1. Center for Children with Special Needs 1 Medicaid managed care for children with special health care needs: Which services need to improve? Jacquie Stock, MPH Ginny Sharp, MA Stacey DeFries, MSW Becky McAninch-Dake

2. Center for Children with Special Needs 2 Objectives Response to national performance measures. Establish source for monitoring quality of Medicaid managed care for children with special health care needs (CSHCN). Identify strategies for improving quality in systems of care.

3. Center for Children with Special Needs 3 CAHPS® 2.0H Child Survey Initiated 1995 by –Agency for Health Care Policy and Research –Centers for Medicare & Medicaid Services “set of standardized surveys that assess patient satisfaction with the experience of care” (HEDIS ®-Health Plan Employee Data and Information Set, a registered trademark of NCQA.) A need to monitor and report on quality of health services across health plans.

4. Center for Children with Special Needs 4 Child Survey Questions Consumers Rate –all health care from plan –health plan –personal doctor or nurse –specialist seen most often Areas covered –courteous and helpful staff –customer service –getting care quickly –getting needed care –how well doctors and other providers communicate

5. Center for Children with Special Needs 5 Children with Chronic Conditions Measurement Set Access to prescription medication Access to specialized services Family centered care –personal doctor or nurse who knows child –shared decision making –getting needed information Coordination of care CSHCN Screener

6. Center for Children with Special Needs 6 CSHCN Screener 15 question survey based screening tool Designed to identify CSHCN –According to Maternal Child Health Bureau definition Development –3 years –30 organizations coordinated by Foundation for Accountability (FACCT)

7. Center for Children with Special Needs 7 Who Qualifies as a CSHCN? Needs or uses prescription medications AND –need due to medical, behavioral or other health condition –duration or expected duration of condition is at least 12 months Needs or uses more medical care, mental health or education services than usual AND… Limited or prevented in ability to do things AND… Needs or gets special therapy (OT, PT, Speech) AND … Any emotional, developmental, or behavioral problem for which treatment or counseling needed AND …

8. Center for Children with Special Needs 8 Methods and Sample Random sample, children 0-12 Yrs, enrolled in Washington State Medicaid managed care health plans Children with a probable chronic condition are over-sampled Mail or telephone to parent/guardian Response rates –contact rate=47% –complete response rate=93% (n=7,119)

9. Center for Children with Special Needs 9 How Children Qualified on the CSHCN Screener 33% (2,377) met CSHCN Screener

10. Center for Children with Special Needs 10 Number of ways children qualify on CSHCN Screener “Definition Types” Dependency –upon prescription medication Service Use –medical care, mental health, educational, special therapy, treatment or counseling for emotional, developmental, behavioral problem Functional Limitations

11. Center for Children with Special Needs 11 Number of CSHCN Screener Definitions Met

12. Center for Children with Special Needs 12 Differences in Samples of CSHCN and Non-CSHCN CSHCN older –9.24 mean yrs vs. 7.88 yrs (p<.000) School age vs. early intervention age (0-35 months) –91% vs. 80% OR=2.64 CI 2.25, 3.10 Male –63% vs. 50% OR=1.654 CI 1.495, 1.83 “White” non-Hispanic vs. not –75% vs. 68% OR=1.394 CI 1.25, 1.56

13. Center for Children with Special Needs 13 Respondents with CSHCN and Non-CSHCN Differ not parent of child –11% vs. 5% OR=2.33CI 1.862, 2.678 45 yrs or older vs. less than 45 yrs –17% vs. 12%OR=1.58CI 1.38, 1.82 female –92% vs. 90%OR=1.33CI 1.11, 1.59 HS grad vs. not –89% vs. 86%OR=1.36CI 1.16, 1.58 English as primary language –95% vs. 86%OR=3.22CI 2.61, 3.97

14. Center for Children with Special Needs 14 Rating Providers At plan entry, big vs. small/no problem getting personal doctor or nurse you’re happy with. –CSHCN 11% vs. 6% n=3,127 OR 1.74 CI 1.32, 2.3 Personal doctor or nurse rated 0-5 vs. 6-10 (0=worst). –CSHCN 8% vs. 6%n=5,702 OR 1.43CI 1.15, 1.78 Multivariate analysis controlling for child and respondent demographic factors.

15. Center for Children with Special Needs 15 Health care from all docs/providers rated 0-5 vs. 6-10. –CSHCN 10% vs. 6%n=5,405 OR 1.8CI 1.46, 2.22 Providers respect what you say, sometimes/never vs. usually/always. –CSHCN 8% vs. 6%n=5,371 OR 1.48CI 1.18, 1.85 –English not primary language OR=1.67 CI 1.17, 2.37 Multivariate analysis controlling for child and respondent demographic factors.

16. Center for Children with Special Needs 16 Big vs. Small/No Problem Getting Needed Care Getting care you or doctor believed child needed –CSHCN 5% vs. 2%n=5,407 OR 3.24CI 2.32, 4.53 –English not primary language OR1.88CI 1.11, 3.18 Getting child’s prescription medicine –CSHCN 8% vs. 3%n=4,304 OR 2.67CI 1.96, 3.65 Multivariate analysis controlling for child and respondent demographic factors.

17. Center for Children with Special Needs 17 Getting OT, PT, Speech –CSHCN 22% vs. 13%n=480 OR 2.14CI 1.17, 3.92 –Respondent is high school graduate OR 2.99CI 1.02, 8.67 Getting referral to specialist –CSHCN 14% vs. 9%n=1,780 OR 1.73CI 1.25, 2.39 –English not primary language OR 1.77CI 1.03, 3.03 Delays in child’s care while waiting for plan approval –CSHCN 6% vs. 2%n=5,390 OR 2.99CI 2.15, 4.17 Big vs. small or no problem… Multivariate analysis controlling for child and respondent demographic factors.

18. Center for Children with Special Needs 18 Got needed help or advice sometimes/never vs. usually/always when called doctor or nurse –CSHCN 12% vs 10% n=4,534 OR 1.37CI 1.12, 1.67 –Child ethnicity other than “white non- Hispanic” OR 1.33CI 1.07, 1.65 –English not primary language OR 2.18CI 1.60, 2.97 Multivariate analysis controlling for child and respondent demographic factors.

19. Center for Children with Special Needs 19 Customer Service Big vs. small or no problem … Multivariate analysis controlling for child and respondent demographic factors. Called or wrote plan with complaint or problem –CSHCN 8% vs. 3% n=6,848 OR 2.78CI 2.20, 3.52 Getting help from customer service –CSHCN 21% vs. 10% n=1,168 OR 2.15CI 1.52, 3.03 –Birth up to three years OR.58CI.34,.98 –English not primary language OR.38CI.15,.92

20. Center for Children with Special Needs 20 Finding or understanding written information from plan –CSHCN 11% vs. 7%n=1,360 OR 1.73CI 1.15, 2.60 Problem with paperwork from plan –CSHCN 16% vs. 9%n=1,422 OR 1.88CI 1.34, 2.63 –Birth up to three years OR.5CI.29,.87 –High school grad vs. not OR.54CI.33,.90

21. Center for Children with Special Needs 21 Most rate experiences with health plan high, but respondents with CSHCN more likely to rate all experiences from health plan lower. N=6,817 OR 1.63 CI 1.38, 1.92

22. Center for Children with Special Needs 22 Guided by these findings, health plans can improve services for CSHCN and families by identifying procedures within the plan that may result in delayed care, not getting care, and how paperwork and communication can improve for families.

23. Center for Children with Special Needs 23 Contact Information: Jacquie Stock, MPH Research Associate Center for Children with Special Needs Children’s Hospital and Regional Medical Center (206) 987-5327 jacquie.stock@seattlechildrens.org Stacey DeFries, MSW Assessment Coordinator Children with Special Health Care Needs Program Washington State Department of Health (360) 236-3559 stacey.de_fries@doh.wa.gov