Public Health Social Work: Children with Special Health Care Needs

1. Public Health Social Work: Children with Special Health Care Needs Elena Faugno, LCSW, MPH

2. Learning Objectives At the end of this presentation, the students will be able to: • Provide a brief overview of current health issues and trends in services for Children with Special Health Care Needs (CSHCN) • Identify existing roles of social workers within CSHCN • Discuss opportunities, as well as challenges, for up-stream interventions of PHSW within CSHCN • Give examples of what PHSW looks like within this area of practice • Articulate how PHSW can improve population health of CSHCN • Identify strategies for expanding PHSW within CSHCN

3. Learning Objectives At the end of this presentation, the students will be able to: • Provide a brief overview of current health issues and trends in services for Children with Special Health Care Needs (CSHCN) • Identify existing roles of social workers within CSHCN • Discuss opportunities, as well as challenges, for up-stream interventions of PHSW within CSHCN • Give examples of what PHSW looks like within this area of practice • Articulate how PHSW can improve population health of CSHCN • Identify strategies for expanding PHSW within CSHCN

4. Children With Special Health Care Needs Division of Services for Children with Special Health Care Needs

5. Maternal & Child Health Mission • “To improve the health of America’s mothers, children and families” • 5 focus areas: • Maternal/Women’s Health • Young Adult Health • Maternal/Infant Health • Children with Special Health Care Needs • Child Health Hey, that’s us!

6. Defining Children With Special Health Care Needs “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”1,2

7. Public Health Significance: Affects Many Children

8. And Reflects Widespread Disparities

10. Specific Issues Associated CSHCN:

11. Connecting Life Course Theory Risk Factors Critical period Critical period Critical period Critical period Protective Factors

12. Life Course Theory and Practice – Michael Fraser, 2013 “An important implication of Life Course Theory for MCH practice is that MCH leaders are required to take a longitudinal approach when designing and implementing programs to address MCH needs . . .This involves supporting MCH interventions earlier on in the life of women, and addressing the socio-economic conditions families experience over the course of their lives . . .’’

13. Social Work Principles Connect to CSHCN

14. Connecting Public Health Social Work to CSHCN • Public Health Social Work • Makes the data tell a story

15. Social Work Health Impact Model Implications for PHSW & CSHCN Examples Smallest population impact Family support services; behavioral health; coaching; therapeutic interventions Suicide and violence prevention; chronic disease management; care coordination/integration; early intervention   Health policy practice; leadership in health systems, program planning and evaluation; community level health advocacy Increasing population impact Wider-lens approaches Community activism; legislative advocacy; education; housing; racial justice (Ruth, Wachman & Schultz, 2014)

16. MCHB’s Systems of Care for CSHCN

17. Examples Mapping MCHB and SWHIM Smallest population impact Families as Partners Access to Medical Home Early Continuous Screening Families as Partners Transition to Adulthood Transition to Adulthood Community-based Services Access to Medical Home Increasing population impact Wider-lens approaches Adequate Insurance Community Based Services

18. Did MCHB get it right? Exercise: Looking at the 6 core strategies mapped onto the Social Work Health Impact Model…. • Are the 6 core strategies enough? Too much? • Did the MCHB use a wide enough lens? Too wide? • Could a 7th strategy be introduced? What would it look like?

19. Additional Suggestions for Infusing PHSW into CSHCN • Families as Partners • Micro – individual advocacy for/with patients e.g. sitting in on medical appointments or IEP meetings; ensuring that family’s voice is amplified • Mezzo – More interdisciplinary/interprofessional work within agencies (e.g. soft handoffs, better transitions of care systems) • Macro – creation of patient/family advisory boards within hospitals; use of public health skills to support the work of patient/family groups (e.g. data collection/analysis, media advocacy, etc)

20. More Suggestions… • Adequate Insurance • Micro – screen patients for insurance coverage; if none, provide direct assistance enrollment • Mezzo – work with family’s institution (hospital, community health center, public health department) to streamline the process for obtaining insurance • Macro – collect data on barriers to insurance for patients/families; lobbying at state and federal level for coverage, FMLA benefits, etc

21. Case Example PHSW In Action!

22. Remember way back at the beginning of this journey when we talked about Life Course Theory and considered if there were times or “critical periods” when the intervention of PHSW could have more impact? Yes?Good! This is one of those times...

23. Transition to Adult Care What is transition of care? • Why is it a sensitive period? • Gaps in health care • Loss of coverage • Loss of patient contact • What else? • Transition planning between youth, family, and provider has been associated with: • Reduced medical complications • Increased adherence to care • Greater continuity of care • Increased patient satisfaction • Lower cost www.gottransition.org

24. Boston Medical Center Transition Team • Transition Clinic • Pediatric patients ages 18+ years are seen in the adult hematology clinic by both their pediatric MD and the adult MD for routine medical care related to their Sickle Cell Disease (SCD) • Patients then meet with Social Worker to: • Discuss feelings concerning readiness for transition to adult care • Self-help and healthy coping skills related to SCD • How to advocate for their medical needs • Employment and educational opportunities, needed accommodations • Other things that the patient identifies as important • Healthy relationships, substance use, etc.

25. BMC Transition QI Project • Problems and Questions: • Transition planning is key to chronic illness management and optimal care, yet few clinics include an assessment of youth’s transition readiness • The Transition Clinic exists for patients ages 18 + years but what about the younger patients? • If the recommendation is to begin transition process as young as age 12 years, then how do we being approaching transition with patients ages 13-18 years?

26. BMC Transition QI Project Effort Solution: PHSW implements a Quality Improvement project within the clinic • Plan-Do-Study-Act cycles • Patients age 13+ years given a validated questionnaire during clinic visit • Questionnaire is scored and entered into patient’s electronic health record • PHSW uses clinical skills to engage patient in discussion regarding readiness and answers some of their questions • Methods of the QI project and the results of the PDSA cycles are presented by PHSW at a national conference

27. Use of PHSW Model to Illustrate Project • QI project • Advocacy with external organizations • Motivational Interviewing • Providing psychosocial support and validation • Coordinating with interpreter services as well as transportation services • Survey collection • Recording data on the patient usage of Transition Clinic • Analysis of data & presentation of research

28. Challenges Case Example Take-Aways: • “Public health social workers engage in all three levels of prevention: primary, secondary and tertiary” - (Ruth, Wachman & Marshall, 2017) Successes Patient empowerment Department collaboration Data to drive additional changes • Overworked system • Sustainability

29. A PHSW Call to Action

30. What PHSWs Can Do • Advocate for public health social work • Do the research • Ethical Standard as outlined in the NASW Code of Ethics • Social Workers’ Ethical Responsibilities to the Social Work Profession • 5.02 Evaluation and Research • Disseminate findings • Value: Competence  “Social workers should aspire to contribute to the knowledge base of the profession” • Address systems of oppression • Value: Social Justice

31. References About the Maternal and Child Health Bureau (MCHB). (2018, May 01). Retrieved from: https://mchb.hrsa.gov/about-maternal-and-child-health-bureau-mchb. Child and Adolescent Health Measurement Initiative. Data Resource Center for Child and Adolescent Health. 2016 National Survey of Children’s Health (NSCH) data query. Retrieved 07/28/18 from eee.childhealthdata.org. CAHMI: www.cahmi.org Child and Adolescent Health Measurement Initiative (2012). “Who Are Children with Special Health Care Needs (CSHCN).” Data Resource Center, supported by Cooperative Agreement 1‐U59‐MC06980‐01 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Available at www.childhealthdata.org. Revised 4/2/12. Faugno E, Dickman L, Sabota A. A Quality Improvement Initiative to implement a yearly Transition Readiness Assessment Questionnaire (TRAQ) for youth with sickle cell disease. Poster Presentation at the American Public Health Association 2016 Annual Meeting, Denver, CO. Fraser, M. (2013). Bringing it All Together: Effective Maternal and Child Health Practice as a Means to Improve Public Health. Maternal and Child Health Journal, 17(5), 767-775. Lu, M. & Halfon, C. (2003). Racial and Ethnic Disparities in Birth Outcomes: A Life-Course Perspective. Maternal and Child Health Journal, 7(1), 13-30. Mcpherson, Arango, Fox, Lauver, Mcmanus, Newacheck, . . . Strickland. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 Pt 1), 137-40. National Association of Social Workers, (2018) Code of ethics. Retreived from: https://www.socialworkers.org/About/Ethics/Code-of-Ethics/Code-of-Ethics-English National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 07/28/18 from www.childhealthdata.org Ruth, Wachman & Marshall, 2017. Public Health Social Work Chapter, Handbook of Health Social Work 3rd Ed. Sawicki, G. S., Lukens-Bull, K., Yin, X., Demars, N., Huang, I. C., Livingood, W., ... & Wood, D. (2009). Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—Transition Readiness Assessment Questionnaire. Journal of pediatric psychology, jsp128. Sobota, A., Akinlonu, A., Champigny, M., Eldridge, M., McMahon, L., Telfair, J., & Sprinz, P. (2014). Self-reported transition readiness among young adults with sickle cell disease. Journal of pediatric hematology/oncology, 36(5), 389.

32. About the Author Elena Faugno, MSW, MPH, is a public health professional with a background in clinical social work who is interested in bridging the gap between the two fields. Passionate about tackling issues of health disparities across the life course and thinking about ways to create communities of opportunity for children. Currently, she works as a research associate with the Harvard Pilgrim Healthcare Institute, where she conducts qualitative research on the effects of insurance choice on families in the non-group marketplace.

33. Acknowledgements • The Advancing Leadership in Public Health Social Work Education project at Boston University School of Social Work (BUSSW-ALPS), was made possible by a cooperative agreement from the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number G05HP31425. We wish to acknowledge our project officer, Miryam Gerdine, MPH. Thanks also to Sara S. Bachman, BUSSW Center for Innovation in Social Work and Health, and the Group for Public Health Social Work Initiatives • The ALPS Team: • Betty J. Ruth, Principal Investigator bjruth@bu.edu • Madi Wachman, Co-Principal Investigator madi@bu.edu • Alexis Marbach Co-Principal Investigator alexis_marbach@abtassoc.com • Nandini Choudhury, Research Assistant nschoud@bu.edu • Jamie Wyatt Marshall, Principal Consultant jamiewyatt1@gmail.com