Training Spotlight

Training Spotlight

Children and Youth with Special Health Care Needs (CYSHCN)

Diverse KidsMaternal and Child Health (MCH) and Children and Youth with Special Health Care Needs (CYSHCN) programs contain similar core public health functions for children and families including resource development, capacity and systems building, and population-based functions such as public information and education, knowledge development, technical assistance to communities as well as provider training. This page contains targeted learning opportunities and resources for professionals who work with CYSHCN and their families.    

Table of Contents

Trainings from the MCH Navigator

Introductory Trainings on CYSHCN

Trainings Organized by the Ten Core Domains for System Standards for CYSHCN:

Learning opportunities to help achieve the ten core domains for system standards identified by the National Consensus Framework for Systems of Care for Children and Youth with Special Health Care Needs Project, organized by the Association of Maternal & Child Health Programs (AMCHP) with support from the Lucile Packard Foundation for Children’s Health. This set of standards builds on CYSHCN Core Domains for System Standards in MCHB's publication, National Survey of Children with Special Health Care Needs Chartbook 2009–2010 (2013).*

  1. Early and Continuous Screening and Referral: Children are screened early and continuously for special health care needs. 
    • Genetics Screening and CYSHN. Sara Copeland MD, Medical Officer of Genetics Services, articulates HRSA/MCHB’s goal that all people who could benefit from genetics testing are able to obtain the screening that they need. The idea of early and continuous screening for CYSHN serves as an example for other populations. Date Developed: 01/31/2014 . Source: JSI Health. Presenter(s): Sara Copeland. Type: Video. Level: Introductory. Length: 3 minutes.
    • Birth to 5: Watch Me Thrive. Birth to 5: Watch Me Thrive! is a coordinated interagency effort to encourage developmental and behavioral screening and support for children, families, and the providers who care for them. Date Developed: 05/27/14. Source: Association of University Centers on Disabilities. Type: Webinar archive. Level: Intermediate. Length: 60 minutes.
    • Screen for Three . Date Developed: 10/7/2010 . Source: American Academy of Pediatrics, Michigan Chapter. Presenter(s): Tiffany Kostelec. Type: Video. Level: Introductory. Length: 5 minutes.
    • Arkansas Newborn Screening Long-Term Follow-Up Database. Date Developed: 12/4/2013. Source: Heartland Collaborative. Presenter(s): Christopher J. Swearingen, PhD. Type: Video. Level: Introductory. Length: 50 minutes.
  2. Eligibility and Enrollment
    • Health Insurance for CYSHCN from Immigrant Families. Date Developed: 06/06/13. Source: Catalyst Center. Presenter(s): Myra Rosen-Reynoso, National Center for Ease of Use of Community-Based Services. Type: Webinar archive, slides, and audio transcript. Level: Intermediate. Length: 67 minutes. Special Instructions: audio for this webinar starts at 40 seconds.
    • Prioritizing Enrollment Simplification: What States Can Do Now to Make 2014 Easier. Date Developed: 04/23/13. Source: National Academy for State Health Policy. Presenter(s): Maureen Hensley-Quinn, Gretel Felton, Amy Andrade, and Alice Weiss (moderator). Type: Webinar archive. Level: Advanced. Length: 42 minutes.
  3. Access to Care
    • Spotlight on Access to Care. Date Developed: 05/2014. Source: MCH Navigator. Presenter(s): Beth DeFrancis-Sun, John Richards. Type: Training Series. Level: Intermediate. Length: Series, various lengths.
  4. Medical Home: CYSHCN will receive family-centered, coordinated, ongoing comprehensive care within a medical home. This includes pediatric preventive and primary care; care coordination; and pediatric specialty care as part of the medical home and integrated with community-based services.
  5. Easy to Use Services and Supports: Services for CYSHCN and their families will be organized in ways that families can use them easily and include access to patient and family-centered care coordination.
  6. Family-Professional Partnership: Families of CYSHCN will partner in decision making at all levels and will be satisfied with the services they receive.
    • Promoting Family Engagement and Involvement. Diana Denboba, Branch Chief of the Integrated Services Branch in the DSCSHN, introduces family-professional partnerships and the importance of this alliance in helping states and organizations to implement quality family-centered care that is culturally and linguistically competent. Also in this brief video, LaQuanta Smalley, Public Health Analyst, describes Family-to-Family Health Information Centers and their importance in helping families to be informed shared decision-makers. Date Developed: 01/31/2014 . Source: JSI Health. Presenter(s): Diana Denboba, LaQuanta Smalley. Type: Video. Level: Introductory. Length: 8:15 minutes.
    • Understanding CYSHN Families. Lynda Honberg, former Program Director in HRSA/MCHB/DSCSHN, wears her “parent hat” to discuss the challenges that parents face related to system navigation and the six performance measures of CYSHN programs: access to a medical home, family-professional partnership, screening, easy to use community services, affordable health insurance and financing, and transition services. Date Developed: 01/31/2014 . Source: JSI Health. Presenter(s): Lynda Honberg. Type: Video. Level: Introductory. Length: 7 minutes.
    • How To Incorporate Best Practices in Family Centered Care in Your Practice. Date Developed: 5/29/2013. Source:National Center for Medical Home Implementation. Presenter(s): Rebecca A. Malouin, PhD, MPH; Javier Aceves, MD, FAAP; Joseph Pringle, Jr., MD, FAAP; Shannon Huffman; Debbi Kennerson-Webb, MA, LPA. Type: Webinar Archive.Level: Introductory. Length: 60 minutes.
    • Increasing Meaningful Partnerships between Families and MCH Partnerships [Cultivating Family/Professional Partnerships]. Date Developed: Unknown. Source: MCH Public Health Leadership Institute. Presenter(s): Eileen Forlenza. Type: Narrated Slide Presentation. Level: Introductory. Length: 30 minutes.
    • The Role of Parent-Professional Partnerships and Ease of Use of Services for Latino CSHCN in Minnesota. Date Developed: 03/21/12. Source: National Center for Ease of Use of Community-Based Services. Presenter(s): Barb Dalbec, Wendy Eringer, Jesus Villasenor, Myra Rosen-Reynoso, Sharman Davis Barrett. Type: Webinar archive with PowerPoint slides. Level: Intermediate. Length: 60 minutes.
    • A Family's Challenge: Coordinating Care for a Child with Special Health Care Needs. Date Developed: 5/20/2013. Source: Program for Children with Special Health Care Needs. Type: Video. Level: Introductory. Length: 3 minutes.
  7. Transition to Adulthood: Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
  8. Health Information Technology
    • Making Healthcare IT Meaningful for MCH. Date Developed: 09/21/11. Source: Association of Maternal and Child Health Programs. Presenter(s): Bob Bowman, John Eichwald, Terese Finitzo. Type: Audio with PowerPoint slides. Level: Intermediate. Length: 60 minutes. Special Instructions: audio begins at 45 seconds, with content beginning around 1:40 minutes.
    • HRSA's Health IT Webinars. Date Developed: varies. Source: U.S. Health Resources and Services Administration. Type: YouTube videos. Level: Varies. Length: Varies. Over 30 videos on all aspects of Health IT.
    • HCP Care Coordination and CYSHCN Data System Training. Date Developed: 8/7/2013. Source: Colorado Department of Public Health and Environment. Presenter(s): Annie Whitehouse, Ashley Juhl, Dale Knochenmus. Type: YouTube video. Level: Intermediate. Length: 160 minutes.
  9. Quality Assurance and Improvement
  10. Insurance and Financing: Families of CYSHCN have adequate private and/or public insurance and financing to pay for the services they need.
    • ACA Outreach to Rural and Diverse Populations. The Catalyst Center discussed their research and findings related to inequities in health care coverage, especially for CYSHCN, and family leaders Lisa Sanderson (SD) and Donene Feist (ND) shared their experiences and strategies used in their states. These family leader speakers represent states with different experiences around Medicaid expansion – ND in which Medicaid expansion occurred and SD in which it did not. Family Voices of North Dakota serve as Navigators in their state, for those interested in hearing more about that experience, while South Dakota Parent Connection has ACA outreach strategies and examples to share as a non-navigator organization.  Presentation slides
    • Financing Care for CYSHN. Lynda Honberg, former Program Director in HRSA/MCHB/DSCSHN, raises questions related to how the Affordable Care Act may change financing care for CYSHCN. Date Developed: 01/31/2014 . Source: JSI Health. Presenter(s):  Lynda Honberg. Type: Video. Level: Introductory. Length: 7 minutes.
    • The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers. Date Developed: 1/27/2011. Source: National Academy for State Health Policy and the Catalyst Center .Presenter(s): Carol Tobias; Meg Comeau; Kathleen Farrell; Catherine Hess; Liz Fowler; Linda Peltz; Phyllis Sloyer; Steve Fitton. Type: Narrated Slide Presentation. Level: Intermediate. Length: 90 minutes.
    • Spotlight on Affordable Care Act (ACA). Date Developed: 01/2014. Source: MCH Navigator. Type: Training Series. Level: Intermediate. Length: Series, various lengths.
    • Legislative Briefing: Children with Special Health Care Needs in California. Date Developed: 4/18/2013. Source: Lucile Packard Foundation for Children's Health. Presenter(s): David Alexander, MD, Christina Bethell, PhD, Paul Wise, MD, Margaret Comeau, MHA, Margaret McManus, MH, Juno Duenas, Richard Pan MD. Type: Video Webinar. Length: 108 minutes.
    • Medicaid 101. Date Developed: 1/1/2012. Source: Henry J. Kaiser Family Foundation . Presenter(s): Robin Rudowitz.Type: Video Webinar. Level: Intermediate. Length: 15 minutes. List of all archived webinars as of 09/13, when website was closed.

Trainings Organized by Additional Focus Areas for CYSHCN

For additional learning opportunities in topics not listed here, see the Search page to search by competency or keyword.

Resources from NCEMCH

* Note: The National Survey of Children with Special Health Care Needs (NS-CSHCN) Chartbook 2009-2010,  released by The U.S. Department of Health and Human Services, Health Resources and Services Administration in June 2013, identified 6 core outcomes. The National Consensus Framework for Systems of Care for Children and Youth with Special Health Care Needs Project, organized by AMCHP with support from the Lucile Packard Foundation for Children’s Health, added "cultural competence" as the seventh outcome and introduces 10 core domains for system standards related to CYSHCN. Several learning opportunities in this Spotlight describe the original 6 core outcomes; however, the MCH Navigator chose to use the 10 core domains as its conceptual model to show the growing understanding of the complexity of system standards in the field.

Children and Youth with Special Health Care Needs: Training Spotlight
June 2014; Updated September 2015, October 2015
Authors: Keisha Watson-Bah, Ph.D., John Richards, M.A., AITP, MCH Navigator
Reviewers: Jolene Bertness, MEd, NCEMCH; Sidnee Dallas, M.Div., M.P.H., Virginia State Children with Special Health Care Needs Program, Child & Family Health, Office of Family Services, Virginia Department of Health;Toby Long, Ph.D., University Center for Excellence in Developmental Disabilities (UCEDD) at Georgetown University; Hilary Segar, Susan Friedrich, and Naomi Clemmons, John Snow, Inc., JSI Research and Training Institute, Inc.; Kathleen Watters, M.A., CCC-A and Leticia Manning, M.P.H., Division of Services for Children with Special Health Care Needs, U.S. Maternal and Child Health Bureau.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UE8MC25742; MCH Navigator for $180,000/year. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.