WCH: Children and Youth 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.

Dental Care/Oral Health Resources

• Dental Care for Children with Special Needs
• Dental Home Checklist for Children and Youth With Special Needs
• List of NC Medicaid and Health Choice Dental Providers
• Safety Net Dental Clinics help low income families access dental care
• NC Oral Health Section  provides educational resources or materials to assist children in establishing good oral health habits

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.

Hearing Loss Resources identify resources to help with children's hearing needs.

Learn The Signs. Act Early. Developmental Milestones provides information on important milestones for children up to 5 years of age.

National Alliance of Mental Illness NC offers support groups, helpline and resources for families and individuals affected by mental illness.

NC Infant-Toddler Program is 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.

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/Health Choice (CHIP) 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 help 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.

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.

Accessible Parks for Individuals with Special Needs and Physical 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.

Camps for Children with Developmental Disabilities

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.

• Down Syndrome Association of Greater Charlotte
• Piedmont Down Syndrome Support Network
• Triangle Down Syndrome Alliance

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.

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.

Hearing Loss Resources identify resources to help with children's hearing needs.

National Alliance of Mental Illness NC offers support groups, helpline 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.

NC Fetal Alcohol and Prevention Program provides diagnostics and support to individuals with FASDs and their families.

NC Kids Adoption and Foster Care Network helps 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, opportunities and by decreasing health disparities.

North Carolina Assistive Technology Program provides assistive technology services to people of all ages and abilities.

North Carolina's Family to Family Health Information Center helps families of CYSHCN to obtain support, advocacy and information about the health care and other related systems.

North Carolina Statewide Independent Living Council develops and supports a statewide network of Centers for Independent Living.

TEACCH Autism Program provides screening and evaluation services, parent support and education, intervention services, professional consultation and training, along with other related resources.

TEDI BEAR Children's Advocacy Center provides services to children who have been abused and neglected.

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.

Exceptional Children Preschool Program provides services for children preschool-age who have special needs.

Elementary to Middle or Junior High School Transition Planning

Guardianship and Alternatives to Guardianship Resources

• 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.
• 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.
• Guardianship and Alternatives for Decision-Making Support
• Duties of a Guardian provides information on the basic duties of a guardian of an individual and a guardian of an estate.
• NC Administrative Office of the Courts provides forms that will be used in guardianship proceedings.
• 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.

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.

• Exceptional Children's Assistance Center
• Disability Rights NC

Middle and High School Transition Planning

North Carolina Assistive Technology Program provides assistive technology services to people of all ages and abilities.

NC Department of Public Instruction (DPI) 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 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.

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 home, as an alternative to nursing home placement.

Elementary to Middle or Junior High School Transition Planning

Employment and Transition

Foster Care and Transition

Independent Living for People with Disabilities offers resources and supports to help individuals become more independent in their home and in the life of their family and community.

Middle and High School Transition Planning

North Carolina Assistive Technology Program is a program that provides assistive technology services statewide to people of all ages and abilities.

The Arc of NC provides advocacy and services to people with intellectual and developmental disabilities.

Guardianship and Alternatives to Guardianship Resources

• 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.
• 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.
• Guardianship and Alternatives for Decision-Making Support
• Duties of a Guardian provides information on the basic duties of a guardian of an individual and a guardian of an estate.
• NC Administrative Office of the Courts provides forms that will be used in guardianship proceedings.
• NC Guardianship Association trains and supports individuals who are court-appointed guardians.

Transition to Adulthood: A Health Care Guide for Youth and Families

Transition to Adulthood: Where Do We Start?

Transition from Pediatric Care to Adult Care Resources

• Finding Adult Providers (English)
• Finding and Using Adult Health Care
• Chart with Differences between Pediatric and Adult Health Care
• Planning to Move from Pediatric to Adult Care Factsheet
• Questions to Ask your Doctor About Transitioning
• Moving Into Adult Health Care - What Do Parents Need to Know?
• Transitioning CSHCN from Pediatric to Adult Care

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

• 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.
• 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.

The Children and Youth Branch partners with other departments, agencies and the community to provide resources to families of children with special health care needs. Calendars listed are from partnering agencies who work with children and youth with special needs. Please contact each agency listed for more information.

• Autism Society of North Carolina
• Brain Injury Association of NC
• Disability Rights NC
• Duke Center for Autism and Brain Development
• Exceptional Children’s Assistance Center (ECAC)
• Legal Aid of North Carolina