Scope of Health Care Benefits for Neonates, Infants, Children, Adolescents, and Young Adults Through Age 26

In 1965, Congress enacted the Medicaid program (Title XIX of the Social Security Act Amendments of 1965; Pub L No. 89–97) as a federal-state partnership that would pay for necessary health care services for children from low-income families and for adults with disabilities who lacked other medical insurance. Indeed, the government recognized the value of supporting the health of individuals in childhood and youth to have healthy young adults fit for military service.⁴  In early 1967, President Lyndon Johnson declared, “Our goal must be clear – to give every child the chance to fulfill his promise.”⁵  In January 1968, the president signed into law the Social Security Amendments of 1967 that established Early and Periodic Screening, Diagnostic and Treatment (EPSDT) as the required child health benefit for children insured by Medicaid through age 21. The vast majority of states now use the periodicity schedule in Bright Futures as the basis for defining the preventive component of the EPSDT benefit.⁶  EPSDT and Bright Futures represented landmark advances toward achieving a comprehensive set of health care benefits for all children.

Additional opportunity to expand core benefits to a larger population of children arose with the passage of the Patient Protection and Affordable Care Act of 2010 (ACA; Pub L No. 111-148). The ACA established a set of 10 essential health benefits (EHBs), the last of which was “pediatric services, including oral and vision care.” By specifying these EHBs, the architects of the ACA intended to establish a baseline benefit standard for all new individual and small group (<50 full-time employees) private exchange plans; all new (nongrandfathered) individual and small group private nonexchange plans, and new Medicaid expansion plans. Additionally, the ACA mandated all private health insurance plans that did not previously have a mandate for a minimum pediatric scope of benefits to employ the Bright Futures guidelines in setting preventive care and the minimum scope of benefits for children. However, in implementing the EHB statute, the United States Department of Health and Human Services elected not to adopt a single, comprehensive, preemptive federal standard and instead gave states flexibility to define the benefit package.

The scope of pediatric health care benefits differs markedly across state Medicaid and Children’s Health Insurance Program (CHIP) plans as well as across commercial exchange plans that are regulated by the ACA.⁷  In 2019, before the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic, 50% of all United States children 0 to 18 years of age were insured through employer-sponsored insurance, 37.5% were covered by Medicaid and CHIP, 4.9% were insured through marketplace and other nongroup insurance plans, and 2% were insured through other insurers (eg, Tricare, Medicare, and the Indian Health Service).⁸  More than 5% of all United States children were uninsured, but there was great variation of uninsurance rates across states. During the pandemic, the number of children enrolled in Medicaid and CHIP significantly increased and represented nearly one-half of United States children. This increase was attributable principally to 2 factors. First, many children became newly eligible for Medicaid and CHIP because of the adverse effects of the pandemic on parental employment and benefits and on family income. Second, the Families First Coronavirus Response Act enhanced federal funding by increasing the Federal Medical Assistance Percentage to states on the condition that states allowed continuous Medicaid enrollment through the end of the public health emergency. Nonetheless, significant variability in pediatric health care benefits persists for many reasons:

1. Although state Medicaid programs are required to provide certain pediatric benefits under EPSDT, they have discretion with services⁹  with respect to the adoption of optional benefits (eg, optometry, eyeglasses, personal care).¹⁰  States may also alter Medicaid benefits through state plan amendments and through federal waivers. In addition, state Medicaid agencies and managed care organizations differ in their interpretations of medically necessary services and in their specifications of the dose, duration, and frequency of certain interventions (eg, habilitative and rehabilitative services). Additionally, providers and families may confront variable “soft limits” on services, such as prior authorization requirements or established care limits.

2. Under CHIP, states may choose to use CHIP funds to expand Medicaid for children, cover children through a separate CHIP program, or adopt a combination of both approaches. In states that use CHIP funding as an expansion of their Medicaid programs, the EPSDT standard for benefits and scope of coverage applies for the children in the program. States with separate CHIP programs must offer coverage that is comparable or “benchmarked” to other popular coverage sources, such as health plans available to federal and state employees or the largest non-Medicaid health plan in the state, which are not required to abide by the standard outlined in EPSDT. Hence, children insured by a CHIP plan that is not connected to Medicaid may have a benefit package richer than commercial plans but less robust than Medicaid, even if those children reside in the same state.

3. Beyond specifying vision and oral care, the ACA did not otherwise define a set of benefits under the tenth category of EHB (pediatric services). However, under the ninth EHB category of “preventive and wellness services and chronic disease management,” the Centers for Medicare and Medicaid Services (CMS) does specify a mandatory package of preventive care benefits for children (https://www.healthcare.gov/preventive- care-children). These benefits are exempt from cost sharing (eg, copayment or coinsurance). Congress set EHB categories and left it to the administration to develop the details within the categories, as is common in federal legislation.^* CMS then issued broad regulatory guidelines that provided states with significant flexibility to set EHBs. Specifically, CMS allowed each state to choose a benchmark for EHBs using the scope of benefits of any 1 of the following 10 existing state plans: the largest plan by enrollment in any of the 3 largest small group insurance products in the state’s small group market; the 3 largest state employee health plans; the 3 largest federal employees health benefits program plans; and the largest commercial insurance plan offered by a non- Medicaid health maintenance organization.¹¹  In the initial implementation, approximately half of states actively picked an existing benchmark. In the remaining states, the benchmark defaulted to that of the largest health plan in the state’s small group market. Beyond the choice of a benchmark plan, other pathways influence EHBs. For instance, federal rules allow insurers to modify a state’s benchmark plan by replacing a benefit in 1 EHB category with a different benefit in the same category. If a state chose a benchmark plan that had no coverage in an EHB category, the state could define the scope of benefits or shift responsibility for defining those benefits to the insurer, which would likely result in the least robust level of benefit. States were unlikely to mandate additional benefits that had not been required before 2012, because the states were obligated to pay the consequent additional premium expenses. How the ACA treats pediatric oral care provides another example of imperfect design. Exchange plans are required to offer pediatric dental benefits and can do so as an add-on product, but individuals are allowed to purchase health plans without this option.¹² 

4. The choice of specific benefits in each category of EHBs can influence the actuarial value of the health plan (the expected percentage of medical costs that a plan will cover, taking into account the plan’s various cost-sharing features). When plans choose to adopt new benefits, especially ones that beneficiaries will frequently use, they have 2 choices. Plans can either reduce other benefits or increase cost-sharing by raising deductibles, copays, coinsurance, and maximum out-of-pocket expense if they aim to maintain stable premiums. Alternatively, plans can increase premiums that they pass on to employers and beneficiaries. Although the ACA did mandate that all new plans cover the 10 categories of EHBs, the ACA also put limits on cost-sharing and articulated actuarial value requirements (eg, bronze, silver, and gold). Variability in EHBs from plan to plan can be seen in part as a natural consequence of the fiscal dissonance of these requirements.

5. Many children are covered under employer-sponsored insurance plans that are not regulated by the ACA. For these children, there is no core set of pediatric health care benefits.

Moreover, a new CMS rule goes beyond earlier regulations and allows states broader discretion to alter their EHB benchmark plan. The 2019 Notice of Benefit and Payment Parameters final rule¹³  grants states the ability to change their EHB package annually. States can now substitute benefits across EHB categories in their existing plan (for example, plans can choose to reduce or remove an existing oral or vision care benefit under the pediatric EHB category and at equivalent cost and add or expand another benefit, such as enhanced treatment of opioid use disorder under the mental and behavioral health EHB category). A state may also choose to replace its current benchmark plan with that of another state, even though the replacement plan offers a less robust package of benefits. A state may also replace its entire panel of benefits for 1 or more EHB categories with the benefits that another state offers for those categories. However, each plan must offer a common core set of pediatric preventive benefits. The rule also forbids states from choosing a benchmark plan that is more generous than any available benchmark options in the state. Under these regulations, states have no incentive to augment pediatric EHBs but can choose to reduce the existing panel of nonpreventive pediatric benefits. Loss of EHBs could subject families to greater out-of-pocket expenses for these services, because the ACA’s prohibition on annual and lifetime caps and cost-sharing protections are for EHBs only.

Although federal attempts to deconstruct major legislative components of the ACA and the Medicaid program have not succeeded, recent regulatory efforts have the potential to roll back progress made by both public and private payers toward enhancing pediatric health care benefits to achieve better alignment with those recommended by the AAP. In some cases, actual or pending regulatory actions threaten to reverse hard-won gains achieved for children over many years. For example, the approval of adult work requirements in states that adopted Medicaid expansion threatens the well-being of children in the family. Research has demonstrated that children of parents enrolled in Medicaid are 29% more likely (95% confidence interval, 11% to 47%) to receive a well-child visit.¹⁴  More frequent use of Medicaid waivers can also have the intended or unintended effect of curtailing pediatric benefits to all children or a subset of children. For example, a few states have proposed eliminating EPSDT benefits under an 1115 waiver for 19- and 20-year-olds in the Medicaid program.

In response to Executive Order 13813 (“Promoting Healthcare Choice and Competition across the United States”), on June 21, 2018, the United States Department of Labor issued a final rule on association health plans (AHPs).¹⁵  This rule allowed those in the same trade, industry, or line of profession to band together to offer AHP coverage that, depending on the type of coverage, could be exempt from state or federal ACA standards—for instance, EHBs or coverage of pre-existing conditions.

In addition, the Internal Revenue Service, the United States Department of Labor, and the United States Department of Health and Human Services issued a final rule on August 3, 2018, on “Short-Term, Limited-Duration Insurance” that expanded the ability of commercial payers to issue insurance plans that do not cover EHBs or pre-existing conditions.¹⁶  In the past, such plans could be purchased for up to 3 months’ duration. The new rule makes these available for up to 364 days and renewable for up to 3 years. Short-term plans are not considered individual coverage and are, therefore, exempt from ACA individual plan consumer protections. Moreover, on October 24, 2018, CMS issued guidance intended to expand the use of ACA Section 1332 innovation waivers, now called “State Relief and Empowerment Waivers,” which would encourage states to waive provisions of federal ACA law and expand access to AHPs and short-term limited-duration plans.¹⁷ 

These efforts, taken together, will serve to advance insurance plan coverage that offers fewer consumer protections and less robust benefits. Further, expanded use of AHPs, short-term limited-duration plans, and similar coverage will destabilize ACA-compliant coverage and make health care more expensive for families. Efforts must be undertaken at all levels to ensure children do not experience a reduction in benefit coverage because of these or similar efforts.

The scope of health care benefits should begin with the full array of services recommended in this policy statement by the AAP. Coverage determinations of existing interventions should be based on evidence of usefulness and understanding of risks. Evolution of health care benefit coverage should reflect changes in treatment modalities and should adapt to new evidence and changes in standards of care as well as innovations in care. Recognizing the importance of scientific evidence does not mean in all cases that coverage of existing interventions should be denied in the absence of conclusive scientific evidence. If sufficient scientific evidence for an intervention is not available, professional standards of care must be considered. If professional standards of care do not exist or are outdated or contradictory, decisions about existing interventions must be based on consensus pediatric expert opinion.¹⁸  The benefits should be delivered in an efficient manner by appropriately trained professionals, including primary care pediatricians and other generalists, pediatric medical and mental health subspecialists, pediatric surgical and radiology specialists, and pediatric dental professionals. These services should be delivered and coordinated in a comprehensive, patient- and family-centered, physician-led medical home—the setting for primary care delivered or directed by well-trained physicians who are known to the child and family, who have developed a partnership of mutual responsibility and trust with them, and who provide accessible, continuous, coordinated, and comprehensive care. These services should include but are not limited to the following broad categories: preventive services; physician and other health care provider services, including mental health; facility-based care; therapeutic and ancillary services; durable medical equipment; and laboratory, diagnostic, assessment, and testing services.

For children to have access to services, payments must cover the fixed and variable costs of providing the services.¹⁹  Further, payments should be adequate so that physicians, pediatric service providers, and manufacturers will have continued incentive to remain in (or enter into) the business of caring for the health and developmental needs of children. Without adequate payment, there is significant risk that children and families will be unable to access services and products needed to maintain and promote health in children. This risk is compounded by the recognition that health in adulthood is predicted by health in childhood and that prompt effective treatment of diseases that manifest during childhood (eg, hypertension, diabetes, and inflammatory bowel disease) can improve health and reduce costs during adult life. It is critical to stress that adequate payment for the provision of child health care services is a vital investment in lifespan health.

Preventive services primarily assess risk factors for, or prevent the development of, medical conditions or developmental disorders that affect health or development from birth to 26 years of age. Some or all of these services may be provided in a primary or specialty care medical home or in the hospital. For these services to be highly effective, they should be provided with culture-specific context. Preventive services include but are not limited to the following:

• Health supervision with comprehensive preventive care, according to the current version of the AAP “Recommendations for Preventive Pediatric Health Care,”²⁰  and Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents.¹  Age-appropriate screenings include but are not limited to risk evaluation and indicated assessment or laboratory testing for (1) social determinants of health; (2) maternal depression; (3) attainment of developmental milestones; (4) autism spectrum disorder; (5) anemia; (6) lead screening; (7) dyslipidemia; (8) psychosocial and behavioral conditions; (9) adolescent depression; (10) sexually transmitted infections; (11) HIV infection; (12) tobacco, alcohol, and substance use; and (13) other screenings as may be recommended in the future by the AAP or included in revisions of Bright Futures.

• Immunizations according to recommendations included in the most current version of the “Recommended Childhood and Adolescent Immunization Schedule.”²¹ 

• Educational, counseling, and support services for all children, including but not limited to:

  1. Anticipatory guidance relating to normal growth and development;

• Tobacco-cessation counseling and treatment services for children and/or household contacts; and

• Services related to the maintenance of a healthy weight—including prevention (eg, counseling all children and parents on the multiple benefits of regular physical activity), management, and treatment of pediatric obesity and overweight, malnutrition, eating disorders, or nutritional deficiency, including nutrition counseling and follow-up with physician or registered dietitian and all necessary laboratory services, including evaluation of risk factors.

Preventive pediatric oral health services, including:

1. Oral health risk assessment and counseling, fluoride varnish, sealants, and similar preventive oral care;

Provision of anticipatory guidance examinations and/or diagnostic investigations; and Oral surgery, including moderate sedation and general anesthesia services, as indicated, to treat oral health problems. Early intervention services for mental and behavioral health disorders and alcohol and substance use disorders.

Preventive vision services, including screenings and examinations by individuals trained in the care of children for the purpose of early identification of impaired visual acuity of problems that can lead to impaired vision. For children with conditions that can affect vision (eg, diabetes), benefits should cover the increased frequency of screenings appropriate for the condition.

Preventive audiology services, including screening and evaluations by professionals trained in the care of children to provide early detection and diagnosis of hearing problems. These services include screening during the neonatal period, yearly screenings, and screenings when a parent, caregiver, or teacher raises concerns and subsequent high-frequency screening at 11 to14 years, at 15 to 17 years, and at 18 to 21 years of age.

Preventive reproductive and sexual health services, including coverage for counseling and education to promote healthy choices regarding reproductive and sexual health, family planning services to minimize unintended pregnancies, and appropriate and effective means of minimizing risks of sexually transmitted diseases. Coverage should also be provided for transition of care to other specialists for treatment of pregnancy in young women or appropriate specialists for children with sexually transmitted infections when treatment is beyond the scope of usual pediatric care.

Preventive prenatal care, including prenatal consultation with a pediatrician as well as palliative care consultation, counseling, and services for all pregnancy and fetal management options, including evaluation of psychological risk factors that may affect the health and safety of the infant or family.

Preventive postpartum care, including:

1. A reasonable length of stay for the newborn infant to permit identification and treatment of early problems and to ensure that the family is able and prepared to care for the infant at home;

2. Newborn screening for metabolic and genetic disorders as well as hearing screening and other appropriate tests;

3. Prompt follow-up visit in the physician’s office (optimally between 48 to 72 hours following discharge) after initial hospital discharge;

4. Postnatal home visits as indicated; and

5. Breastfeeding management, consultation, and support to increase the initiation, exclusivity, and duration of breastfeeding, both in the birth hospital and after discharge in the ambulatory setting.

Physician and health care provider services are delivered (1) in the primary care and medical home setting, (2) by a medical subspecialist or surgical specialist in coordination with the child’s primary care physician, (3) under the direction of the primary care or specialty physician in the patient’s home or in another setting (eg, inpatient hospitalization), (4) via telehealth technology, (5) as part of school-based services, or (6) in a hospice or concurrent care model. These services are directed toward diagnosis, appropriate treatment, rehabilitation, or palliative care of diseases and congenital or acquired health conditions. Appropriate payment for these services is necessary to encourage the development of an adequate supply of professional resources and to ensure that all children have necessary access.

During the SARS-CoV-2 pandemic, many health care providers rapidly adopted telehealth technologies (video, digital, and telephone) that allowed safe provision of timely services across many permutations of physical locations. Providers and patients/families have generally reported a high degree of satisfaction with these encounters, and public and private insurers temporarily changed policies to allow or to increase payment for these services. Regardless of the future trajectory of SARS-CoV-2 and other infectious diseases, telehealth has secured a permanent role in the overall pediatric care delivery system. Although telehealth is not appropriate for all encounters, it is critical in this new environment that payers permanently recognize appropriate telehealth as an important tool that can improve the function of a patient-centered medical home and that they provide payment for these services sufficient to sustain high-quality care.

Physician and health care provider services include:

• Diagnosis and treatment of medical conditions.

• Educational counseling and support services for all children (see also preventive services above).

• Transition to adult medical care services for adolescents and young adults.

• Palliative and hospice care for children with serious or life-threatening conditions.

• Pediatric medical subspecialty services, including team subspecialty care (eg, dietary counseling and disease-specific nursing education), family planning, and reproductive health and pregnancy-related services.

• Pediatric surgical care, including:

  1. Pediatric surgical care and surgical specialty services, including comprehensive repair of congenital anatomic malformations; and

• Anesthesia and sedation by clinicians with training and expertise in special considerations of pediatric anesthesia care (pediatric anesthesiologists, neonatologists, pediatric critical care physicians, pediatric emergency medicine physicians, pediatric radiologists, and pediatric hospitalists) and acute and chronic pain management in the inpatient and outpatient settings by appropriately qualified physicians.

Behavioral and mental health services, including:

1. General services, including (a) assessment of social determinants of health, social-emotional health, and caregiver depression; (b) diagnostic evaluation and care planning and coordination services; (c) age- or developmentally appropriate counseling interventions, including individual, group, or family therapy; family-child interaction training; behavioral therapy training; and cognitive behavioral therapy as appropriate; (d) effective interventions for specific conditions, such as applied behavioral analysis for autism spectrum disorders; (e) psychoeducational testing; (f) behavioral and mental health integration in primary care settings; (g) crisis management; (h) inpatient and day treatment; and (i) residential care. These services should be covered for behavioral and mental health problems that occur in childhood, impair child or family function, threaten the future health of the child, or impair social relationships and/or academic success. At the current time, many areas of the country have insufficient numbers of providers with specific training in mental and behavioral health to meet the needs of children. The disparity between resources and need has expanded secondary to the many consequences of the SARS-CoV-2 pandemic. Pediatricians who choose to integrate vital core services in mental and behavioral health into the medical home should be paid for their services and not arbitrarily excluded through contractual carve-outs.

Services for substance use and substance-related disorders including (a) screening, early intervention, and crisis management; (b) appropriate treatment interventions; (c) inpatient and outpatient treatment; and (d) residential care.

Comprehensive medical and psychological evaluation, treatment, and care coordination for suspected or substantiated child physical, sexual, and psychological maltreatment in both inpatient and outpatient settings.

Individual and family grief and bereavement counseling.

Prenatal and neonatal services, including:

1. Prenatal genetic counseling and related services, as indicated.

Prenatal case management, including consultation with a pediatrician or other appropriate pediatric specialist(s).

Care in response to complications resulting from problems during pregnancy, labor, or delivery.

Care of all newborn infants, including:

• attendance of a pediatric or neonatology trained provider for management of high-risk deliveries or where mandated by hospital regulations;

health supervision, including bilirubin screening, hearing screening, and pulse oximetry screening for cyanotic congenital heart diseases;

treatment of congenital anomalies and other medical and surgical conditions; and

neonatal intensive and critical care services.

Appropriate postnatal genetic testing of the neonate and parents as clinically indicated, if the testing is likely to clarify diagnosis and/or prognosis, influence the overall approach to care, or identify treatment(s) specific for a condition.

Physician-directed sharing of accurate pediatric medical information via the full range of telehealth care technologies for established and new patients related to pediatric care. This information may include responses to patient or family questions or may consist of outreach to specific patients relating information deemed important to their health, which may not merit the need for an office visit intervention. These communications should, in general, be compliant with regulations of the Health Insurance Portability and Accountability Act of 1996 (HIPAA [Pub L No. 104-191]), although adaptation during public health emergencies (as occurred during the SARS-CoV-2 pandemic) and other disasters may be required.

Home health care services including hospice services, where appropriate.

Coverage of medical home- or physician-based care coordination and/or case management services,^† including arrangement, coordination, sharing of information among care providers, and monitoring of health care and developmental services to meet the needs of a patient and his or her family.²² 

Gender-affirming care for transgender, gender nonconforming, and nonbinary individuals, including access to mental health services, and medical and surgical therapy as and when appropriate.²³ 

These services address acute health care needs, ongoing illness, health or developmental conditions, or injury.

• Urgent or emergency medical and trauma services specifically for children. These services should be covered without regard to preferred provider networks or preferred facility designations if facility selection is involuntary.

• Inpatient hospital and critical care services, including labor and delivery or birth center services; observation care, acute care, and chronic care hospitalizations; psychiatric care, including intensive treatment of eating disorders; rehabilitation treatment; hospice and palliative care; and treatment of substance use and substance-related disorders. Each payer should include at least 1 children’s hospital with a full roster of specialty providers and services in its network of facilities.

• Intermediate or skilled nursing facility care in residential or rehabilitation and habilitative settings.

• Services delivered by telehealth for emergency departments or inpatient facilities that do not have pediatric coverage for critically ill children.

• Emergency and nonemergency transfer and transport to a hospital or health facility, between health facilities, and between home and health facilities when indicated.

These include specialty services performed in the health care provider’s office or delivered in the patient’s home or a health care facility as well as products needed for maintenance of health or treatment of disease.

• Coverage for medications, biologics, or other compounds included in the United States Pharmacopeia with evidence of safety and effectiveness for the treatment or prevention of specific conditions. This includes coverage of the many medications, biologics, and other compounds that are by necessity used in children “off-label” (that is, without an approved indication by the United States Food and Drug Administration for the condition or the age of the child).²⁴  Off-label usage may occur by extrapolation of adult label information or may be supported for nonlabel indications by the evidence-based literature or expert consensus. Drug formulations, insofar as possible, should be optimized for the development stage of the child. Guidelines for approval of orphan drugs that are proven to be effective in rare pediatric diseases should be standardized across plans and states.

• Pediatric oral health services, including:

  1. Restorative pediatric dental care including oral surgery with appropriate sedation or anesthesia as needed to correct dental or oral health problems; and

• Orthodontic services and appliances to correct problems with tooth and jaw alignment that contribute to other medical conditions.

• Vision services, including corrective lenses, surgery, or other treatments by professionals trained in the care of children, and access to pediatric ophthalmologists for treatment of medical conditions of the eye.

• Corrective audiology and speech therapy services, delivered by those trained in the care of children. These services include assistive technology (hearing aids, cochlear implants, etc, as appropriate) and speech therapy services for children with speech and language delay, dysarthrias, disfluencies, and feeding disorders.

• Nutritional evaluation and counseling services by pediatricians, registered dietitians, nutritionists, and other therapists for pediatric overweight and obesity, for eating disorders (anorexia and bulimia), and for specific health conditions or nutritional deficiencies.

• Donor milk and human-based milk fortifiers as appropriate for infants in the hospital and after discharge; over-the-counter vitamins and vitamin D as recommended by AAP.

• Special diets, specialty infant formulas, nutritional supplements, and delivery (feeding) devices for nutritional support and disease-specific metabolic needs.

• Physical, occupational, speech (including speech generating devices), and respiratory therapy for rehabilitation and habilitation provided in medical centers, private and public-sector offices, residential settings, the home, and schools (if not covered by the school district).

• Home-based health care services, including but not limited to physician supervision of care, therapies, private-duty nursing, and home health aides.

• Rehabilitative and habilitative services and devices.

• Rental, purchase, maintenance, and service of durable medical equipment and other devices, including but not limited to:

  1. Equipment necessary to administer and monitor the effects of aerosolized medications (nebulizer, spacers for inhalers, and peak flow meters);

• Glucometers, insulin pumps, continuous glucose monitoring systems, and enteral nutrition pumps;

• Breast pumps and accessories;

• Prostheses or braces and wheelchairs (as are appropriate for size and developmental stage), lifts, and other mobility aids;

• Ventilators, positive airway pressure devices, other pulmonary treatment and monitoring equipment and necessary DME to facilitate home care (eg, appropriate hospital-quality beds);

• Cardiorespiratory monitors, such as pulse oximeters or apnea monitors;

• Home dialysis equipment;

• Automated ambulatory blood pressure monitors; and

• Equipment for home-based treatment of newborn jaundice.

• Disposable medical supplies, including but not limited to:

  1. Diapers and supplies for patients with development or other disabilities that cause incontinence;

• Urine catheters and ostomy supplies;

• Tracheostomy care needs including custom tracheostomies, suction catheters for managing pulmonary secretions, tracheostomy ties, and other tubing and/or mask needs;

• Tubing for delivering intravenous or enteral fluids; and

• Test strips (as specified by provider), lancets, syringes, needles, supplies for insulin pumps and continuous glucose monitoring systems, ketone sticks, and other supplies for diabetes mellitus.

• Respite services for caregivers of children with special health care needs.

• Interpreter services when deafness or limited English proficiency prevents clear communication during office, facility, or telehealth visits.

These include services that determine the risk, presence, severity, prognosis or cause of an illness or testing for diagnosing a specific illness, injury, or disability.

• Laboratory and pathology services.

• Diagnostic, assessment, and therapeutic services, such as radiology services appropriate for the age and medical condition of the child, including provision of age-appropriate sedation as needed.

• Standardized assessment and monitoring tools for identification, diagnosis, and monitoring of educational, developmental, behavioral, and mental health conditions.

All children, regardless of the state in which they reside, their family income, the child’s individual health care needs, or the child’s immigration or citizenship status, should have timely, affordable access to care based on a comprehensive federal standard of medical necessity specific to the needs of each individual child that allows medical professionals flexibility in prescribing health services appropriate to the evolving developmental status of that child.^18–20  This federal standard should include the core set of benefits and services outlined above and consider the specific, individual needs of each child. Such a federal standard would act as a floor for states and would reduce the variability in pediatric health care benefits. An example of a definition that is both broad and specific in scope is EPSDT. Such a definition will reset the trajectory for children insured by all payers to receive timely essential care. In the interim, providers should maintain constant vigilance that state Medicaid plans provide all mandated EPSDT services.

1. Medical necessity determinations should follow a federal standard using the definition outlined in the AAP policy statement “Considerations in the Determination of Medical Necessity in Children: Application to Contractual Language.”¹⁸  Currently, although there is a federal definition of medical necessity within the Medicaid program’s EPSDT benefit, there is much leeway for states and managed care organizations to interpret this definition. In addition, other sources of coverage for children may not include a standard for medical necessity. A strong federal standard that prioritizes the treating provider’s assessment of medical necessity appropriate for developmental function should be in place for all children, regardless of their health care coverage, to ensure that each child receives the set of services required for optimal development.

2. Policy makers should ensure that family financial responsibility in any health care plan does not limit the family’s ability to access the benefits outlined in this policy statement. The AAP advocates that premiums and additional out-of-pocket costs (deductibles, copayments, and coinsurance) should be affordable in relation to a family’s disposable (net) income to ensure that families are able to access the benefits for their children that will allow them to develop optimally. This appropriate affordability standard will also limit the variation in pediatric health care benefits described above.

3. Policy makers should ensure all children have timely access to the full range of age- and developmentally appropriate health care providers, including pediatric and perinatal specialists, subspecialists, and facilities, without administrative barriers and via the most appropriate method (eg, at a traditional office or facility, or via a telehealth visit to the medical home). Children require developmentally appropriate and timely care from in-network primary, specialty, subspecialty, and ancillary pediatric providers with the training and expertise to care for children, regardless of where they live, even when those providers are in another state or region. Adequate provider networks are essential to ensure that children have access to the full scope of benefits outlined in this policy statement.

4. As state and federal lawmakers consider the financial costs of policy interventions related to children’s health, they must take into account the unique nature of the return on investment in the health of children, understanding that the return on investment in an enlightened child health care policy will manifest over the long-term as children mature into adults. Research shows that having access to health care through affordable insurance makes children more likely to complete college and leads to higher earnings and improved adult health.^25–27 

5. Federal and state policy makers, Medicaid, CHIP and private insurance plans should take all appropriate steps to ensure access to pediatric EHBs consistent with the recommendations within this policy statement.

Mark L. Hudak, MD, FAAP

Mark L. Hudak, MD, FAAP, Chairperson (2014-2018) Jonathan Price, MD, FAAP, Chairperson (2018-2022) Suzanne K. Berman, MD, FAAP Mary L. Brandt, MD, FACS, FAAP Kenneth M. Carlson, MD, FAAP Mike Chen, MD, FAAP Alison A. Galbraith, MD, FAAP Angelo P. Giardino, MD, PhD, FAAP Lawrence D. Hammer, MD, FAAP Kimberly Heggen, MD, FAAP Stephen A. Pearlman, MD, MSHQS, FAAP Beena G. Sood, MD, MS, FAAP

Lou Terranova, MHA Teresa Salaway, MHA

AAP

American Academy of Pediatrics

ACA

Patient Protection and Affordable Care Act

AHP

association health plan

CHIP

Children’s Health Insurance Program

EHB

essential health benefit

EPSDT

Early and Periodic Screening, Diagnostic and Treatment