To enable children and youth with special healthcare needs to receive high quality, family-centered, integrated health services by providing resources about access to care, medical and dental homes, care coordination, and healthcare transition.
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 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
- Get Healthy Idaho
- Idaho Rx Assistance Plans
- Idaho Rx Card – Statewide 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 health care 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
- 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 Patients and Caregivers
- Got Transition Youth and Adults
- 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
- City of Boise – Accessible Recreation
- Early Autism Services: Blogs, Podcasts, Free Learning Courses, Community Resource Directory and Autism FAQs
- Emergency Preparedness Toolkit for Young Adults
- Family Voices
- Get Internet | The White House
- Idaho Behavioral Health Council
- Idaho Caregiver Alliance
- Idaho Council on Developmental Disabilities
- Idaho Federation of Families
- Idaho Head Start and Early Head Start
- Idaho Independent Living Council (SILC)
- Idaho Parent Network for Children’s Mental Health
- Idaho Parents Unlimited, Inc.
- Information about the developmental milestone checklist updates video
- Joshua's Stage- Lifelong learning with friends
- Lifeline National Verifier
- My Places- Community Events
- 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
- Think College Idaho- College options for people with intellectual and developmental disabilities
- Zero to Three - Revised Developmental Milestones for Babies and Toddlers: Your Questions Answered
- 2-1-1 Idaho CareLine
Upcoming events and trainings
- Idaho Parents Unlimited, Inc. Workshops and Events
- 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
PANDAS/PANS FAQ Sheet
Contact Us