Health Advocate: Early and Periodic Screening, Diagnosis and Treatment (EPSDT)

Children have unique healthcare needs that change as they grow and develop. Research shows that children from lower income families are more likely to encounter health problems, including vision, hearing, speech and dental problems, elevated blood lead levels, sickle cell disease, behavior problems, anemia, asthma and pneumonia. (See generally the Data Resource Center for Child and Adolescent Health at www.childhealthdata.org). If undetected and left untreated, even minor health issues in children can turn into major concerns, possibly with lifelong consequences.

Federal law requires state Medicaid programs to offer Early and Periodic Screening, Diagnosis and Treatment to all Medicaid-eligible children under age 21. Commonly referred to as ?EPSDT,? these services are designed to foster childhood growth and development so that children in low income families receive the health check-ups and treatments they need. EPSDT services ensure that children do not needlessly suffer from health conditions that may be treatable and preventable.

President Lyndon Johnson made the case for early childhood healthcare screening and treatment when he called upon Congress to expand Medicaid services for children nearly 40 years ago: ??the early years are the critical years?Our goal must be clear?to give every child the chance to fulfill his promise.? (Special Message to the Congress Recommending a 12-Point Program for America’s Children and Youth, Feb. 8, 1967).

Congress responded by enacting the EPSDT provisions, which have played an important role in improving children?s health over the past four decades. Despite the successes of EPSDT services, these provisions have yet to realize their full potential to provide a healthy future for every low income child.

The EPSDT provisions in Medicaid emphasize prevention, periodic check-ups and early intervention when problems arise.

Checkups and screenings should begin right away for newborns and continue on a frequent basis for infants and toddlers to help ensure early detection of problems. Federal law requires states to adopt a periodicity table to establish a schedule for screenings and developmental assessments. Most states base their periodicity tables, with some modifications, on a model developed by American Academy of Pediatrics through its Bright Futures program.

Federal law requires states to provide all Medicaid eligible children with periodic screening, vision and hearing services, at intervals that meet reasonable standards of medical practice. These screenings help identify a range of health and developmental issues in children, from Autism Spectrum Disorder to hearing loss to signs of physical abuse. The following chart outlines these screenings.

Any physical or mental illness or conditions identified by a screen must be then be diagnosed, and treated, even if the condition is identified outside a regular screening period.

EPSDT requires not only that states screen and diagnose health and mental health illnesses or conditions in low income children; they must ensure children are provided treatment as well.

Under federal law, Medicaid programs are required to ?correct or ameliorate physical and mental illnesses and conditions? that are detected in Medicaid eligible children. 42 U.S.C. § 1396d(r)(5). States must provide all medically necessary services that could be available under Medicaid, even if a particular service is not covered for adults under that state?s Medicaid State Plan.

States have additional requirements under EPSDT. States have an affirmative obligation to conduct outreach efforts to inform parents and caregivers about EPSDT services and the importance of preventive care and early detection of health and mental health conditions in children.

States must also offer assistance in scheduling appointments prior to each due date of a child?s periodic examination, as well as transportation services to get children to and from health providers. Information about EPSDT benefits and services must be provided in a format that can be easily understood, including translated written materials and oral interpretation if the child?s family has difficulty reading or understanding English.

Despite robust federal requirements to promote and protect children?s health, state compliance with EPSDT is often deficient and presents an ongoing challenge for parents, providers and healthcare advocates.

At the beginning of April each year, states must report participation rates in EPSDT on Form 416, developed by the Centers for Medicare & Medicaid Services (CMS) to track state performance. For example, all Medicaid eligible children must be screened for elevated blood lead levels (EBLLs) at least twice before the age of 2 (at 12 months and at 24 months). However, according to data reported on Form 416 for 2011 (the most recent year information is available), more than 75% of children under the age of 2 failed to receive even one EBLL screen.

States seeking to reduce state Medicaid spending may attempt to cut back or limit access to healthcare services for children. However, the denial or termination of medically necessary treatment in Medicaid triggers certain due process rights and protections. These include the right to a state fair hearing before an impartial decision-maker and the right to the continuation of services pending the outcome of the appeal. The right to a fair hearing in Medicaid is based upon the United States Constitution?s due process protections. Fair hearings remain one of the key due process protections to ensuring that states fulfill their EPSDT obligations. For more information, see NHeLP?s issue brief on Medicaid due process – Appeal Rights and Medicaid Benefit Reductions.

As a result of persistent and widespread violations of federal EPSDT requirements, advocates across the county have filed litigation against states on behalf of low income children who have been denied medically necessary care. NHeLP has frequently partnered with state and other national advocates to bring such litigation to enforce the EPSDT mandate. NHeLP?s fact sheet on Medicaid EPSDT Litigation describes some of these cases and how they have helped children obtain needed services. Some state Medicaid programs currently operate under court supervision as health advocates and state officials work to correct longstanding violations of EPSDT.

The Affordable Care Act (ACA) expands Medicaid coverage to children (up to age 18) with household income up to 138% of the Federal Poverty Level (FPL). The children?s expansion is mandatory and must be implemented by all states beginning in 2014. It is not tied to a state?s decision about adopting the Medicaid expansion for adults. As a result, children who previously did not qualify for Medicaid, many of whom were uninsured, will soon be entitled to the full array of EPSDT benefits.

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Advocates and state officials are currently implementing the terms of a settlement agreement in a class action lawsuit filed eleven years ago in California on behalf of children in or at risk of foster care placement. The lead plaintiff was removed from her home at age 4 due to suspected abuse and neglect. She experienced 37 different moves in foster care, including 19 psychiatric hospitalizations, by the time she was 14 years old. As a result of this case, the state agreed to provide intensive mental health services, including intensive care coordination and home based services, to these children with serious mental and emotional needs. The agreement also requires the development of a practice model that integrates the planning and delivery of child welfare and mental health services to better meet the needs of the child and family. NHeLP serves as co-counsel and has published a fact sheet on the settlement agreement ? EPSDT Home and Community Based Services Mental Health Services: Settlement Agreement in Katie A. v Douglas.

In 2011, CMS published its Oral Health Strategy to improve access and increase utilization of pediatric dental benefits under EPSDT. In 2010, fewer than half of Medicaid eligible children received even one preventive dental service. The strategy addresses key barriers, including lack of providers, administrative burdens and lack of information for parents on the availability of pediatric dental benefits. A 2013 study ? Utilization of Dental Services Among Medicaid-Enrolled Children ? appearing in the Medicare & Medicaid Research Review ? identifies substantial variations in the use of the pediatric dental services. The study found wide disparities in utilization, based upon the age of the child and length of time enrolled in Medicaid. The study suggests additional strategies to effectively target underserved and underutilizing sub-groups. The renewed focus on children?s oral health represents significant progress since NHeLP?s testimony before the House of Representatives in 2007 ? Hearing on Oversight of Dental Programs for Medicaid-Eligible Children.

According to a recent report published by the Centers for Disease Control and Prevention (CDC), Medicaid-eligible children are twice as likely to have dangerously high blood lead levels than children from higher income families. In fact, more than 535,000 children in the U.S. currently have blood lead levels higher than 5 µg/dL, the CDC?s new ?reference value? designed to trigger direct, clinical intervention. However, last year CMS allowed states to end mandatory EBLL testing for all Medicaid-eligible children if a state develops an effective method for targeting screening to children at greatest risk for blood lead poisoning. To date, no state has sought approval to end universal screening. For additional information, see NHeLP?s analysis ? CMS guidance for States Seeking to End Universal Blood Lead Screening for Medicaid-eligible Children.

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The EPSDT mandate has been widely successful in protecting and improving the health of children in low income families. However, that success has often come at the hand of continued vigilance and hard fought advocacy to enforce this legal obligation in states for the benefit of these vulnerable and needy children.

As millions more Americans gain healthcare coverage in 2014 through the Affordable Care Act, the lessons learned from EPSDT will be more important than even as we work to ensure that having coverage results in actually receiving needed care.