1. UCLA Center for Healthier Children, Families & Communities Mental Health Need and Access to Services for Children with Special Health Care Needs Moira Inkelas 1,2 Kandyce Larson 1 Kathryn A. Smith 2,3 Ramesh Raghavan 1,4,5 Susan Igdaloff 6 1 UCLA Center for Healthier Children, Families, and Communities 2 Department of Health Services, UCLA School of Public Health 3 USC University Center for Excellence in Developmental Disabilities, Children’s Hospital Los Angeles 4 UCLA Neuropsychiatric Institute 5 National Center for Child Traumatic Stress 6 Children’s Medical Services, California Department of Health Services

2. UCLA Center for Healthier Children, Families & Communities Mental Health Concerns Children  Psychiatric or behavioral disorders  Risk of psychosocial adjustment problems associated with chronic medical conditions Family members  Financial strain  Caregiver emotional distress or depression  Spill-over of family functioning disruption on siblings

3. UCLA Center for Healthier Children, Families & Communities Objective To examine self-reported need and unmet need for mental health care among CSHCN and their parents/family members

4. UCLA Center for Healthier Children, Families & Communities National Survey of Children with Special Health Care Needs (NS-CSHCN) Designed to describe access and quality of care for CSHCN Sponsored by MCHB, CDC, and NCHS Random-digit-dial telephone interview 750 randomly sampled CSHCN (age 0-17 years) in all 50 states (and DC) Interviews with 38,866 parents in 2000-2001

5. UCLA Center for Healthier Children, Families & Communities Operationalized Definition of CSHCN Having a chronic physical or behavioral condition, lasting or expected to last at least 12 months, that causes at least one of the following consequences: 1)Limited or prevented in ability to function; 2)Needs/uses prescription medication; 3)Needs/uses special therapy such as PT, OT, speech; 4)Needs/uses medical care, mental health, or educational services above what is routine for age; and/or 5)Needs/uses counseling or treatment for ongoing emotional, behavioral, or developmental problem No diagnostic information

6. UCLA Center for Healthier Children, Families & Communities Need for Counseling/Mental Health During the past 12 months, was there any time when (child) needed mental health care or counseling?  Did (child) receive all the mental health care or counseling needed? During the past 12 months, was there any time when you or other family members needed mental health care or counseling due to (child’s) medical, behavioral, or other health condition?  Did you or your family receive all the mental health care or counseling needed?

7. UCLA Center for Healthier Children, Families & Communities Family impact Unmet need INDIVIDUAL PREDISPOSING CONTEXTUAL FACTORS Age Gender Severity Stable vs. changing needs ACCESS AND QUALITY INTERMEDIATE OUTCOME (PROCESS OF CARE) HEALTH CARE RESOURCES AND POLICY General pediatrician supply Pediatric specialty supply EXPERIENCES WITH CARE Family centered care Services well-organized Race/ethnicity Household income Acculturation Parent education FAMILY ENABLING HEALTH CARE ENABLING Insurance coverage Insurance type Medical home Regular provider (knows child best) Usual source Structure Conceptual Model for Access

8. UCLA Center for Healthier Children, Families & Communities Analysis 1)Prevalence of need and unmet need 2)Child and family factors associated with need 3)Child, family, and enabling health care factors associated with unmet need 4)Variation in unmet need by  processes of care  region

9. UCLA Center for Healthier Children, Families & Communities Reported Need for Counseling/Mental Health Need  25% of CSHCN  13% of CSHCN have a parent/family member with need Greater rates of need among older children  Three times as frequent among CSHCN 6-17 years than 0-5 years  Twice as frequent among their parents/other family members Greater rates of need among boys

10. UCLA Center for Healthier Children, Families & Communities Determinants of Mental Health Need Child Family member Child’s condition severity High2.75**3.31** Stability of child’s health needs Sometimes changing1.25**1.44** Always changing1.72**2.20** Number of CSHCN in household More than one1.12*1.24** Child’s race/ethnicity Hispanic (English)0.890.84 Hispanic (Spanish)0.70*0.76 African-American0.83*0.69** Household income 200-299% FPL0.67**0.97 At or above 300% FPL0.62**1.02 Shows adjusted odds ratios. Logit model includes child gender, child age, maternal education. * p<0.05 ** p<0.01

11. UCLA Center for Healthier Children, Families & Communities Reported Unmet Need for Counseling/ Mental Health Unmet need, among those with a reported need  16% of children  20% of parent/family member

12. UCLA Center for Healthier Children, Families & Communities Adjusted Odds Ratios: Unmet Need for Counseling/Mental Health Child Family member Condition severity High1.63**1.60** Stability of child’s health needs Sometimes changing1.29*1.44* Always changing1.62**2.19** Child race/ethnicity Hispanic (English)0.64*0.84 Hispanic (Spanish)0.862.29* African-American1.48*0.91 Household income 100-199% FPL0.790.94 200-299% FPL0.50**0.97 At or above 300% FPL0.40**1.02 Insurance Public0.920.77 Uninsured3.97**3.55** Shows adjusted odds ratios in logit model including child gender, child age, maternal education. * p<0.05 ** p<0.01

13. UCLA Center for Healthier Children, Families & Communities Health Care Factors Associated with Unmet Need Having a provider who knows child best  Greater odds of unmet need among children lacking personal provider, both with usual source of care (OR 1.95) and without usual source (OR 6.90).  Lack of usual source associated with unmet need for parent/family member. Unmet need associated with experiences with care:  Family-centered care  Health services not always easy to use/well organized.

14. UCLA Center for Healthier Children, Families & Communities Limitations Parent self-report may underestimate need. Relying on consumer-based elicitation of need, which may not reflect need as evaluated by providers. Some parents may report need as unmet when the care is ongoing. Children with primary behavioral or psychiatric disorders are combined with children having medical conditions for which behavioral/emotional problems are secondary (e.g., adjustment).

15. UCLA Center for Healthier Children, Families & Communities Conclusions and Implications Mental health/counseling needs of CSHCN are inadequately addressed. Regional and supply issues are implied by regional disparities that persist, even adjusting for family and health care factors. Strategies to improve access and reduce disparities may include improvements in:  Screening  Coordination and family-centeredness of primary and specialty care  Reimbursement