1. Results of the Title V Five Year Needs Assessment Dr. Manda Hall, MD Title V Maternal and Child Health Director Raquel Flores Research Specialist Texas Department of State Health Services

2. CSHCN Definition “Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally” Health Resource Services Administration Maternal and Child Health Bureau 2

3. CSHCN Services Program 3 Mission To support family-centered, community-based strategies for improving the quality of life for children with special health care needs and their families

4. Children with Special Health Care Needs (CSHCN) Services Program  Components/Services:  Health Care Benefits  Case Management  Regional Staff  Community-Based Contractors  Family Support and Community Resources  Community-Based Contractors  Other statewide initiatives and activities 4

5. Guiding Principles of 5 Year Needs Assessment  ALL analyses would be informed by and utilize the Life Course Perspective  A child is not a product of the moment around him/her, but a product of this moment and the risk and resiliency that has been established over the course of his/her development  Children and youth with special health care needs (CYSHCN) have the same needs as the community.

6. 5 Year Needs Assessment (2014-2015) Analysis of Existing State and National Data Sources 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN) CSHCN Services Program Parent Outreach Survey First implemented in 2014 Updated in 2016 (Annually) Regional Stakeholder Meeting Parent Focus Groups Lubbock, San Antonio (2), Temple, Jasper, Houston (2), El Paso, Laredo, and Dallas (2) for large urban, urban, and rural representation El Paso, Laredo and Dallas (1) in Spanish

7. Results: CSHCN SP Title V Performance Measures  Percent of children with and without special health care needs having a medical home  Percent of adolescents with and without special health care needs who received services necessary to make transitions to adult health care  Percent of CYSHCN and their families who received the supports and services necessary to be integrated in their communities 7

8. Medical Home

9. What is a Medical Home?  An approach to providing comprehensive primary care that facilitates partnership between patients, physicians, and families  Care should be:  Accessible  Family-centered  Continuous  Comprehensive  Coordinated  Compassionate  Culturally effective 9 AAP; National Center for Medical Home Implementation

10. Medical Home Outcomes CYSHCN OUTREACH SURVEYCYSHCN PARENT FOCUS GROUPS 90.8% have a place where they usually go for child health advice Most parents have not heard of a care coordinator (4 out of 102 had). 20.7% said their medical provider is too far away 81.5% make sure their child gets all they care they need by themselves 10 2009/10 National Survey of Special Health Care Needs (2009/10 NS-CSHCN) TXUS Children receiving their care within a medical home40.1%43%

11. Who Ensures Your Child Receives the Care He/ She Needs? 11 CYSHCN Outreach Survey

12. Medical Home Outcomes 12  Children who received care within a medical home were:  More likely to have consistent and adequate public or private insurance (73.2% vs. 47.7%)  More likely to meet the outcome for family partnerships (93.9% vs. 54%)  More likely to be screened early and continuously for special health care needs (82.4% vs. 74.7%)  More likely to easily access community based services (78.2% vs. 42.4%)

13. Barriers Related to Medical Home  Provider shortages (primary and specialty physicians)  Dental providers  Mental health providers and services  Need for case managers  Lack of provider willingness to work with CYSHCN  Delays in care associated with lack of coordination  Trusting care coordination to another person Texas Title V Five Year Needs Assessment 13

14. Health Care Transition

15. Got Transition Six Core Elements of Health Care Transition 2.0 1. Transition Policy 2. Transition Tracking and Monitoring 3. Transition Readiness 4. Transition Planning 5. Transfer of Care 6. Transfer Completion Got Transition www.gottransition.org 15

16. Got Transition Six Core Elements of Health Care Transition 2.0 1. Transition Policy Sample Policy 2. Transition Tracking and Monitoring Sample Registry and Patient Flow Sheet 3. Transition Readiness Transition Readiness Assessments for Youth or Parent / Caregivers 4. Transition Planning Sample Plan of Care, Medical Summary, Emergency Care Plan, Condition Fact Sheet 5. Transfer of Care Transfer of Care Checklist, Sample Transfer Letter 6. Transfer Completion Transition Feedback Surveys Got Transition www.gottransition.org 16

17. Health Care Transition Planning Algorithm AAP, AAFP, ACP Pediatrics 2011 17

18. Health Care Transition Planning Algorithm AAP, AAFP, ACP Pediatrics 2011 18

19. 19 2009/10 National Survey of Special Health Care Needs (2009/10 NS-CSHCN) TXUS Children receiving the services necessary to make the transition to adult health care 35.4%40% Transition Outcomes National Survey of CSHCN 2009/2010

20. CYSHCN Transitioning in a Medical Home 20

21. Transition Outcomes CYSHCN OUTREACH SURVEYCYSHCN PARENT FOCUS GROUPS Average Age of children of respondents: 17.9 years Wide range of ideas about transition planning 18.9% felt prepared for their child to transitionAwareness of the term transition 19.4% prepared for transition with help from a professional on 4 or more transition areas Perceived need to consider transition planning Most respondents have not preparedUnsure of where to go for assistance with transition planning 21

22. Barriers to Successful Transition  Non-Hispanic black race  Male  No insurance or public insurance  Lower family income  Activities significantly impacted by condition  Emotional, behavioral, or developmental condition  [Beginning at] age 15-18  Hispanic ethnicity  Lack of a medical home Pediatrics Volume 131, Number 6, June 2013 22

23. Transition From Pediatric to Adult Care: Internists’ Perspectives  Concerns identified included difficultly obtaining records, lack of training in pediatric onset and congenital disorders, and parents often reluctant to relinquish responsibility for health care/decision making to young adult patients  Concerns clustered into 6 domains:  Family involvement  Patient maturity  System issues  Provider’s medical competency  Patient psychosocial needs  Coordination of the transition process Pediatrics, Volume 123, Number 2, February 2009 23

24. Thank You for Your Input! Manda Hall, MD Title V Maternal and Child Health Director Texas Department of State Health Services Manda.hall@dshs.state.tx.us Raquel Flores Research Specialist Texas Department of State Health Services Raquel.flores@dshs.state.tx.us