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Celebrating the HRTW National Resource
Center:Findings,
Recommendations and Thanks
HRTW Topical Call April 21, 2010
www.hrtw.org
Outline of CallCelebrating 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
www.hrtw.org
The HRTW Team www.hrtw.org
• MCHB Project Officer – Lynda Honberg [email protected] • 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 [email protected]
• Debbie Gilmer, MEd - Co-Director, HRTW National Resource Center and Director, Center for Self Determination, Health & Policy at the Maine Support Network [email protected]
• Patti Hackett, MEd – Co-Director, HRTW National Resource Center, Maine Support Network [email protected]
• Richard (Rich) C. Antonelli, MD, MS, FAAP, Medical Director, Children’s Hospital Boston Integrated Care Organization (CHICO) [email protected]
• Patience H. White, MD, FAAP, MA, Chief Public Health Officer, Arthritis Foundation [email protected]
www.hrtw.org
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 [email protected]
• Kathy Blomquist, RN, PhD - Title V Consultant, HRTW National Resource Center and KY Commission for CSHCN [email protected]
• Ceci Shapland, RN, MSN – Consultant, HRTW National Resource Center [email protected]
• Patricia (Trish) Thomas, Consultant, HRTW National Resource Center & Partnership Coordinator, Family Voices National Center for Family Professional Partnerships [email protected]
• Theresa Glore, MS - Title V Consultant, HRTW National Resource Center; KY Department of Public Health [email protected]
• Betty Presler, ARNP, PhD, Nurse practitioner and care coordinator, Shriners Hospital for Children, Lexington; Consultant, transition and care coordination, Shriners Hospital for Children system [email protected]
• Liz Depoy, PhD, Professor, University of Maine Center for Community Inclusion and Disability Studies & Evaluator, HRTW National Resource Center [email protected]
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
Other MCHB Initiatives promoting Transition
• Medical Home Grants• Champions for Progress Incentive
Awards• Family-to-Family Health Information
Centers (promote 6 NPMs)
www.hrtw.org
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
www.hrtw.org
CHANGES IN LEADERSHIPBetween 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
www.hrtw.org
TRANSITION PROGRESS & TRENDS: BLOCK GRANTS FY2005 FY2010
Screening
FY 2005 FY2010 Planning
Screening of teens 16 32 7
Comprehensive screening
3 19 12
www.hrtw.org
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
www.hrtw.org
TRANSITION PROGRESS & TRENDS: BLOCK GRANTS FY2005 FY2010
Youth InvolvementFY2005 FY2010 Planning
States have Youth Advisory Committees
4 22 8
States that have youth on Family/Community Advisory groups or YACS from Governors’ Councils or with another agency
17 5
Youth involved in conference presentations
14 28 7
States involved with youth groups, e.g. Youth Leadership Forums, KASA, NYLN, other state youth groups, etc
5 12 2
www.hrtw.org
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
www.hrtw.org
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.
www.hrtw.org
Increase in YAC’s during HRTW!How many States have
Youth Advisory Councils?
2005: 4
2006: 6
2007: 15
2008: 18
2009: 22!!
www.hrtw.org
www.hrtw.org
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!”
www.hrtw.org
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!”
www.hrtw.org
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
www.hrtw.org
Key Findings69% provide transition services
Requested: more quality information and tools for youth and families
23% involve youth as advisorsRequested: more guidance in promoting youth leadership
85% partner with their Title V Agency; Less partnership with community transition- oriented agencies
www.hrtw.org
Key Findings: Barriers
Major Barriers:
• Agree with providers that fragmentation of services is largest barrier
• Limited insurance coverage
• Available adult practitioners
www.hrtw.org
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
www.hrtw.org
Cultural Beliefs
• Importance of acknowledging culture in transition
• Intergenerational tension
www.hrtw.org
Travis SolomonIndigenous: Southwest Pueblo: Laguna/ZuniLaguna, NM
29 years oldCentral NM Community CollegeMajor: Sociology
GOAL: MPA, Gallaudet University
Growing up : Cultural Broker to the community
www.hrtw.org
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
www.hrtw.org
TRANSITION PROGRESS & TRENDS: BLOCK GRANTS FY2005 FY2010
Medical HomeFY 2005 FY 2010 Planning
Working with local pediatricians and state AAP chapter
31 59
Working with Family Physicians or Internists or state medical Associations
5 29 6
Working with Medical Schools 18 50 2
Speakers bureaus/DVDs/web-based trainings for physicians and others
1 26 2
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
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
Shriners Hospitals for Children SystemCollaboration 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
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
TRANSITION PROGRESS & TRENDS: BLOCK GRANTS FY2005 FY2010
Insurance
FY 2005 FY2010 Planning
Distributing information on insurance
8 22 7
Helping physicians with reimbursement
2 19 7
States pay COBRA, insurance premiums: AL, AR MI, NM, OH, TX, VT
7 0
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
TRANSITION PROGRESS & TRENDS: BLOCK GRANTS FY2005 FY2010
Community Organized
www.hrtw.org
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
www.hrtw.org
TRANSITION PROGRESS & TRENDS: BLOCK GRANTS FY2005 FY2010
Transition
FY2005 FY2010 Planning
State Title V CYSHCN Program reports having dedicated transition coordinator (sometimes part of an FTE)
10 24 5
State Title V CYSHCN Program conducts formal transition planning (assessment forms, educational materials, mailings at particular ages, etc.)
16 44 10
State contract language has transition requirements
8 27 4
www.hrtw.org
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
www.hrtw.org
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.
www.hrtw.org
Interagency CollaborationFindings 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.)
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
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!
www.hrtw.org
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
www.hrtw.org
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
