A Profile of Children and Youth with Special Health Care Needs

1. A Profile of Children and Youth with Special Health Care Needs National Adolescent Health Information Center and The Public Policy Analysis & Education Center for Middle Childhood, Adolescent & Young Adult Health, Department of Pediatrics & Institute for Health Policy Studies University of California, San Francisco

2. Healthy People 2010Children & Youth with Special Health Care Needs • Increase the proportion of children and youth with disabilities who spend at least 80% of their time in regular education programs (obj # 6-9). • Increase the number of youth with disabilities that complete high school (obj # 7-1). • Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed (obj # 6-2) . • Increase the proportion of children with mental problems who receive treatment (obj # 18-7). Source: HP 2010 Database

3. Definition of Special NeedsMaternal and Child Health Bureau (MCHB) • 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 children and youth generally. Source: Healthy & Ready to Work

4. Gender, Ethnic, Age, and Socioeconomic Differences • Males are more likely to have special needs than females. • Latino youth have lower prevalence of special needs than White and Black youth. • Children ages 6-17 had higher prevalence of special needs than children aged 0-5 years. • Children in lower-income families have higher prevalence of special needs than children in non poor families. Source: van Dyck et al., 2004

5. Adolescent Health Issues & SHCN • Sexuality: By age 16, 24% of males and 3% of females with mental disabilities are sexually experienced compared to 41% of females and 38% of males without mental disabilities of similar age. • Substance Use: Youth with learning disabilities have higher incidence of tobacco/marijuana use than youth without learning disabilities. Sources: Coren, 2003; YRBS, 2006; Maag et al., 1994

6. Adolescent Health Issues & SHCN • Mental Health: 29% of YSHCN have parent-reported emotional, developmental, or behavioral problems (EBD). The prevalence of EBD problems greatest among children living in poverty, adolescents aged 12-17, and males. • Juvenile Justice: Between 40% - 70% of youth in the juvenile justice system have mental health problems, 25% of which experience disorders so severe that functioning is significantly impaired. Sources: CDC, 2005; Focal Point, 2006

7. Impact of Special Health Care Needs • 21% of families with CYSHCN report financial problems due to their child’s health condition. • 23% of CSHCN are affected usually, always, or a great deal by their conditions. • Parents of CSHCN are less likely to be employed full-time. • 21% of children have a limitation in their ability to do the things most children of the same age can do. Source: van Dyck et al., 2004; NS-CSHCN, 2001

8. Special Services Needed • Parents identified a condition that has lasted at least 1 yr; and child had at least one of the following consequences of the condition: The use of or need for • prescription medication; • more medical care, mental health services, or education services than other children of the same age; • treatment or counseling for an emotional, developmental, or behavioral problem; • special therapy (physical, occupational, or speech therapy). Source: NS-CSHCN , 2001

9. CYSHCN: Type of Special Need, Ages 0-17, 2001 Source: NS-CSHCN , 2001

10. CYSHCN: Needed Services, Ages 0-17, 2001Parents reported on a time in the past year when their child needed the following services Source: NS-CSHCN , 2001

11. CYSHCN Medical CareMCHB Measures of Success • Health Insurance • Medical Home • Transition to Adulthood Source: MCHB

12. Type of Insurance Coverage for CYSHCN, Ages 0-17, 2001 Source: NS-CSHCN , 2001

13. Medical Home 5 components define a medical home: • Usual Source of Care • Having a usual place to go for sick and well-child visits • Personal Doctor or Nurse • Having a consistent relationship with a doctor or nurse • Ease in Obtaining Needed Referrals • Coordinated and timely access to specialty care • Effective Care Coordination • Coordinating and monitoring services for CYSHCN • Receipt of Family Centered Care • Families are provided with appropriate information to help make health decisions Source: Strickland et al., 2004

14. Medical Home: Stats • 53% of of CYSHCN (under age 18) are receiving care that meets the medical home definition, this significantly differs by poverty level, race/ethnicity, and degree of disability. Source: Strickland et al., 2004

15. Usual Source of Care for CYSHCN, Ages 0-17, 2001 Source: NS-CSHCN , 2001

16. Personal Doctor or Nurse • 90% of CYSHCN were reported to have a personal doctor or nurse with significant variation by poverty, race/ethnicity, and activity limitation: • 82% of poor children have a personal doctor or nurse compared to 91% of non-poor children. • 90% of White children had a personal doctor or nurse compared to 86% of Black children. • 87% of children who had significant activity limitations had a personal doctor or nurse compared to 90% of children without activity limitations. Source: Strickland et al., 2004

17. Ease in CYSHCN Obtaining Needed Referrals, Ages 0-17, 2001 CYSHCN tend to need referrals for specialty care; difficulty accessing needed care increases with poverty status, race/ethnicity, and degree of disability. Sources: NS-CSHCN, 2001; Strickland et al., 2004

18. Effective Care Coordination • Children with significant activity limitations (33%) are significantly less likely to receive adequate care coordination, compared to 54% of CSHCN without significant activity limitations. • 42% of parents of Black CSHCN reported adequate care coordination, compared to 39% of parents of White CSHCN. • 42% of parents of non-poor children reported adequate care coordination, compared to 39% of poor children. Source: Strickland et al., 2004

19. Receipt of Family-centered Care • 67% of parents of CSHCN reported doctors provided all elements of family-centered care. • 50% of poor children receive family-centered care, compared to 75% of non-poor children. • Hispanic 53% and Black 58% families of CYSHCN were less likely to receive family-centered care than White families of CYSHCN (71%). Source: Strickland et al., 2004

20. From Pediatric to Adult Health Care National recommendations call for: • education for patients, families, and providers, to highlight importance of developmentally-appropriate and coordinated transition. • identify health care professionals responsible for care-coordination, health care services, and future health care planning. • affordable, continuoushealth insurance coverage throughout adolescenceand adulthood. Sources: JAH, 2003; AAP, 2002; Blum, 2002

21. Challenges with YSHCN Transition to Adult Health Care • Transition is prompted by age—not readiness. • Lack of research on successful transitions. • Adolescent resistance to transition to an adult provider. • Family resistance to transition to an adult provider. • Difficulty identifying adult primary care providers. • Insurance coverage variation from age 18-25. Source: Reiss et al., 2005; Scal, 2002

22. Insurance Coverage for Young Adults with Special Health Care Needs (YASHCN) • Compared to young adults without special needs, YASHCN: • Have slightly lower uninsurance rates (26% vs. 28%). • Are 8 times more likely to have an unmet health care need and 6 times more likely to not have a usual source of care. • Are more likely to report unmet health care needs due to cost (35% vs. 15%). Source: Callahan & Cooper, 2006

23. Insurance Sources for YASHCN • Many CYSHCN must navigate a complex and fragmented insurance system. For example: • Many YSHCN qualify for Medicaid through participation in children’s Supplemental Security Income (SSI) program. • At age 18 adolescents’ eligibility is reviewed and must meet criteria to continue with adult SSI. • An estimated 1/3 fail to meet the adult SSI criteria which jeopardizes Medicaid eligibility. • Many CYSHCN utilize a patchwork of insurance coverage to get their needs met. Source Schulzinger, 2000

24. Next Steps and Policy Priorities for CYSHCN • Eliminate gaps in the insurance coverage and health care services for CYSHCN. • Implement multi-faceted approaches to improve health care for CYSHCN, based on SAM & AAP recommendations and medical home criteria.

25. Resources • For more information about the 21 Critical Health Objectives and the National Initiative to Improve Adolescent & Young Adult Health, visit: http://nahic.ucsf.edu/nationalinitiative/ or http://www.cdc.gov/HealthyYouth/AdolescentHealth/NationalInitiative/ • For more resources on CYSHCN, visit: • Non-Federal Resources http://nahic.ucsf.edu/index.php/niiah/article/non_federal_resources/ • Partner Resources Database http://nahic.ucsf.edu/index.php/partner_resources/

26. References • American Academy of Pediatrics Committee on Children with Disabilities. (1999). Care coordination: Integrating health and related systems of care for children with special health care needs. Pediatrics;104(4):978-81. • AAP Policy Statement (2002). A Consensus statement on health care transitions for young adults with special health care needs. Pediatrics; 110(6):1304-1306. • Blum RW. (2002). Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care. Pediatrics;110(6 Pt 2):1301-3. • Callahan TS and Cooper WO. (2006). Access to health care for young adults with disabling chronic conditions. Pediatrics; 160:178-182. • Centers for Disease Control and Prevention. (2005). Mental health in the united states: Health care and well being of children with chronic emotional, behavioral, or developmental problems. MMWR; 54(39):985-89. • Coren C. (2003). Teenagers with mental disability lack reproductive education and knowledge; still, many have had sex. Perspectives on Sexual and Reproductive Health; 35(4):187-88. • Davidoff, A. (2004). Insurance for children with special health care needs: Patterns of coverage burden on families to provide adequate insurance. Pediatrics;114:394-403. • Healthy and Ready to Work (2005). Definition of CYSHCN. Healthy and Ready to Work website. Accessed 6/28/06 at: http://www.hrtw.org/systems/def_cyshcn.html

27. References • JAH Position Paper (2003).Transition to adult health care for adolescents and young adults with chronic conditions. Journal of Adolescent Health;33:309-11. • Healthy People 2010 [Database on-line] Accessed 6/29/06 at: http://wonder.cdc.gov/data2010/focus.htm • Maag JW, Irvin DM, Reid R, & Vasa SF. (1994). Prevalence and predictors of substance use: A comparison between adolescents with and without learning disabilities. Journal of Learning Disabilities; 27(4):223-34. • MCHB Website Fact Sheet on Children with Special Needs. Accessed 6/28/06 at: ftp://ftp.hrsa.gov/mchb/factsheets/dschsn.pdf • Newacheck P, and Kim SE. (2005). A national profile of health care utilization and expenditures for children with special health care needs. Archives of Pediatrics and Adolescent Medicine;159:10-17. • Reiss JG, Gibson RW, and Walker LR. (2005). Health care transitions: Youth, family, and provider perspectives. Pediatrics;115(1):112-20. • Research Training Center on Family Support and Children’s Mental Health.(2006). Focal Point: Research, Policy, and Practice in Children's Mental Health. Corrections. Summer 20(2).Accessed 7/3/06 at: http://www.rtc.pdx.edu/PDF/fpS06.pdf • Scal P. (2002). Transition for youth with chronic conditions: Primary care physicians’ approaches. Pediatrics;110(6 Pt 2):1315-21.

28. References • Schulzinger R. (2000). Youth with disabilities in transition: Health insurance options and obstacles. An occasional policy brief of the Institute for Child Health Policy, Gainesville, FL. • Strickland B, McPherson M, Weissman G, van Dyck P, Huang Z, and Newacheck P. (2004). Access to the medical home: Results from the national survey of children with special health care needs. Pediatrics;113(5):1485-92. • U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2001. Rockville, Maryland: U.S. Department of Health and Human Services, 2004. • van Dyck PC, Kogan MD, McPherson MG, Weissman GR, & Newacheck PW. (2004). Prevalence and characteristics of children with special health care needs. Archives of Pediatrics and Adolescent Medicine;158:884-90.

29. National Adolescent Health Information Center and Public Policy Analysis & Education Center for Middle Childhood, Adolescent & Young Adult Health WEB SITES: http://nahic.ucsf.edu/ http://policy.ucsf.edu/ EMAIL: nahic@ucsf.edu policycenter@ucsf.edu PHONE: (415) 502-4856