Natalie Fenninger, one of the many faces of Medicaid. Photo courtesy the Fenninger family.

Four decades ago, when Congress created Medicare and Medicaid, long-term services and support for older Americans and younger people with disabilities were little more than an afterthought. Bruce C. Vladeck, who later ran both programs, said this critical care had become “a sideshow in the health care circus.”

Today, as we consider the biggest changes in health care since the 1960s, those receiving long-term assistance and their families may once again be largely forgotten. For too many lawmakers, personal assistance for the chronically ill still takes a back seat to acute medical care.

For the past three years, I’ve been writing a book on long-term care, and have spent countless hours visiting those receiving long-term services and their families. I met Natalie Fenninger, who worked hard and saved over a lifetime, but lived her last days as a Medicaid patient, sharing a tiny room in a nursing home with a stranger. And Cheryl Fears, who moved her frail parents into her home but had to sell her business so she’d have time to care for them. And Peggy Ingles, who after a terrible horse-riding accident, battled with a care system that made it hard to live at home. I saw firsthand why we need to remember them all as we redesign our health care system.

Like Natalie and Peggy, more than 10 million Americans need help with routine daily activities such as eating, bathing or managing their medicines. Most get this care at home. Only about 15 percent live in nursing facilities. As a nation, we spend more than $230 billion a year on this assistance, even though most care is provided informally by family members and friends.

Medicaid, created as the nation’s health program for poor mothers and children and the disabled, now funds more than 40 percent of all long-term care. While the program is slowly beginning to fund care at home, most recipients still must live in nursing facilities in order to get benefits.

Neither Medicare nor medigap supplementary insurance covers long-term services, and only 6 percent of those over 45 have private long-term care insurance.

We often hear lawmakers talk about the need to cover the uninsured. And when it comes to acute medical care, they are certainly right—more than 46.7 million Americans have no coverage. But remember, more than 250 million do have health insurance. By contrast, only 7 million Americans have long-term care insurance. That’s the real crisis of the uninsured.

Remedies do exist. Sen. Tom Harkin, D-Iowa, would expand the reach of Medicaid. Senate Aging Committee Chairman Herb Kohl, D-Wis., would create incentives for caregivers. A national insurance program preferred by Sen. Edward M. Kennedy, D-Mass., would include long-term services.

These ideas should be generating a national debate. But they aren’t. Sadly, for too many lawmakers, the long-term needs of millions of Americans are still what they were four decades ago—an afterthought.

Howard Gleckman is a senior research associate at the Urban Institute and author of Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America’s Most Urgent Health Crisis (St. Martin’s Press, 2009).