Financing Care for CYSHCN in the Next Decade: Reducing Burden, Advancing Equity, and Transforming Systems

Families of CYSHCN are responsible and directly provide care for their children with special needs in their own family settings. They face challenges in finding appropriate and knowledgeable provider care teams in addition to carrying the financial burden of the health care expenses needed by CYSHCN.²  All of these aspects of achieving care have been complicated by the coronavirus disease 2019 pandemic in ways that have yet to be fully understood.^3,4  Enrollment in insurance coverage, either public or private, is a necessary first step in accessing health care services. From 2016 to 2019, 49.4% of CYSHCN had employer-sponsored insurance, 38.9% had publicly funded coverage, 7.8% had dual private/public coverage, and 4.0% were uninsured (unpublished analyses conducted by the Maternal and Child Health Bureau, Health Resources and Services Administration. 2018–2019 National Survey of Children’s Health). Insurance coverage is adequate for only 63% of CYSHCN.⁵  Insurance adequacy under public coverage (eg, Medicaid) is the most reliably robust of all sources, given the requirement under the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit of coverage for all medically necessary services for enrollees under age 21.⁶  CYSHCN are disproportionately in or close to poverty compared with non-CYSHCN.⁵  Black, Indigenous, and Hispanic CYSHCN are more likely to be poor compared with White CYSHCN, as shown in Fig 1.

CYSHCN with household incomes >400% of the federal poverty level (FPL) have caregivers that report lower insurance adequacy (59.3%) than non-CYSHCN in the same income bracket (70.1%; Table 1). However, there is little to no gap in the adequacy of insurance for those with an income <100% of FPL (71.3% for CYSHCN vs 72.2% for non-CYSHCN) and those with an income of 100% to 199% of FPL (66.9% for CYSHCN vs 69.5% for non-CYSHCN). Many CYSHCN are covered by Medicaid or the Children’s Health Insurance Program (CHIP).⁷  For children enrolled in Medicaid and many children in CHIP programs at these income levels, full EPSDT benefits protect them from inadequate insurance coverage. For both private and public insurance options, state variation is also a contributing factor to benefit adequacy.^8,9 

Having insurance coverage is insufficient to ensure the adequacy of all needed services. Recent National Survey of Children’s Health (NSCH) data reveal that one-third of CYSHCN have parents or caregivers report that their child’s coverage is inadequate based on 1 or more of the following criteria: (1) whether their children’s insurance covers needed services, (2) whether insurance allows the child to see the needed providers, and (3) whether it reasonably covers costs.¹⁰ 

CYSHCN compared with non-CYSHCN at all household income levels have parents or caregivers who are much more likely to report problems paying medical bills and more likely to have reduced employment or to not change jobs because of the loss of health insurance or other employee benefits (Fig 2). At all income levels, avoidance of changing jobs was at least twice as high for CYSHCN parents than for non-CYSHCN (Fig 2). A decrease in public insurance coverage for CYSHCN occurred from 2016 to 2019 (Table 2) with concurrent increases in difficulty paying medical bills and avoiding changing jobs to keep health insurance.

CYSHCN often interact with numerous service sectors. For example, in health care systems, these children and youth may need primary care, multiple specialty providers, and prescriptions. They also may need non-health related services such as social services, educational, and home- and community-based services to be able to thrive.¹¹  Yet support for the coordination of care between health care providers and the integration of care between health care and other sectors is often highly fragmented and, as a result, costly, which adds to families’ burden of care.¹²  Primary care, the component of the health care system directly responsible for care coordination and integration, is inadequately financed. This crisis in financing is felt most directly by CYSHCN and adults with chronic illness.^13,14  The lack of these critical services is often worse during adolescence and through adulthood.¹⁵  During the pandemic, the lack of consistent and adequate funding for care coordination and successful telehealth services emerged as prominent challenges.^16–18 

State health officials are increasingly linking quality measures to alternative payment models that reward providers for delivering high-quality, cost-effective care.¹⁹  These initiatives are being tested in the public sector for Medicaid beneficiaries with chronic and complex conditions.^20,21  Those measures that are feasible to collect are often important to systems but not directly relevant to families. There is a need for measures that support family-identified outcomes and wellbeing.²² 

As articulated in the HRSA/MCHB Blueprint for Change, financing a system of services for CYSHCN should achieve several straightforward goals. The first goal addresses the care itself. Families should be able to have care that does not present a financial burden but is also continuously available. In addition, families should have sufficient choice of services and administrative burdens should be low.²³  Second, financing systems should be oriented to address racial inequities and social risks that impact health and wellbeing. These systems should provide resources and mechanisms to strengthen communities and support families. When possible, services should be embedded in communities so they will be culturally appropriate. Third, service models should reward the value provided to families and CYSHCN through new patient- and family-centered models of care that improve outcomes. These improved value-based models should also rejuvenate provider systems dedicated to the service of CYSHCN, whether they are primary care, community-based services, or integrators of care. Fourth, to be effective in achieving these goals, measurement systems will need to be revamped to integrate data and improve actionable feedback. Such measurement systems need to be flexible and improved continuously.

Achieving the vision for the financing of services requires broad collaboration among many parties, including public payors (Medicaid and CHIP) and private ones, including HRSA/MCHB and other agencies at the federal level and state programs, providers, and, most importantly, families, children, and youth, particularly those from diverse and underserved communities.

This article offers several broad recommendations regarding direct improvements to the financing of services for CYSHCN. It includes recommendations for ensuring insurance access, improving coverage for medical care, and adequately funding all services in health and non-health systems.

• 1. The financing of child health should be conceptualized as a long-term investment rather than a time-limited cost.

To fulfill the vision for the future, specific actions will be needed. Mechanisms for public and private insurance coverage of care for CYSHCN should be improved while concurrently investing in transformative system improvements. Federal investments to support state innovations in improved delivery models should set the direction for these efforts.

• 2. Mechanisms should be explored and developed at the federal level for states to optionally expand access to Medicaid for all CYSHCN. This expansion could be funded entirely or largely by the federal government and could include creating a reasonable, sliding scale, premium schedule for families at all income levels.

Mechanisms to ensure coverage adequacy now fall primarily on the public sector, with children often moving to the more comprehensive Medicaid EPSDT benefit. Among states, public sector coverage varies considerably on the basis of family income.²⁴  In addition, in states in which buy-in or waiver programs are available, CYSHCN must first receive disability designations to qualify for expanded benefits.^25,26 

• 3. Coverage decisions should be based on the medical evidence provided and evaluated by experts to help achieve improved health outcomes, greater value, and cost-effectiveness. Requirements for transparent availability of criteria for the coverage of services must be applied to state Medicaid and private payor programs. Processes for determining individual authorizations for medical necessity should be transparent, and these processes should be monitored across the system. Assistance to support and educate families by families with similar experiences in navigating coverage requests and appeals should be provided.

Coverage for medical care supported by clinical evidence, thus demonstrating medical necessity, is essential for the wellbeing of CYSHCN. Families, youth, and children can make informed choices when medical evidence is presented and options are available based on that evidence. Greater education of providers and patients and their families around coverage criteria and medical necessity determinations also is essential to decrease the burden on families. Transparency of insurer processes should encompass obtaining authorization, understanding decisions, and requesting reconsiderations through appeals.

• 4. Payors should adequately fund long-term services and supports (LTSS), and specifically home- and community-based services, which often are central to the well-being of CYSHCN, to ensure that all eligible children can receive adequate services to meet their care needs. Funding should address the need to develop and support the LTSS workforce.

Children who rely on LTSS must have adequate access to these services and supports to ensure their optimal development and allow them to thrive at home as desired by the individual and family. Barriers to these services include the extensive waiting lists for LTSS through home- and community-based service waivers throughout the country, and workforce shortages that negatively impact access to these critical services even for those who have coverage.²⁷ 

• 5. Public and private payors should adequately fund primary care, care coordination, and care integration to ensure services for all CYSHCN. Improved continuous service models, such as telehealth, should be supported with the aim of supporting models that improve coordination and integration, decrease family financial burden, and improve value to families and payors.

Integrated care delivery systems can improve the health and wellbeing of children and their families, and help avoid unnecessary medical, special education, and other costs.²⁸  During the coronavirus disease 2019 pandemic, new service models were developed to improve care and care planning for CYSHCN. Specifically, telehealth models can decrease family financial burden by reducing transportation costs for appointments, improving access for families that are not geographically close to primary and specialized services, and providing opportunities for more coordinated care.²⁹  With telehealth, care can transform from an episodic to a more continuous model.

Beyond the direct improvements to coverage noted in the first 5 recommendations, service systems should be further developed to achieve MCHB’s Blueprint for Change vision for the financing of services.

• 6. Care coordination and care integration systems should be adequately funded to develop, test, and evaluate models and support their spread. These models should support families in diverse communities as well as children and youth with diverse special needs across all age transitions.

The spread of care coordination in the health care system and integration between care systems requires adequate funding for the services that currently exist, as noted above. Concurrently, ongoing efforts will be needed to create and advance models that are truly integrated.

In 2019, Congress recognized this need for children with medical complexity who are covered by Medicaid and CHIP with the passage of the Advancing Care for Exceptional Kids Act.³⁰  The details of its implementation, including service models, measures, and payment models, have not yet been released.

Improved infrastructure to support integrated care coordination is needed to share resources and responsibilities in new ways. For example, financial structures should be developed to support integrated care planning and team-based communication among primary care providers, health care specialists, schools, and other service providers. In turn, funding mechanisms could support this blended work through cooperative agreements, service colocation, and care plans shared and integrated via electronic communication resources.

• 7. To address the unique needs of CYSHCN, financing systems that use value-based payment models that promote family-centered care, integration among physical health, behavioral health, and LTSS, and coordination within the intricate web of services spanning multiple sectors should be developed and implemented.

Value-based purchasing (VBP) models provide financial incentives to engage in care coordination, care integration, and population management activities that have the potential to improve health outcomes.^31–33  These models link quality measures to payment that rewards providers for delivering high-quality and cost-effective care. VBP includes a broad range of financial models, from rewards for improvement on isolated quality measures to full financial risk accountable care. VBP programs offer the opportunity to promote innovative care delivery that potentially can address many gaps in care for CYSHCN.

The Centers for Medicare & Medicaid Services developed the Center for Medicare & Medicaid Innovation Integrated Care for Kids model to reduce expenditures and improve the quality of care for children <21 years of age covered by Medicaid.³⁴  Integrated Care for Kids is the first pediatric health care delivery model to be funded by the Centers for Medicare & Medicaid Services Center for Medicare & Medicaid Innovation, which funded almost $126 million for 8 grantees within a 7-year model that began in 2020.³³ 

VBP requires the assessment of health and wellbeing outcomes for CYSHCN. Identifying and reporting on these outcomes can be difficult because of the heterogeneity of the CYSHCN population. Standardizing the assessment of outcomes must occur if they are to be fairly associated with financial rewards. In addition, measures that compensate providers via VBP can provide nuanced consideration of additional complexities related to social risk factors.^35,36 

• 8. Community-based solutions to cover services provided in communities and the development of service infrastructure by the communities themselves should be adequately funded. Communities developing their own system and processes can address equity, holistically support CYSHCN and their families, and add value to the health care system by engaging communities continuously in health system planning, implementation, and evaluation.

CYSHCN and their families may have social and economic needs that require resources and support from the community. Community participation as programs are being developed creates services more likely to successfully integrate social and medical needs. In some communities, this redesign could be seen as integrating health care systems into existing support programs. In other communities, programs could be initiated by the health care sector. For example, screening and the provision of services to address food insecurity could be initiated in the health care system, or screening could be integrated with resources from an existing program outside of that sector.

Supporting the development of a community-based workforce also is an essential component of this transformation. As addressed above in recommendation 4, adequate funding is needed to develop an LTSS workforce; in addition, workforce shortages constitute a barrier to CYSHCN accessing critical services.

• 9. Research organizations, federal agencies, and payors in collaboration with families, providers, and communities should develop accurate and reliable measures to enable effective monitoring and evaluation of system-level financial innovations. Measures of health care use, processes, and outcomes must be evaluated and improved.

• 10. Federal agencies should consider aligning measures already in production or in development across federal programs.

Measurement systems and specific indicators must provide value to families, children and youth, communities, and the health care systems that finance care. The proposed system innovations linking payment models to quality have the potential to build financial models that improve health and social outcomes for CYSHCN and their families. Measures should be linked to understanding the relationship of the cost of services to the quality of life, including the effectiveness of efforts to address social risk factors and racism. To achieve this goal, improved measurement is essential. Measurement includes developing and standardizing how to report utilization and quality measures across programs and systems. State and regional care systems, Title V programs, and Medicaid (both managed care and fee for service) require measurement that can be used to improve quality and analyze variation between insurers and jurisdictions.

Measurement must expand to encompass a broader understanding of health and wellbeing. Families, communities, and providers need these measures to reflect the “lived experience” outcomes important to families and CYSHCN.³⁷ 

• 11. Payors, quality improvement programs, and other agencies should develop and fund timely and data-driven feedback as an essential part of quality improvement processes.

Results from health care and social service programs focusing on both child and family outcomes and system financial impacts must be shared with providers, communities, and funders in a timely manner to support quality improvement cycles.

A successful measurement system must link data across programs in federal, state, and local agencies to support local quality improvement and track system progress. States, with the assistance of federal partners, must establish the legal framework and required agreements, templates for data sharing, and technical infrastructure to implement the linked model.³⁸ 

The financing recommendations in this paper represent policy opportunities to improve outcomes for CYSHCN. Specific financing opportunities for system transformation should be developed primarily at the policy level to improve practice and, hence, the wellbeing and quality of life for CYSHCN. In addition, some recommendations call for investments at the community level that traditionally have not been considered a priority.

Implementing these approaches will require a coordinated approach among federal agencies, state agencies (eg, public health, Medicaid, mental health, education), the provider community, diverse racial and ethnic communities, and families and CYSHCN. Importantly, for efforts to be transformative, they will need to be financially sustained and iteratively improved at both the practice and policy levels. Research embedded into these transformative financial processes has the potential to support and enhance implementation.

The vision of the Blueprint for Change, supported by the financial opportunities outlined here, provides a path to the transformation of services for CYSHCN. The intended result will be improved wellbeing and quality of life for CYSHCN and their families, reductions in disparities, equity in the health care system, and increased value for those investing financially in CYSHCN.

The authors would like to acknowledge Drs. Reem Ghandour and Mary Kay Kenney for conducting and providing analyses of the NSCH data included in this manuscript.

CHIP

Children’s Health Insurance Program

CYSHCN

children and youth with special health care needs

EPSDT

Early and Periodic Screening, Diagnostic and Treatment

FPL

federal poverty level

HRSA

Health Resources and Services Administration

LTSS

long-term services and supports

MCHB

Maternal and Child Health Bureau

NSCH

National Survey of Children’s Health

VBP

value-based purchasing