When it comes to caring for children, Medicaid defines what it takes to keep them healthy. In 1967, the federal government established the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) program, with the following effects:

  • Early and periodic screening: Each child has access to preventive and well care that occurs on a set schedule. The goal is to detect problems early so that they can be corrected sooner. Services include but are not limited to dental care, hearing tests, immunizations, lead screening, mental health services, and vision screening.
  • Diagnosis: For any screening tests that are borderline or positive, EPSDT requires that Medicaid complete additional testing to confirm a diagnosis.
  • Treatment: For any confirmed diagnosis, EPSDT requires that the state pays for necessary treatment, regardless if that benefit would not normally be covered by Medicaid.

EPSDT is a mandated benefit that puts preventive and wellness care front and center for children. It is the responsibility of each state to provide this benefit to children and adolescents enrolled in the Medicaid program until they are 21 years of age. States can also choose to use it as the standard of care for children enrolled in their Children’s Health Insurance Program (CHIP). Some states, however, use a different standard for the CHIP program.

What You Need to Know About CMS Form 416

States report their participation and compliance with EPSDT by completing a form called the CMS Form 416 each year. The form breaks down the Medicaid population into different age groups and then asks how many of those children received a particular screening or treatment in that year.

CMS Form 416 allows the federal government to keep track of each state’s performance. The information could be used to see where (or if) states are falling behind and could be an opportunity to guide them toward improvements in providing the necessary care. The problem is that the data is collected but not utilized to its potential.

When states do not complete CMS Form 416 or when they are deficient in meeting EPSDT standards, they are not penalized by the Centers for Medicare and Medicaid Services (CMS).

Improvement in EPSDT comes about not because the federal government enforces its laws. Improvement comes about because the people stand up for themselves. A number of class action lawsuits have been brought against different states to demand the care they were promised. While areas of EPSDT have fallen short, dental care, lead screening, and mental health services are those where the most legal action has been taken.

Where EPSDT Fails in Dental Care

A healthy mouth is essential to maintaining proper nutrition and psychological well-being. Unfortunately, dental abscesses are one of the most common issues children face.

In 2014, only 48% of eligible children on Medicaid received preventive dental care and when a problem was identified, only 22% received treatment for that condition.

Even when you look at the best of the best, with all states and the District of Columbia reporting, only 13 states—Arkansas, Colorado, Connecticut, District of Columbia, Georgia, Illinois, Maryland, Massachusetts, Nebraska, South Carolina, Texas, Vermont, and Washington—performed at a lowly 51 to 62% rate for preventive dental services.

When it comes to treatment, the numbers are even less impressive. The top-performing states, ranging from 25 to 52% compliance, include Arkansas, Colorado, Connecticut, Idaho, Massachusetts, Mississippi, New Jersey, New Mexico, Oklahoma, Texas, Virginia, Washington, and West Virginia.

Where EPSDT Fails in Lead Screening

Exposure to lead can lead to serious health consequences ranging from anemia to behavioral and neurologic disorders. EPSDT requires that children enrolled in Medicaid be screened for lead in their blood at 12 months and 24 months of age.

Unfortunately, after federal funding for the Center for Disease Control and Prevention’s Healthy Homes and Lead Poisoning Prevention Program ended in 2012, fewer states have provided the requested data to the government.

Medicaid data for 2015 shows that only 38% of children had been screened for blood lead levels as required by the EPSDT mandate.

The National Committee for Quality Assurance (NCQA), a non-profit organization, released data estimating that only 66% of 2-year-old children enrolled in Medicaid were screened for lead levels over the past 2 years.

Where EPSDT Fails in Mental Health Services

Once a child between 6 and 20 years old has been hospitalized for a mental illness, access to continued behavioral and mental health services is essential. EPSDT requires that these children be seen in follow-up within 7 days of their hospital discharge.

For 2014, on average, only 44% of children were seen in follow-up within 7 days and 65% within 30 days of a hospitalization for a mental illness.

States performing at the top of the class for the 7-day follow-up at 62 to 76% include Iowa, Kansas, Maine, Massachusetts, Nevada, New York, Oregon, Rhode Island, and Vermont, but when it comes to the 30-day follow-up, swap out Iowa for Indiana. The latter group performed at 78 to 91%.

Many medications, especially stimulants, used to treat attention deficit hyperactivity disorder have side effects. EPSDT requires that children prescribed these medications be seen within 30 days of starting the medication (Initiation Phase) and that they are then seen twice within the next 9 months (Continuation and Maintenance Phase).

For 2014, the states averaged only a 44% success rate for the Initiation Phase and 57% for the Continuation and Maintenance Phase.

For the Initiation Phase, Arkansas, Connecticut, Maine, New York, Ohio, Oklahoma, Oregon, and Rhode Island, and Vermont performed highest at 53 to 69% while the Continuation and Maintenance Phase reached higher success rates from 63 to 84% in Arkansas, Connecticut, Maine, New York, Ohio, Rhode Island, Vermont, and West Virginia.

The Future of Medicaid

EPSDT is already struggling. States are falling short of providing the care children from low-income families and backgrounds need and deserve, and the federal government has yet to take action.

It seems this trend is unlikely to improve anytime soon.

The Trump administration has federal funding for Medicaid in its crosshairs. The proposed American Health Care Act, as it was named in the U.S. House of Representatives, would have decreased federal funding to Medicaid by $800 billion over 10 years, impacting a state’s ability to not only provide EPSDT benefits but Medicaid benefits at large. Although this legislation, later called the Better Care Reconciliation Act, failed to pass a vote in the Senate, it sets a precedent for defunding Medicaid. Another law may be proposed in its place.

This leaves Americans to fend for themselves. Class action lawsuits have forced the hands of the states to do the right thing. Here are some of the more prominent lawsuits that have come into play in recent years.

  • Emily Q. vs. Bonta (California)Florida Pediatric Society/The Florida Chapter of the American Academy of Pediatrics v. Levine (Florida)G.D. vs. Riley (Ohio)N.B. vs. Norwood (Illinois)Salazar vs. the District of Columbia (District of Columbia)

With Medicaid funding at risk, expect more class action lawsuits in the future.

A Word From Verywell

The federal government set the EPSDT mandate to assure that children on Medicaid receive essential, quality preventive care. However, there is little being done to assure that states live up to that promise. If your child is denied care under Medicaid, bring this to the attention of your state’s Department of Health. If you continue to find deficiencies, it may be in your best interest to see if there is a class action suit in your state to address the issue.