Advancing a Family-Centered Evidence-Base for Pediatric Home Health Care

An increasing number of children and youth with special health care needs are considered medically complex and require extensive medical care. The American Academy of Pediatrics has identified the home/family environment as the ideal place for these children to receive long-term care. But what do we know about the quality and accessibility of home health care for children?

The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit is part of the federal Medicaid law that requires each state to provide medically necessary services to children under 21 who are enrolled in Medicaid. However, many families are unaware of EPSDT and may not know how to access services for which their children are eligible. This fact sheet helps answer common questions about EPSDT and provides the name of the program in each state.

The Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit is part of the federal Medicaid law that requires each state to provide medically necessary services to children under 21 who are enrolled in Medicaid. However, many families are unaware of EPSDT and may not know how to access services for which their children are eligible. This fact sheet answers questions about how EPSDT applies in home health care for children.

Pediatric home health care is in crisis. Children with medical complexity require a substantial amount of medical care and activities-of-daily-living support to live at home. However, due to a shrinking pool of available home health care workers and narrow state eligibility requirements for services, most of their care is increasingly delivered by families without pay. In response, the option to pay family caregivers for their children’s medical labor is gaining national traction. This webinar provided a brief overview of laws that govern care for this population and specific models of paid family caregiving, and how they have been recently expanded in several states. Speakers explored a policy solution to pay families to provide home health care to their children with medical complexity and disabilities.

This document was created in response to an overwhelming demand for resources on paid family caregiving. State laws, policies, and regulations vary greatly across the country. The information provided here reflects paid family caregiving options that are currently available or under consideration.