Family Organizations Enhancing Title V Block Grant

1. How Family Organizations can Help Shape and Implement the Title V Block Grant March 27, 2019

2. Learning Objectives Opportunities for F2Fs/FV SAOs to contribute to the Title V Needs Assessment & Block Grant Development • At all levels of family engagement • Across all five MCH population health domains

3. Presenters Mercedes Rosa Project Director SPAN Parent Advocacy Network (SPAN) Diana Autin Executive Co-Director SPAN Parent Advocacy Network (SPAN) NanfiLubogo Co-Executive Director  PATH Parent-to-Parent/Family Voices of CT DeepaSrinivasavaradan CDC's Act Early Ambassador to NJ Southern Regional Coordinator -NJ F2F HIC @ SPAN Beth Dworetzky Associate Director for Programs Family Voices

4. Why is it important to demonstrate your value add to the block grant? The block grant: • Is Title V’s strategic plan • Sets forth how it will spend its federal & matching state/territorial funds • Addresses how the state/territory will fulfill its public health responsibilities/functions for women, infants, children, adolescents, and CYSHCN • Is required to reflect the input & priorities of stakeholders including diverse families & family organizations • Is an entrée into your state’s Title V activities

5. Where can you demonstrate it?

6. Title V MCH Block Grant • Particularly exciting time to be involved with your Title V programs • Don’t wait for an invitation • Crash the party, but like a good guest, bring a “host/hostess” gift

7. Block Grant Guiding Principles Three key principles that all Title V programs must address in their Block Grant Applications • Delivery of Title V services within a public health service model • Data-driven programming and performance accountability • Partnerships with individuals/families/family-led organizations (hereafter referred to as family partnership) Citation: TITLE V MATERNAL AND CHILD HEALTH SERVICES BLOCK GRANT TO STATES PROGRAM page 2

8. Title V Programs should… • Assure families and individuals are key partners in health care decision-making at all levels in the system of services, especially those who are vulnerable and medically underserved • Ensure the provision of training, both in orientation and ongoing professional development, for staff, family leaders, volunteers, contractors and subcontractors in the area of cultural and linguistic competence • Collaborate with community leaders/groups and families of every background in needs/assets assessments, program planning, service delivery and valuation/monitoring/quality improvement activities Citation: TITLE V MATERNAL AND CHILD HEALTH SERVICES BLOCK GRANT TO STATES PROGRAMpages 8 & 9

9. Title V Family Partnerships • Advisory Committees • Strategic and Program Planning • Quality Improvement • Workforce Development and Training • Block Grant Development and Review • Materials Development • Program Outreach and Awareness Citation: TITLE V MATERNAL AND CHILD HEALTH SERVICES BLOCK GRANT TO STATES PROGRAMpage 31

10. NPM – No Partnership Measure? Cross-cutting State Priority Measures (SPMs) or State Outcome Measures (SOMs) • AL: Percent of CYSHCN and their families who report that they share in decision-making and partnerships with their health care providers • WI: Percent of State Action Plan Strategies that engage family members, youth, and/or community members • VA: Cross-cutting (Family Engagement): Implement and develop report on survey of families served by the VDH Care Connection for Children (CCC) programs Source: Title V Information Systems (TVIS)

11. MCH Essential Services • Provide Access to Care • Investigate Health Problems • Inform and Educate the Public • Engage Community Partners • Promote/Implement Evidence- Based Practices • Assess and Monitor MCH Health System • Maintain the public health workforce • Develop Public Health Policies and plans • Enforce Public Health Laws • Ensure Quality Improvement Direct Services Enabling Services PHS system

12. National Performance Measures • NPM 1: Well-woman care (Women, Maternal) • NPM 2: Low risk cesarean deliveries (Women, Maternal) • NPM 3: Risk Appropriate Prenatal care (Perinatal, Infant) • NPM 4: Breastfeeding (Perinatal, Infant) • NPM 5: Safe sleep (Perinatal, Infant) • NPM 6: Developmental screening (at appropriate times using appropriate tools) (Children) • NPM 7: Injury Hospitalization (Child, Adolescent) • NPM 8: Physical Activity (Child, Adolescent) • NPM 9: Bullying (Adolescent • NPM 10: Adolescent well-visit (Adolescent) • NPM 11: Access to a medical home to coordinated all needed healthcare services (Children, children with special healthcare needs) • NPM 12: Transition to adult systems of care (Children with special healthcare needs, children) • NPM 13: Preventive Dental Visit (children) • NPM 14: Household smoking (Cross-cutting/life course) • NPM 15: Adequate insurance coverage (Cross-cutting/life course)

13. Demonstrating your value add: What do you already bring to the table? • What does your family organization already know, do, have access to, understand, and impact that is important to your Title V agency(ies)? Consider: • Data • Outreach • Services (Individual assistance/navigation; training) • Information dissemination • Leadership development & engagement • Partnerships

14. Data Quantitative Data: • Data in your contact management system (database) • Who are you reaching? • Demographic data? • What issues/barriers are they facing? Qualitative Data: • Information from focus groups, surveys, vignettes, etc. • What concerns are they raising? • What is working well? • What are their priorities? • What recommendations do they have for improvement?

15. Outreach To professionals To families • Types and roles of professionals you are reaching • Relationships with professional associations, etc. • Targeted outreach strategies & tools for different professionals • Demographics of families you are reaching • Relationships with your outreach partners • Targeted outreach strategies & tools for different populations

16. Services To families • What types of individual assistance are you providing & what are the process & substantive outcomes? • What types of training are you doing & what are process & substantive outcomes? • How many are you serving? • What more could you do with additional funds to meet needs? To professionals • What types of professionals are contacting you for information & assistance? What are the process & substantive outcomes? • What types of professionals are attending your trainings? What are the outcomes? • How many are your serving? • What more could you do with additional funds to meet needs?

17. Information Dissemination • What resources, tools, guides, manuals, fact sheets, tip sheets, etc. do you have, in what languages? Which are the most popular? • Who are you reaching with dissemination? Families, youth, professionals from which fields? • How many are you reaching in each audience? What languages? What formats (web, hard copy, etc.) • What resources, tools, etc. could you develop with additional funds?

18. Leadership & Partnerships Leadership • What leadership development are you providing? Using what leadership development tools? • Who are you reaching/training? Families/youth/professionals? Demographic data? Geography? • How are you supporting their leadership engagement? What are barriers? Solutions? • What could you do with more resources? Partnerships • What partnerships do you have? Coalitions, consortia, collaborative funded projects, legislators, other state agencies, individual groups • What have those partnerships achieved? • How could you bring those partnerships to bear on MCH work to enhance its reach, replicability, sustainability

19. Strategies to Demonstrate Value Add • Develop & share: • 1 page summary of your MCH-related activities across domains, by strategy (individual assistance, family & professional development, resources, etc.) • Summary of how your activities align with Title V priorities (NPMs, NOMs, State Measures) • Develop & share: • Overview of Title V block grant (federal & in your state), how your activities fit in with Title V block grant priorities nationally & in your state • Powerpoint presentation on how your organization intersects with Title V

20. Strategies to Demonstrate Value Add • Focus of sharing • As part of planning for & doing needs assessment • In conversations about prioritizing topics/areas • In developing evidence-based/ informed strategies • In consideration of CQI & evaluation approaches • Core public health functions • When/where/how? • At block grant hearing • In written comments on draft block grant • With the Governor, legislators, policymakers • With families, professionals, other stakeholders • With all your staff, family leaders, partners • At/during block grant review

21. Roles of Youth & Family Leaders in the Block Grant process • Participate in and provide feedback on annual review of needs, priorities, activities, & outcomes, as well as to plan and conduct the 5-year Needs Assessment • Provide testimony at Block Grant Hearings, so their comments and suggestions may be included to ensure that the draft application reflects the perspectives and needs of youth and families in their state • Attend the review of their state’s Block Grant Application as an opportunity to offer additional comments in support of the application • Serve as Reviewers for Block Grant Applications of states in other MCH regions

22. SPAN & NJ Department of Health Partnerships Across MCH Domains, Levels & Core Public Health Functions: Family Leadership Development & Engagement Across Domains

23. SPAN & NJ Title V: Partnerships & Parent Leadership & Engagement Respect + Relationships + Reliability + Resources + Recognition

24. Maternal/Child/Adolescent • Improving Pregnancy Outcomes • Community health workers (5 years) • Family leadership development • Support for community initiatives by trained leaders • Community Doula pilot • Infant Mortality CoIIN • MCH Core Planning Team to Reduce Low-Risk Cesarean Births • Multi-lingual Zika videos • Parents as Champions for School Health • Parent leadership training & support • Resources for parents & school teams to work on health-related projects • Capacity building for school teams • Parent Leadership in Early Childhood • Preparing & supporting parent leaders on County Councils for Young Children • Preparing & supporting parent leaders in ECCS & Help Me Grow • Learn the Signs. Act Early Ambassador supporting parent leaders to share resources

25. Children with Special Healthcare Needs Family WRAP (Wisdom, Resources, Advocacy & Parent to Parent Support) • Family Resource Specialists at county Special Child Health Case Management Units • Family Voices • NJ Statewide Parent to Parent • SPAN Resource Parents – comprehensive training for volunteers • Biannual Parent Leadership conference State implementation grants • Training for underserved families to participate in Community of Care Consortium, on medical home teams at FQHCs, etc. Partners for Prevention of Birth Defects & Developmental Disabilities • Stakeholder meetings • Annual Women’s Health Forum • Annual Cultural Competence Conference • FASD Prevention training & support EHDI Parent Leadership & Support

26. Core Public Health Functions

27. Assessment: Knowing what needs to be done Monitor health status to identify community health problems • Improving Pregnancy Outcomes Project: Community Health Workers identified women of child-bearing age & connected them to resources, facilitated completion of Community Health Screens to identify community-level service gaps Diagnose & investigate health problems & health hazards in the community • Focus groups with immigrants and women of color to help identify root causes of health problems &/or community health hazards Evaluate effectiveness, accessibility, and quality of personal and population-based health services • Review data from family-led organizations’ contacts with diverse families to identify effectiveness, accessibility, & perceived quality • Survey the need to enhance existing activities and outreach strategies • Help conduct evaluation and oversight activities, maintain accountability

28. Assurance: Making sure it happens Link people to personal health services & provide when necessary • Community Doula pilot • Family Resource Specialists at county Case Management Units • Family Voices advocacy • Serve as ambassadors, cultural brokers building bridges into the community Assure a competent public health & personal healthcare workforce • Provide professional development using family/youth leaders: • Medical Home Learning Collaboratives • Shared Plans of Care, transition, family-professional partnerships, via D70 funding • Family-Led screening training on implications of & strategies for effective screening for immigrant/LEP families & families of color

29. Assurance: Making sure it happens Inform, educate & empower people about health issues • Parent leadership development on: • Comprehensive leadership training (SPAN Resource Parent training series) • Medical Home Parent Partner training • Title V block grant • Core outcomes for CYSHCN • Addressing maternal & child health issues in underserved communities • Serving on Groups • Parent training on health issues • Healthcare advocacy across the life span • Partnering with Professionals • Transition to Adult Systems of Care • Mobilize community partnerships • Annual Statewide Cultural Competence conference co-planned & co-facilitated by family organization; webinars on related topics for professionals & family leaders • Community of Care Consortium for CYSHCN • Partners for Prevention of Birth Defects & Developmental Disabilities

30. Policy Development: Being part of the solution Develop policies & plans that support individual & community health efforts • Community of Care Consortium for CYSHCN: Workgroups tied to six core outcomes, co-led by parent leader & professional, review current status, make recommendations for improvements including needed policies & plans, review draft policies & plans to provide input Enforce laws & regulations that protect health & ensure safety • Family-led organization shares systemic issues regarding violations of laws & regulations via Family Resource Specialists housed at county Special Child Health Services Case Management Units Research for new insights & innovative solutions to health problems • Focus groups with diverse women at risk of FASD to identify effective communication strategies for primary care providers to use • Focus groups with diverse women who were low risk for cesarean to identify the experiences and impact of cesarean on low-risk women

31. Conclusion • Want to influence public health for CSHCN in your state? Be an embedded, integral part of the block grant • Want to be a key component of the block grant in your state? Be proactive in demonstrating your “value-add” • Want to demonstrate your “value-add” to your state? • Identify where you intersect with block grant components • Develop tools & resources that show where you intersect • Share them widely

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33. Family Voices, Inc. Phone (888) 835-5669 www.familyvoices.org http://familyvoices.org/ncfpp