The Value of Engaged Caregivers in Improving Outcomes for Children with Special Health Care Needs

The Value of Engaged Caregivers in Improving Outcomes for Children with Special Health Care Needs

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Executive Summary

Children with special health care needs (CSHCN) represent a significant population requiring comprehensive, coordinated care to achieve optimal health outcomes. This position statement outlines the critical role of engaged caregivers as part of the healthcare workforce and essential to improving health outcomes, expanding access to care, and reducing overall healthcare costs for CSHCN.

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Background

Nearly 14.5 million children in the United States have special health care needs, and these children account for 50% of pediatric healthcare spending.¹  

These children face a fragmented, uncoordinated system of care that creates significant challenges, including:

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• Complex Care Coordination: Children require management across multiple specialists and providers, yet 21.8% of families with Medicaid-covered CSHCN report needing extra help coordinating care. Among these families, 23.1% never receive the assistance they need.²

• Access Barriers: While these children require consistent medical care and specialized equipment:  

                         - Only 78.1% have a consistent healthcare provider

                         - 36.9% report emergency department visits (compared to 20.9% with private insurance)

                         - 17.6% cannot access needed mental health treatment

                         - 10.5% experience difficulties obtaining necessary referrals

                         - 35.9% report problems getting appointments²

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• Integration Challenges: Children require coordinated medical and behavioral health care, along with support for social determinants of health (SDOH), yet more than one-third of families report barriers to accessing these integrated services.²

This fragmentation results in measurable impacts on both health outcomes and family well-being, with 35.9% of Medicaid-covered CSHCN families reporting cost-related barriers to receiving needed services.²  

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This fragmentation in care delivery results in suboptimal outcomes, increased healthcare utilization, and significant emotional, mental, and financial burden on caregivers who must coordinate complex daily care needs across multiple providers and systems.³

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‍Evidence Supporting Caregiver Engagement

In pediatrics, a growing body of research demonstrates the significant impact of engaged, educated, and supported caregivers on health outcomes and healthcare costs for children with special health care needs. Literature shows that family-centered care approaches are associated with improved adherence to treatment plans, better care coordination, and reduced healthcare utilization.⁴ The evidence consistently demonstrates that when caregivers are properly supported and engaged, both outcomes and costs improve across age groups and conditions.⁵  

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Evidence-Based Policy Impact

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CMS Innovation Center Demonstrations

The Center for Medicare and Medicaid Innovation (CMMI) has launched several initiatives that demonstrate the value of family-centered care models and caregiver engagement:

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Integrated Care for Kids (InCK) Model

The InCK Model represents CMMI's comprehensive approach to pediatric care transformation.⁶ Key components include:

• Alternative payment models that support family-centered care coordination

• Integration of physical and behavioral health care with social services

• Emphasis on early identification and prevention

• Required family engagement at both the individual care and program governance levels

State Innovation Models (SIM) Initiative

The SIM Initiative has supported states in developing comprehensive healthcare transformation plans that include:

• Implementation of pediatric-focused alternative payment models

• Development of family navigation programs

• Integration of community health workers into care teams

• Creation of shared savings arrangements that incentivize family engagement

State Medicaid Innovation Programs

Several state Medicaid programs have pioneered successful family support initiatives:

• California's Health Homes for Children program demonstrated a 25% reduction in inpatient stays when implementing comprehensive family support services⁷

• Texas's STAR Kids program reported improved medication adherence and reduced emergency department utilization through family-centered care coordination⁸

• Wisconsin Medicaid created a targeted case management model for children with medical complexity, enabling sustainable care programs with high family satisfaction⁹

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These state initiatives have provided valuable evidence for scaling family-centered care models nationally.

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American Academy of Pediatrics Guidelines

The American Academy of Pediatrics (AAP) clinical report underscores the importance of a coordinated approach to home care for children with complex health care needs.¹⁰ The report emphasizes establishing a medical home, providing comprehensive caregiver training, and supporting families to optimize children's health and minimize hospitalizations through family-centered, interdisciplinary care.

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Real-World Innovation and Outcomes

Imagine Pediatrics is a tech-enabled medical group that delivers 24/7 virtual and in-home care to children with special health care needs. Through value-based Medicaid contracts, the multidisciplinary, pediatrician-led team works in partnership with providers, caregivers, community resources, and health plans to expand patient access to fully integrated medical, behavioral, and social care at home. This innovative model recognizes that engaged caregivers drive better outcomes, placing them at the heart of the care delivery system and equipping them with comprehensive wraparound services to support their children's complex health needs. Imagine Pediatrics does not replace a child's existing care team or medical home. Instead, they coordinate with providers and partners to ensure continuous access to acute and longitudinal value-based care, so children and their caregivers can spend less unnecessary time in the hospital and more time safe at home and in their communities.

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Key highlights of the program include:

• 24/7 access to virtual and in-home pediatric care services

• Integrated medical, behavioral, and social care  

• Technology-enabled care coordination and family communication tools

• Dedicated caregiver support, including training and individualized resources

• Comprehensive support addressing social determinants of health (SDOH) and navigation of a complex and fragmented healthcare environment

• Coordination and collaboration with the care delivery ecosystem to ensure all are focused on delivering whole-person, fully informed care

• Population health data analytics measured through patient-centered digital, virtual, and in-home services and integrated with claims-based utilization data

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Results from this caregiver-centered approach demonstrate significant improvements in both outcomes and costs:

• 30,000+ attributed patient supported by model across 3 states

• ^~ 10%+ Medical Cost Ratio reduction (percentage of insurance premium payments that are paid out to providers and facilities for medical services) to date (1st patient population launched on 1/1/23)

• 87+ Net Promoter Score of Patients/Caregivers  

• Prevention of more than 5,000 emergency and urgent care visits through timely primary interventions, of which 80% required no acute care visits in the following 30 days

These results validate the findings from AAP, CMMI, and state programs while demonstrating the scalability of comprehensive, caregiver-engaged models for CSHCN populations.

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Policy Recommendations

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1. Recognition of Caregiving as Essential Healthcare Workers
   • Align with AAP recommendations to formally recognize family caregiving as a critical component of healthcare delivery for CSHCN¹⁰
   • Ensure healthcare policies and programs formally recognize caregiving for CSHCN as essential work, including Medicaid work requirements, family medical leave policies, and employment protections
   • Implement standardized assessment tools to evaluate caregiver needs and support requirements

2. Support for Innovative Care Models
   • Design alternative payment models that align incentives for payers, providers, and families to promote meaningful caregiver engagement
   • Create shared savings arrangements that reward providers and payers for successful caregiver partnerships and improved outcomes
   • Support flexible care delivery options that respond to diverse family needs while maintaining cost-effectiveness
   • Support technology-enabled care coordination and communication between caregivers, providers, and payers
   • Integrate Community Health Workers and Family Navigators into care teams to bridge gaps between clinical care and family needs

3. Expanded Access to Support Services
   • Support telehealth and virtual care options to increase access and reduce barriers to care, including across state lines and into rural areas
   • Ensure coverage for comprehensive care coordination across medical, behavioral, and social services
   • Enable streamlined access to community-based support services and social resources
   • Reform licensing and credentialing requirements to expand the medical and behavioral workforce, particularly in underserved areas

4. Investment in Caregiver Resources
   • Fund comprehensive caregiver training and education programs that build skills and confidence in managing complex care needs
   • Support respite care services that prevent burnout and enable sustainable caregiving
   • Provide dedicated access to mental health and peer support programs for caregivers

Conclusion

The evidence clearly demonstrates that engaged caregivers are essential partners in achieving optimal health outcomes for children with special health care needs. By implementing policies and tools that recognize, support, and empower caregivers, we can improve care quality, reduce costs, and better serve this vulnerable population. This foundational shift in how we view and value caregivers is critical to building a more effective, equitable healthcare system for CSHCN.

This position statement represents the first in a series of policy publications examining critical issues affecting children with special health care needs and their caregivers. Future publications will explore specific policy proposals in greater detail.

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References

1. U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau. (2023). Children with Special Health Care Needs. National Survey of Children's Health 2021-2022. Retrieved from https://mchb.hrsa.gov/programs-impact/focus-areas/children-youth-special-health-care-needs-cyshcn

2. Medicaid and CHIP Payment and Access Commission (MACPAC). "Medicaid Access in Brief: Children and Youth with Special Health Care Needs." Issue Brief, March 2023.

3. Kuo DZ, Houtrow AJ; Council on Children with Disabilities. Recognition and Management of Medical Complexity. Pediatrics. 2016;138(6):e20163021.

4. Kuhlthau KA, Bloom S, Van Cleave J, et al. Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr. 2011;11(2):136-143.

5. Kuo DZ, Bird TM, Tilford JM. Associations of family-centered care with health care outcomes for children with special health care needs. Matern Child Health J. 2011 Aug;15(6):794-805. doi: 10.1007/s10995-010-0648-x. PMID: 20640492.

6. Centers for Medicare & Medicaid Services. (n.d.). Integrated Care for Kids (InCK) Model. Retrieved January 22, 2025, from https://www.cms.gov/priorities/innovation/innovation-models/integrated-care-for-kids-model

7. California Department of Health Care Services. (2015, December 14). Health Homes for Patients with Complex Needs: California Concept Paper Version 3.0 (Draft-Final). Retrieved from https://www.dhcs.ca.gov/services/Documents/Health%20Homes%20for%20Patients%20with%20Complex%20Needs%20California%20Concept%20Paper%20Version%203.0%20(Draft-Final)%2012-14-15.pdf

8. Texas Health and Human Services Commission. (2023, December). STAR Kids Managed Care Advisory Committee Report to the Executive Commissioner. Retrieved from https://www.hhs.texas.gov/sites/default/files/documents/sb7-skmcac-annual-report-dec-2023.pdf

9. Agrawal R, Perkins J. Mending, not Ending, Fee-for-Service for Children With Medical Complexity. Hosp Pediatr. 2024 Jan 1;14(1):e18-e20. doi: 10.1542/hpeds.2023-007491. PMID: 38105691.

10. Elias ER, Murphy NA; Council on Children with Disabilities. Home care of children and youth with complex health care needs and technology dependencies. Pediatrics. 2012 May;129(5):996-1005. doi: 10.1542/peds.2012-0606. Epub 2012 Apr 30. PMID: 22547780.

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