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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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Community-Based Services and Supports

CYSHCN and their families are provided access to comprehensive home and community-based supports.

  1. Agreements are in place between the health systems and community agencies including family organizations, public health, education, Early Intervention (Part C), Special Education, child welfare, mental health, and home health care organizations and are structured to:
    • promote family support through linking families to family organizations and other services and supports,
    • promote shared financing, where appropriate,
    • establish systems for timely communications and appropriate data sharing,
    • ensure access and coordination of services
    • promote collaboration between community-based organizations and agencies, providers, health care systems, and families, and
    • specify responsibilities across the various providers, and community-based agencies. 1

Respite Care

  1. Respite services, both planned or emergency, are available to all families and caregivers of CYSHCN. 3
  2. Families and caregivers of CYSHCN are screened for respite care needs, made aware of available respite services in their community, and have a system in place for ensuring timely referrals for families of CYSHCN with emergency respite needs.
  3. Families are informed and helped to access available respite services which may be provided in a variety of settings, on a temporary basis, including the family home, respite centers, or residential care facilities. 3
  4. When out-of-home respite services are needed, transportation is available to help a child and family access these services.

Palliative and Hospice Care

  1. Curative and palliative care (also known as concurrent care) are both available and offered to families of CYSHCN at the same time.
  2. Palliative and hospice care utilizes family-centered models of care that respect the CYSHCN and their family’s preferences, values, and cultural beliefs, and provide family access to psychosocial screening and referrals to needed supports and services.

Home-Based Services

  1. Home health care is a covered benefit for CYSHCN that includes health care for the child and supportive care for the family and is provided in the family's home by professionals who have experience in pediatric care. 6

  • Ease of Use Framework 2 (See Appendix A)
  • Standards and Guidelines for NCQA’s Patient-Centered Medical Home, (PCMH) 2017, NCQA 7

Respite Care

National Respite Guidelines: Guiding Principles for Respite Models and Services. ARCH National Respite Network and Resource Center. 4

Palliative and Hospice Care

Guiding Principles for Pediatric Palliative Care, National Hospice and Palliative Care Organization (NHPCO) 5 (See Appendix A)

  1. See framework presented by Richard C. Antonelli (2012). “Integration for Children with Special Health Needs: Improving Outcomes and Managing Costs.” Presentation for the National Governors Association, July 12, 2012. http://cahpp.org/wp-content/uploads/2015/04/NGA-webinar-July-2012-Comeau.pdf
  2. National Center for Ease of Use of Community-Based Services. Ease of Use Framework. Available at: http://www.communitybasedservices.org/easeofuse. Updated 2013. Accessed March 15, 2013.
  3. Federal Lifespan Respite Act of 2006.PL 109-442.
  4. Edgar M, Uhl M. National Respite Guidelines: Guiding Principles for Respite Models and Services. Available at: http://archrespite.org/images/Books/NationalRespite_Guidelines_Final_October_2011_1MB.pdf. Chapel Hill, NC: ARCH National Respite Network and Resource Center, 2011. Accessed October 2013.
  5. National Hospice and Palliative Care Organization. Standards of Practice for Pediatric Palliative Care and Hospice. Arlington, VA: National Hospice and Palliative Care Organization, 2009.
  6. Libby RC, Imaizumi SO. American Academy of Pediatrics, Committee on Child Health Financing, Section on Home Care. Policy Statement: Financing of Pediatric Home Health Care (Second Edition). Available at: http://pediatrics.aappublications.org/content/118/2/834.full.pdf. Updated 2009. Accessed October 2013.
  7. 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.