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.
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)
|30% ages 18-24 not insured
(GAO, 3/00 Current Pop Survey)
|312,450 ages 13-17 (SSA, Children Receiving
SSI, June 2002)
||More than 90% of CYSHCN are living to adulthood
||37% attend post secondary school vs 78%
students without disability (NLTS)
||About 30% of adults with disabilities ages
18 to 65 are employed (DOL)
||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
- How are barriers reduced to make transition a smoother
process among interagency and interprofessional groups?