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  Definition of CYSHCN

Children and Youth with Special Health Care Needs

MCHB defines CYSHCN as those who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions who require health and related services of a type or amount beyond that required by CY generally.

[McPherson, M., et al. (1998). A New Definition of Children with Special Health Care Needs. Pediatrics. 102(1);137-139. www.pediatrics.org/search.dtl]

Who Are CYSHCN and How Are They Doing?

Title V CSHCN: 970,044 (Title V Block Grant FY 2000 Annual Report and FY 2002 Application)

Health Insurance:

30% ages 18-24 not insured (GAO, 3/00 Current Pop Survey)
SSI Recipients:

312,450 ages 13-17 (SSA, Children Receiving SSI, June 2002)
Surviving: More than 90% of CYSHCN are living to adulthood (Newacheck, 1998)

Education: 37% attend post secondary school vs 78% students without disability (NLTS)

Employment: About 30% of adults with disabilities ages 18 to 65 are employed (DOL)

Barriers: Access to health care insurance is the primary barrier to keeping people with disabilities from working (PTFEAD, Re-Charting the Course, November 1998)


State Title V CSHCN & Transition: Questions/Impact

  • What leadership roles are State Title V CSHCN Programs undertaking to facilitate change among agencies, consumer leadership organizations, internal staff development and the families and youth that they serve?

  • What does this new model of family-centered care and youth centric services look like?

  • Are there successful models incorporating family centered care principals, while accommodating the needs of the youth with special health care needs and disabilities?

  • Based on the belief that youth and families can change the way health care is provided, what types of information and skills are required to assist adolescents and young adults with complex health needs and disabilities to transition successfully to adulthood, adult health care, employment and full inclusion in the community?

  • What kinds of supports are there for families AND YOUNG PEOPLE as they move through health transition?

  • What are the health care skills youth need to know to become the managers of THEIR (his or her) own health care?

  • What happens to insurance when an adolescent leaves high school?

  • How are barriers reduced to make transition a smoother process among interagency and interprofessional groups?

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The HRTW Center is headquartered at the Maine State Title V CSHN Program. Activities are coordinated through the Maine Support Network's Center for Self-Determination, Health and Policy. The Center is funded through a cooperative agreement (U39MC06899-01-00) from the Integrated Services Branch, Division of Services for Children with Special Health Care Needs (DSCSHN) in the Federal Maternal and Child Health Bureau (MCHB), Health Resources and Service Administration (HRSA), Department of Health and Human Services (DHHS).
Lynda Honberg, HRSA/MCHB Project Officer.