Children and Youth with Special Health Care Needs (CYSHCN)


Who are children and youth with special health care needs?

The federal Maternal and Child Health Bureau defines children with special health care needs as: “those who have or are at increased risk for a chronic, physical, developmental, behavioral, or emotional condition and who also require health and related services of a type of amount beyond that required by children generally” (Department of Health and Human Services, 2012).

This definition can include physical conditions, such as sickle cell disease or asthma. It also includes children with disabilities such as cerebral palsy, Down syndrome, autism, or children who are technology dependent.

According to the National Survey for Children's Health (NSCH), approximately 13.8 million children nationwide – 18.9 percent of all people under the age of 18 – have special healthcare needs.

During 2018-2019, there were an estimated 33,465 children in Alaska with special health care needs. This was 18.3% of the Alaska population ages 0-17 years.

11.1% (20,420) had an elevated use of medical care, mental health, or education services due to a health condition lasting 12 months or longer. 

10.1% (18,435) of Alaskan children had a special health care need that included an ongoing emotional, behavioral, or developmental problem requiring treatment or counseling. 

A Summary of Available Data for CYSHCN in Alaska from March 2022 is available and offers a vast array of information including, who CYSHCN are, where they live, the kind of conditions they experience and types of services they require.

    Alaska's CYSHCN State Plan

    The State of Alaska collaborated with families and a broad stakeholder group to create a five year CYSHCN Alaska State Plan. Find the full report and a summaries below.

    Alaska Partnership Access Line – Pediatric Alaska (PAL PAK)
    The Alaska Partnership Access Line – Pediatric Alaska (PAL-PAK) offers immediate support to pediatric care providers (doctors, nurse practitioners and physician assistants) in Alaska who have questions about child and adolescent mental healthcare, such as diagnostic clarification, medication adjustment or treatment planning. There is no charge for the calling the consultation line. Consultations can be patient specific or can be general questions related to child psychiatry. The phone consultation is covered by HIPAA, section 45 CFR 164.506; no additional release of patient information is required to consult by phone.

    Call (855)-599-7257 (toll-free) Monday through Friday, 7 a.m. to 4 p.m. Alaska time, to be directly connected to a child and adolescent psychiatrist.

    Help Me Grow Alaska (HMG-AK)
    Offers support to families and healthcare providers seeking help with child health, mental health, development, and developmental screenings. A call center is staffed with specialists who have access to a comprehensive database of vetted and locally available information and resources across Alaska.
    HMG-AK also offer to healthcare providers outreach and education about PAL-PAK and other resources to support patients and families. Schedule A Training

    Ongoing Activities

    Patient Centered Medical Home Advisory Work Group

    Patient Centered Medical Home Advisory Work Group

    We are always looking to partner with families of CYSHCN to guide our work. If you would like to participate in our workgroup related to any of our activities, please contact

    Infant Formula Shortage Information

    What should you do if are not able to find any infant formula for your baby?

    • Contact your community WIC office for help and advice. Locate your closest WIC office and their phone number.
    • Contact your health care provider for help and advice.
    • Mix all formula power and concentrate according to the package labeling. Adding more water than is recommended may make your baby very sick. Do not add more water to any formula powder or concentrate than the amount recommended on the package label.

    Use this information to help you

    COVID-19 Resources for CYSHCN

    During this time of uncertainty it is important to get good information and resources about how to keep your child, yourself, and your family and friends safe. Below are links to resources for staying safe from the COVID-19 virus, things to think about in terms of the medical care your child or youth may need on a daily basis, and resources to access if you are having mental health needs or are struggling financially.

    Children and Youth with Special Health Care Needs COVID-19 Health and Special Education Question and Answers Phone Call – Click the link below to access the Q&A PDF

    CYSHCN COVID19 Call QA Notes (pdf)

    Plan for Health Care Routine Vaccination during the COVID-19 Outbreak

    Introduction to Care through Telemedicine

    Part 1:

    What is telemedicine?
    Why would I want to use telemedicine?
    Does insurance cover telemedicine?

    Part 2:

    How do I prepare for my telemedicine appointment?
    What can I expect with my telemedicine appointment?
    What do I need to know during my telemedicine appointment?

    Part 3:

    How do I get the most from my telemedicine appointment?
    What happens after my telemedicine appointment?

    Plan for Emergency Care

    Circle of Support Planning if you become sick with COVID-19


    Prepare your family for the school year

    Alaska Smart Start 2020 – Resources for building a system-wide response to online learning -

    State of Alaska Special Education – Parent Resources for Accessing Special Children -


    Masks 101: A Guide for Children who are Medically Complex

    7 Tips to Help Your Child Wear a Face Mask

    Hand Washing

    Practice good hygiene

    Stone Soup Group and Help Me Grow Alaska are two agencies who serve children and families throughout Alaska. They offer resources online and support via the telephone. Contact information is below:

    Help Me Grow Alaska
    Phone: 1-833-464-2527

    Stone Soup Group
    Phone: 907-561-3701

    Greeen Mountain Self Advocates created a document available online, written by and for people with a disability. It offeres information and resources on COVID-19.