Children and Youth with Special Health Care Needs
These web resources provide information for families and/or caregivers of children and youth with special health care needs who have a new diagnosis and/or have concerns or questions about their child's development.
Children and Youth with Special Health Care Needs (CYSHCN) have or are at risk for chronic physical, developmental, behavioral or emotional conditions and need health-related services beyond those generally required by children.
NCDHHS offers a toll-free helpline for parents/caregivers of and professionals who work with Children and Youth with Special Health Care Needs (CYSHCN).
Family Partner Spotlight
"My name is Marie Smith, and I am a parent of two boys who are on the autism spectrum. I am from a rural area, and I want to ensure families in rural areas have the resources they need to help their children.
I think it is important for parents to speak up and our voices to be heard!
I became a family partner with the Whole Child Health Section to be a voice for my boys and a voice for other parents like me. I have been involved in Innovative Approaches, participated in dental home trainings for families of children with special health care needs, and reviewed materials to make sure they are easy for parents to understand."
Children and youth with special health care needs (CYSHCN) are especially vulnerable to the COVID-19 virus, and some infected children are having long-term side effects of COVID-19.
For children and youth with special health care needs (CYSHCN) it is important to use different layers of protection together in addition to vaccination to reduce the risk of spreading COVID-19. Check out: COVID-19: Children and Adolescents with Special Health Care Needs
Diagnosis A-Z List Diagnoses & Conditions - FAQs
Care Management for at-Risk Children (CMARC) [formerly CC4C] is a free, voluntary program that helps families with children birth to age 5 find and use community services.
Community Alternative Program for Children (CAP/C) provides home and community-based services to children at risk for institutionalization in a nursing home.
Genetic Counseling Services provides early intervention, education, diagnosis, and treatment if possible; to individuals and families who may have or are at risk for a genetic condition.
Learn The Signs. Act Early. Developmental milestones provide information on important milestones for children up to 5 years of age.
The National Alliance of Mental Illness NC offers support groups, helplines and resources for families and individuals affected by mental illness.
NC Infant-Toddler Program s an early intervention program for children birth to three who have disabilities or delays in one or more areas of development.
NC Innovations Waiver is a resource that helps people living with intellectual and/or developmental difficulties experience more independent lives by receiving select services in the home or community rather than an institutional setting, along with extended coverage through Medicaid. Local Management Entities - Managed Care Organizations (LME-MCOs) are responsible for the state's public mental health, developmental disabilities and substance use disorders services system.
Vision Resources offers information to help children see well to learn and grow.
Dental Care/Oral Health Resources
List of NC Medicaid Dental Providers
Safety Net Dental Clinics helps low-income families access dental care
NC Oral Health Section provides educational resources or materials to assist children in establishing good oral health habits
Free Parent Training
Parent Leadership Training
Parents as Collaborative Leaders (PACL) is a free training program presented by parents of children with special healthcare needs. The Whole Child Health Section of the NC Division of Child & Family Well-Being has assembled a group of parent leaders and trained them to facilitate the nationally recognized, research-based curriculum, Parents as Collaborative Leaders (PACL). These parents are passionate about teaching others who have children with a variety of special healthcare needs and/or developmental concerns to become effective leaders in their communities, at the state level, and at the national level. These trainings have been used to support parents and caregivers to be more active and confident at the table in a variety of educational, medical, and community settings. The trainings are offered at no cost and are available in English and Spanish, in person or virtually. See the flyer below for a module overview. There are 10 modules included in the training with flexible scheduling options. To learn more or book your FREE parent leadership training, email mahala.turner@dhhs.nc.gov.
Parent Leadership Training Flyer
Parent Leadership Training Flyer Spanish
Sexual Health Training
Teaching Parents of Children with Disabilities About Sexual Health is a free training program presented by parents of children with special healthcare needs. The Whole Child Health Section of the NC Division of Child & Family Well-Being developed this three-module training in collaboration with a core workgroup that included parents of children with disabilities, Whole Child Health Section Staff, community partners, and a subject matter expert. After completing the training modules participants will gain tools to increase confidence and commitment to educate about sexual health, develop strategies for teaching their child about sexual health topics, and gain knowledge about common sexual health safety issues for children with disabilities. The trainings are offered at no cost and are available in English and Spanish, in person or virtually. See the flyer below for a module overview. There are 3 modules included in the training with flexible scheduling options. To learn more or book your FREE sexual health training, email mahala.turner@dhhs.nc.gov.
Sexual Health Training Flyer
Sexual Health Training Flyer Spanish
COVID-19 Information and Resources
NC Department of Health and Human Services
Kids Have a Spot to Take Their Shot Against COVID-19
For additional information, please contact the Children with Special Health Care Needs Help Line.
1-800-737-3028
Webinar Recordings
Personal and Family Preparedness during COVID-19 (July 15, 2020)
How State and Local Officials are Preparing during COVID-19 (July 22, 2020)
Recovery, Resources, and Questions Answered about Preparing and COVID-19 (July 29, 2020)
Emergency Preparedness
Are You Prepared in Case of An Emergency?
Está preparado en caso de una emergencia?
Highlights Archive
2020 Cabarrus Health Alliance Innovative Approaches Virtual Photo Voice Show: This Photo Voice exhibit addresses how life changes for a family when they have a child with a complex or special healthcare need as well as the challenges these families encounter on their journey, particularly when dealing with a pandemic.
Disaster Preparedness Video: Families of CYSHCN must be extra prepared when encountering natural disasters and while viewing the video you will learn different techniques in how to become prepared and stay prepared.
Related Links
Help Line Referral Flow Chart Guide
Finding the Right Dental Home for Your Child or Youth with Special Needs | Cómo encontrar el consultorio dental adecuado
NC Medicaid / Health Choice (CHIP) Brochure: Health Insurance Is Important For Your Child | El seguro médico es importante para su nino
The NC Ombudsman will help resolve issues for North Carolina’s recipients who have questions or problems with their NC Medicaid Managed Care coverage.
Community Alternative Program for Children (CAP/C) provides home and community-based services to children at risk for institutionalization in a nursing home.
Food and Nutrition Services (Food Stamps) is a federal food assistance program that provides low-income families the food they need for a nutritionally adequate diet. Benefits are issued via Electronic Benefit Transfer cards (EBT cards).
NC Innovations Waiver is a resource that helps people living with intellectual and/or developmental difficulties experience more independent lives by receiving select services in the home or community rather than an institutional setting, along with extended coverage through Medicaid. Local Management Entities - Managed Care Organizations (LME-MCOs)
are responsible for the state's public mental health, developmental disabilities and substance use disorders services system.
NC Medicaid are publicly funded children's health insurance programs open to North Carolina residents who meet income, age and immigration guidelines.
NC Health Insurance Premium Payment (HIPP) pays for eligible Medicaid members and their families to receive health insurance through their job or COBRA.
Safety Net Dental Clinics helps low income families access dental care.
Shriners Hospitals for Children provides advanced care and procedures for orthopedic, neuromusculoskeletal conditions or injuries, burns, spinal cord injuries, cleft lip and palate, and other complex health care needs.
Supplemental Security Income (SSI) Disability Benefits for Children is a federal benefit program through the Social Security Administration that offers monthly benefits to children birth up to age 18 who have a disability or special health care need.
United Healthcare Children's Foundation provides medical grants to help children, birth to 16, gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan.
The Women, Infants, and Children (WIC) Program is the Special Supplemental Nutrition Program for Women, Infants, and Children funded by the United States Department of Agriculture. County health departments, community and rural health centers, and community action agencies provide WIC Program services.
The Arc of NC provides advocacy and services to people with intellectual and developmental disabilities.
Autism Society of NC works to directly improve the lives of individuals and families affected by autism through advocacy, training and education, and direct services.
Autism Speaks provides resources, awareness and activities aimed at promoting the needs of individuals with autism and their families.
Brain Injury Association of NC offers resources and knowledge of brain injuries.
The Carolina Institute for Developmental Disabilities specializes in serving individuals with intellectual and/or developmental disabilities who may have co-existing behavioral, mental health, or medical health needs. These services may include evaluations, consultation with staff specialists, referrals to other medical or behavioral specialists, or participation in family-centered group opportunities.
Children's Advocacy Centers of North Carolina provide services for abused children.
Disability Rights North Carolina works to protect the rights of children and adults with disabilities living in North Carolina.
Disability Services helps people who have disabilities find employment, find care providers, and gain access to technology, helping people continue to live independently.
Down Syndrome Networks offer support to families who have children with Down Syndrome.
Duke Center for Autism and Brain Development provides care to families so that each individual with autism will realize his or her fullest potential and to expand its impact through education, innovative research, and public policy.
Duke Autism Clinic provides comprehensive assessment, diagnosis, treatment, ongoing behavioral and medication consultation for children and adolescents with autism spectrum disorder.
Easter Seals North Carolina/United Cerebral Palsy creates opportunities, promotes individual choice, and changes the lives of people with disabilities by maximizing their individual potential to live, learn, and work in their communities.
Emergency Preparedness for Children with Special Health Care Needs provides resources for families to plan ahead for an emergency to ensure their family and child are safe.
Emergency Preparedness Checklist for Children with Special Health Care Needs
Exceptional Children's Assistance Center (ECAC) offers trainings and information to parents of children with special health care needs.
Family Support Network of NC programs that provide services and resources for families of children with special needs or “at risk” populations.
First in Families supports people with developmental disabilities and traumatic brain injury.
Hearing Loss Resources identify resources to help with children's hearing needs.
The National Alliance of Mental Illness NC offers support groups, helplines and resources for families and individuals affected by mental illness.
NC Council on Developmental Disabilities works to improve the opportunities and lives of North Carolinians with intellectual/developmental disabilities (I/DD) through advocacy, capacity building and systems change. provides diagnostics and support to individuals with FASDs and their families.
NC Kids Adoption and Foster Care Network help families navigate the initial stages of foster care and adoption.
NC Office on Disability and Health promotes the health and well-being of people with disabilities in North Carolina by improving access to services, and opportunities and by decreasing health disparities.
North Carolina Assistive Technology Program provides assistive technology services to people of all ages and abilities.
TEACCH Autism Program provides screening and evaluation services, parent support and education, intervention services, professional consultation and training, along with other related resources.
Victory Junction enriches the lives of children with serious illnesses by providing life-changing camping experiences that are exciting, fun and empowering, at no cost to children or their families.
Vision Resources offers information to help children see well to learn and grow.
Bullying resources are available at Stop Bullying for families of children with special needs.
Children's Advocacy Centers of North Carolina provide services for abused children.
Disability Services helps people who have disabilities find employment, find care providers and gain access to technology helps people continue to live independently.
Elementary to Middle or Junior High School Transition Planning
Guardianship and Alternatives to Guardianship Resources
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North Carolina Judicial Branch - Guardianship offers information on how to become a guardian and what qualifications one must meet to obtain guardianship.
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The Arc of North Carolina offers a LIFE guardianship program designed to help advocate for and protect the health and safety of individuals to ensure that their civil and human rights are not violated.
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Duties of a Guardian provides information on the basic duties of a guardian of an individual and a guardian of an estate.
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NC Administrative Office of the Courts provides forms that will be used in guardianship proceedings.
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NC Guardianship Association trains and supports individuals who are court-appointed guardians.
Individuals with Disabilities Education Act (IDEA) website provides information and resources for families who have children with disabilities.
An Individualized Education Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.
Middle and High School Transition Planning
North Carolina Assistive Technology Program provides assistive technology services to people of all ages and abilities.is the public school system for the state of NC.
NC DPI Exceptional Children Local Program Directors
Parent Keys to Success in the Parent-School Partnership ideas to improve parent-to-professional communication with school staff.
Parent Rights and Responsibilities in Special Education: NC Notice of Procedural Safeguards is a document that summarizes the rights and responsibilities of parents in the special education process.
Section 504 provides protections against discrimination on the basis of a disability.
Special Diet/Food Allergies policy with the Department of Public Instruction.
Triple P (Positive Parenting Program) provides parenting and family support strategies that aim to prevent behavioral and emotional problems in children by enhancing the knowledge, skills and confidence of parents.
Wrightslaw provides information on special education law, education law, and advocacy for children with disabilities.
- Education
- Independent/Community Living
- Community Alternatives Program for Disabled Adults (CAP/DA) is a program that allows disabled adults ages 18 and over to receive support services in their own homes, as an alternative to nursing home placement.
- Independent Living for People with Disabilities offers resources and support to help individuals become more independent in their home and in their family and community.
- Employment/Postsecondary Education
- Think College provides a checklist and related resources to guide the selection of transition goals and activities.
- Preparing for Employment.
- Social Security Disability Insurance (SSDI)/Supplemental Security Income (SSI) provides information on work incentive programs for SSDI and SSI beneficiaries.
- Guardianship
- Guardianship and Alternatives to Guardianship
- North Carolina Judicial Branch - Guardianship offers information on how to become a guardian and what qualifications one must meet to obtain guardianship.
- Supported Decision Making
- Alternatives to Guardianship
- NC Administrative Office of the Courts provides forms that will be used in guardianship proceedings.
- NC Guardianship Association
- Healthcare
- Other Transition Resources
- The Arc of NC provides advocacy and services to people with intellectual and developmental disabilities.
- North Carolina Assistive Technology Program is a program that provides assistive technology services statewide to people of all ages and abilities.
- Foster Care Transition Toolkit
Your voice matters as a caregiver. Caregivers of a child with special health care needs often find themselves the voice of their child in advocating for their rights.
Building Your Advocacy Toolbox: Advocacy vs. Lobbying is a resource to aid families in understanding the difference between advocacy and lobbying and how each may have a role in supporting children with special health needs.
Disability Rights NC advocates for the rights of individuals with disabilities.
Children's Advocacy Centers of North Carolina provide services for abused children.
Guardianship and Alternatives to Guardianship Resources
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North Carolina Judicial Branch - Guardianship offers information on how to become a guardian and what qualifications one must meet to obtain guardianship.
-
The Arc of North Carolina offers a LIFE guardianship program designed to help advocate for and protect the health and safety of individuals to ensure that their civil and human rights are not violated.
Key Questions for Parent Leaders to Ask provides a checklist of questions to ask when developing a leadership role in the special education setting.
Legal Aid of North Carolina provides free legal help to low-income North Carolinians in civil cases involving basic human needs like safety, shelter, income and more.
Parent Keys to Success in the Parent-School Partnership ideas to improve parent-to-professional communication with school staff.
The NC Innovative Approaches Initiative is working to improve the service systems for children and youth with special health care needs, or disabilities, from birth to 21. This system improvement work is being carried out in ten counties by working in partnership with medical providers, community agencies and most importantly, parents of children and youth with special health care needs or disabilities.