to leave her by herself. She could hurt herself, so somebody always has to be home now. Taking care of both of them here at home makes me feel sometimes suffocated. If I had some money coming in to take care of my mom, I would hire somebody to come and take care of her here at home and that way I could go back to school.
Well with my own family, I'm also providing care for my father who was diagnosed with pneumonia back in July and suddenly put on life support. It's probably like the darkest time I've ever experienced in my life. Care taking for my father has impacted the way I have been spending time with my son. I've been spending less time with him and really kind of missing out on those moments that I would love to catch.
I decided to take custody of my granddaughter. Her mother basically abandoned her and CPS showed up at my door and told me that I could either file for guardianship or that they could take the child and put her in foster care. Taking care of another young child at 45 was not in my plans. I'm in a situation where I have to rely on my mother to pick her up from daycare every day. I hate it. It's very difficult dealing with my mother. We've always had conflict. I've taken off quite a bit of work when my mother's ill and unable to watch my granddaughter. I'm strapped financially. I'm one person running the whole household just with my income. Makes me feel like trapped in my current position.
The stories we heard in the field inspired our work and informed both our policy vision and the user experience.
Our goal for our work together with IDEO was to bring tangibility and immediacy to Universal Family Care, deliver a visceral sense of how it might feel to interact with a program designed to support families' needs. The mobile prototype we created together illustrates with the delivery of a Universal Family Care program might feel like. This means how you might interact with the benefit program such as Universal Family Care in the future, so just take a look.
Let's go back to Leah. I'll tell you a story about how Universal Family Care might help shape how Leah cares for her father in the future. Leah is ready to explore what benefits Universal Family Care might be able to offer to her dad and she clicks through a welcoming diagnostic, a set of questions that help Universal Family Care identify her needs and tailor its services and supports to Leah's family situation. She quickly notices a benefits guide on the home page. In this moment, UFC is basically breaking down the mental model of existing programs, which expects our users to know which things they're eligible for. Instead, we'll ask about their situation and needs first.
Then use the intelligence system to know exactly which benefits might be useful to the person. We'll hold real application moment until later. This moment is about engaging with UFC in a low stakes way in order to learn about what Leah may be eligible for. Leah is presented with a series of simple, straightforward questions. We heard from many of our participants that navigating and understanding government programs can be daunting. So instead of filling this exploratory moment with jargon and detail, it uses clear human language and as simple to understand and fill out. UFC asks Leah who she needs help caring for because this information helps us refocus the rest of the experience on that specific individual and their needs and ask few questions about her father's needs and the intensity of those needs. Who helps care for Harold?
If Leah was moving through this benefits guide with her son in mind, her answers could be quite different, meaning the question she's prompted with could also be quite different. After this diagnostic, UFC offers up ways it can help. This is so different from the way we interact with benefit programs today. With reassurance and with as you'll see, an intelligent set of benefits grounded in individual needs.
This is what it could feel like for a system to start with people's needs. Here's what you might see once UFC identified the available services that match your needs. Let's just fast forward time and take a look at what it would look like for Leah to manage benefits for her father in the future.
Within Harold's suite of possible benefits, we've included things like a marketplace support, in this case transportation assistance for getting around. By combining the benefit program into a needs-driven suite of solutions, UFC opens the ability to offer smaller services or goods as benefits for individuals who don't need large scale subsidies or care. This has exciting private preventative care implications. That need came directly from our user interviews when we heard that people basically want just enough support to stay in their homes and maintain their independence.
Next, another thing that sort of came up from our research and deeply informed our policy benefits was benefits for caregivers, who we know and certainly heard in the field are overstretched and absolutely overwhelmed. Leah sees a separate section, dedicated benefits that addresses her own needs as well as care navigators to help her figure out how to support her father, including this moment is an enormous statement for Universal Family Care. It starts a conversation about caring for caregivers themselves. Imagine a world in which mental health of caregivers is considered too. What an idea. What's next? After the shift from the diagnostic and the options that could support Leah, she can start the application process for Universal Family Care.
This is so different from the way benefits are currently delivered. It's human centered and needs-based. Leah fills in a few form fields to complete her registration. So far, this feels just like any other profile registration. We've designed a registration as a simple low barrier screen. We've purposely left out questions that require proof of identity and complex documentation. All of those logistics would be required later when the user has explored the benefits UFC has to offer them and is ready to prove their eligibility. Leah clicks complete and receives a welcome message. She's now a card carrying member of Universal Family Care.
Over the course of Leah's lifetime, there will be multiple moments when she might need Universal Family Care. A simple dashboard enables her to manage multiple family members supports and see the current status of her father's benefits. Over time, the system understands that benefits might need maintenance and can track use of benefits comprehensively. We took these prototypes back out to the same families who we interviewed at the beginning to get their feedback. The tangibility of the prototype made Universal Family Care feel real, valuable, and meaningful. We're excited to be continuing to use this prototype to build support among our stakeholders from policy makers to partners to the public.
It helps us explain what Universal Family Care is, how simple and real this policy could be if we can work together on it. It helps us get on the same page, so we can push the policies that will form the foundation forward.
A tangible user experience has really helped us get on the same page with partners and allies to engage policymakers about stories, needs, and opportunities to get beyond the data and numbers, to build public support at the state level to advance models of care, to develop federal policy options and to sharpen our overall narrative.
Our policy is evolved in creating this prototype with IDEO, and we've seen firsthand how much policy can benefit from the user research and user testing. What else are we learning? Here are a few things you can take away.
Having a prototype ensures we're talking about the same thing. It's a unifying mechanism. We're all on the same page when we're looking at this mobile application and it creates belief. It simplifies, it cuts through the nay saying and for the moment helps people envision what a completely different future could look like and feel like. In this case, how our interactions with the government service could be responsive, intelligent, and supportive. User experience is a powerful way to advance policy agenda, build support across multiple stakeholders, public partners, and policymakers.
Policy is a powerful lever to change people's lives, but it's often not informed by people's lives. Our work needs to be informed by both of these perspectives, theory and the lived experience to have impact. It can't be all abstraction of datasets and we're not designing for endlessly variable circumstances, but understanding the why's behind user behaviors can make policy more pragmatic to take into consideration the contradictions of lived experience and make it more human.
A policy is a set of regulations, but what matters is the service people experience, the services and programs people interact with to secure support or benefits. Whether a policy is effective or not, That happens in the delivery of the service and support to people. This outcome, the provision of service is what matters most and ensuring that in our policies we're taking that deeply into consideration and designing for effective delivery is hugely important.
You can explore this more on your own. This is the URL. I just want to share in closing a few things we learned along the way. The worlds of policy and design require translation on both sides. Close collaboration, in person and remote, is the secret sauce and policy informs design and design informs policy. I'd be happy to talk more about all that we've learned on this journey with all of you. If you want to hear more, I want to welcome you to come to our workshop this afternoon and we'd be happy to have more of a conversation there. Thank you.