Transcript Celebrating the HRTW National Resource Center: Findings

Celebrating the HRTW
National Resource
Center:
Findings,
Recommendations
and Thanks
HRTW Topical Call
April 21, 2010
www.hrtw.org
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
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
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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 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
• 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 Bureau
Healthy & 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 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
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 Involvement
States have Youth Advisory
Committees
FY2005
FY2010
Planning
4
22
8
17
5
14
28
7
5
12
2
States that have youth on
Family/Community Advisory
groups or YACS from Governors’
Councils or with another agency
Youth involved in conference
presentations
States involved with youth
groups, e.g. Youth Leadership
Forums, KASA, NYLN, other state
youth groups, etc
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 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.
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 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 transitionoriented 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
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
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 Home
FY 2005
FY 2010
31
59
5
29
6
Working with Medical Schools
18
50
2
Speakers bureaus/DVDs/webbased trainings for physicians
and others
1
26
2
Working with local
pediatricians and state AAP
chapter
Working with Family Physicians
or Internists or state medical
Associations
Participated in Medical Home
Training (AAP and Shriners) or
NICHQ Medical Home Learning
Collaborative
www.hrtw.org
Planning
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, webbased, 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 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
www.hrtw.org
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
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 (FreeMind)
• 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
7
0
States pay COBRA, insurance
premiums:
AL, AR MI, NM, OH, TX, VT
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
FY2005
FY2010
Planning
States integrate health into
state transition conferences
14
46
1
States have transition
information/links on their
websites
14
39
1
States have directories (hard
copy and/or web-based)
with transition resources
16
50
3
State and/or regional
collaborative related to
transition
(usually education-based)
37
59
Newsletters for families have
transition information
– hard copy or electronic
11
24
www.hrtw.org
4
COMMUNITY ORGANIZED
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– 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
8
27
4
State contract language has
transition requirements
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
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2005-2008: Based on 2001 NS-CSHCN results of 5.8% families
with youth aged 13-17 that said youth receive transition services.
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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 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.)
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’ 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!
www.hrtw.org
What’s next?
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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!!!
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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
www.hrtw.org