Key Takeaways

  • Aging well is something every person deserves. Build Back Better is a step toward equity in aging—ensuring every person can age with dignity in the place they call home.

  • When people cannot get the care they need, caregiving falls to family, and it takes an enormous physical and financial toll.

  • The full $150 billion for Medicaid home- and community-based services must remain in the Build Back Better Act to support American families and American direct care workers.

A great deal has been written about the Build Back Better Act. But one story that hasn’t been told in full is how the home and community-based services provisions will impact American families—and the American economy. Just a month after it was passed by House of Representatives, I joined LeadingAge and other aging services organizations in a virtual press conference to urge lawmakers to keep the full $150 billion for Medicaid home- and community-based services.

In my remarks yesterday (see video), I shared this personal story.

My mother-in-law Peggy had a stroke at 61 that left her wheelchair-bound and completely dependent on my father-in-law Bill for daily care—including eating, taking medication, transitioning to and from her wheelchair, and bathing.

Despite Bill's best efforts to be her primary caregiver, this became unmanageable when he developed his own significant health issues, including a kidney transplant. He simply couldn’t do it alone anymore.

My family quickly gained a whole new understanding of what home- and community-based services really are. They allow people choice in where and how they live and receive care.

I started looking for help. Like so many family caregivers, I had a full-time job and small children to juggle—or what I like to call the “panini generation.” But unlike so many families, I had the advantage of having spent my career in aging services and having people I could ask for help. I thought, “I can do this.” I also had a supportive employer—something most people don’t have.

I quickly found that it was not so easy. We spent weeks searching for available home and community-based services through our area agency on aging, only to end up on a waiting list for 6 months.

We couldn’t wait, as our situation became unsustainable and dangerous. We decided to dip into our own retirement savings to pay for private in-home care.

We then saw firsthand what many of my colleagues today are speaking about—the unwavering dedication of home care workers—and the difficulty in providing consistent care due to workforce shortages and low pay.

I’m not sharing this story to get sympathy. I’m sharing it to make a point.

This is happening across the country every day to American families—mostly families who can’t afford to dip into savings or don’t even have any savings to begin with.

Women, people of color, and those with lower incomes face the most challenges.

Over three-quarters of states report waiting lists for home care totaling more than 820,000 people with an average wait time of more than 3 years. States with the longest lists include Texas, Florida, and Louisiana.

When people cannot get the care they need, caregiving falls to family, and it takes an enormous physical and financial toll. That’s why home care is not just a health care issue or a provider issue. It’s a middle-class family economic issue.

Especially in households with modest incomes, caregiving often falls to women, many of whom must leave the workforce to provide care at home.

Recent reports from Moody’s and Harvard estimate that boosting funding for Medicaid home and community-based services will lead to job growth by enabling these informal caregivers to reenter the labor force.

Build Back Better is an incredible opportunity to begin fixing this situation. It includes an historic investment of $150 billion for these services. This would permanently increase the federal Medicaid contribution to states by about 6% and enable states to increase wages and benefits for home care workers, who are desperately underpaid. The act also would make the Money Follows the Person Program and spousal impoverishment protections permanent. These initiatives allow older adults to return to their communities and receive care at home without punishing their spouses who may have saved a small nest egg.

The full $150 billion for Medicaid home- and community-based services must remain in the Build Back Better Act to support American families and American direct care workers.

NCOA is also advocating for the Senate to retain paid family and medical leave, which now stands at 4 weeks in the House bill, so family caregivers don’t have to jeopardize their jobs in these situations. Congress also must maintain the $1.3 billion in funding for Older Americans Act (OAA) programs, which enable older adults to live in the community longer.

The OAA funds senior centers, meals programs, job training and placement for older adults, transportation, health programs and—during the pandemic—even vaccine education and shots.

At NCOA, we believe aging with dignity shouldn’t be a stroke of luck or only available to the privileged few. Aging is a social justice issue, which is why we stand together here today. Aging well is something every person deserves. Build Back Better is a step toward equity in aging—ensuring every person can age with dignity in the place they call home. We join with the others on this call in urging the Senate to swiftly pass the House legislation.