Celebrating the HRTW National Resource Center: Findings, Recommendations and Thanks

1. Celebrating the HRTW National Resource Center:Findings, Recommendations and Thanks HRTW Topical Call April 21, 2010

2. Outline of CallCelebrating HRTWFindings, Recommendations & Thanks • Title V progress – Block Grant review • Youth involvement - YACs, youth participation in states, youth involvement in their health care • Family Leaders • Medical Home and Insurance • Interagency collaboration • Next Steps • Thanks

3. The HRTW Team www.hrtw.org • MCHB Project Officer – Lynda Honberg lhonberg@hrsa.gov • Toni G. Wall , MPA - PI, HRTW National Resource Center; Director, Children with Special Health Needs Division of Family Health, Maine Department of Health & Human Services toni.g.wall@maine.gov • Debbie Gilmer, MEd - Co-Director, HRTW National Resource Center and Director, Center for Self Determination, Health & Policy at the Maine Support Network gilmer@maine.edu • Patti Hackett, MEd – Co-Director, HRTW National Resource Center, Maine Support Network pattihackett@hrtw.org • Richard (Rich) C. Antonelli, MD, MS, FAAP, Medical Director, Children’s Hospital Boston Integrated Care Organization (CHICO) richard.antonelli@childrens.harvard.edu • Patience H. White, MD, FAAP, MA, Chief Public Health Officer, Arthritis Foundation pwhite@arthritis.org

4. The HRTW Team • Mallory Cyr, BFA - Youth Consultant, HRTW National Resource Center and Integrated Services for Children and Youth with Special Health Care Needs Maine mallorycyr@hrtw.org • Kathy Blomquist, RN, PhD - Title V Consultant, HRTW National Resource Center and KY Commission for CSHCN kathyblomquist@hrtw.org • Ceci Shapland, RN, MSN – Consultant, HRTW National Resource Center cecishapland@hrtw.org • Patricia (Trish) Thomas, Consultant, HRTW National Resource Center & Partnership Coordinator, Family Voices National Center for Family Professional Partnerships tthomas@familyvoices.org • Theresa Glore, MS - Title V Consultant, HRTW National Resource Center; KY Department of Public Health theresaglore@hrtw.org • Betty Presler, ARNP, PhD, Nurse practitioner and care coordinator, Shriners Hospital for Children, Lexington; Consultant, transition and care coordination, Shriners Hospital for Children system bpresler@shrinenet.org • Liz Depoy, PhD, Professor, University of Maine Center for Community Inclusion and Disability Studies & Evaluator, HRTW National Resource Center liz.depoy@umit.maine.edu

5. Maternal and Child Health BureauHealthy & Ready to Work Initiative The move to make health a part of transition planning for youth with special health needs and disabilities became a national concept • 1996-2001: HRTW Phase I: • 8 state demonstration grant projects funded under the (HRSA) Special Programs of Regional and National Significance (SPRANS) CA, IA, LA, ME, MA, MN, OH, OR. • CHOICES Transition Project - collaboration of the Shriners Hospitals for Children system with state agencies (based in KY) • TA Center at University of Florida Institute for Child Health Policy

6. Maternal and Child Health BureauHealthy & Ready to Work Initiative • 2001-2005: Phase II • 5 state model state demonstration programs focused on transition outcomes in AZ, IA, ME, MS, WI • KY was funded 1999-2003 through an earlier competitive grant process • Healthy & Ready to Work National Center at AED – Virtual Center • 2006-2010 Phase III – Integrated Model • D-70 State Integrated Services Grants • HRTW National Resource Center, Maine Title V and Maine Support Network – Virtual Center

7. FY2005: 6 National Performance Measures guide Block Grant reporting #6: A major goal of the MCHB Division of Services for Children with Special Health Needs (DSCSHCN) is to assure that all youth with special health care needs receive the services necessary to transition to all aspects of adulthood, including adult health care, employment and independence. Block Grant reporting allows monitoring trends

8. Other MCHB Initiatives promoting Transition • Medical Home Grants • Champions for Progress Incentive Awards • Family-to-Family Health Information Centers (promote 6 NPMs)

9. Reorganization of CYSHCN and Public Health programs Since 2005: • Title V CYSHCN programs are in the process of improving services for all CYSHCN through a population-focus (not a condition-specific focus) • Change from direct clinical and care coordination services to CYSHCN and their families: • contracting of services, • referral and payment for services, • interagency collaboration, and • infrastructure building. • Different skills needed by administrators and staff • Fiscal pressures

10. CHANGES IN LEADERSHIP Between fall of 2004 and spring 2010, 37 states and 4 territories have had changes in CYSHCN directors (16 state/territories had 2 or more changes) • potential to create havoc with continuity of programming, institutional memory, and knowledge of MCHB requirements • potential to introduce new ideas and new collaborations for the state • orientation to the transition national performance measure for new directors

11. transition progress & trends: Block Grants fy2005  fy2010 Screening

12. Screening –State Activities • Task forces to implement Bright Futures in clinics and medical practices • Hearing/vision screenings and/or school screenings include transition planning • Data systems with reminders to screen for or teach about transition building block activities • EPSDT promotion in medical homes with transition planning included

13. transition progress & trends: Block Grants fy2005  fy2010Youth Involvement

14. youth involvement – State activities • Young adult on Title V CYSHCN staff and/or grant projects • Youth Advisory Committees involved in education, policy, and leadership development • Resource specialists (often family members of CYSHCN); web-based transition information • Checklist/form to add to Block Grant report describing youth involvement (Form 13A- Alabama) • Cultural competence training; health literacy initiatives • Family/professional weekends with youth track and activities • Working with schools • Collaboration with Family to Family Health Information Centers for transition training

15. Main Ideas of Youth InvolvementMallory Cyr • Young people taking responsibility for their own life and healthcare - changing roles! • Self determination - having transition being centered around the youth’s goals and dreams. • Having youth gain a voice as a leader, even on an individual level and being seen and treated as an equal partner.

16. How many States have Youth Advisory Councils? Increase in YAC’s during HRTW! 2005: 4 2006: 6 2007: 15 2008: 18 2009: 22!!

17. YAC’s Are where it’s at!

18. How Can States Help? • Support the creation of a Youth Advisory Group to help advise program and policy change. • Look into hiring, or creating paid positions for emerging leaders to help develop or support youth involvement activities. • Get the youth voice heard! Invite youth leaders to events at various levels, and support them in learning more about “the system!”

19. What youth are saying! • “Youth voice is valuable and needs to be heard!” • “People with disabilities have a lot to contribute in the work environment, and society and often aren’t given the opportunity! It’s time to change that!” • “Young people need to know what is available to help them advocate for themselves. When our parents have done everything for us, we don’t even know where to begin! HRTW has helped me with that!”

20. HRTW Programming for Family Leaders Ceci Shapland Trish Thomas , Key Findings Family to Family Health Information Centers Survey 2008-2009 Surveyed 41 Family to Family Health Information Centers Respondents: 26

21. Key Findings 69% provide transition services Requested: more quality information and tools for youth and families 23% involve youth as advisors Requested: more guidance in promoting youth leadership 85% partner with their Title V Agency; Less partnership with community transition- oriented agencies

22. Key Findings: Barriers Major Barriers: • Agree with providers that fragmentation of services is largest barrier • Limited insurance coverage • Available adult practitioners

23. Strategies • Provided technical assistance including onsite, regional and state conferences to 33 Family to Family Health Information Centers • Developed numerous tools for youth and families for planning transition and promoting youth leadership including • Guiding and supporting Family to Family Health Information Center Leaders to experience transition in their own life • Promoting Family Leader expertise in transition

24. Cultural Beliefs • Importance of acknowledging culture in transition • Intergenerational tension

25. Growing up : Cultural Broker to the community Travis Solomon Indigenous: Southwest Pueblo: Laguna/Zuni Laguna, NM 29 years old Central NM Community College Major: Sociology GOAL: MPA, Gallaudet University

26. Recommendations Successful Strategies for Working with Families of YSHCN • Address fears and concerns • Teach concrete skills • Start out slowly - small steps to show success • Address issues of cultural beliefs and customs, including intergenerational tension • Set goals • Promote skill building as central to transition success • Acknowledge successes

27. transition progress & trends: Block Grants fy2005 fy2010Medical Home

28. medical home – State Activities • CYSHCN agency staff members have lunches with physician practices to discuss services and promote transition planning and leave mousepads/pens/etc. with contact information (like pharmaceutical reps!) • Family and youth teaching medical students and pediatric, family practice, and med-peds residents • Surveys of young adults about needs and barriers; of physicians about information needs, barriers to providing transition preparation and transfer to adult care and providing care to young adults with disabilities/chronic conditions • Training materials: transition curricula, videos, CDs, DVDs, web-based, distance learning, transition cases on web, CMEs • Collaboration with AAP-CATCH grants of physicians in the state • Collaborations with hospitals and universities, LENDs for education materials, conferences, diagnosis-specific research and treatment projects; promote physician to physician medical home training • Publications in medical and health care journals, transition articles in state medical newsletters

29. Medical HomeFindings - Kathy Blomquist • AAP/AAFP/ACP-ACIM 2002 Consensus Statement – detailed instructions • Society for Adolescent Health & Medicine (SAHM) – 2003 Position Paper - health promotion • Medical Home Training – Transition component • Specialty meetings and transition guidelines • Surveys of MDs: HRTW, AAP, Peter et al, Burke -RI, NH, WA • Transition Core Knowledge and Skills checklist • Issues for adult health care professionals • Workforce issues – primary care • Funding issues - visits and transfer communication

30. Shriners Hospitals for Children SystemCollaboration with HRTW - Betty PreslerExample of what Hospitals are doingOutcomes • Clinical Guidelines developed and adopted across the system regarding recommended best transition practices • Tools and resources shared across hospital system and on HRTW web site • Focus on improving transition services for both individuals and populations

31. SHC Outcomes: Special Programs • Transition camps, week-end events, and resource fairs • Proms, sporting events, teen support groups • Work programs and independent living skills • Focus on quality improvement and outcomes • Exit survey and post-graduation followup • What was delivered • What difference did it make • What could we have done better

32. SHC Next Steps • Improving electronic documentation • Developing system for organizing transition resources and making available to interested hospitals (Free-Mind) • Expanding quality improvement and outcomes evaluation activities across all hospitals • Continuing to encourage strong interagency partnerships and improved care coordination focused on improving transition outcomes

33. transition progress & trends: Block Grants fy2005  fy2010Insurance

34. Insurance – State Activities • Benefits books/pamphlets and trainings for planning for changes in insurance at age 18-22 • Expanding age limit for services to 22 or 25 • Participating in health care reforms to improve services and funding for young adults • Flexible spending (menu of services) with family choice for use of available funds • Paying premiums for insurance/COBRA

35. Insurance – Health Care Reform • NOW: 47% age 19-34 without insurance during any year; 33% without any time; 2/3 without insurance go without care because of cost • HCR: Young adults can stay on parents’ insurance until age 26 – starts fall 2010 • Prohibition on denial based on pre-existing conditions – fall 2010 for children; 2014 for adults • More options for insurance: Interim high risk pools; Health Insurance Exchanges, premium assistance • Focus on prevention • Catalyst Center - new - www.catalystctr.org

36. transition progress & trends: Block Grants fy2005  fy2010Community Organized

37. community organized – State Activities • One-stop application process for variety of adult services • Automated referral system to transition resources (e.g. CYSCHN to VR) • Regional or community transition teams with multiple agencies, families and youth • Statewide transition education tour; collaboration with schools (where youth are!) and school nurses • Adding questions about health care transition to post-high school surveys, YRBS • Directories – hard copy and web based with transition resources • State public health telephone or web-video broadcasts on transition topics – with CEUs for professionals • Web-site with transition information and state and national links to resources • Family/youth/provider newsletters with transition information – hard copy and web-based • Governors’ cabinets focusing on children, youth and young adults (up to age 30) • Multiagency state/regional transition summits with health focus or health track • Collaboration with mental health and adolescent health agencies/specialists for transition planning • Collaboration and media campaigns with faith communities, Centers for Independent Living, aging agencies for improved services for people with disabilities • Data system initiatives

38. transition progress & trends: Block Grants fy2005  fy2010Transition

39. Transition- State Activities • Participation in Disability Mentoring Day and state Youth Leadership Forums • Transition fairs with schools and communities; separate programs for girls and boys • Site visit criteria for contractors includes specific transition planning activities and/or outcomes • Staff training; transition activities incorporated into job descriptions and performance evaluations • Designated transition specialists in agency – state or regional • Sending transition preparation materials to youth at specific ages; focus on expectations for developing independence • Distributing transition guides, checklists, workbooks, videos, posters to clinics and medical practices and family groups • Focus on foster youth • Surveys of graduates to determine transition outcomes

40. Transition Expectations • FY2005: 13 states predicted that 20% or more of YSHCN will be prepared to transition successfully • FY2008: 19 states predicted 20%+ of youth will be prepared by 2010; 8 States predicted 50% by 2010 • FY2010: 27 states predicted 50%+ of youth will be prepared to transition in 2013 • 2005-2008: Based on 2001 NS-CSHCN results of 5.8% families with youth aged 13-17 that said youth receive transition services. • 2010: After results of 2005-6 NS-CSHCN with different transition questions showed that 41.2% of families with children 12-17 said they had received transition services, states increased their targets. In FY2010, 27 states expect 50% or more of youth to be prepared for transition by 2013 compared with 8 states with that prediction in FY2008.

41. Interagency CollaborationFindings and OutcomesToni Wall and Debbie Gilmer • Building capacity: state, regional and local interagency transition councils and other related efforts • Information and resources are critical—health care, education, employment, community living • Put youth in the driver’s seat, early: assent to consent, at IEP and 504 meetings • Leverage and align resources—know who else has transition related responsibilities (education, children’s services, VR, SSI, etc.)

42. Recommendations • Partner, partner, partner! • With youth and families • With other state and community agencies and providers • Maintain high expectations for college and careers: everyone can work! • Maintain healthy lifestyles—avoid absenteeism • Secure part time work and/or volunteer experiences and internships while in high school

43. Celebrating Our Partnerships • State Title V Programs • State, local and regional Interagency Councils on Transition • Federal Partners: OSEP, SAMHSA, SSA, Labor • NSTTAC • APSE • CESSI –Ticket to Work • National Center Directory

44. Title V Directors’ Survey43 people entered data; 23 states completed States want help with: • Screening – 63% • Developing YACs – 65% • Teaching youth self management – 71% • Health care transition policy – 82% • Helping physicians with reimbursement – 77% • Health care transition on state teams – 80% • See Title V Resource document - thanks!

45. What’s next? • Enhancing Youth Voice • Health Care Reform issues • E-Health • Round 3 of NS-CSHCN • HP2020: Transition objectives • Workforce development - Health Care Professional transition education and experience • July 1: National Center for Health Care Transition for Youth with Special Health Care Needs

46. THANKS!!! • To MCHB Project Officers (many!) • To all state CYSHCN Directors / Transition Coordinators • Youth and Family leaders who have taught us • To other National Centers, D70 Grants and F2F-HICs • To all involved in Topical Calls – archives of all of them on www.hrtw.org/hrtwu • To participants in our many activities – families, youth, physicians, health care professionals, education, workforce development, independent living and others working with YSHCN