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

Outline of Call Celebrating HRTW Findings, 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

The HRTW Team MCHB Project Officer – Lynda Honberg 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 Debbie Gilmer, MEd - Co-Director, HRTW National Resource Center and Director, Center for Self Determination, Health & Policy at the Maine Support Network Patti Hackett, MEd – Co-Director, HRTW National Resource Center, Maine Support Network Richard (Rich) C. Antonelli, MD, MS, FAAP, Medical Director, Children’s Hospital Boston Integrated Care Organization (CHICO) Patience H. White, MD, FAAP, MA, Chief Public Health Officer, Arthritis Foundation

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 Kathy Blomquist, RN, PhD - Title V Consultant, HRTW National Resource Center and KY Commission for CSHCN Ceci Shapland, RN, MSN – Consultant, HRTW National Resource Center Patricia (Trish) Thomas, Consultant, HRTW National Resource Center & Partnership Coordinator, Family Voices National Center for Family Professional Partnerships Theresa Glore, MS - Title V Consultant, HRTW National Resource Center; KY Department of Public Health Betty Presler, ARNP, PhD, Nurse practitioner and care coordinator, Shriners Hospital for Children, Lexington; Consultant, transition and care coordination, Shriners Hospital for Children system Liz Depoy, PhD, Professor, University of Maine Center for Community Inclusion and Disability Studies & Evaluator, HRTW National Resource Center

Maternal and Child Health Bureau Healthy & 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 : 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

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

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

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

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

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

TRANSITION PROGRESS & TRENDS : B LOCK G RANTS FY 2005  FY 2010 Screening FY 2005FY2010Planning Screening of teens16327 Comprehensive screening 31912

S CREENING –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

TRANSITION PROGRESS & TRENDS : B LOCK G RANTS FY 2005  FY 2010 Youth Involvement FY2005FY2010Planning States have Youth Advisory Committees 4228 States that have youth on Family/Community Advisory groups or YACS from Governors’ Councils or with another agency 175 Youth involved in conference presentations States involved with youth groups, e.g. Youth Leadership Forums, KASA, NYLN, other state youth groups, etc 5122

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

Main Ideas of Youth Involvement Mallory 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.

Increase in YAC’s during HRTW! How many States have Youth Advisory Councils? 2005: : : : : 22!!

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!”

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!”

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

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

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

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

Cultural Beliefs Importance of acknowledging culture in transition Intergenerational tension

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

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

TRANSITION PROGRESS & TRENDS : B LOCK G RANTS FY 2005  FY 2010 Medical Home FY 2005FY 2010Planning Working with local pediatricians and state AAP chapter 3159 Working with Family Physicians or Internists or state medical Associations 5296 Working with Medical Schools18502 Speakers bureaus/DVDs/web- based trainings for physicians and others 1262 Participated in Medical Home Training (AAP and Shriners) or NICHQ Medical Home Learning Collaborative All but 13 states and 6 territories participated in one of these

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

Medical Home Findings - 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

Shriners Hospitals for Children System Collaboration with HRTW - Betty Presler Example of what Hospitals are doing Outcomes 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

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

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

TRANSITION PROGRESS & TRENDS : B LOCK G RANTS FY 2005  FY 2010 Insurance FY 2005FY2010Planning Distributing information on insurance 8227 Helping physicians with reimbursement 2197 States pay COBRA, insurance premiums: AL, AR MI, NM, OH, TX, VT 70

I NSURANCE – State Activities Benefits books/pamphlets and trainings for planning for changes in insurance at age 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

Insurance – Health Care Reform NOW: 47% age 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 -

TRANSITION PROGRESS & TRENDS : B LOCK G RANTS FY 2005  FY 2010 Community Organized FY2005FY2010Planning States integrate health into state transition conferences States have transition information/links on their websites States have directories (hard copy and/or web-based) with transition resources State and/or regional collaborative related to transition (usually education-based) 3759 Newsletters for families have transition information – hard copy or electronic 11244

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

TRANSITION PROGRESS & TRENDS : B LOCK G RANTS FY 2005  FY 2010 Transition FY2005FY2010Planning State Title V CYSHCN Program reports having dedicated transition coordinator (sometimes part of an FTE) State Title V CYSHCN Program conducts formal transition planning (assessment forms, educational materials, mailings at particular ages, etc.) State contract language has transition requirements 8274

T RANSITION - 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

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 : Based on 2001 NS-CSHCN results of 5.8% families with youth aged that said youth receive transition services. 2010: After results of NS-CSHCN with different transition questions showed that 41.2% of families with children 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.

Interagency Collaboration Findings and Outcomes Toni 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.)

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

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

Title V Directors’ Survey 43 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!

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

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 To participants in our many activities – families, youth, physicians, health care professionals, education, workforce development, independent living and others working with YSHCN