American Academy of Pediatrics Issues Public Comment on Centers for Medicare & Medicaid Services Proposed Rule

WASHINGTON, June 10 -- Sara Goza, president of the American Academy of Pediatrics, Itasca, Illinois, has issued a public comment on the Centers for Medicare and Medicaid Services proposed rule entitled "Coordinating Care from Out-of-State Providers for Medicaid Eligible Children with Medically Complex Conditions". The comment was written on June 3, 2020, and posted on June 4, 2020:

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On behalf of the American Academy of Pediatrics (AAP), a non-profit professional organization of more than 67,000 primary care pediatricians, pediatric medical subspecialists, and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents, and young adults, I write in response to the Request for Information (RFI) from the Centers for Medicare & Medicaid Services (CMS) regarding the coordination of care from out-of-state providers for Medicaid-eligible children with medically complex conditions.

Children make up the single largest group of people who rely on Medicaid; more than 35 million children rely on Medicaid coverage, including children with special health care needs and those from low-income families. Medicaid also provides comprehensive prenatal care to pregnant women, enabling millions of pregnant women to have healthy pregnancies and thereby helping millions of children get a healthy start. Unlike many private health insurance plans, Medicaid guarantees specific benefits designed especially for children. Medicaid's Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefits are the definitive standard of pediatric care, covering an array of services like developmental, dental, vision and hearing screenings, and allowing health problems to be diagnosed and treated appropriately and as early as possible. Children enrolled in Medicaid are more likely to get medical check-ups, attend more days at school, graduate and enter the workforce than their uninsured peers.

Medicaid provides broad coverage to eligible children, yet barriers remain that prevent some children from accessing the care that they critically need. This is especially true for children with medically complex conditions that may require specialized diagnostic or treatment services that are not readily available from providers in their state. Families seeking care may have to travel hours in order to find a qualified specialist. Referring clinicians struggle to get the necessary prior authorization to allow their patients to seek care across state lines. Specialty clinicians on the receiving end of the out-of-state referral face difficulty receiving payment for their services rendered. Overall, the process is cumbersome for patients, families, and providers, contributing to delays in care.

As part of the RFI, CMS states the desire to identify best practices for using out-of-state providers to provide care to children with medically complex conditions, to determine how care is coordinated for such children when that care is provided by out-of-state providers, and to reduce barriers that prevent such children from receiving care from out-of-state providers in a timely fashion.

This comment letter synthesizes input from expert pediatricians and pediatric medical and surgical subspecialists with deep experience caring for children with complex medical needs. The following challenges, experiences, and recommendations reflect input from the AAP's leaders including the Council on Children with Disabilities, Section on Hospice and Palliative Medicine, Section on Telehealth Care, Section on Home Care, in addition to an array of pediatric subspecialty groups.

The Academy's Principles of Child Health Financing outline a vision for a comprehensive health care system for children./1

The principles include coverage goals that would enable the successful coordination of care for children with medical complexity:

* All children, adolescents, and young adults from birth to the age of 26 years who reside within our borders, regardless of income, family composition, or immigration status, should be covered by an affordable, quality health insurance plan that allows access to comprehensive essential care.

* Accessible health insurance coverage should pose minimal enrollment and renewal burdens, commence with the minimal waiting period needed to verify eligibility, offer continuous eligibility for a minimum of 12 months, and be portable across states.

* Insurance coverage options should ensure access to an adequate pediatric primary, specialty, and subspecialty network that includes dental, behavioral, and mental health services.

* Essential coverage also enables care coordination and care management by pediatric primary and specialty medical homes to ensure excellent outpatient management of children with chronic and complex conditions and to ensure linkages to age-appropriate public, community, and employer-based programs.

* Ensuring access to health insurance and providing timely access to and payment for necessary health care services for children should be a shared responsibility of parents and/or families, employers, and state and federal government agencies.

The AAP envisions patient- and family-centered care coordination for all children, relying on the medical home as a foundation for an effective and efficient system of care delivery./2

To ensure optimal outcomes for children and youth, especially those with complex medical needs, coordination is required among multiple care systems and individuals. Such coordination must take into consideration the continuum of health, education, early child care, early intervention, nutrition, mental/behavioral/emotional health, community partnerships, and social services (as well as payment for these services) needed to improve the quality of care for all children and youth including those with special health care needs, while acknowledging the importance of language and culture in achieving desired outcomes./3

Coordination of care across settings allows the comprehensive and holistic needs of the child and family to come first. Care coordination goes beyond case management to connect plans of care from various subspecialists, navigate insurance coverage for services, prescriptions, and medical equipment, and foster linkages to community-based services.

The COVID-19 pandemic has reinforced the need for a holistic approach to care for children with complex medical needs. We are only beginning to understand the extent of the incidence, prevalence, and serious outcomes associated with COVID-19, and the ways in which it impacts and transmits through children. New research suggests that children with medical complexity are particularly at risk of contracting the virus compared other children. According to one study of cross-sectional study of North American pediatric intensive care units between March 14 and April 3, 2020, comorbidities were prevalent in more than 80% of the infants and children hospitalized with serious illness from COVID-19. The most common comorbidity was medical complexity, defined as children who had a long-term dependence on technological support (including tracheostomy) associated with developmental delay and/or genetic anomalies./4

As hospitals across the country adapted to the changing needs of the pandemic, many children received care from children's hospitals serving as regional hubs rather than their local pediatric units in community hospitals, allowing community hospitals to further prepare for adult COVID-19 patients and ensuring children could obtain safe and appropriate care. These arrangements highlighted the need for clearer and more effective policies to enable coordination of care for children enrolled in Medicaid children receiving care across state lines; the pandemic has not slowed to account for bureaucratic hurdles.

The current public health and economic crises threaten the stability of the health care system for children. As more families lose jobs and experience financial stress during the economic downturn, Medicaid will act as an essential lifeline for children and families. As they meet the requirements of the pandemic, states are experiencing simultaneous tax shortfalls and increased volumes of social services and public programs like unemployment insurance, Medicaid, and nutrition assistance. Together with the need to balance budgets, these constraints leave states with few options but to impose limits in their Medicaid programs. This reality makes it even more urgent for CMS to identify a national strategy to improve access and coordination of care for children enrolled in Medicaid, especially for those with medical complexity.

Our members identified several barriers that stand in the way of achieving the Academy's Principles of Child Health Financing, especially as it relates to the coordination of care for medically complex children enrolled in Medicaid who need care across state lines or out of network within their Medicaid managed care plan. The experiences of our members, in addition to specific recommendations CMS can take to mitigate these barriers, are outlined below and broken into the following categories:

1. Access to Care and Network Adequacy

2. Adequate Payment

3. Administrative Burden

4. Improvements to Pediatric Telehealth Care

5. Children with End Stage Renal Disease (ESRD)

Access to Care and Network Adequacy

Oftentimes, the pediatric specialists and other specialized services required to treat the unique needs of a child are not located in a child's home state. In fact, the care a child requires for their very specialized condition-- which may only affect a small number of children--is often only available in one or two locations in the entire country. A recent Medicaid and CHIP Payment and Access Commission (MACPAC) report finds that, "Children who qualify for Medicaid on the basis of a disability have a higher share of out-of-state inpatient hospital stays than other eligibility groups. These children are also more likely to access care outside of the hospital-referral region where they reside."/5

CMS is specifically requesting comments on how to reduce barriers that prevent medically complex children with Medicaid from receiving care from out-of-state providers in a timely fashion. Our members identified many such barriers pertaining to the topics of equal access, adequate networks, and the sufficiency of the pediatric workforce. These existing barriers, in addition to suggestions on how to mitigate them, are outlined in more detail below:

Geographic Proximity

When asked what key priorities are considered when referring a medically complex patient for out-of-network or out-of-state care, our members repeatedly identified geographical proximity as a major factor. In some instances, a family that lives on the border between two states would have a much shorter drive to a facility located out of state than an in-state clinician or facility located 100 or more miles away. Lack of reliable transportation and direct costs such as lodging and food, and ancillary costs such as childcare (if the family has more than one child) and missed work, lack of resources may make it difficult to travel to a distant care provider within a state.

While Medicaid may cover some transportation services, that transportation only covers the patient and the parent, not additional children or family members. Additionally, CMS has recently approved state 1115 waivers that allow states to eliminate Medicaid's non-emergency medical transportation (NEMT) benefit, creating a more pressing barrier for children with medical complexity without adequate access to transportation services to travel to and from their medical appointments. Consequently, pediatricians may be more inclined to refer to the out of network/state providers if it would cut down on travel time for the family, thereby decreasing cost of transportation, fewer missed work hours for the parent/caregiver, and less school time missed for the child.

Children do not choose where to reside, and their living situation might change throughout the year. They may live with parents, stepparents, grandparents, with other caregivers or in foster care. They may split their year between several residences, or they may be homeless. These situations where children have a current address that is different from their primary address may increase the need for pediatricians to refer out-of-state.

Recommendation: Dedicate federal funding to states to expand these services (lodging, food, transportation) to improve access to care.

Recommendation: Direct states to prioritize children's and families' needs, including through referrals to out-of-state and out-of-network care, especially when the out of state option is significantly closer and/or more clinically appropriate.

Ensuring Timely Access to Appropriate Quality and Expertise

Complex patients may require services at a larger center that has clinicians with unique expertise or more specialized medical equipment. When deciding whether to refer a child with medically complexity to an out-of-network or out-of-state provider, our members are constantly assessing which location will lead to the highest quality of care. Considerations include the following:

Does the generalist(s) or specialist(s) network contain physicians who have pediatric expertise? Are they able to diagnose and treat the condition?

Children are not little adults; they require services and care specifically suited to their unique development and growth needs. Because of their continuous growth and development, children need a full set of pediatric and age-appropriate services. Missed screenings, diagnoses, and treatments can result in life-long health consequences that generate extensive and avoidable costs.

Certain plans may consider access to adult specialty or subspecialty care as meeting a network adequacy standard, when in fact adult care may not be appropriate for children. Research continues to demonstrate the positive outcomes and quality impacts of care provided by pediatric medical subspecialists and surgical specialists, versus adult specialists and subspecialists for the pediatric population./6

Factors such as lower complication rates, shorter lengths of stay, and better outcomes for disease-specific conditions highlight the need for unfettered access to pediatric specialists and subspecialists.

Additionally, in many areas of the country access to pediatric specialty or subspecialty care might require services that should only be provided by pediatric subspecialists or a children's hospital in another state, such as for surgery to correct a pediatric heart condition, retinopathy of prematurity screening, neonatology consultations, dermatologic assessment, or critical care medicine. Furthermore, medical complexity in children consists of a lot of individually rare conditions, meaning it may sometimes be difficult to find a pediatric specialist with the necessary expertise. For example, one of our members reported the need to send a hospitalized child from Buffalo to Philadelphia because the specific procedure, embolization of a pulmonary lymphatic malformation, was only available in Philadelphia. That child is alive today, and back living in Buffalo, because they were able to receive care in Philadelphia.

Is the clinician or practice accepting new patients with the child's insurance plan(s)?

Accepting insurance is necessary but not sufficient. The practice must also be accepting new patients with that specific insurance plan. If a primary care pediatrician is forced to choose between an 18-24 month wait to see a developmental specialist in state, but no wait time when referring out of state, they'll likely choose to refer out of state to ensure promptness of care.

Does the provider already have a network of supplemental services needed to assist delivering the service?

Sometimes a health insurance carrier may require that a child whose "network" is based out of one hospital system needs to see a specialist in another hospital system. Problems can arise if a child needs specialized services but pediatric expertise, appropriate medical equipment, or both are unavailable through a single in-network hospital or practice. For example, a child's medical needs may require imaging studies using equipment only available from a hospital where neither the technologist performing the study nor the radiologist reading the study has pediatric training. Access to a reputable, well-trained pediatric specialist with significant experience is less valuable when there is not the necessary pediatric medical equipment needed to provide vital care.

Additionally, larger children's hospitals with dedicated staff to help coordinate care, such as social workers, care coordinators, Medicaid service coordinators, nursing agencies, and therapists may be better suited to take on children with medical complexities. In many instances, those institutions might be out of state from where the child and family currently reside. A child- and family-centered approach would require that Medicaid programs allow children to receive this full suite of services in a coordinated way, even if some of the services may be available individually in the child's home state or in-network.

Recommendation: Require health plans to ensure that children have appropriate access to all pediatric primary, specialty, and subspecialty care they need./7

CMS should require a minimum standard for network adequacy, in whatever format utilized, which plans must meet and which states may additionally build upon.

Recommendation: Withdraw CMS's proposed rescission of the Medicaid Access Rule,/8 and instead work with expert stakeholders to improve the current rule to strengthen access monitoring and ensure equal access for Medicaid beneficiaries.

Adequate Payment

Payment can be a significant driver of physician participation in the Medicaid program and, as a result, in how easily children enrolled in Medicaid can establish care within a medical home. A well-implemented and adequately funded medical home not only is not only the best approach to optimize the health of the individual patient, but also can function as the most effective instrument for improving population health. For children with complex medical needs to receive accessible, continuous, comprehensive, and coordinated care from the medical home, payment for services must be timely and adequate./9

Medicaid fee schedules and capitated payments to primary care and subspecialty physicians are significantly lower than payments for comparable services from Medicare and private insurance companies. Low Medicaid payment rates, delayed or unpredictable payments, and confusing or burdensome payment policies and paperwork are primary reasons that physicians limit participation in the program, leaving patients facing barriers to access for primary care and subspecialty health care services./10

Even at academic medical centers that serve as "safety nets" for uninsured or underinsured patients, reduced access for children enrolled in Medicaid may manifest as significantly longer wait times for subspecialty care./11

Raising Medicaid payment rates to adequate levels, reducing administrative burden to enroll and participate in Medicaid programs, and increasing certainty of payment can increase physician and hospital capacity and improve access for children enrolled in Medicaid./12

A recent study demonstrated that the short-term increase in Medicaid payments for primary care services in 2013-14 resulted in greater physician participation in the Medicaid program./13

Many pediatric practices, institutions, and organizations have encountered barriers to appropriate payment for care and corresponding barriers to access care for their patients. These barriers exist irrespective of geography, political leadership or will. Not surprisingly, barriers related to Medicaid payment are exacerbated further for pediatricians when dealing with children with medical complexity.

As the RFI points out, federal regulations at Sec. 431.52(b)(3) require that, if a state Medicaid agency, on the basis of medical advice, determines that needed medical services or necessary supplementary resources for a beneficiary resident in the state are "more readily available" in another state, the state must pay for services furnished in the other state to the same extent that it would pay for services furnished within its boundaries. However, our members report difficulty in enrolling in and recouping payment from out-of-state Medicaid programs. For physicians providing care to a child enrolled in Medicaid outside that child's home state, they must enroll in that state's Medicaid program and, in many cases, subsequently become credentialed with the managed care organization responsible for the child's coverage. These processes are administratively burdensome and can result in significantly delayed payments. For example, it can take anywhere from 60-270 days just to apply for and receive a Medicaid ID number from an out-of-state agency. Some of our members have reported refusal from states and plans to pay them altogether. Even if our members are successful in being paid for their services rendered, payment rates greatly vary across states.

In total, the administrative burden and cost associated with attempting to recoup adequate payment for services rendered, coupled with extreme variations between state policies, make it difficult for our members to ensure children can receive timely care. This impedes the ability of our members and other clinicians to accept more Medicaid patients, particularly among small practices, and threatens the viability of practices serving areas with a higher proportion of patients enrolled in Medicaid coverage.

Additionally, pediatricians are facing severe financial challenges and confronting drastic choices in light of the COVID-19 pandemic. Practice managers around the country report that their case loads are as low as 20-30 percent of their practices' typical caseloads due to social distancing, shelter-in-place, and families delaying or forgoing care. At the same time, pediatricians are facing higher costs including personal protective equipment and workforce training as they transform their practice to meet the needs of their patients and families. The dramatic drop in revenue compounded with higher costs is forcing practices to confront furloughs and layoffs, cancel vaccine orders, and in many cases, consider permanent closure. In addition, the rising numbers of individuals facing unemployment and losing employer-sponsored insurance means that more children and families are likely to enroll in Medicaid in the coming months. For practices that can survive the financial challenges of the COVID-19 pandemic, low payment and high administrative burdens may pose insurmountable barriers to accepting more Medicaid patients into their panels. This could subsequently lead to delays in accessing timely care and other challenges for children and families.

The Academy recommends the following recommendations to address payment barriers to coordinating care:

Recommendation: Ensure that payment to out-of-state providers is adequate to ensure children's access to care. When payment rates differ among the child's home state and the state where care is received, we recommend that the accountable Medicaid program use the higher payment rate to account for differences in regional costs and to ensure specialty care is available.

Recommendation: Implement policies and procedures to ensure equitable and prompt payment to providers and facilities for pediatric services rendered to Medicaid patients outside their home state or outside of their managed care organization's network.

Recommendation: CMS should strongly encourage states to streamline their enrollment and screening requirements for out-of-state Medicaid providers. Several states already accept the home state enrollment of the provider and/or providers' Medicaid enrollment. If more states used this approach, it would cut back significantly on the administrative burden on providers and result in more timely care for children.

Recommendation: Establish adequate payment to a practice or facility that coordinates care of infants and children with complicated physical and/or mental health illnesses (eg. pay for care coordinators, social workers, extended office hours, home visitations, dental care, durable medical equipment, etc.).

Recommendation: Develop a template for a single case agreement and encourage state/health plan use.

Recommendation: Direct states to provide full payment for trained interpreter services for children and families with limited English proficiency. This will assist in thorough and accurate communication between physician and patient, increased accuracy of diagnosis and more appropriate treatment plan, and increased patient and family understanding of and adherence to treatment, thus avoiding adverse clinical consequences.

Recommendation: Provide emergency financial support to Medicaid providers during the COVID-19 emergency. Clinicians, hospitals, and other providers that care for large numbers of Medicaid patients are under severe financial strain that is threatening their continued viability. To maintain an adequate safety net for the most vulnerable populations, HHS must allocate to pediatricians and other Medicaid providers emergency financial support commensurate to their financial losses.

The AAP appreciates this opportunity to submit comments on this RFI. If you have any questions, please do not hesitate to contact Stephanie Glier in our Washington, D.C. office at 202-347-8600 or [email protected].

Sincerely,

Sara Goza, MD, FAAP

President

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Footnotes:

1/ Mark L. Hudak, Mark E. Helm, Patience H. White, COMMITTEE ON CHILD HEALTH FINANCING Pediatrics Sep 2017, 140 (3) e20172098; DOI: 10.1542/peds.2017-2098: https://pediatrics.aappublications.org/content/140/3/e20172098

2/ https://pediatrics.aappublications.org/content/133/5/e1451

3/ Turchi RM, Mann M. Building a medical home for children and youth with special health care needs. In: Hollar D, ed. Handbook of Children With Special Health Care Needs. New York, NY: Springer-Verlag; 2013:399-418

4/ Shekerdemian, Lara S., and Nabihah Mahmood. "Outcomes of Children With COVID-19 Admitted to US and Canadian Pediatric Intensive Care Units." JAMA Pediatrics, 11 May 2020, jamanetwork.com/journals/jamapediatrics/fullarticle/2766037.

5/ Medicaid Payment Policy for Out-of-State Hospital Services, MACPAC, January 2020, page 2. https://www.macpac.gov/wp-content/uploads/2020/01/Medicaid-Payment-Policy-for-Out-of-State-Hospital-Services.pdf

6/ https://www.aap.org/en-us/advocacy-and-policy/state-advocacy/Documents/PediatricVAdultSubspecCare.pdf

7/ Full AAP comments on CMS' proposed changes to the Medicaid Managed Care Rule can be found here: https://downloads.aap.org/DOFA/AAPMCO'19.pdf

8/ Full AAP comments on CMS' proposed rescission of the Medicaid Access rule can be found here: https://downloads.aap.org/DOFA/Final--%20AAP%20Access%20Rule%20Comments%20(Rescission).pdf

9/ Principles of Financing the Medical Home for Children. Jonathan Price, Mary L. Brandt, Mark L. Hudak, COMMITTEE ON CHILD HEALTH FINANCING. Pediatrics Jan 2020, 145 (1) e20193451; DOI: 10.1542/peds.2019-3451: https://pediatrics.aappublications.org/content/145/1/e20193451

10/ AAP Survey of Pediatrician Participation in Medicaid, CHIP and VFC. Elk Grove Village, IL: American Academy of Pediatrics; 2012

11/ Bisgaier J, Polsky D, Rhodes KV. Academic medical centers and equity in specialty care access for children. Arch Pediatr Adolesc Med. 2012;166(4):304-310pmid:22147760

12/ Medicaid Policy Statement, COMMITTEE ON CHILD HEALTH FINANCING, Pediatrics May 2013, 131 (5) e1697-e1706; DOI: 10.1542/peds.2013-0419

13/ Tang, S.S., Hudak, M.L., Cooley, D.M., Shenkin, B.N., & Racine, A. D. (2017). Increased Medicaid Payment and Participation by Office-Based Primary Care Pediatricians. Pediatrics, 141(1). doi:10.1542/peds.2017-2570

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The proposed rule can be viewed at: https://www.regulations.gov/document?D=CMS-2020-0006-0001

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