This blog is part of our Working Better Together series and was authored by Beth Englander, State Support Unit Attorney at the Oregon Law Center. This blog series is intended to provide our Health Law Partners with a platform to highlight successes, challenges, and innovative approaches to furthering health access and health equity in the states where they work.
For nearly 30 years, Oregon had an 1115 “demonstration” waiver from the federal government that allowed the State’s Medicaid program to waive the critically important children’s Early and Periodic Screening, Diagnostic and Treatment (EPSDT) provision. In most states, EPSDT provides comprehensive and preventive health care services for children under age 21 and is essential in ensuring that children and adolescents receive necessary preventive care, dental care, mental and developmental health care, and specialty services. For decades, many children in Oregon went without some of this critical care until the Oregon Law Center and the National Health Law Program partnered together to topple this decades-old pillar of Oregon’s Medicaid program that denied medical care to low-income children throughout the state.
Children Routinely Going without Essential Care
Because Oregon’s Medicaid program waived EPSDT coverage and services, children in all parts of the state were routinely denied medically necessary treatment for various conditions. Parents were commonly told that the care their children needed was “not covered” by the Oregon Health Plan, Oregon’s Medicaid program. For example, the Oregon Law Center worked with one child who sought help after being denied surgery for a painful foot deformity that prevented her from playing outside with her friends and kept her from getting the exercise she needed. Other children in Oregon were denied coverage for orthodontic care even when they suffered from severe jaw malocclusions. Another child represented by the Oregon Law Center has been diagnosed with severe autism, but Oregon’s Medicaid program repeatedly denied him the durable medical equipment that he needed to travel to and from school and medical appointments safely.
Bringing together Advocates to Push for Change
Advocates in Oregon, including advocates at the Oregon Law Center, had pushed the state to stop waiving EPSDT for decades, to no avail. But this year, through NHeLP’s partnership with Oregon Law Center, both organizations engaged in vigorous advocacy with Oregon’s Medicaid agency to persuade them not to seek renewal of the waiver of EPSDT in their current waiver renewal request. The Oregon Law Center gathered a coalition of influential local organizations, including Disability Rights Oregon and Dr. Ben Hoffman from the Oregon Health and Sciences University (OHSU), to add urgency in our Oregon-based advocacy to end the EPSDT waiver.
Working with Trusted Advocates at the State and National Level
Dr. Hoffman is a professor of pediatrics at OHSU School of Medicine, director of the Oregon Center for Children and Youth with Special Health Needs, and upcoming president of the American Academy of Pediatrics. Dr. Hoffman’s accounts of children going without needed care because of the waiver was powerful and effective. NHeLP also brought critically important national partners, such as the Georgetown Center for Children and Families, into the effort, which helped show the Oregon Health Authority that people all over the country were deeply troubled by the state of children’s health in Oregon. With consistent pressure from both state and national advocates, Oregon’s Medicaid agency finally agreed that the continued denial of medically necessary health care for low-income children was not in line with their goal to improve health, health equity, and access to care in Oregon. They took the EPSDT waiver out of the renewal application.
This huge victory for children covered by Medicaid in Oregon would not have come to pass if not for the partnership between Oregon Law Center and NHeLP. As of January 1, 2023, low-income children in Oregon will finally have the right to treatment for their health conditions. If not for the combination of local and national attention to this injustice and the potential threat of legal challenge, we may never have achieved this monumental change in policy and practice.
Working Better Together Blog Series
The Working Better Together blog series gives our Health Law Partners a platform to highlight successes, challenges, and innovative approaches to furthering health access and health equity in the states where they work. Find other blogs in the series here.
