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Transcript of Addressing Health Care Transition to Improve Post-School Outcomes Texas Transition Conference...
Addressing Health Care Transition to Improve Post-School Outcomes
Texas Transition ConferenceFebruary 19, 2015
Topics to be Covered
• Children with Special Health Care Needs Services Program
• Transitioning to adult health care for CYSHCN• Medical home for transitioning CYSHCN• Education and health care transition• Resources
CHILDREN WITH SPECIAL HEALTH CARE NEEDS SERVICES PROGRAM
Maternal and Child Health Services Block Grant (Title V)
• Federal program: Social Security Act of 1935• Block Grant: 1981• Funding to support programs for CSHCN to
develop family-centered, community-based, coordinated systems of care
CSHCN Services Program
• Focus: improving the lives of people with disabilities and children with chronic health conditions
• Six goals based on Title V and state performance measures
• Administered by the Texas Department of State Health Services
CSHCN Services Program
• Mission: To support family-centered, community-based strategies for improving the quality of life for children with special health care needs and their families
Program Components
• Comprehensive health care benefits• Case management– Regional staff– Community based contractors
• Community based contractors– Case management– Family supports and community resources
Title V National and State Performance Measures
• Children live in families in the community• Families are partners with the people who provide care
and are please with their services• Children have a medical home that knows them well and
helps find and get all the care they need• Families have health insurance to pay for the services
their child needs• Programs and services are set up so that they are easy
to use• Youth have the services and supports they need to move
to adult health care, work, and independent living
CSHCN Services Program Community Based Contractors
MEDICAL HOME
What is a Medical Home?
• An approach to providing comprehensive care• Not a building, house, hospital, or home health
care service• Care team works in partnership with a child
and a child’s family to assure that all of the medical and non-medical needs of the patient are met
National Center for Medical Home Implementation
Care should be
• Accessible• Family-centered• Continuous• Coordinated• Comprehensive• Compassionate• Culturally effective
AAP: National Center for Medical Home Implementation
Who is Part of a Medical Home?
• Child and family• Doctors, nurses, dentists, therapists,
pharmacists, other care professionals• Teachers, social workers, personal care
providers, community organizations• Other service providers that may offer
assistance• Other family, friends, neighbors
Roles of a Medical Home
• Respects child and family• Shares information with the family and includes
them in decisions• Provides health care• Works to catch problems early• Helps plan for/manage chronic health problems• Finds specialists• Connects to local resources• Lowers family stressMedical Home Leadership Network, University of Washington 2002
Roles of Parents/Caregivers
• Parents are a constant in their child’s life• They are the experts on their child’s strengths
and needs• They are the supervisor of their child’s medical
home• They are the visionaries who see the “big
picture” of their child and his/her future
Region 4 Genetics Collaborative
Assessing a Medical Home
• The family is treated as a central member of the medical home team
• Mutual respect and trust is shared with the child’s doctor• The family’s culture and religious beliefs are valued• The medical home team partners with one another to meet the
child’s needs• The child receives adequate care• The family gets help finding other providers and services• The family feels supported• The medical home team helps the family manage their child’s
care• The child’s doctor makes sure the family understands their
choicesMedical Home Leadership Network, University of Washington 2002
Ensuring Good Care in a Medical Home
• Know everyone on your medical home team• Ask questions at each visit• Ask for more time for your visit if needed• Make a care notebook and share it with your
medical home team• Talk about important changes• Ask for clarification if you don’t understand• Ask for a written list of expectations until your
child’s next visit• Ask about after-hours care if neededMedical Home Leadership Network, University of Washington 2002
The Educator’s Role in a Medical Home
• Partner with an interdisciplinary team to meet the child’s needs
• Communicate regularly with the team about the child’s needs and accomplishments
• Ensure that the child receives adequate care and services
• Provide support to the family• Assist the family in finding other providers and
services• Ensure that the family understands the choices they
make
TRANSITION
What is transition?
What is Transition?
“dynamic, LIFELONG PROCESS that seeks to meet [youths’] individual needs as they move from childhood to adulthood. The goal is to MAXIMIZE LIFELONG FUNCTIONING and potential through the provision of high-quality, developmentally appropriate health care services that CONTINUE UNINTERRUPTED as the individual moves from adolescence to adulthood. It is PATIENT CENTERED, and its cornerstones are flexibility, responsiveness, continuity, comprehensiveness, and coordination’’
AAP, AAFP, ACP – Pediatrics 2002
Why Transition?
• Most youth with chronic illnesses will survive into adulthood and, depending on the severity and specifics of their disability, should transition to an adult model of care
• Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care
AAP, AAFP, ACP – Pediatrics 2011
At what age does transition begin?
Six Core Elements of Health Care Transition
1. Transition policy2. Transition tracking and monitoring3. Transition readiness4. Transition planning5. Transfer to adult care/adult model of care6. Transfer completion/follow-up
Got Transition
Every child transitions to adulthood
One Size Does NOT Fit All
“INDIVIDUAL STEPS ALONG THE TRANSITION PROCESS WILL VARY from one youth to the next depending on individual patient, family/caregiver, health care professional, and community resource factors.”
“A WELL-TIMED transition from child to adult-oriented care is SPECIFIC to each person…”
AAP, AAFP, ACP – Pediatrics 2011
TRANSITION AND MEDICAL HOME
U.S. and Texas Data
CYSHCN PrevalenceCa
lifor
nia
Nev
ada
Sout
h D
akot
a
Utah
Colo
rado
Oreg
onAr
izon
aM
onta
naIll
inoi
sN
ew Je
rsey
Iow
aW
ashi
ngto
nW
isco
nsin
Geor
gia
Mis
siss
ippi
Dis
tric
t of C
olum
bia
Penn
sylv
ania
Nor
th C
arol
ina
Conn
ectic
utRh
ode
Isla
ndOk
laho
ma
Alab
ama
Mas
sach
uset
tsW
est V
irgi
nia
New
Ham
pshi
reKe
ntuc
ky
10
12
14
16
18
20
Texas: 13.4%Nationwide: 15.1%Source: NS-CSHCN 2009/10
Transition and CYSHCNKa
nsas
Utah
Mon
tana
Neb
rask
aM
inne
sota
Mas
sach
uset
tsCo
nnec
ticut
Alas
kaVi
rgin
iaIn
dian
aRh
ode
Isla
ndCo
lora
doTe
nnes
see
Wes
t Vir
gini
aSo
uth
Caro
lina
Mis
sour
iN
ATIO
NAL
Mis
siss
ippi
Calif
orni
aKe
ntuc
kyM
aryl
and
Ariz
ona
Oreg
onAl
abam
a
Dis
tric
t of C
olum
bia
Arka
nsas
30
35
40
45
50
55
Texas: 35.4%Nationwide: 40.0%Source: NS-CSHCN 2009/10
CYSHCN Prevalence and TransitionCa
lifor
nia
Nev
ada
Sout
h D
akot
a
Utah
Colo
rado
Oreg
onAr
izon
aM
onta
naIll
inoi
sN
ew Je
rsey
Iow
aW
ashi
ngto
nW
isco
nsin
Geor
gia
Mis
siss
ippi
Dis
tric
t of C
olum
bia
Penn
sylv
ania
Nor
th C
arol
ina
Conn
ectic
utRh
ode
Isla
ndOk
laho
ma
Alab
ama
Mas
sach
uset
tsW
est V
irgi
nia
New
Ham
pshi
reKe
ntuc
ky
10
12
14
16
18
20
Kans
as
Utah
Mon
tana
Neb
rask
aM
inne
sota
Mas
sach
uset
tsCo
nnec
ticut
Alas
kaVi
rgin
iaIn
dian
aRh
ode
Isla
ndCo
lora
doTe
nnes
see
Wes
t Vir
gini
aSo
uth
Caro
lina
Mis
sour
iN
ATIO
NAL
Mis
siss
ippi
Calif
orni
aKe
ntuc
kyM
aryl
and
Ariz
ona
Oreg
onAl
abam
a
Dis
tric
t of C
olum
bia
Arka
nsas
30
35
40
45
50
55
CYSHCN Receiving Care Within a Medical HomeTexas: 40.1%Nationwide: 43.0%Source: NS-CSHCN 2009/10
Dis
tric
t of C
olum
bia
New
Mex
ico
Ariz
ona
Flor
ida
Mis
siss
ippi
Nev
ada
Calif
orni
aN
ew Je
rsey
New
Yor
kM
onta
naTE
XAS
Loui
sian
aOr
egon
Del
awar
eSo
uth
Dak
ota
Virg
inia
Alas
kaId
aho
NAT
ION
ALCo
lora
doM
ichi
gan
Arka
nsas
Rhod
e Is
land
Wis
cons
inM
aryl
and
Verm
ont
Illin
ois
Wyo
min
gM
isso
uri
Nor
th C
arol
ina
Sout
h Ca
rolin
aH
awai
iW
ashi
ngto
nGe
orgi
aTe
nnes
see
Conn
ectic
utOk
laho
ma
Utah
Ohio
Wes
t Vir
gini
aIo
wa
Mas
sach
uset
tsM
aine
Nor
th D
akot
aM
inne
sota
Penn
sylv
ania
Neb
rask
aIn
dian
aKa
nsas
New
Ham
pshi
reKe
ntuc
ky
0
10
20
30
40
50
60
CYSHCN Transitioning in a Medical Home Texas Data from NS-CSHCN 2009/10
Unsuccessful Transition Successful Transition
39.4%
60.6%
78.1% 21.9%
Without Medical HomeWith Medical Home
EDUCATION AND HEALTH CARE TRANSITION
The First Discussion with Families
• Let families know what they can expect– Age at which transition services will begin and end– Specific services or activities that school will offer– School’s goals for all clients as they transition to
adulthood
• Alleviate any concerns• Focus on small, short-term goals that will lead
to larger goals• Remind families of the importance of starting
early
Why Consider Health Care?
“Positive postschool outcomes for students with [special health care needs] depend on their ability to manage their health so they can participate fully in work, postsecondary education, and social activities.”
Repetto et al. 2013
Health Care Needs Are Present in All Life Domains
Students need support from teachers to address their health care• Dealing with school absence• Taking part in school activities• Peer relationships• Explaining their condition • Having someone to talk to about health-related
worries
Mukherjee et al. 2000
Taxonomy for Transition Programming
• Family involvement• Program structure• Interagency collaboration• Student development• Student-focused planning
P. Kohler 1996
Family Involvement
• Family Involvement• Involvement in student assessment• Parents/families exercise decision making• Parent/family attendance at IEP meeting
• Family Empowerment• Pre-IEP planning activities for parents/families• Parents/families presented with choices• Transition information provided to parents/families prior to
student’s age 14
• Family Training• Promoting self-determination• Transition-related planning processP. Kohler 1996
Family Involvement
• Health: manage medical appointments• Information to parents about increasing youth’s role
as manager of medical appointments• Calling to make appointments• Visiting the doctor alone• Getting to the office alone
Repetto et al. 2012
Program Structure
• Program Philosophy• Curricula are outcome-based• Education provided in least restrictive environment• Education provided in integrated settings
• Program Evaluation• Ongoing program evaluation• Specific evaluation of student outcomes
• Strategic Planning• Community-level strategic planning focused on local
issues and services
P. Kohler 1996
Program Structure
• Program Policy• Program values, principles, and mission are clearly
articulated• Specific and consistent transition-related policies and
procedures between and within agency and education participants
• Human Resource Development• Pre-service training on transition practices• Transition-related technical assistance• Ongoing transdisciplinary staff development
• Resource Allocation• Creative use of resources• Student/family role in resource allocation
P. Kohler 1996
Program Structure
• Health: communicate with school staff about health care transition needs of patients• Policies and procedures between health care and
education to facilitate communication• Develop shared goals in the IEP and care plan
Repetto et al. 2012
Interagency Collaboration
• Collaborative Service Delivery• Coordinated requests for information (e.g., to parents, employers)• Collaborative development and use of assessment data• Coordinated and shared delivery of transition-related services• Collaborative program planning and development, including employer
involvement• Collaboration between post-secondary education institutions and the
school district • Collaborative Framework
• Formal interagency agreement• Roles of service providers clearly articulated• Student information shared among agencies via established procedures
(with appropriate release of information and confidentiality)• Single-case management system• Designated transition contact person for all service providers
P. Kohler 1996
Interagency Collaboration
• Health: teach educators about the types of skills that youth need to manage their health• Teach health care providers about available
resources, legal issues, and work/school systems• Teach educators about the health care transition
process and potential barriers
Repetto et al. 2012
Student Development
• Life Skills Instruction• Employment Skills Instruction• Career & Vocational Curricula• Support Services• Assessment • Structured Work Experience
P. Kohler 1996
Student Development
• Health: Communicate effectively with physician• Teach strong written and verbal skills and
assertiveness, build confidence, self-advocacy• Obtain important medical information that is
pertinent to the student’s success in school
Repetto et al. 2012
Student-Focused Planning
• IEP Development• Options identified for each outcome area or goal• Educational program corresponds to specific goals• Goals are measurable• Progress or attainment of goals is reviewed annually
• Student Participation• Planning team includes student, family members, and school and participating
agency personnel• Assessment information is used as basis for planning• Planning meeting time and place conducive to student and family participation• Accommodations made for communication needs (e.g., interpreters)• Referral to adult service provider(s) occurs prior to student’s exit from school
• Planning Strategies• Planning process is student-centered• Student involvement in decision making
P. Kohler 1996
Student-Focused Planning
• Health: Plan for post-school leisure, work, and education• Include health related issues in IEP• Include medical personnel on IEP team
Repetto et al. 2012
How can schools use the Six Core Elements of
Health Care Transition?
Transition Policy
Transition policies describe the practice’s or school’s approach to transition.
Transition Tracking and Monitoring
Schools and practices identify youth in need of transition services and track their progress as they get older.
Transition Readiness
Assessments are conducted to identify needs of transition-age youth.
Transition Planning
Transition plans establish goals and prioritize actions necessary for a successful transition.
Transfer of Care
Transfer of care occurs when the youth moves from child services to adult services.
Transfer Completion and Follow-up
Transfer follow-up ensures that the youth is thriving and that feedback is elicited to improve the transition experience for other youth.
Collaboration is Key!
Teacher awareness/knowledge of medical conditions is correlated with perceptions of quality of care.
Mukherjee et al. 2000
Collaboration is Key!
1. Obtain health-related information2. Ensure information is shared within
and between schools3. Provide emotional support4. Provide medical care in school5. Take responsibility for coordinating
support for students
Mukherjee et al. 2000
RESOURCES
Texas Title V Transition Workgroup
http://www.dshs.state.tx.us/cshcn/Transition-Workgroup.aspx
• Mission: To promote a collaborative approach to the provision of transition services for youth in Texas with disabilities and special health care needs and their families.
• Vision: Successful transition outcomes for all youth in Texas with disabilities and special health care needs and their families
• Strategic Plan Development
Transition Toolkit
• Create a CSHCN Services Program policy on transition
• Develop a database to track clients as they transition to adulthood
• Compile transition-related resources for CYSHCN and families– Draft by February 2015
Transition Conference
• Chronic Illness and Disability: Transition from Pediatric to Adult-based Care Conference
• Scholarships• Broadcast sites
Medical Home Workgroup
http://www.dshs.state.tx.us/cshcn/medicalhome/mhgroup.shtm
• Mission: To enhance the development and promote the principles of the Patient-Centered Medical Home model within the state of Texas for all children and youth including those with special health care needs.
• Vision: All children and youth in Texas, including children with special health care needs, will have a medical home that provides accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent services.
• Strategic Plan Revisions
Local Resources
• Houston: UH Families CAN• Houston: UTHSC Houston CHoSeN Clinic• San Antonio: UTHSC San Antonio CF Clinic• Amarillo: Coalition of Health Services• San Benito: Cameron County DHHS• Statewide: P2P Pathways to Adulthood
DSHS Email Updates
• Resources, events, other updates and opportunities
• DSHS CSHCN http://bit.ly/txschcn• DSHS CSHCN Medical Home http://bit.ly/texasmh• DSHS CSHCN Transition http://bit.ly/txtrans
Future Activities
• Increase and maintain family involvement in all activities
• Encourage the development of medical homes in Texas for transition-age CYSHCN
• Create opportunities for providers to increase their capacity to serve transition-age CYSHCN
• Encourage future providers to serve transition-age CYSHCN
• Develop tools for providers and families to prepare for transition to adulthood
Key Takeaways
• Youth with chronic illnesses are living into adulthood, necessitating planning strategies to manage conditions as adults
• Health care is an important factor to consider across all life domains
• Schools can collaborate with health care professionals to ensure that youth have successful transitions
• DSHS has resources to support schools
Contact Information
Rachel Jew, MPAffProgram SpecialistChildren with Special Health Care Needs Services ProgramDepartment of State Health Services(512) [email protected]