Children/Youth with Special Health Care Needs
SECTIONS: Introduction ~ Resources
Introduction
Children with special needs have such a range of abilities and needs—no one description captures all. Some children's conditions are very severe while most are mild or moderate. Some disabilities or chronic illnesses affect only a few areas, others affect many body systems. For example, a child with a hearing impairment may have few or no other special needs. Or a child may have such significant needs that all health recommendations and care need to be adapted to be effective.
The federal Maternal and Child Health Bureau defines children and youth with special health care needs (CYSHCN) 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 or amount beyond that required by children generally."1
A 2009/2010 national survey indicates that fifteen percent of children—more than 11 million—in the United States between birth and age 17 have a special health care need—one in five households.2
Children and youth with special health care needs (CYSHCN) are addressed throughout Bright Futures. Sometimes this occurs in sections specially focused on special needs and most often in recommendations for all children. Two areas of special note: the importance of screening and early identification of special needs and regular well-child care (such as regular health visits, immunizations) including guidance to families. Bright Futures fully recognizes the importance of partnerships with all families but especially families of CYSHCN. Families of CYSHCN usually take more extensive roles in their children’s care and use both regular and specialty care services more frequently.
Now it is recognized that important as specialty care for a child’s special needs is, regular well-child care is essential. In addition, of course, CYSHCN may need special therapies, medications, and treatment. However, many of today’s challenges affect all children with or without special needs—overweight, lack of physical activity, too much "screen time," and oral disease. While of course some children with special needs will need specialized approaches, most can benefit from the same or similar advice, strategies, and resources.
Today most children with special needs have normal or close to normal life spans. Families expect their children to live lives similar to those of others, with plans for adulthood. Helping children to be as healthy as possible, even with health challenges, will minimize secondary health problems now and in the future.
1 McPherson M, Arango P, Fox H et al. A new definition of children with special health care needs. Pediatrics. 1998; 102 : 137-140.
2 National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved [4/4/12] from www.childhealthdata.org.
Resources
The Center for Children with Special Needs: The Center provides information to families and professionals focusing on children who have chronic physical, developmental, behavioral or emotional conditions such as asthma, cancer, autism, or cerebral palsy. Find information on diagnoses, organize medical information with a Care Notebook, create a plan of care, find support through others with similar experiences, or look up community-based resources.
Disability.Gov: Disability information by topic, with connections to resources by state.
Exceptional Parent: A monthly magazine (subscription), and hosts an on-line library of resources and information to improve the lives of children and youth with special needs. 800-372-7368
Family-to-Family Health Information Centers: Federally-funded, parent-run centers providing information and resources to families of CYSHCN; addressing medical home, health care financing, early and periodic screening, navigating community resources, transition to adult life, and parent/provider partnerships. Find the F2F HIC in your state. 888-835-5669
Family Voices: A national network working to keep families at the center of children's healthcare and that promotes the family-provider partnership that is so essential to family-centered care. 888-835-5669
Federation of Families for Children's Mental Health: Provides advocacy, leadership, and technical assistance to support children and youth with mental, behavioral, and emotional health needs and their families. Find your state chapter. 240-403-1901
Genetic Alliance: A health advocacy organization that provides a range of resources and services to individuals, families, professionals, and genetic support organizations. 202-966-5557
Got Transition? The National Healthcare Transition Center: Tips and tools to support and coordinate a smooth transition to adult healthcare services for youth—especially those with special needs—families, and providers. 603-228-8111
Learning Disabilities Association of America: Provides information, resources, solutions, and support for individuals with learning disabilities, their families, teachers, and others. Includes links to state chapters. 412-341-1515
Medline: U.S. National Library of Medicine provides health databases, information, and research. 888-346-3656 or TDD 800-735-2258
National Center for Ease of Use of Community-Based Services: Works with state Title V directors, service providers, and families of CYSHCN to ensure community-based services are easy to access. 617-287-4300
National Center for Family/Professional Partnerships: A project of Family Voices that provides leadership in helping families of CSHCN and professionals partner together in decision-making by increasing the capacity of families, Title V and other providers to partner around full implementation of ACA; strengthening the primary care workforce through family and professional learning opportunities; and improving access to quality care and innovation in the areas of family-centered care, cultural and linguistic competence and shared decision making. 888-835-5669
National Center for Hearing Assessment and Management: Provides links to screening programs in each state, information about the types of testing used to screen for and identify hearing loss, and family support resources. 435-797-3584
National Dissemination Center for Children with Disabilities (NICHCY): Provides research-based information about specific disabilities, programs, and services, including early intervention, special and general education law, and state-specific resources. 800-695-0285
National Family Caregivers Association: Information, resources, and support, for family members who provide care to family members with disabilities, special health needs, and chronic illness. 800-896-3650
Parent Technical Assistance Center (PTAC): A national network of Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs). Provides information about early intervention, special education, the Individuals with Disabilities Education Act (IDEA), and other resources. Assists families of children with all disabilities, birth to 26. 888-248-0822/TTY or 952-838-0190
Parent-to-Parent USA (P2P USA): Emotional support and information for families raising children with special needs. Includes links to P2P program in your state.
Sibling Support Project: A national project that provides supports to brothers and sisters of individuals with a variety of special needs. Offers workshops, publications, and a variety of listserv supports for children, adult siblings, and parents. 206-297-6368
Specialized Training of Military Parents (STOMP): A federally-funded Parent Training and Information (PTI) Center established to assist military families who have children with special education or health needs. 800-5-PARENT (V/TTY)
The ARC: Information about civil rights, education, long-term supports, housing, healthcare, and more for individuals with developmental disabilities, their families, providers, and others. Includes links to state chapters. 800-433-5255