TESTIMONY: Elevating Family Perspectives to Shape Federal Care Policy

Policy should be made with — not simply for — the people policy is intended to serve. But when it comes to policies that impact families and individuals, far too often, people are left out of critical decision-making conversations.

Today, Senator Casey and the Committee on Aging are taking a different approach. They are hosting a hearing — in Pittsburgh, not in D.C. — to understand first-hand, on the record, the complexity of needs of those responsible for caring for loved ones, lifting up the experiences of Pennsylvanians that represent different perspectives:

“Nothing adds to your stress level quite like knowing you have a midterm the next day, and not being sure if you will have a way to get out of bed beforehand to actually go take the exam.” - Heather Tomko

“I couldn’t get sick, and I couldn’t get hurt because if I did, I wouldn’t be able to work – and then what would happen to my family? Those what-ifs haunted me every day…When working people like me can’t fully utilize our skills, that’s bad for businesses and our overall economy.” - Victoria (Tori) Snyder

“As a caregiver to two individuals with very specific different needs, I am perpetually and eternally exhausted. I had no idea what I was getting myself into when I decided to bring them both here. Yet, I was the only one capable of making a radical change for the betterment of them both.” - Delilah Picart

“In my case when my mother and grandson began needing my care full time, I had a big choice to make, put them in a home or quit my job. I chose them. After that, everything about my life changed…I had to figure out how to live on poverty wages. When I chose to take care of my family and stop working, I no longer had health insurance, paid sick time, paid vacations, or any retirement benefits.” - Linda Orndoff

Heather, Victoria (Tori), Delilah, and Linda’s testimonies show the complexity of how care needs show up in their lives. The Special Committee on Aging is doing important work elevating their voices and wisdom to inform how we build care policy at the Federal level.

At the hearing today, each individual brought an experience of care that’s shared by millions of Americans. Delilah underscored the importance of recognizing sibling caregivers. Linda told of her experience as both a family caregiver for her mother and a grandparent who provides care to their grandchildren, like more than 6 million Americans nationwide.[1] At the other end of the age spectrum, Tori, like millions of parents struggling to afford high-quality childcare for her son, also cares for aging family members, while trying to earn a living.[2] And like more than 20 million American families, Heather and her family wonders how she will find reliable, dignified, and safe care as her parents age.[3]

I was proud to testify alongside these incredible people who described how care really shows up in their lives. It is refreshing to start with people and their lives and needs.

Too often, we’ve seen that policy-making doesn’t center on the lived experience of families; the early phases of life are broken down into distinct policy challenges that don’t overlap; early education policy is distinct from childcare policy which is distinct from policies impacting families with disability.

It’s a key tenant of the New Practice Lab; listening to parents about their struggles, and also the things that enable them, can help us to co-design systems that create more efficient, impactful, and equitable outcomes. We do this regularly through our Thriving Families effort, where we aim to deeply understand family perspectives, particularly as needs evolve as families evolve. The needs of these families are complex, and if we don’t listen to understand what problems they face in their day to day life, what their priorities are, we risk creating policies that at best are difficult to access, and at worst, fail to serve those they sought to aid.

Thích Nhất Hạnh said, “Caring is the bridge that connects us to one another.” We are in deep need of more connection and policies that enable us to care more deeply for each other. Today’s hearing, anchored in the wisdom of families, is a key step on the path for building Federal policies on care that anchor in the voices of what families are asking for.