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JAMA Forum Archive, 2012-2019: Health policy commentary from leaders in the field
JAMA Forum

After 50 Years, a Leap Backward for Children?

In 1967, President Lyndon Johnson proposed adding to the Social Security Act a guarantee of basic health services for poor children. He explained to the nation, “The problem is to discover, as early as possible, the ills that handicap our children. There must be a continuing follow-up and treatment so that handicaps do not go neglected.”

Joshua M. Sharfstein, MD

Congress responded by creating a requirement for states to provide “early and periodic screening, diagnostic, and treatment services” for children in the Medicaid program. The provision became known for its first initials, EPSDT. The requirement was expanded under President Nixon in 1972, under President George H. W. Bush in 1989, and yet again in 1993. For more than half a century, this core guarantee of access to care has never faced a serious threat of elimination—until now.

Seismic Effect for Child Health Policy

As part of the recent negotiations to pass the American Health Care Act through the US House of Representatives, Speaker Paul Ryan (R, Wisconsin) and other House leaders agreed to a provision that drops the EPSDT requirement for states that choose the block grant option in Medicaid. This legislative detail was barely noticed in the scrum of the news, except by those who recognize its seismic effect for child health policy. The EPSDT provision has been a bedrock of access to care for 50 years. It is no exaggeration to say that its demise would represent a leap backwards for the health of US children and for the country as a whole.

Indeed,  the origin of EPSDT was concern for national security. Historians point back to a 1964 federal task force report titled, “One Third of a Nation.” The report found that undiagnosed and preventable conditions rendered millions of young men ineligible on health grounds to join the military and predisposed them to a “lifetime of recurrent unemployment.”

To tackle this challenge, Congress required more than treating the consequences of poor health. Under EPSDT, states must reach out and find children in desperate need of services to prevent disabilities from developing or from becoming more severe.

It is no coincidence, then, that EPSDT began to be implemented as the field of pediatric primary care took shape, with requirements for a medically accepted schedule of access to well-child visits and developmental screenings. (Today, the federal government accepts the Bright Futures program, a national initiative led by the American Academy of Pediatrics.) The EPSDT provision has protected millions of children by ensuring access to immunizations, screening and services for lead poisoning, and identification and follow-up for developmental disabilities.

And there’s more. The EPSDT program provides children with services not typically available in commercial insurance or in the Medicaid program for adults. As Sara Rosenbaum, JD, of George Washington University in Washington, DC,  has written, EPSDT “remains the clearest articulation of the belief that where low income children are concerned, conventional health insurance is insufficient.” These services include treatment for vision, oral health, and hearing, as well as vital care for mental illness, addiction, autism, and other behavioral health disorders. In recent years, litigation on behalf of children under the EPSDT guarantee has helped foster children receive in-home support, children with serious emotional conditions receive essential care in times of crisis, and children with autism receive therapeutic services.

Courts have repeatedly focused on the importance under EPSDT for states to find children in need and help them. As one court ruled:

[States cannot] expect that children of needy parents will volunteer themselves or that their parents will voluntarily deliver them to the providers of health services for early medical screening and diagnosis. By the time [a child] is brought for treatment it may too often be on a stretcher. . . . EPSDT programs must be brought to the recipients.

Implications for All Children

Because of its emphasis on prevention, EPSDT has had a profound influence on the types of services and health professionals available to children in the United States. “Our health goals for children cannot be met unless we develop new patterns of health care,” President Johnson wrote Congress in 1967. “New types of health workers must be trained to help our doctors do more.”

It is now possible to find hospitals, early intervention programs, schools, and offices with an array of occupational therapists, physical therapists, and rehabilitation specialists helping children succeed in life. Few of these professionals may recognize that the vital role that the EPSDT provision plays in ensuring reimbursement for their work. Ending EPSDT would fundamentally weaken every aspect of this infrastructure, affecting all children who need services.

More than 5 decades in law, EPSDT has not been without controversy. States have fallen short in conducting certain screenings and providing certain care to children; Congress has provided flexibility to states applying protections to children in higher income families during insurance expansions; and experts have debated the evidence for specific services for inclusion. But until now, the basic premise of EPSDT guaranteeing access to vital care for those most in need has never been in doubt. Even when several Republican governors recently backed major changes in the Medicaid program, they still called for continued full federal support of EPSDT benefits for children. And yet without public hearings or engagement of any kind, the House of Representatives passed legislation to take these protections away.

The rollback of EPSDT may appear to be a footnote in a bill that would take health insurance away from 24 million Americans. It is not a footnote. It is an alarm bell. It is warning of a profound shift in policy and values that would fundamentally curtail opportunities for children in the United States to reach their potential.

About the author: Joshua M. Sharfstein, MD, is Associate Dean for Public Health Practice and Training at the Johns Hopkins Bloomberg School of Public Health. He previously served as Secretary of the Maryland Department of Health and Mental Hygiene, as the Principal Deputy Commissioner of the US Food and Drug Administration, and as Commissioner of Health for Baltimore. He is a consultant for Audacious Inquiry, a company that has provided technology services and other support to Maryland’s Health Information Exchange. A pediatrician, he lives with his family in Baltimore.