Children and Youth with Special Health Care Needs (CYSHCN)
Maternal 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
- Improving Care for Children with Chronic and Complex Needs – A Look at the National Care Coordination Standards for CYSHCN. Date Developed: 10/21/2020. Source: National Academy for State Health Policy. Presenter(s): David Bergman, Cara Coleman, Jeffrey Brosco, Wendy Tiegreen. Type: Webinar Archive. Level: Introductory. Length: 60 minutes.
- DSCSHN Program Accomplishments. Lynda Honberg, former Program Director in HRSA/MCHB/DSCSHN, and Bonnie Strickland, Director of HRSA/MCHB’s Division of Services for CYSHN, discuss program accomplishments including: the origin and evolution of the concept and term “medical home,” identifying the elements of a full-functioning system of services for CYSHN through the programs 6 core outcomes, the development of the Title V index, and the Title V Quality Improvement Toolbox. Date Developed: 01/31/2014 . Source: JSI Health. Presenter(s): Lynda Honeberg. Type: Video. Level: Introductory. Length: 5:45 minutes.
- CYSHN Program Leadership. Lynda Honberg, former Program Director in HRSA/MCHB/DSCSHN, shares advice for new directors of Children and Youth with Special Health Care Needs programs. Suggestions include adapting to ever-evolving workplans, creating and maintaining partnerships with other agencies, and involving families at all levels of work. Date Developed: 01/31/2014 . Source: JSI Health. Presenter(s): Lynda Honberg. Type: Video. Level: Introductory. Length: 2:30 minutes.
- Transition to Adult Health Care for Youth with Special Health Care Needs. Date Developed: n.a. Source: Wisconsin Children and Youth with Special Health Care Needs Program and Waisman Center University Center for Excellence in Developmental Disabilities. Presenter(s): Ben Schlich, Deborah Hoffman PhD. Type: Webcast. Level: Introductory.Length: 12 minutes. Special Instructions: Requires Microsoft Silverlight Plugin.
- COVID-19 Telehealth Policies Affecting CYSHCN: What to Keep, Modify, or Discard? Date Developed: 7/6/2021. Source: Lucile Packard Foundation for Children's Health. Presenter(s): Sharon Silow-Carrol, MSW, MBA, Care Coleman, JD, MPH, Alison Curfman, MD, MBA, Cheryl Roberts, JD, Ed Schor, MD. Type: Archived Webinar. Level: Introductory. Length: 60 minutes.
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).*
- 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.
- 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.
- 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.
- 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.
- 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.
- Identifying Resources for Children/Youth with Special Health Care Needs and Their Families. Date Developed: n.a.. Source: Wisconsin Children and Youth with Special Health Care Needs Program and Waisman Center University Center for Excellence in Developmental Disabilities. Presenter(s): Kristin Aasen-Gowen MSSW. Type: Webcast. Level: Introductory. Length: 27 minutes. Handouts. Special Instructions: Requires Microsoft Silverlight Plugin.
- COVID-19 Telehealth Policies Affecting CYSHCN: What to Keep, Modify, or Discard? Date Developed: Jul 6, 2021. Source: Lucile Packard Foundation for Children's Health. Presenter(s): Sharon Silow-Carroll, MSW, MBA, Cara Coleman, JD, MPH, Alison Curfman, MD, MBA, Cheryl Roberts, JD, Ed Schor, MD. Type: Webinar archive, slides, Q&A, and pre-webinar suggested Publication. Level: Intermediate. Length: 62 minutes. Special Instructions: Scroll down the page to view the webinar.
- Be Ready: Tips for Families of Children and Youth with Disabilities & Medical Needs. Date Developed: June 2021. Source: Eastern Great Lakes Pediatric Consortium for Disaster Relief. Type: Video. Level: Introductory. Length: 6 minutes. Infographics.
- Serving CYSHCN in Medicaid Managed Care Contract Language and the Contracting Process. Date Developed: Nov 16, 2017. Source: AMCHP, NASHP, Lucile Packard Foundation for Children's Health. Presenter(s): Karen VanLandegham, MPH, Rachel Jew, MPAff, Susan Chacón, MSW, LCW. Type: Webinar archive. Level: Intermediate. Length: 58 minutes.
- 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.
- 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.
- 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.
- 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.
- Apps to Promote Student Independence in the Classroom and Community. Date Developed: 1/27/2015. Source: Indiana Secondary Transition Resource Center. Indiana University, Bloomington.
- Authentic Assessment: A Blueprint for Quality Transition. Date Developed: 10/29/2014. Source: Indiana Secondary Transition Resource Center. Indiana University, Bloomington.
- Determination: A Toolkit for Teachers. Date Developed: 3/1/2012. Source: Indiana Secondary Transition Resource Center. Indiana University, Bloomington.
- Health Care Transition for Adolescents and Young Adults: An Online Video CME Course. Date Developed: 2013. Source: Health Services for Children with Special Needs. Presenter(s): April Barbour, MD, Billie Downing, MD, Kirsten Hawkins, MD, MPH, Peggy McManus, MHS, Nathalie Quion, MD, Lisa Tuchman, MD, Patience White, MD, MA. Level: Intermediate. Length: 60 minutes.
- Transition Assessment for Students with Severe and Multiple Disabilities. Date Developed: 1/11/2011. Source: Indiana Secondary Transition Resource Center. Indiana University, Bloomington. Length: 90 minutes.
- Health Information Technology
- 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.
- Quality Assurance and Improvement
- Insurance and Financing: Families of CYSHCN have adequate private and/or public insurance and financing to pay for the services they need.
- 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.
- 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
- Cultural Competence
- Leadership
- Maternal and Child Health Course Bundle: Leadership. Date Developed: 2012. Source: University of Alabama at Birmingham Maternal and Child Health Leadership and Policy Education Program and the South Central Public Health Training Center. Presenter(s): n. a. Type: Online Course. Level: Introductory. Length: Self-paced.
- Using Data
- 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.
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.