Transition Processes of Medical Homes HRTW Questionnaire Early Findings

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Transition Processes of Medical HomesHRTW
Questionnaire Early Findings

• Kathleen B. Blomquist, RN, PhD
• Patience H. White, MD, MA, FAAP
• HRTW National Resource Center
• MCHB Meeting - Medical Home Grantees
• Washington, DC, November 29, 2006

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HRTW Team www.hrtw.org
Title V Leadership Toni Wall, MPA Kathy
Blomquist, RN, PhD Medical Home Richard
Antonelli, MD, MS, FAAP Transition
Patience H. White, MD, MA, FAAP
Betty Presler, ARNP, PhD Federal Policy
Patti Hackett, MEd
Tom Gloss Family, Youth CC Ceci Shapland, MSN
Trish
Thomas Interagency Debbie Gilmer, MEd HRTW
University Jon Nelson, MS
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The Ultimate Outcome Transition to Adulthood
Health Care Transition Requires Time Skills
for children, youth, families and their
Doctors too!

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Consensus Statement Health Care Transition

• American Academy of Pediatrics
• American Academy of Family Physicians
• American College of Physicians-American Society
  of Internal Medicine
• CONSENSUS STATEMENT calls on physicians to
• Understand the rationale for transition
• from child-oriented health care
• Have the knowledge and skills to facilitate
• that process
• Know if, how, and when transfer of care
• is indicated

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Consensus Statement Health Care Transition

• Critical First Steps
• to Ensuring Successful Transitioning
• To Adult-Oriented Health Care
• 1. Identify primary care provider
• 2. Identify core knowledge and skills
• 3. Maintain an up-to-date medical summary that is
  portable and accessible
• Pediatrics 2002110 (suppl) 1304-1306

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Consensus Statement Health Care Transition

• Critical First Steps
• to Ensuring Successful Transitioning
• To Adult-Oriented Health Care
• 4. Create a written health care transition plan
  by age 14 what services, who provides, how
  financed
• 5. Apply preventive screening guidelines
• 6. Ensure affordable, continuous health insurance
  coverage
• Pediatrics 2002110 (suppl) 1304-1306

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HRTW Surveys Status of Transition, 2006

• STATES
• Title V CYSHCN 40
• Medical Homes 30 practices/17states
• HOSPITALS NATIONWIDE
• Shriners Hospitals 20
• NACHRI Hospitals 18

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HRTW Surveys Status of Transition 2006

• Distribution
• AAPs Center for Medical Home Initiatives
• mailing lists
• - Medical Home Learning Collaboratives
• - CATCH grantees for past 5 years
• - Medical Home Projects
• - MCHB Integrated Services Grants
• - AAP Listservs
• - LEAHs

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HRTW Questionnaire for Medical Homes

• Sections
• Policies and Practices
• Relationships with Community Resources
• Perception of Barriers to Transition
• Resources Used
• How HRTW and AAP can help
• Items based on all 6 Critical First Steps in
  Census Statement

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HRTW Surveys Results - Summer/Fall 2006

• About Those Who Responded
• 28 practices / 17 states
• Most involved with Medical Home projects
• 25 pediatricians, 2 Med-Peds, 1 Family
• Knowledge of Consensus Statement
• 57 were familiar
• 11 unsure
• 32 not

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1. Primary Care

• 50 Have Policy to Transition Youth
• - 38 PA White, Hackett, Turchi
  Gatto (N21)
• - 13 RI Burke, Spoerri, Price,
  Cardosi,
• Flanagan
  (N103)
• 61 Have practice to whom they refer
• - 66 PA White, et
  al
• RI difficulty finding adult provider
• - 70 no for adolescents
• - 51 no for YSHCN

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1. Primary Care (cont)

• 54 recruit providers
• adult primary /specialty
• (32 want help)
• 68 support adult providers
• assuming care for YSCHN
• (21 want help)
• - xx PA White, et al
• contacted adult provider

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1. Primary Care (cont)

• 93 provide care coordination to
• youth with complex conditions
• (7 want help)
• 54 have dedicated staff member
• who coordinates transition
• - 33 PA White, et al

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2. Core Knowledge Skills

• 36 have forms to support transition
• (82 want help)
• 35 provide educational materials
• regarding transition
• (50 want help)

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2. Core Knowledge Skills (cont)

• 61 help youth/families
• plan for emergencies
• (29 want help)
• 67 assist with accommodations
• school/studying or work
• (21 want help)

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2. Core Knowledge Skills (cont)

• 64 promote independence in
• health condition management
• (25 want help)
• 57 refer to skill-building
• experiences
• (32 want help)

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2. Core Knowledge Skills (cont)

• 86 refer to community resources/
• public benefits (11 want help)
• Formal referral mechanisms in place
• 39 mental health/counseling
• 25 adult subspecialty
• 21 adult PCPs
• 21 dental
• lt 15 make formal referral to adult
• services
• VR, SSI work incentives,
  school or
• college services, recreation,
  transportation,
• attendant care, Centers for
  Independent
• Living, supported living,
  housing
• (about 20 provide information)

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2. Core Knowledge Skills (cont)

• 18 have written policy to discuss
• legal issues by age 18
• - 71 ask for verbal assent
• - 25 ask for written assent
• 19 PA White, et al
• 77 discuss sexuality
• PA White, et al

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Sources of Transition Information

• 57 staff transition coordinator
• 54 self directed
• 46 family to family support
• 25 state Title V CSHCN agency
• 21 used HRTW website (21 unsure)
• 68 used Medical Home website
• (4 unsure)
• 18 dont know where to turn

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Balancing Life Health
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3. Portable Medical Summary

• 40 Make transportable medical
• record for some patients
• (43 want help)
• 29 PA White, et al

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3. Medical Summary to Providers

• RI Burke, et al
• 31 send written summary to adult providers for
  adolescents
• 51 send written summary to adult providers for
  YSHCN
• 18 communicate directly with adult provider to
  assure transition successful

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4. Written Health Transition Plan

• 38 Create individualized
• health transition plan
• for at least some patients
• (39 want help)
• 4 PA White, et al
• 61 Helped write IEP goals
• 28 none
• 29 1-5 x in past year
• 32 6 or more times in past year

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5. Preventive Screening

• 86 Preventive screening CYSHCN
• 32 AAP forms
• 21 GAPS
• 18 Bright Futures
• 18 Guidelines to
• Clinical Preventive
  Services
• 7 State health department forms
• Others created or adapted forms
• 45 - PA White, et al

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5. Preventive Screening (cont)

• 65 Screen to identify
• YSHCN who need transition
• services
• (29 want help)
• Assess for transition readiness
• PA White, et al
• 23 of youth
• 23 of family

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Screen for All Health Needs

• Hygiene
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine (Immunizations, Blood-work, Vision, etc.)
• Secondary Conditions/Disabilities
• Accelerated Aging issues

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6. Ensure Continuous Health Insurance

• 43 assist with planning for
• continuous health insurance
• during transition
• (32 want help)
• PA Survey White, et al
• 36 discuss insurance planning
• 18 discuss estate planning
• 45 discuss long term plans
• 71 assist with SSI medical
• documentation/re-determination
• (25 want help)

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6. Ensure Continuous Health Insurance

• 93 want information on coding
• for reimbursement for
• transition services
• 71 PA White, et al

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Self-Rating of Transition Processes

• 4 Not interested
• 25 No processes, but interested
• 32 Beginning stages
• 18 Working on about halfway to
• where want to be
• 11 Have transition policy and
• processes integrated into practice
• 62 interested in developing
  transition processes
• PA White, et al
• (need more exact and can report in same way
  with HRTW)

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Transition Expansion

• 43 say practice has expanded
• transition services in
• past 2 years
• Staff nurse transition coordinator, on-site
  case
• manager, social worker, Med-Peds
• Formalized assessments/interventions
• - Beginning earlier
• - Developing referral lists for adult
  providers
• - Developing referral lists for other
  services including
• camps, support groups

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Youth/Family Involvement

• 46 have youth/family involvement
• in development of transition
• services (PAC, YAC, support groups,
• focus groups, anecdotes)
• 14 have tracked outcomes
• (satisfaction with system)

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Barriers to Transition Extremely
Important/Important

• 90 Fragmentation of care among
• systems
• 83 Lack of services for YSHCN who
• require supported living
• 82 Lack of knowledge or linkages to
• community resources
• 82 Lack of staff time

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Barriers to Transition Extremely
Important/Important

• 72 Lack of capacity of adult providers
• for care of YSHCN
• 64 Inability to access adult specialty
• care
• 61 Limited coverage for services by
• public/private insurance

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Conclusions

• PREPARE YOUTH - Physicians involved with medical
  home projects are only partially preparing YSHCN
  for transition to adult providers and
  expectations
• TECHNICAL ASSISTANCE - Physicians are asking for
  help to implement the Consensus Statements
  Critical Steps
• BARRIERS - The health, insurance, education, and
  social service systems present many barriers to
  transition of YSHCN to adulthood.

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Assistance Requested from HRTW and AAP

• EDUCATION for training pediatric, family,
  internal medicine residents/practitioners to
  increase capacity
• TOOLS Assessment, transition plans, brief
  interventions, systems and structures for
  building transition into services
• REIMBURSEMENT Organized system of payment and
  responsibility for the population
• RESOURCES Conferences, websites, sources for
  local resources

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The Road to Quality Care for Youth, and their
FamiliesTransition from Pediatric to adult
based care in the US

• Patience H. White, MD, MA, FAAP
• Washington DC

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Guiding Observations New Directions

• Sign Posts A New community of youth with
• SHCN has new expectations
  for their
• future.
• New Destinations New health challenges call
• for a new relationship with
  their
• partners in the Health care
  system
• Road Construction New routes need to be
  developed for this new relationship among youth
  with SHCN, health care providers, and the health
  care system

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Societal Context for youth w/o Dxin Transition

• Parents are more involved-dependency
• Helicopter Parents
• Twixters 18-19
• - live with their parents / not independent
• - cultural shift in Western households, which
• typically whenever a member of the nuclear
• family becomes an adult, they are expected
  to
• become independent.
• How they describe themselves (ages 18-29)
• 61 an adult
• 29 entering adulthood
• 10 not there yet
• (Time Poll, 2004)

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Health Wellness for YSHCN Being Informed

• The physicians prime responsibility is the
  medical management of the young persons disease,
  but the outcome of this medical intervention is
  irrelevant unless the young person acquires the
  required skills to manage the disease and
  his/her life.
• Ansell BM Chamberlain MA. Clinical Rheum.
  1998 12363-374

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Research Context on Readiness for Youth in
Transition

• YSHCN have delayed developmental milestones in
  psycho sexual and social development compared to
  Dutch youth w/o disabilities
• Youth with cancer and ESRD scored much less than
  youth with esoph atresia, Hirschprungs disease,
  anorectal malformations
• All Reported less risk behavior
• Stam J
  Adol Health 2006

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Pilot Study 35 Adult NephrologistsSelf report
survey on transitioned patients at the 20th
Annual Glomerular Disease Collaborative Network
Conference 2005

• Transitioned youth
• - 2 of patients in 95 of the practices
• - come with no introduction 25 of the time
• - often healthier and survive longer than adult-
• onset patients
• Compared to adult patients
• seem more passive and less knowledgeable about
  their disease and meds
• Have developmental and cognitive challenges
• Seem less adherent with appts and meds
• Ferris at al 2005

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Are 17 year olds Ready for Disease self
management?

• 2005 British Study - 77 17 yo youth with JIA
• 20 NOT self medicating
• 55.8 see Rheumatologist with parents, 26 see GP
  independently
• Significant association with independent visits
  (p0.002)
• Majority in mainstream school (76)
• Adolescent Rheumatology Transition Knowledge
  Questionnaire ART KQ Sub-optimal!
• Median score 9 (1 to 15)

Shaw KL, Southwood TR, McDonagh JE 2005
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AERC Outcome Research

• 200 youth (ages 12-20)with SHCN parents
• completed the following instruments
• CMI
• work experience
• Demographics
• parents perception of work readiness
• Results
• Most youth with SHCN feel future certain
• - attitude similar to age mates without
  disabilities
• - delayed in all other
• - CMI categories, esp. knowledge of
  workplace
• Parents think first job experience should be
• at age 16 or older

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Youth are less interested in any transition
organized around medical issues and more
interested in a transition to financial and
social independence.
Adolescent Employment Readiness Center (AERC)
Research
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AERC Context Data on Adolescent Work in the USA

• Teens take health risks less if work lt 20
  hrs/week (JAMA, 1998)
• Part-time work data
• - essential to future work success(Skurikor
  1993)
• - most jobs low skill, low pay(US Dept. of
  Labor)
• - focus on hours worked, not skills attained
• (Mortimer 1994)
• - lack of connection to vocational development
• (Skorikov 1997)
• Minority, poor and disabled youth have less work
  experience but when work, same hours and wages
  attained

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RESULTS Summary of Initial Trends

• After 1 Yr in the AERC, active 13 yr olds
• - more engaged
• 3x as many 13 yo wanted to join
• AERC program than other ages
• had less differences in measurements compared to
  age mates w/o disabilities gap between norms and
  participants increased with age of participants
• made significant improvement compared to other
  ages in the intermediate outcome measures ACLSA
  Life Skills, CMI, and Pediatric QoL

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RESULTS Summary of Initial Trends

• After 3 years in AERC, active participants have
• more education
• more paid work experience
• more likely to leave SSI ( 3 are off SSI, 3 on
  their way)
• Improved health from youths point of view
• more likely to have an adult primary care
  physician
• Receiving AERC services
• ROI of program 1 youth leaving the SSI rolls
• pays for 1 Year of the entire program!

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Youth Context in Transition

• What would you think a group of successful
  adults with disabilities would say is the most
  important factor that assisted them in being
  successful?

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FACTORS ASSOCIATED WITH RESILIENCE which is
MOST important?

• Self-perception as not handicapped
• Involvement with household chores
• Having a network of friends
• Having non-disabled and disabled friends
• Family and peer support
• Parental support w/o over protectiveness

Weiner, 1992
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FACTORS ASSOCIATED WITH RESILIENCE which is
MOST important?

• Self-perception as not handicapped
• Involvement with household chores
• Having a network of friends
• Having non-disabled and disabled friends
• Family and peer support
• Parental support w/o over protectiveness

Weiner, 1992
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Association/professional Group Context IOM
QUALITY MEASURES

• The Health care system should be
• Safe
• Effective
• Patient centered
• Timely
• efficient
• equitable
• Crossing the Quality Chasm 2001

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Health Care Processes Should Have

• Care based on continuing healing relationships
• Customization based on patient needs and values
• Patient as source of control
• Shared knowledge free flow of infor
• Safety
• Transparency
• Anticipation of needs
• Crossing the Quality Chasm 2001

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Consensus Statement Health Care Transition

• American Academy of Pediatrics
• American Academy of Family Physicians
• American College of Physicians-American Society
  of Internal Medicine
• CONSENSUS STATEMENT
• calls on physicians to
• 1. Rationale for transition
• 2. Knowledge and skills
• 3. Timing for transfer of care
• 4. Portable medical summary
• 5. Health care transition plan by age 14
• Pediatrics 2002110 (suppl) 1304-1306

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Medical Context in Transition

• The adolescent finds themselves
• between two worlds..
• that often do not communicate

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Issue Pediatric Adult
Age-related Growth development, future focussed Maintenance/decline Optimize the present
Focus Family Individual
Approach Paternalistic Proactive Collaborative, Reactive
Shared decision-making With parent With patient
Service entitlement Qualified/eligibility
Non-adherence gtAssistance lt tolerance
Procedural Pain Lower threshold of active input Higher threshold for active input
Tolerance of immaturity Higher Lower
Coordination with federal systems Greater interface with education Greater interface with employment
Care provision Interdisciplinary Multidisciplinary
of patients Fewer Greater
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Medical Context

• Need for more collaboration and less rhetoric
  between pediatric and adult medicine providers
• Cystic Fibrosis Foundation approach as a model
  for future research?

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Transition Tools follow an informed decision
making road

• Shared management
• Structured observation
• Doctor visit Patient role for 15 min visit/ 5Qs
• Medical record (2 MD communication and portable
  for youth)
• For Docs 9 easy questions to plan for a
  successful transition process
• Guide for accommodations for post secondary
  experiences

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Shared Management as the Goal

• Consciously not using more common term
• self-management
• View the highest level of achievement is not
  independence but effective interdependence
• 
  Kieckhefer 2000

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Getting Ready Shared Decision Making
Provider Parent Young Person
Major Responsibility Provides Care Receives Care
Support to Parent and Child Manages Participates
Consultant Supervisor Manager
Resource Consultant Supervisor
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Structured Observation Experience an Adult Med
Visit

• Pre-appt
• - Essential Qs to be asked
• - Essential Qs YOU will ask
• Appt
• - Observe (attitudes approach)
• - Create/Offer questionnaire
• Post-appt
• - Lessons Learned
• - Skills to learn (adult feedback)

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Health .. Doctors OFFICE

• Makes Appts (balance health, fun school)
• Presents Medical Card
• Prepares Qs to ask/assent to consent
• Learns to keep medical records
• Pay and present co-payments
• Calls in Rx (refills Tues-Thurs)

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Tools Medical Records

• Medical Evidence/Documentation
• - qualify for program eligibility
• - obtain funding/reimbursement
• One page Reference Sheet
• - contact info (person, health surrogate,
  doctors, vendors)
• - communication / learning
• - prioritize health issues
• - medications
• - equipment

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9 Easy steps to Plan a Successful Transition

• EXPECTATIONS
• What do you want to be doing in 1-2 years?
• Talk with the child/youth as well as their
  family about expectations for the youths future.
  Think about the future in 1-2 year segments.
• TEACH
• What is your health situation what medical
  needs to you have?
• re-teach about the health condition and needed
  services based on changing cognitive development
  provide prognosis/ natural history data if
  possible.

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9 Easy steps to Plan a Successful Transition

• OPINION
• What do you think.?
• Ask the opinion of your young patientsget their
  ideas respect confidentialitybe open and
  honest.. listen and be askable involve in
  decision making (assent to consent, give them a
  sense of competence)
• CHORES
• Are they doing chores?
• Independence skills start with having
  responsibilities
• in the family

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9 Easy steps to plan a Successful Transition

• ATTENDANCE Have you missed school? Why?
• Support consistent attendance at school which
  will later lead to a pattern of consistent
  attendance on the job and likely hood of
  attendance to post secondary school.
• PLANNING Do you have a transition plan? Where
  will you obtain your health insurance?
• Transition planning is key and more than a
  referral-clarify roles for all involved/understand
  health insurance

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9 Easy steps to plan a Successful Transition

• PARTICIPATION
• What are your friends in school doing? What do
  you do to have fun? Are you exercising?
• Ask about social/ leisure activities and
  strategize how they can participate more fully
  acknowledge teen lifestyle
• CAREER
• Are you planning to do some volunteer work?
  What do you want to do when you grow up? Do you
  know how to get there?
• Ask about volunteer opportunities in the
  community (keep on work developmental
  milestones), paid work lt 20 hours/week

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9 Easy steps to plan a Successful Transition

• STAY WELL
• Do you know the warning signs to becoming
  sick?
• Are you eating, sleeping and exercising to
  keep your health?
• key to being part of the action for all players
  (eg HEADS)

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Post-secondary Medical Issues

• Selection of school Career training with support
  services and scholarships.
• Medical supports needed at school, nearby campus,
  and plans for emergency and inpatient events.
• Insurance Coverage (is it adequate and is it one
  plan or a patch of plans)
• Modifications Work Load, Medical Care, and
  Proactive Wellness (see table 5 for
  accommodations)
• Visit the DSS at the start of school

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What is a successful transition?

• Youth are able to
• Access health services independently
• Discuss their health condition
• Communicate their health care needs
• Self-manage their care or support is available

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What is a successful transition?

• Youth are able to (cont.)
• Feel comfortable seeing the doctor alone
• Make health care decisions or support is in place
• Understand when their pediatric practice expects
  transition to and what to expect from the adult
  health care provider
• Young adults
• Have insurance
• Have health care that is developmentally
  appropriate primary, specialty, therapies, AT

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What to Do Now for Providers

• Hang up youth and/or disability-cool posters in
  the waiting room
• Place a sign about moving to an adult provider
  with practice policy clearly stated
• Ask a parent to leave the examination room so
  youth can talk directly to their health care
  provider
• Create a transition plan (tools templates
  available)

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What to Do Now for Providers

• Think about making YSHCN appointments after
  school
• Call a family physician/general internist to
  consult about your transitioning youth and
  providing appropriate adolescent primary care,
  then call adult subspecialist
• Apply strategies to improve adherence
• Consider using 9 easy steps/questions

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What to Do Now for Children and Youth

• Become responsible for a new household chore
• Make a list of questions/concerns you have about
  your health that you can give to your
  pediatrician
• Call your doctor to make your own appointment
• Call in your refill prescriptions
• Draft your portable medical summary

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• Bottom line with or without us- youth and
  families get older and will move onWhat can make
  it easier do whats in your control and support
  youth to tackle whats their control.

1. Start early
2. Ask and reinforce life span skills prepare for
   the marathon
3. Assist youth to learn how to extend wellness
4. Reality check Have all of us done the prep work
   for the send off before the hand off?

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www.hrtw.org
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The Ultimate OutcomeTransition to Adulthood
Kathy Blomquist, RN, PhD kathyblomquist_at_hrtw.
org Patience H. White, MD, MA,
FAAP pwhite_at_arthritis.org