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Health Care Transition
Preparing for the Difference: Transitioning Youth
with Special Health Care Needs from Pediatrics to Adult Health Care
Patience H. White, MD, MA, FAAPPatti Hackett, MEd
American Academy of Pediatrics 2007 National Conference & Exhibition
October 2007
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Disclosure
• Neither Dr. White or Ms. Hackett nor any members of our immediate family has a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity.
• Our content will not include discussion/reference of any commercial products or services.
• We do not intend to discuss an unapproved/ investigative use of commercial products/devices.
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Title V Leadership
Toni Wall, MPA
Kathy Blomquist, RN, PhD
Theresa Glore, MS
Federal Policy
Patti Hackett, MEd
Tom Gloss
Interagency Partnerships
Debbie Gilmer, MEd
Medical Home & Transition
Richard Antonelli, MD, MS, FAAP
Patience H. White, MD, MA, FAAP
Betty Presler, ARNP, PhD
Family, Youth & Cultural Competence
Mallory Cyr
Ceci Shapland, MSN
Trish Thomas
HRSA/MCHB Project Officer
Elizabeth McGuire
HRTW TEAM
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What age would people say
would be the best years
of their lives
beginning at age 10
in 5 year blocks?
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Don’t Want to Grow Up: age adults say they want to remain
(USA Today Poll 2000)
Age (yrs) Men (%) Women (%)
5-10 8 8
11-14 4 6
15-20 34 20
21-25 29 2826-30 8 10
31-35 7 10
36-40 3 7
41 and up 7 9
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Health Impacts All Aspects of Life
Success in the classroom, within the community, and on the job requires that young people are healthy.
To stay healthy, young people need an understanding of their health and to participate in their health care decisions.
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Objectives
• List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare
• Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Define appropriate use of transition tools from the HRTW website and other national resources.
www.hrtw.org
Think about
• Who is caring for youth with CTD between ages 15-25?
• What do you think YOUTH want to know about their health care/status?
• At what age should children/youth start asking their own questions to their Doctor?
• At what age does your practice encourage assent signatures?
Not everything that can be counted counts,
and not everything that counts can be counted.Albert Einstein
What does
the Data
tell us?
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Youth With Disabilities Stated Needs for Success in Adulthood
PRIORITIES:
1 Career development (develop skills for a job and how to find
out about jobs they would enjoy)
2 Independent living skills
3 Finding quality medical care (paying for it; USA)
4 Legal rights
5 Protect themselves from crime (USA)
6 Obtain financing for school (USA)SOURCE: Point of Departure, a PACER Center publication Fall, 1996
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Survey - 1300 YOUTH with SHCN / disabilities
Main concerns for health:
• What to do in an emergency,
• Learning to stay healthy*
• How to get health insurance*,
• What could happen if condition
gets worse.
SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995
*SOURCE: National Youth Leadership Network Survey-2001300 youth leaders disabilities
Youth are Talking: Are we listening?
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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 for youth with disabilities: 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/out over protectiveness
Source: Weiner, 1992
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FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: 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/out over protectiveness
Source: Weiner, 1992
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Outcome Realities
• Nearly 40% cannot identify a primary care physician
• 20% consider their pediatric specialist to be their ‘regular’ physician
• Primary health concerns that are not being met
• Fewer work opportunities, lower high school grad rates and high drop out from college
• YSHCN are 3 X more likely to live on income < $15,000
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
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Internal Medicine Nephrologists (n=35)Survey Components Percentages
Percent of transitioned patients < 2% in 95% of practices
Transitioned pats. came with an introduction 75%75%Transitioned patients know their meds 45%45%Transitioned patients know their disease 30%30%
Transitioned patients ask questions 20%20%Parents of transitioned patients ask questions
69%69%
Transitioned Adults believed they had a difficult transition
40%40%
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
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A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs
American Academy of Pediatrics American Academy of Family Physicians American College of Physicians -
American Society of Internal Medicine
Pediatrics 2002:110 (suppl) 1304-1306
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1. Identify primary care provider
Peds to adult Specialty providers Other providers
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
2. Identify core knowledge and skills
Encounter checklists
Outcome lists
Teaching tools
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
3. Maintain an up-to-date medical summary that is portable and accessible
Knowledge of condition, prioritize health issues
Communication / learning / culture Medications and equipment Provider contact information Emergency planning Insurance information, health surrogate
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Steps
to Ensuring Successful Transitioning To Adult-Oriented Health Care
www.hrtw.org
4. Create a written health care transition plan by age 14: what services, who provides, how financed
Expecting, anticipating and planning
Experiences and exposures
Skills: practice, practice, practice Collaboration with schools and
community resources
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Steps
to Ensuring Successful Transitioning To Adult-Oriented Health Care
www.hrtw.org
5. Apply preventive screening guidelines Stay healthy Prevent secondary disabilities Catch problems early
6. Ensure affordable, continuous health insurance coverage Payment for services Learn responsible use of resources
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
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IOM QUALITY MEASURES
The Health care system should be:
• Safe
• Effective
• Patient centered
• Timely
• Efficient
• Equitable SOURCE: 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 and free flow of information
• Safety
• Transparency
• Anticipation of needs
SOURCE: Crossing the Quality Chasm 2001
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How Do We Achieve
That Type of System?
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Elements of Medical Home
Care that is:• Accessible• Family-centered• Comprehensive• Continuous• Coordinated• Compassionate• Culturally-effective
and for which the primary care provider shares
responsibility with the family.
National Center of Medical Home Initiatives
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What is Medical Home Really? -01
A Medical Home is a community-based,
primary care setting that integrates high
quality, evidence-based standards in
providing and coordinating family-centered
health promotion as well as acute and
chronic condition management.
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What is Medical Home Really? -02
A subspecialist can provide a Medical
Home as long as all elements of the care
needs of the patient are addressed.
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Objectives
• List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare
• Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Define appropriate use of transition tools from the HRTW website and other national resources.
www.hrtw.org
Think About
• What is transition for youth with SHCN?
• When did you transition to adult care? How about your children?
• What skills do youth need before transitioning ?
• How do you support families in their transitioning roles?
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What is Transition?
Components of successful transition
• Self-Determination• Person Centered Planning• Prep for Adult health care• Work /Independence
• Inclusion in community life • Start Early
Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.
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The Transition ProcessThe Transition Process
Referral & Transfer of Care
Pediatric Care Adult Care
Transition
SOURCE: Rosen DS. Grand Rounds: All Grown up and Nowhere to Go: Transition From Pediatric to Adult Health Care for Adolescents With Chronic
Conditions. Presented at: Children’s Hospital of Philadelphia; Philadelphia, PA, 2003
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Health & Wellness: Being Informed
“The physician’s prime responsibility is the
medical management of the young
person’s 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; 12:363-374
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Time
Jan 2004
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Societal Context for Youth without Diagnoses in Transition
• Parents are more involved - dependency “Helicopter Parents”
• Twixters = 18-29 - live with their parents / not independent - cultural shift in Western households - when members of the nuclear family become adults, 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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Shared Decision Making Sking
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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Prepare for the Realities of Health Care Services
Difference in System Practices
Pediatric Services: Family Driven
Adult Services: Consumer Driven
The youth and family finds themselves between two medical worlds
…….that often do not communicate….
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Pediatric Adult
Age-related Growth& development, future focussed
Maintenance/decline:Optimize the present
Focus Family Individual
Approach PaternalisticProactive
Collaborative,Reactive
Shared decision-making
With parent With patient
Services Entitlement Qualify/eligibility
Non-adherence >Assistance > 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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Think About
• Are you familiar with the ACP?AAP/AAFP/Consensus Statement?
• How do you teach children and youth about their wellness baseline?
• What 3 essential skills you can teach in the office encounter?
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A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs
American Academy of Pediatrics American Academy of Family Physicians American College of Physicians -
American Society of Internal Medicine
Pediatrics 2002:110 (suppl) 1304-1306
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Survey of Pediatric Practices on Transition Policies for YSHCN
A pilot survey based on the policy recommendations of the concensus statement transition statement was completed in 2005 by 100% of 21 practices (146 physicians and 36 nurse practitioners) in Central Pennsylvania.The practices had volunteered to participate in developing acomprehensive family centered model of care.
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Results of Pediatric Practice Survey• 38% had a stated policy in their practice for
when a YSHCN should transfer to an adult physician
0% had policy posted for families to see • 66% had identified adult practices for referral.
• 19% had a policy to discuss legal issues for adulthood before age 18.
• 33% had identified a transition coordinator in the office
• 29% had care plans for YSHCN supporting transition process
Source: White PAS 2006
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Results of Pediatric Practice Survey
• 4% (one practice) used an individualized medical transition plan
• 29% had a plan - transportable medical record
• 62% rated their practice as not having a transition process but were interested in developing one
• 52% wanted assistance in developing forms/procedures
• 71% wanted assistance in coding for transition.Source: White, PAS 2006
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1. Identify primary care provider
Peds to adult Specialty providers Other providers
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
2. Identify core knowledge and skills
Encounter checklists
Outcome lists
Teaching tools
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
Core Knowledge & Skills: POLICY
1. Identified staff person coordinates transition activities
2. Office forms are developed to support transition processes
3. CPT coding is used to maximize reimbursement for transition services
4. Legal health care decision making is discussed prior to youth turning 18
5. Prior to age 18, youth sign assent forms for treatments, whenever possible
6. Written transition policy states expected age youth should no longer see a pediatric HCP and /or when youth expected to see HCP alone
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Core Knowledge & Skills: MEDICAL HOME
1. Practice provides care coordination for youth with complex conditions
2. Practice creates an individualized health transition plan before age 14
3. Practice refers youth to specific primary care physicians
4. Practice provides support and confers with adult providers post transfer
5. Practice actively recruits adult primary care /specialty providers for referral
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Core Knowledge & Skills: FAMILY & YOUTH
1. Practice discusses transition after diagnosis, and planning with families/youth begins before age 10 (ped practice) or when youth are transferred to the practice (adult practice)
2. Practice provides educational packet or handouts on expectations and information about transition
3. Youth participate in shared care management and self care (call for appt/ Rx refills)
4. Practice assists families/youth to develop an emergency plan (health crisis and weather or other environmental disasters)
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Do you have “ICE” in your cell phone contact list?
• Create new contact
• Space or Underscore ____ (this bumps listing to the top)
• Type “ICE – 01” – Add Name of Person - include all ph #s - Note your allergies
You can have up to 3 ICE contacts (per EMS)
To Program……….
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Core Knowledge & Skills: FAMILY & YOUTH
6. Practice assists with planning for school and/or work accommodations
7. Practice assists with medical documentation for program eligibility (SSI, VR, College)
8. Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences
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AERC Research:
Youth are less interested in any transition organized
around medical issues and
more interested in a transition to financial and
social independence.
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AERC Context: Data on Adolescent Work in the USA
Employers rank prior work experience, attitude and communication skills most important in hiring decisions (NYT, 1998)
Work patterns of teenagers during the school year: - 40% 7th and 8th graders (JAMA 1998)
- 80% high school students (IOM 1998)
Educational level attained relates to survival, future income level and probability of labor force participation
(Yeltin 1996)
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AERC Context: Data on Adolescent Work in the USA
Teens take health risks less if work under 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)
- debate 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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AERC RESULTS
After 1 Yr in the AERC, active* 13 yr olds:
- More engaged (three times as many 13 year olds 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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AERC RESULTS
After 3 years in AERC, receiving AERC services participants have:
- more education - more paid work experience - more likely to leave SSI (3 are off SSI, 3 on their way)
- Improved health from youth’s point of view
- more likely to have an adult primary care physician
ROI of program: 1 youth leaving the SSI rolls pays for 1 Year of the program!
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Core Knowledge & Skills: FAMILY & YOUTH
6. Practice assists with planning for school and/or work accommodations
7. Practice assists with medical documentation for program eligibility (SSI, VR, College)
8. Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences
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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
Visit the DSS at the start of school
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3. Maintain an up-to-date medical summary that is portable and accessible
Knowledge of condition, prioritize health issues
Communication / learning / culture Medications and equipment Provider contact information Emergency planning Insurance information, health surrogate
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Steps
to Ensuring Successful Transitioning To Adult-Oriented Health Care
www.hrtw.org
Create Portable Medical Summary
- Use as a reference tool
- Accurate medical history & contact #s
- Carry in your wallet.
- Use for disability documentation
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Preparing for the 15 minute Doctor Visit
Know Your Health & Wellness Baseline
• How does your body feel on a good day?
• Prepare questions at each visit
• Give brief health status & overview of needs.
• Know emergency plan when health changes.
• What is your typical body temperature, respiration, heart rate and blood pressure.
www.hrtw.org
4. Create a written health care transition plan by age 14: what services, who provides, how financed
Expecting, anticipating and planning
Experiences and exposures
Skills: practice, practice, practice Collaboration with schools (add health skills
to IEP) and community resources
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Steps
to Ensuring Successful Transitioning To Adult-Oriented Health Care
www.hrtw.org
Collaboration with Community Partners
• Special Education Co-ops
• Higher Education
• Vocational Rehabilitation/
• Workforce Development
• Centers for Independent Living
• Housing, Transportation, Personal Assistance, and Recreation
• Mental health• Grant projects in your state
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5. Apply preventive screening guidelines
Stay healthy Prevent secondary disabilities Catch problems early
Source: Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
Core Knowledge & Skills: SCREENING
1. Exams include routine screening for risk taking and prevention of secondary disabilities
2. Practice teaches youth lifelong preventive care, how to identify health baseline and report problems early; youth know wellness routines, diet/exercise, etc.
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Health & …. Life-Span
Secondary Disabilities - Prevention/Monitor - Mental Health, High Risk Behaviors
Aging & Deterioration- Info long-term effects (wear & tear; Rx, health cx)
- New disability issues & adjustments
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Screen for All Health Needs
• 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 affordable, continuous health insurance coverage
Payment for services Learn responsible use of resources
Pediatrics 2002:110 (suppl) 1304-1306
6 Critical First Stepsto Ensuring Successful Transitioning
To Adult-Oriented Health Care
www.hrtw.org
Core Knowledge & Skills: HEALTH CARE INSURANCE
1. Practice is knowledgeable about state mandated and other insurance benefits for youth after age 18
2. Practice provides medical documentation when needed to maintain benefits
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Transition & ……Insurance
NO HEALTH INSURANCE
40% college graduates (first year after grad)
1/2 of HS grads who don’t go to college
40% age 19–29, uninsured during the year
2x rate for adults ages 30-64 SOURCE: Commonwealth Fund 2003
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Extended Coverage – Family Plan
• Adult Disabled Dependent Care
Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer, hospital or medical service corporation or health care center
• Adult, childless continued on Family Plan
Increasing age limit to 25-30
CO, CT, DE, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV
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Having a Voice: Children and Youth
Partners in Care
Age 10 on
– plan /practice calling for appt & Rx refills
- Know wellness baseline
- Assess decision-making, provide supports when needed. Assent to Consent
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Having a Voice: Children and Youth
Partners in Paying
- INSURANCE CARD: Carry & Present
- Fill in insurance forms ahead of visit
- Learn about coverage and coding
- Child/Youth give the co-pay
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9 Easy steps to Plan a Successful Transition
EXPECTATIONS: What do you want to do when you are older?• Next year? • Five years? TEACH: • What can you tell me about your medical issues? • Do they affect you from doing what you want in the day?
OPINION: • What do you think of the…? • Be open and honest.. listen and be “askable”…• Involve in decision making (assent to consent, give them a sense of competence)
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9 Easy steps to Plan a Successful Transition (2)
CHORES: Are you doing chores?
ATTENDANCE: How are you doing in school?
PLANNING: How are you doing with your transition plan?
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9 Easy steps to Plan a Successful Transition (3)
PARTICIPATION: What do you doing when you are not in school?
CAREER: What kind of work/career do you want to do?
STAY WELL: Are you taking care of your health? (HEADS)
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Bottom line: with or without us- youth and families get older and will move on…Think what can make it easier; do what’s in your control and support youth to tackle what’s their control.
1. Start early
2. Ask and reinforce life span skills prepare for the marathon (post your practice transition policies, help families to understand their changing role)
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?
www.hrtw.org
Objectives
• List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare
• Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care.
• Define appropriate use of transition tools from the HRTW website and other national resources.
www.hrtw.org
What would
you do,
if you thought
you could not fail?
www.hrtw.org
Patience H. White, MD, MA, FAAPMedical Advisor- HRTW Center
Chief Pubic Health OfficerArthritis Foundation
Washington, DC
Patti Hackett, MEdCo-Director, HRTW Center
Bangor, ME
www.hrtw.org
www.hrtw.org
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www.hdwg.org/catalyst/index.php
State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Needs
www.hrtw.org
Medicalhomeinfo.org
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www11.georgetown.edu/research/gucchd/nccc
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www.familyvoices.org
