Medicaid covers over 30 million children, or about 40 percent of all children. Medicaid covers disproportionately large shares of low-income children, children of color, and children with special health care needs. Medicaid law and policy necessarily impact children, oftentimes children who would be uninsured or underinsured without it.

Children with Medicaid coverage are entitled to a robust pediatric benefit package, known as Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services. Under EPSDT, federal law requires that children have access to all Medicaid-covered services needed to treat or ameliorate physical and mental health conditions. EPSDT requires that children receive needed services even if the state does not typically cover such services for others enrolled in Medicaid. Similarly, EPSDT precludes states from setting hard limits on the number or frequency of services because some children may require more intensive services and/or services over a longer period of time to meet their needs. The Centers for Medicare & Medicaid Services (CMS) recently released comprehensive guidance outlining EPSDT requirements. [Changes to Medicaid financing and regulations under consideration by the next Congress and incoming Administration could reverse progress toward ensuring all children enrolled in Medicaid receive the full pediatric benefit intended to support their healthy development.]

Holding States and Medicaid Managed Care Organizations accountable is key to ensuring EPSDT lives up to its promises

For the vast majority of children with Medicaid coverage, care is delivered through a Medicaid managed care organization (MCO). Under Medicaid managed care, states contract with MCOs to develop and maintain a sufficient and accessible provider network, manage care delivery, pay provider claims, and meet certain quality and performance metrics in exchange for a per member, per month fee. In 2023, over $500 billion state and federal dollars, or about 60 percent of total Medicaid spending, flowed through Medicaid managed care.

Federal law requires that MCOs meet certain network adequacy standards, including maintaining a sufficient number, mix, and geographic distribution of providers such that covered services are accessible to MCO enrollees to the same extent that such services are accessible to others in the region. States are required to monitor MCO compliance with network adequacy standards, including through the use of external quality review organizations (EQROs) that must validate network adequacy annually. Beginning in 2027, in addition to maintaining a state-selected quantitative network adequacy standard across seven different provider types (primary care, obstetrics/gynecology (OB/GYN), behavioral health, specialist, hospital, pharmacy and pediatric dental), states will be required to implement appointment wait time standards for primary care, OB/GYN (15 days), and outpatient mental health and substance use disorder services (10 days). Compliance with the new appointment wait time standards will be assessed through secret shopper surveys. States may also set additional network adequacy standards and impose penalties if MCOs do not meet contractual obligations, though such standards and penalties vary widely by state.

The rules are strong, but are children enrolled in Medicaid receiving the full array of health benefits they are entitled to under the law?

The Georgetown University Center for Children and Families (CCF), with support from the Robert Wood Johnson Foundation, partnered with researchers from PerryUndem to conduct focus groups with parents and guardians of children enrolled in Medicaid MCOs and providers who serve such children. Participants in the parent and guardian focus groups were chosen to provide a diverse array of perspectives, varying by demographic factors, such as political affiliation, race, marital status, and geographic area. The provider focus groups included pediatricians, family physicians, and other providers that interact regularly with children enrolled in Medicaid MCOs.

Eleven focus groups were conducted across four states: Michigan, Tennessee, Texas, and Washington. Two parent focus groups and one provider focus group were each held in Michigan, Tennessee, and Texas, while one parent group and one provider group were held in Washington. One focus group was held in Spanish for parents and guardians living in Texas. Supplementing the findings of the parent and provider focus groups, CCF also conducted a survey of providers and managers of pediatric practices who oversee administrative functions and may interact with MCOs in a different capacity. While the survey and focus groups only offer a snapshot of the experiences that families and providers have with MCOs, their findings provide insight into the challenges that children and families enrolled in Medicaid managed care face when trying to access care.

Key Findings

Medicaid coverage is of high value to children, their families, and providers

Parents and providers alike agreed that Medicaid provides affordable, comprehensive coverage. Parent focus group participants remarked that primary care is accessible in Medicaid, and participants in both parent and provider focus groups shared anecdotes of Medicaid being more affordable and having more comprehensive coverage than private insurance. Because of the lack of financial barriers, providers acknowledged that families with Medicaid coverage are more likely to follow through with medication regimens, therapies, and treatment plans, and receive preventive screenings.

Lapses in coverage, as was common during the Medicaid “unwinding,” led to missed appointments, skipped medications, and providers reporting an uptick in emergency room visits. Lapses also caused parents to worry more about their children getting sick or having an accident because they would not be able to afford emergency medical treatment, adding to an already stressful financial situation for parents.

Parents and providers work together to meet children’s needs

Throughout the focus groups, it was clear that most parents are highly engaged with their child’s care and valued having a strong relationship with their pediatrician. Pediatricians regularly “go to bat” for their patients, and when needed, they find creative ways to get children the services and medications they need. Parents and pediatricians commonly spoke about each other as partners in a child’s care, leaning on each other to find the best plan of treatment.

There is also a sense of community among parents who have children enrolled in Medicaid that the structure of the in-person focus groups illuminated. During the groups, when hearing the struggles that their peers were going through, parents would have sidebar conversations to share advice, suggest people to contact, and offer words of encouragement. Overwhelmingly, pediatricians said their favorite part of their job is interacting with their patients.

Specialty care and mental and behavioral health services are among the hardest to access

Parents, providers, and practice managers expressed difficulty with the lack of access to specialty care. Workforce shortages, particularly for specialized pediatric mental and behavioral health providers, have led to excessively long wait times for appointments and parents traveling to other areas of the state for care. Participants reported that lack of financial incentives have further exacerbated these workforce shortages, dissuading providers from going into pediatric subspecialities and deterring mental and behavioral health providers from taking any insurance, including Medicaid.

For some children, early intervention is especially critical. Problems with accessing timely assessments to diagnose mental and behavioral health conditions were prevalent – for example, children waiting for a year or more for an assessment – which could lead them to miss out on early intervention services that are only available to children under three years old. These delays in care can also negatively impact the emotional and mental health of the whole family; parents expressed feeling unsupported when trying to find mental and behavioral health services.

MCOs play a role in restricting access to care

Providers and practice managers had strong feelings about managed care’s impact on access to care. Cumbersome prior authorization requirements, narrow networks, and poor care coordination have created many frustrations for providers and those who are on the administrative side of service delivery.

“Game” was the most common term used among pediatricians when asked about their experiences working with MCOs. Providers and parents felt as though working with insurance is a game that they have to play, and in order to get the treatment their patient or child needs, they have to know how to game the system. The term “magic words” was also used by a couple of providers, explaining that in order to get something covered by a MCO, there are specific words that have to be used when seeking prior authorization approval. Practice managers concurred – 98 percent of survey respondents reported that prior authorization requirements are often or sometimes very burdensome for their practice.

Survey results also revealed that provider credentialing is a major barrier to joining an MCO network. Long wait times for approval and excessive requirements for provider credentialing were identified as an unexpected barrier to working with MCOs. Participants noted that mental health providers are subjected to additional requirements to enroll with an MCO, exacerbating the widespread issues with accessing mental and behavioral health services.

All of the parents felt that their MCOs could help more with care coordination. When parents reached out to their MCO for help, many times they could not get a hold of a representative, and if they did, the representative often did not have the answers they were seeking. There were rarely stories of an MCO helping to solve problems, and many times, the MCO exacerbated them. For example, if a parent called their MCO to find an in-network provider, many times they were given out-of-date provider directories. Parents reported having a hard time with navigating insurance jargon, making it difficult for them to express their needs to representatives. Navigation was difficult for providers as well, especially when working across MCOs. Figuring out which services and medications each plan covers is cumbersome and daunting for providers and their staff. Among practice managers and providers in the survey, 71 percent reported that MCO care coordinators rarely supported or coordinated care for their practice and patients. As a result, practices are taking on the burden of care management, but reimbursement rates do not reflect the additional work.

Lack of education, outreach and enforcement hinder the ability to utilize EPSDT services

For many parents and providers, the focus groups were the first time hearing the term “EPSDT.” Providers were more likely to be familiar with the concept, however, they knew it either as a general approach to screening or as “Bright Futures,” a nationally recognized periodicity schedule. When provided with more details about the benefit, focus group participants felt empowered with this new information, but also skeptical of the extent of the benefit in practice. Even though EPSDT sounded good on paper, it did not match up with the experiences that parents and providers have had with getting medically necessary services approved.

Reflections

The focus group and survey findings bring to the forefront a few key issues stakeholders should keep in mind when considering making changes to Medicaid. First, Medicaid is valued by families and providers with lived experience. Across all four states in the focus groups, parents commented that their children with Medicaid coverage have reliable access to primary care. Second, while families and providers felt that access to primary care in Medicaid managed care is strong, they noted that it can be much harder to access specialty care. Focus group participants shared that narrow networks and out-of-date provider directories make it hard to know how they can access timely specialty care. Third, Medicaid’s prescription drug benefit is robust but navigating the utilization management rules imposed by different plans is difficult for families and providers. Pediatricians noted that the information in the electronic medical record system is often out-of-date so they are not able to discern which MCOs cover which drugs, or under what circumstances, when they are writing the prescription. Finally, more needs to be done to ensure families and providers understand and utilize Medicaid’s pediatric benefit, EPSDT, to support children’s healthy development. Federal law requires states to inform families about EPSDT services, and yet, families and providers were generally unfamiliar with it.

View the brief here