Children and Youth with Special Health Care Needs (CYSHCN) are "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." [McPherson: 1998] The National Survey of Children with Special Health Care Needs 2009/2010 found 15.1% of the nation's children met this definition of children with special health care needs. Child Health Data National Survey of CSHCN The prevalence of children who meet criteria as CYSHCN, particularly if one does not include those deemed "at-risk," increases with age as chronic conditions develop and their needs for healthcare increase.

CYSHCN include those with common, uncommon, and rare conditions. The Diagnosis Prevalence List extrapolates from published prevalence rates to predict the number of children with given conditions that would be expected in a pediatric practice (and allows you to change the total panel size to match your practice). The Medical Home Portal aims to help clinicians find useful information and resources to help them care for CYSHCN in partnership with their families, including children with uncommon and rare conditions.

The number of CYSHCN cared for by a primary care clinician and how often they are seen will depend on a number of factors, including the local prevalence of CYSCHN, how welcome their families feel in the practice, referrals by subspecialists, the breadth of insurance plans, including Medicaid and CHIP, with which the practice contracts, etc. Since the number of children in a pediatric practice usually ranges from about 1,800 to 2,500, the number of CYSHCN cared for by a given pediatrician would be expected to range from about 250 to 400.

Myriad resources exist to guide clincians and to educate and support parents as they strive to provide the best care possible to assure optimal outcomes for their CYSHCN and their families. However, finding reliable, up-to-date information can be challenging, particularly when a lot of unreliable information is readily available. Finding helpful resources and local service providers, incuding pediatric specialty services, can be very difficult. We hope that this website will help – use the Feedback button at the bottom of the page to let us know how we can better serve your needs.