A profile of children and youth with special health care needs
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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


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Healthy People 2010 NeedsChildren & 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


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Definition of Special Needs 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


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Gender, Ethnic, Age, and Socioeconomic Differences Needs

  • 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


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Adolescent Health Issues & SHCN Needs

  • 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


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Adolescent Health Issues & SHCN Needs

  • 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


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Impact of Special Health Care Needs 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


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Special Services Needed Needs

  • 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


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CYSHCN: Type of Special Need, Ages 0-17, 2001 Needs

Source: NS-CSHCN , 2001


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CYSHCN: Needed Services, Ages 0-17, 2001 NeedsParents reported on a time in the past year when their child needed the following services

Source: NS-CSHCN , 2001


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CYSHCN Medical Care NeedsMCHB Measures of Success

  • Health Insurance

  • Medical Home

  • Transition to Adulthood

Source: MCHB



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Medical Home Needs

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


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Medical Home: Stats Needs

  • 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


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Usual Source of Care for CYSHCN, NeedsAges 0-17, 2001

Source: NS-CSHCN , 2001


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Personal Doctor or Nurse Needs

  • 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


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Ease in CYSHCN Obtaining Needed Referrals, Ages 0-17, 2001 Needs

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


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Effective Care Coordination Needs

  • 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


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Receipt of Family-centered Care Needs

  • 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


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From Pediatric to Adult Health Care Needs

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


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Challenges with YSHCN Transition to Adult Health Care Needs

  • 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


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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


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Insurance Sources for YASHCN Needs (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


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Next Steps and Policy Priorities for CYSHCN Needs (YASHCN)

  • 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.


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Resources Needs (YASHCN)

  • 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/


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References Needs (YASHCN)

  • 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


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References Needs (YASHCN)

  • 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.


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References Needs (YASHCN)

  • 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.


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National Adolescent Health Information Center Needs (YASHCN)and Public Policy Analysis & Education Center for Middle Childhood, Adolescent & Young Adult Health

WEB SITES:

http://nahic.ucsf.edu/

http://policy.ucsf.edu/

EMAIL:

[email protected]

[email protected]

PHONE: (415) 502-4856


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