1. Road To Success...Within Our Reach MCHB funded National Centers Achieving Community-Based System of Services for Children and Youth with Special Health Care Needs Family Voices Conference Moving Forward: The Future of Health Care for Children and Youth Washington, DC May 26, 2007

2. Addressing Federal Goals Amended Legislation for Title V of the Social Security Act (OBRA 1989): “Facilitate the development of community-based systems of services” Healthy People 2010 Objective 16.23 “Increase the proportion of States and territories that have service systems for children and youth with special health care needs (CYSHCN)” President’s New Freedom Initiative (NFI) Responsibility given to HRSA for developing and implementing a plan to reduce barriers to community services and independent living for CYSHCN and their families

3. The MCHB Mission The mission of the Maternal and Child Health Bureau (MCHB) is to provide national leadership, in partnership with key stakeholders, to improve the physical and mental health, safety and well- being of the maternal and child health (MCH) population which includes all of the nation’s women, infants, children, adolescents, and their families, including fathers and children with special health care needs.

4. The MCHB Vision/Principles (excerpts) There is equal access for all to comprehensive, quality health care provided in a supportive, culturally competent environment, which is family-centered and community-based. All women and children, especially children with special health care needs, are linked to a comprehensive, community-based service system through a medical home.

5. The MCHB Vision/Principles (excerpts) Family and community participation and engagement are key to the development of effective, quality health systems and services.

6. What Is A Community System? Graphic: Champions For Progress National Center/EIRI Building A Community System: 6 Core Outcomes

7. Strategies for Success: Grants State Level -State Implementation D-70/NFI -F2F HIC’s -TBI, etc. National National Centers & Cooperative Agreements Monitoring and Measuring - National Surveys for CSHCN - Performance Measures Partnerships

8. Got Data? www.mchb.hrsa.gov/data/ HRSA/MCHB Title V Information Systems (TVIS)

9. Got Data? www.cshcndata.org Data Resource Center National Survey for CSHCN

10. Road To Success...Within Our Reach MCHB funded National Centers What we do …….. How we can help YOU!

11. www.familyvoices.org

12. National Center for Family & Professional Partnerships National Network of Family Leaders - Expertise in health care policy & practices - Family Leaders in every state - Funded family-run F2F HICs, plus volunteers Families as Partners - Promoting partnerships at all levels of care to ensure family centered care (individual child to the program and policy level) Who We Are ………..

13. National Center for Family & Professional Partnerships Information & Resources: Info for families to help other families Materials: Website, hard copy materials Technical Assistance - Topical Calls - eNews - Onsite Training (state, regional, national) Legislative Action Center - learn about current issues, updates and how to participate in policy issues How We Can Help YOU ………..

14. National Center for Family & Professional Partnerships State Activities: Connections with FV activities within your state Youth Leadership: KASA - National Network for youth/young adult self advocacy Evidenced Based: Committed to develop information to document the value of family partnership and family centered care

15. www11.georgetown.edu/research/gucchd/nccc

16. National Center for Cultural Competence (NCCC) Who We Are ……….. The NCCC receives Federal funds to support family organizations, and state Title V programs concerned with CYSHCN and their families to plan for, implement and evaluate the services and supports that they provide for all families.

17. National Center for Cultural Competence (NCCC) Who We Are ……….. Special emphasis is placed on helping polices, services and supports to meet the unique needs of families from diverse cultural, linguistic, geographic, gender, religious, and racial backgrounds.

18. National Center for Cultural Competence Who We Are ……….. Mission ………. is to increase the capacity of health and mental health programs to design, implement, and evaluate culturally and linguistically competent service delivery systems.

19. National Center for Cultural Competence Foundations of Cultural & Linguistic Competence - Definitions - Compelling Need - Policies to Advance and Sustain Conceptual Frameworks/Models Guiding Values & Principles Tools and Processes for Self-Assessment

20. National Center for Cultural Competence How we can help You ……….. Provide training, TA and consultation Conduct virtual meetings Facilitate community of learner activities Link individuals and organizations Family & Youth Perspectives

21. National Center for Cultural Competence How we can help You ……….. Resources, Guides & Tools - Guide for Advancing Family-Centered and Culturally and Linguistically Competent Care - Cultural and Linguistic Competence Policy Assessment (CLCPA) Topical Conference Calls Consultant Pool

22. Medicalhomeinfo.org

23. National Center of Medical Home Initiatives INSERT LOGO HERE Who We Are… Mission: to work in cooperation with federal agencies, particularly the Maternal and Child Health Bureau to ensure that CYSHCN have access to a medical home A Medical Home is not a building,house, or hospital, but rather an approach to providing comprehensive primary care.

24. Elements of Medical Home Care that is: Accessible Family-centered Comprehensive Continuous Coordinated Compassionate Culturally-effective and for which the primary care provider shares responsibility with the family. National Center of Medical Home Initiatives

25. How We Can Help YOU ……….. Finding local, state, & national resources Strategies to support medical homes Tools - screening and surveillance Training manuals, marketing materials, power pointslides, and resources Monthly Listserv

26. June 29 to July 1, 2007 Orlando, FL www.medicalhomeinfo.org www.medicalhomeinfo.org/FOP%20Brochure_1.pdf

27. www.hdwg.org/catalyst/index.php State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Needs

28. Catalyst Center for Improving Financing of Care for CYSHCN We provide support to the efforts of stakeholders at the federal, state and local levels in assuring adequate health insurance coverage and financing to meet the diverse needs of children and youth with special health care needs and their families. Who We Are ………..

29. Catalyst Center for Improving Financing of Care for CYSHCN The goals of the Catalyst Center include empowering families and other stakeholders to share a common language and knowledge base around financing issues.

30. Catalyst Center for Improving Financing of Care for CYSHCN Our work is organized around four central domains: - reducing uninsurance - reducing underinsurance - increasing financing strategies for wrap-around supports - increasing strategies that promote the infrastructure of care.

31. Catalyst Center for Improving Financing of Care for CYSHCN How We Can Help YOU ……….. Short-term TA via phone or e-mail: - Questions/health care financing policy - Locating data sources - Connecting to solve complex financing

32. Catalyst Center for Improving Financing of Care for CYSHCN How We Can Help YOU ……….. - Monthly topical conference calls - Financing Toolkit of publications - Expand financing knowledge base

33. infanthearing.org

34. National Resource Center for Early Hearing Detection and Intervention Every day, 33 babies (or 12,000 each year) are born in the United States with permanent hearing loss. With 3 of every 1,000 newborns having a hearing loss, it is the most frequently occurring birth defect.

35. National Resource Center for Early Hearing Detection and Intervention Mission ……….. To ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention, an early hearing detection and intervention

36. National Resource Center for Early Hearing Detection and Intervention Three basic components - Newborn screening - Audiological diagnosis - Early intervention

37. National Resource Center for Early Hearing Detection and Intervention How We Can Help YOU ……….. - TA - Resource /promising practice development - Dissemination - Public awareness activities - Education and training - Policy and financing initiatives - Evidence-based data for quality assurance.

38. http://www.championsinc.org

39. Champions for Inclusive Communities Champions for Progress Who We Are….. Champions for Inclusive Communities is the National Center responsible for Performance Measure #4 “Services are organized so families can use them easily and are satisfied with the services they receive.”

40. Champions for Inclusive Communities Champions for Progress How We Can Help YOU ……….. Provide models of team building, coalitions and family-professional partnerships that are empirically tested Highlight community efforts across the country that have proven, replicable models Help State-Community teams connect with ongoing initiatives for funding and support

41. www.hrtw.org

42. Healthy & Ready to Work National Resource Center Health Impacts All Aspects of Life To stay healthy, young people need an understanding of their health and to participate in their health care decisions. We provide information and connections to health and transition expertise nationwide – from those in the know, doing the work and living it! The Ultimate Outcome: Transition to Adulthood

43. Healthy & Ready to Work National Resource Center Four cornerstones of our work Youth Involvement Title V Leadership Medical Home & Transition Interagency Partnerships The Ultimate Outcome: Transition to Adulthood

44. Healthy & Ready to Work National Resource Center Health Care Transition Takes Time & Skills Increasing Youth Involvement Health & Wellness Baseline Maintaining Health Insurance Documenting Disability Info & TA …for Leaders, Title V & Providers The Ultimate Outcome: Transition to Adulthood

45. Healthy & Ready to Work National Resource Center Web-based Tips & Tools (use and adapt) Provide templates, text, materials TA: Topical Calls, Email, Phone, On-site Review drafts Transition Data: Block Grant NMP6 & SSI How We Can Help You……. The Ultimate Outcome: Transition to Adulthood

46. How YOU can help Us!

47. How YOU can help US! Contact us: Tell us what you need (see check off forms on your tables) Keep us updated: Help us understand the challenges you & the families face Share your skill areas: Offer to review drafts, test tools with families, identify resources for Centers’ materials, newsletters and websites.

48. How YOU can help US! Share your stories and experiences Identify programs and organizations that are doing good things (promising practices) that reflect an understanding of and honor different cultural beliefs and practices.

49. How YOU can help US! Get involved in Centers’ activities - Participate in questionnaires and surveys - Join Topical calls – provide feedback - Join list servs to learn and later to share ideas - Offer to join our activities, trainings as family faculty, serve on Advisory Councils Speak up for what you know is right Point out what is not correct …AND… provide solutions and resources to address the issue. Every change begins with the actions of one

50. Let’s Talk……Questions?