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Identification, Screening, Assessment, and Referral

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Eligibility and Enrollment in Health Coverage

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Access to Care

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Medical Home

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Community-Based Services and Supports

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Transition to Adulthood

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Health Information Technology

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Quality Assurance and Improvement

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Medical Home

CYSHCN will receive family-centered, coordinated, ongoing comprehensive care within a medical home.

  1. All CYSHCN have a medical home capable of providing or coordinating services to meet the child’s medical, dental, and social-emotional needs. 1
  2. The medical home provides team-based care that is led by a primary care clinician and/or pediatric subspecialist and in which the family is a core member. 1

Pediatric Preventive and Primary Care System Standards

  1. Care focuses on overall health, wellness, and prevention of secondary conditions.1
  2. CYSHCN receive recommended immunizations according to the Advisory Committee on Immunization Practices (ACIP). 7

Medical Home Management System Standards

  1. The medical home provides access to health care services 24 hours, seven days a week.
  2. The medical home utilizes scheduling systems that recognize the additional time involved in caring for CYSHCN. 8
  3. The medical home provider performs comprehensive health assessments. 6
  4. Pre-visit assessments are completed by the medical home with the family to ensure the medical home team has comprehensive data on the child/family and provides care in an appropriate manner. 6
  5. Accommodations for special needs, such as provision of home visits versus office visits are made available by the medical home.
  6. The medical home conducts activities to support CYSHCN and their families in self-management of the child’s health and health care.
  7. The medical home develops, maintains, and updates a comprehensive, integrated plan of care that includes patient/family identified goals. 6 (See standards for care coordination).
  8. The medical home serving CYSHCN has a process for keeping an updated record of and managing medications.6
  9. The medical home integrates care with other providers and ensures that information is shared effectively with families and among and between providers.
  10. The medical home conducts effective transitions of care between primary and specialty services, facilities, and providers and institutional settings to ensurepreference for health services and sharing of information across systems. 6
  11. The medical home performs care tracking, including sending of proactive reminders to families and clinicians of services needed, via a registry or other mechanism. 9

Care Coordination System Standards

  1. All CYSHCN have access to patient- and family-centered care coordination that integrates physical, oral, mental health and community-based services. 10
  2. To provide optimal coordination and integration of services that are needed by the child and family, care coordinators:
    • serve as a member of the medical home team, 11
    • have ongoing relationships with families, medical care providers, and other partners in care,12
    • use biopsychosocial assessments to help families articulate goals and priorities for care which take into account social determinants that impact the health of their child, 13
    • assist in managing care transitions of CYSHCN across settings and developmental stages, and 10
    • provide appropriate resources to match the health literacy level, primary language, and culture of CYSHCN and their family. 10
  3. A plan of care is jointly developed, shared, and implemented among the CYSHCN and their family, primary care provider and/or the specialist serving as the principal coordinating physician and members of the health care team. 14
  4. Family strengths are respected in the delivery of care, extended family members are included in decision-making according to the family’s wishes and family-driven goals are incorporated into the plan of care. 15

Pediatric Specialty Care System Standards

  1. Comprehensive specialty services, including behavioral health services, acute services in a 24-hour clinical setting, intermediate services, and outpatient services and community support services are made available by specialty providers when needed. 20
  2. The system encourages shared management of CYSHCN between pediatric primary care and specialty providers through payment models or other policies that promote improved integration among multiple systems. 21

  • AAP Medical Home Policy Statement. 2
  • Joint Principles of the Patient Centered Medical Home. 3
  • Medical Home Index (Six Domains), Center for Medical Home Improvement. 4
  • Family-Centered Care Assessment for Families (FCCA-F), National Center for Family Professional Partnerships. 5
  • Standards and Guidelines for NCQA’s Patient-Centered Medical Home (PCMH) 2017, NCQA. 6

Pediatric Preventive and Primary Care

Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, American Academy of Pediatrics. 8

Care Coordination

  • Definition of Care Coordination. 10 (See Appendix A)
  • National Quality Forum Framework for Care Coordination 16 (See Appendix A)
  • The Functions of Care Coordination. 10 (See Appendix A)
  • 2013 Special Needs Plans Structure and Process Measures (See SNP Element 1), National Committee for Quality Assurance (NCQA) 17
  • Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs: Report and Implementation Guide. 18
  • Patient and Family Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems. 19

  1. U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. Envision 2020: A 10-year strategic plan for the division of services for children with special health care needs. Rockville, MD: United States Department of Health and Human Services, 2011.
  2. AAP Medical Home Policy Statement. Medical Home Initiatives for Children with Special Needs Project Advisory Committee. Pediatrics 2002;110: 184-186. http://pediatrics.aappublications.org/content/pediatrics/110/1/184.full.pdf
  3. AAP, AAFP, ACP, AOA. Joint Principles of the Patient Centered Medical Home. Available at: http://www.aafp.org/dam/AAFP/documents/practice_management/pcmh/initiatives/PCMHJoint.pdf Updated February 2007. Accessed March 10, 2013.
  4. Cooley, WC, McAllister, JW, Sherrieb, K., Clark, RE. The medical home index: Development and validation of a new practice-level measure of implementation of the medical home model. Ambulatory Pediatrics. 2003; 3(4): 173-180.
  5. National Center for Family Professional Partnerships. Family-Centered Care Assessment for Families (FCCA-F). Albuquerque, NM: Family Voices Inc, April 2013. https://medicalhomes.aap.org/Documents/FCCAquestionnaire.pdf
  6. National Committee for Quality Assurance. Standards and Guidelines for NCQA’s Patient-Centered Medical Home (PCMH) 2017. Available at: http://www.ncqa.org. Accessed May 9, 2017.
  7. Recommended Immunization Schedule for Children and Adolescents Aged 18 Years or Younger, 2017. Available at: https://www.cdc.gov/vaccines/schedules/hcp/imz/child-adolescent.html Accessed March 24, 2017.
  8. Hagan JF, Shaw JS, Duncan PM. Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, Fourth Edition. Elk Grove Village, IL: American Academy of Pediatrics, 2017. Accessed March 2017
  9. National Committee for Quality Assurance. Standards and Guidelines for NCQA’s Patient-Centered Medical Home (PCMH) 2011, Appendix 2: NCQA’s PatientCentered Medical Home (PCMH) 2011 and CMS Stage 1 Meaningful Use Requirements.
  10. Antonelli RC, McAllister JW, Popp J. Making Care Coordination a Critical Component of the Pediatric Health System: A Multidisciplinary Framework. New York, NY: The Commonwealth Fund; 2009. http://www.commonwealthfund.org/~/media/files/publications/fund-report/2009/may/making-care-coordination-a-critical-component/1277_antonelli_making_care_coordination_critical_final.pdf
  11. McAllister JW, Presler E, Cooley WC. Practice-Based Care Coordination: A Medical Home Essential. Pediatrics. 2007;120; e723-e733. http://pediatrics.aappublications.org/content/120/3/e723
  12. Friedman A, Howard J, Shaw EK, Cohen DJ, Shahidi L, Ferrante JM. Facilitators and Barriers to Care Coordination in Patient Centered Medical Homes (PCMHs) from Coordinators' Perspectives. Journal of the American Board of Family Medicine. 2016: 29 (1): 90-101. http://www.jabfm.org/content/29/1/90.full.pdf+html
  13. Kuo, D., Houtrow, AJ (2016). " AAP Council on Children with Disabilities. Recognition and Management of Medical Complexity." Pediatrics, 138(6): 3021. http://pediatrics.aappublications.org/content/pediatrics/early/2016/11/17/peds.2016-3021.full.pdf
  14. Rhode Island Department of Human Services. Rhode Island Department of Human Services Care Management Protocol for Children with Special Health Care Needs. Rhode Island RIte Care Contract – Appendix Q. Unpublished. (corresponds to number 68 in PDF)
  15. Epstein SG, Taylor AB, Halberg AS, Gardner JD, Walker DK, Crocker A. Enhancing Quality: Standards and Indicators of Quality Care for Children with Special Health Care Needs. Boston: New England SERVE, 1989.
  16. National Quality Forum. Preferred practices and performance measures for measuring and reporting care coordination: A consensus report. Available at: http:// www.qualityforum.org/Publications/2010/10/Preferred_Practices_and_Performance_Measures_for_Measuring_and_Reporting_Care_Coordination.aspx. Updated October 2010. Accessed March 10, 2013.
  17. National Committee for Quality Assurance. 2013 Special Needs Plans Structure & Process Measures. https://www.cms.gov/Medicare/Health-Plans/Medicare-Advantage-Quality-Improvement-Program/Downloads/SandP_2012_SNP_Performance-Report_09_20_2013.pdf
  18. McAllister J, Lucile Packard Foundation for Children’s Health. Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs. Released April 2014. Available at: http://www.lpfch.org/publication/achieving-shared-plan-care-children-and-youth-special-health-care-needs
  19. American Academy of Pediatrics Council on Children with Disabilities and Medical Home Advisory Committee (2014). "Patient and Family Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems " Pediatrics, 133(5). http://pediatrics.aappublications.org/content/pediatrics/133/5/e1451.full.pdf
  20. Rhode Island Department of Human Services. Rhode Island Department of Human Services Care Management Protocol for Children with Special Health Care Needs. Rhode Island RIte Care Contract - Appendix O. Unpublished.
  21. Rosenbaum S. Evaluating Managed Care Plans for Children with Special Health Needs: A Purchaser’s Tool. Optional Purchasing Specifications for Medicaid Managed Care for CYSHCN. Washington, DC: Maternal and Child Health Bureau, Health Services and Resources Administration, 2000.