Enable healthcare providers to receive training and obtain resources regarding Children and Youth with Special Health Care Needs (CYSHCN) to strengthen the overall healthcare system and to promote CYSHCN to obtain their highest potential.
Definition of Children and Youth with Special Health Care Needs
Children and Youth with Special Health Care Needs (CYSHCN) encompasses a diverse group of children with health conditions. This can include:
- chronic health conditions (ex. diabetes)
- medically complex health issues (ex. cystic fibrosis)
- developmental disabilities (ex. autism spectrum disorder)
- behavioral or emotional conditions (ex. bipolar disorder)
- require health and related services of a type or amount beyond that required by children generally
CYSHCN Statistics
14.2
Million children and youth in the US who have special healthcare needs
19.2%
of Idaho's children and youth who have special healthcare needs
Six focus areas of CYSHCN
1. Access to healthcare: The ability to obtain healthcare services to achieve the best health outcomes
- About Children’s Developmental Disabilities
- About the Infant Toddler Program
- About the Katie Beckett Program
- About Medicaid for Children
- Accessia Health
- Asthma Allergy Foundation of America – Rx Assistance Programs
- Children’s Special Health
- Early Periodic Screening, Diagnostic and Treatment (EPSDT)
- Get Healthy Idaho
- Idaho Rx Assistance Plans
- Idaho Rx Card – Statewide Program
- Idaho Pharmacy Medicaid Program
- Simplefill Rx Assistance
- Youth Empowerment Services (YES)
- Your Health Idaho
2. Medical home: Primary healthcare that is patient and family-centered, comprehensive, coordinated, accessible, and focused on quality
- Community Health Center Network of Idaho
- Idaho Health Connect Patient Centered Medical Home
- Idaho Primary Care Association– Community Health Care Centers
- Manage My Medicaid with Healthy Connections
- Manage Medicaid for my Child with a Disability
- National Resource Center for Patient/Family Centered Medical Home
3. Dental home: Oral healthcare that is delivered in a comprehensive, continuously accessible, coordinated, and family-centered way
4. Care coordination: A family-centered, assessment-driven, multidisciplinary activity that is focused on meeting the complex healthcare needs of children and youth
5. Healthcare transition: The process of moving from a child/family-centered model of healthcare to an adult/patient-centered model of healthcare and requires planning, transfer, and integration into adult-centered healthcare
- AAFP – Updated Guidance on Transition to Youth to Adult Health Care
- AAP - Updated Clinical Report on Health Care Transitions for Youth and Young Adults
- American College of Emergency Physicians- Tool to create an emergency information form
- Center for Transition to Adult Health Care for Youth with Disabilities
- Got Transition Six Elements of Health Care Transition
- National Parent Center on Transition and Employment
- National Resource Center for Supported Decision-Making
- Planning Transitions from Pediatric to Adult Providers for the Fully-Dependent Child
- School-Based Health Center Playbook on Health Care Transition
6. Training and resource organizations: Find resources and upcoming trainings here
- Act Early Idaho
- Affordable Connectivity Program
- Better Care for People with Complex Needs
- Center for Health Care Strategies
- Disability Scoop Article - Study Suggests Doctors often Discriminate Against Kids with Disabilities
- ECHO Idaho Pediatric Autism
- Family Voices
- Get Internet | The White House
- HRSA – About the National Maternal Mental Health Hotline
- HRSA- National Maternal Mental Health Hotline Promotional Materials
- Idaho Behavioral Health Council
- Idaho Caregiver Alliance
- Idaho Council on Developmental Disabilities
- Idaho Federation of Families
- Idaho Head Start and Early Head Start
- Idaho Parent Network for Children’s Mental Health
- Idaho Parents Unlimited, Inc
- Information about the developmental milestone checklist updates video
- Lifeline National Verifier
- Perceived Disability-Based Discrimination in Health Care for Children with Medical Complexity
- Podcast from the American Occupational Therapy Association “Everyday Evidence: Updated CDC Developmental Milestone Checklists”
- Postpartum Support International – Resources
- Rarediseases.org
- Rays for Rare
- Report of milestone update published in Pediatrics
- Zero to Three - Revised Developmental Milestones for Babies and Toddlers: Your Questions Answered
- 2-1-1 CaresLine
Upcoming events and trainings
- Navigating Transition for Youth with Medical Complexity to Adult Care -15 online sessions from July 2022- February 2023
- Parenting While Rising to Child Developmental Challenges – Webinar Series
Down Syndrome Booklet
Contacts Us