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Future Of Pediatrics Conference 2009

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Title: Future Of Pediatrics Conference 2009


1
Future Of Pediatrics Conference 2009
  • Moving on from Pediatric to Adult Health Care for
    Youth with Special Health Care Needs What a
    Health Care Professional Can do
  • Patience H. White, MD, MA, FAAP
  • Health and Ready to Work National Center,
    Washington, DC
  • March 1, 2009


2
Faculty Disclosure Information In the past 12
months, we have no relevant financial
relationships with the manufacturer(s) of any
commercial product(s) and/or provider(s) of
commercial services discussed in this CME
activity. I do not intend to discuss an
unapproved/investigative use of a commercial
product/device in this presentation.
3
Opening Questions About your Transition
  • Are you seeing an adult physician?
  • If yes, what do you remember about your
    adolescent/young adult years and health care-when
    did you leave your pediatrician and move to an
    adult health care provider?
  • Was your health care continuous or was there a
    gap?
  • Did you leave actively or passively?

4
  • Learning Objectives
  • List the key elements of the national academies
    YSHCN and HCPs perspective on 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. 
  • Discuss use of transition tools from the Healthy
    and Ready To Work (HRTW) website and other
    national resources.

5
  • DEFINITIONS

6
Who Are CYSHCN?
  • Children and youth with special health care
    needs are those who have or are at increased risk
    for a chronic physical, developmental,
    behavioral, or emotional condition and who also
    require health and related services of a type or
    amount beyond that required by children
    generally.
  • Source McPherson, M., et al. (1998).
  • A New Definition of Children
  • with Special Health Care Needs.
  • Pediatrics. 102(1)137-139.
  • http//www.pediatrics.org/search.dtl

7
How many CYSHCN need transition planning?
  • Nationwide 10,221,439 (13.9) lt18

  • Title V CYSHCN 1,839,883 ( 0-18)
  • SSI Recipients 953,295 ( 0-16)
  • Sources
  • www.cshcndata.org 2005-2006
  • Title V Block Grant FY 2007, www.mchb.hrsa.gov
  • Most State Title V CSHCN Programs end
    at age 18
  • SSA, Children Receiving SSI, December 2007,
    www.ssa.gov

8
What is Health Care Transition?
Transition is the deliberate, coordinated
provision of developmentally appropriate and
culturally competent health assessments,
counseling, and referrals.
  • Components of successful transition
  • Self-Determination
  • Person Centered Planning
  • Prep for Adult health care
  • Work /Independence
  • Inclusion in community life
  • Start Early

9
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10
What is Early?
  • Data from studies in Europe and the US suggest
    ages 11-13
  • Youth most interested in involvement with future
    career like their peer group without disabilities
  • If intervene with transition planning, able to
    keep them on developmental milestones compared to
    those starting later
  • Have least differences in standardized QoL and
    life skills measures
  • Youth gt 14 years had bigger differences than
    peers w/o disabilities and interventions show
    less improvement

11
What does the Data tell us? What do national
associations say about transition?
12
  • NS-CSHCN 2005
  • Section 6 Family Centered Care - Transition Qs

49.3 NO If YES, have they talked with you about having CHILDS NAME eventually see doctors or other health care providers who treat adults?
53.8 NO 46.2 YES Have CHILDS NAMEs doctors or other health care providers talked with you or CHILDS NAME about his/her health care needs as he/she becomes an adult?
13
  • NS-CSHCN 2005
  • Section 6 Family Centered Care - Transition Qs

78.7 NO Eligibility for health insurance often changes as children reach adulthood. Has anyone discussed with you how to obtain or keep some type of health insurance coverage as CHILDS NAME becomes an adult?
Never 11.9 Sometimes 16.3 Usually 23.0 Always 48.7   How often do CHILDS NAMEs doctors or other health care providers encourage him/her to take responsibility for his/her health care needs, such as   IF 5-11 Years learning about (his/her) health or helping with treatments and medications? IF 12 Years taking medication, understanding (his/her) health, or following medical advice?
14
IOM QUALITY MEASURES 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

15
HRSA/MCHB Block Grant NPM 6
  • Transition to Adulthood
  • Youth with special health care needs
  • will receive the services necessary to make
    transitions to
  • all aspects of adult life, including adult
    health care, work,
  • and independence. (2002)
  • SOURCE BLOCK GRANT GUIDANCE
  • New Performance Measures
    See p.43 ftp//ftp.hrsa.gov/mchb/
    blockgrant/bgguideforms.pdf

16
A Consensus Statement 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
  • Identify primary care provider
  • Identify core knowledge and skills
  • Maintain an up-to-date medical summary that is
    portable and accessible
  • Develop an individualized transition plan
  • Apply preventive screening guidelines
  • Ensure affordable, continuous health insurance
    coverage
  • Pediatrics 2002110 (suppl) 1304-1306

17
What does the Data tell us? What do youth
say they want in transition?
18
Youth With Disabilities Stated Needs for Success
in Adulthood
  • PRIORITIES
  • Career development (develop skills for a job and
    how to find out about jobs they would enjoy)
  • Independent living skills
  • Finding quality medical care (paying for it USA)

  • Legal rights
  • Protect themselves from crime (USA)
  • Obtain financing for school (USA)

SOURCE Point of Departure, a PACER Center
publication Fall, 1996
19
Youth are Talking Are we listening?
  • 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-2001
  • 300 youth leaders disabilities

20
  • What would you think
  • a group of successful
  • adults with disabilities
  • would say is the most
  • important factor
  • that assisted them
  • in being successful?

21
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

22
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

23
What does the Data tell us? How are youth
with SHCN doing in adulthood?
24
Outcome Realities Before the Recession
  • Nearly 40 of youth with SHCN cannot identify a
    primary care physician
  • 20 consider their specialist to be their
    regular physician
  • Primary health concerns are not being met
  • Fewer work opportunities, lower high school grad
    rates and increased drop out from college
  • YSHCN are 3 X more likely to live on income lt
    15,000
  • During and after the recession??????

CHOICES Survey, 1997 NOD/Harris Poll, 2000 KY
TEACH, 2002
25
What does the Data tell us? How prepared are
youth for managing their care in the adult health
care system?
26
Internal Medicine Nephrologists (N35)
Survey Components Percentages
Percent of transitioned patients lt 2 in 95 of practices
Transitioned pats. came with an introduction 75
Transitioned patients know their meds 45
Transitioned patients know their disease 30
Transitioned patients ask questions 20
Parents of transitioned patients ask questions 69
Transitioned Adults believed they had a difficult transition 40
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
2006
27
What does the Data tell us? What do Adult
providers say they want to assist them in
receiving youth w SHCN?
28
Survey of Adult Health Care Providers in NH
2008 Results
  • Who180 responses 81 Fam, 9 internist, 8 NP,
  • 2 Med-peds
  • Communication
  • 57-46 rarely/never received trans summary or
    call
  • 48 young adult experienced care gap
  • Barriers time, staffing, reimbursement issues
    inadequate support from specialists
  • Comfort Level
  • More- asthma, inc BP, Mental health, DM
  • Less- CF, Chromosome/met disorders, autism,
    technology dep
  • What would Help
  • 95 written summary and support from specialists,
  • 91 want to speak w prior provider,
  • 84 written educational info about condition
  • When Transfer 78 between 18-21 years

29
What does the Data tell us? FAMILIES Natl
CSHCN Survey 2005-06 of families with CYSHCN
30
2005-6 National Health Survey
  • National telephone Survey of 40,804 families with
    youth with SHCN under the age of 18 found the
    following results
  • 48.8 of families with youth with SHCN ages 12-17
    years stated their youth received the services
    necessary to make appropriate transitions to
    adult health care, work and independence.
  • For those who answered yes, their HCP
  • 50.7 talked about having their child eventually
    see health care providers who treat adults
  • 46.2 talked with them about the health care
    needs as their child becomes an adult
  • 21.3 discussed with them how to obtain or keep
    some type of health insurance coverage as their
    child becomes an adult
  • 48.7 always encouraged their youth to learn
    about their health and medications.
  • www.cshcndata.com

31
What does the Data tell us? PED
PROVIDERS 2008 AAP Periodic Survey 71
32
A Consensus Statement 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
  • Identify primary care provider
  • Identify core knowledge and skills
  • Knowledge of condition, prioritize health issues
  • Maintain an up-to-date medical summary that is
    portable and accessible
  • Apply preventive screening guidelines
  • Ensure affordable, continuous health insurance
    coverage
  • Pediatrics 2002110 (suppl) 1304-1306

33
AAP Periodic Survey 71 2008 Results
  • 47 assisted with a referral to family or
    internal medicine
  • 45 Refer to adult specialists
  • 33 discussed consent and confidentially issues
    prior to
  • age 18
  • 32 Assist with finding a medical doctor
  • 27 Create a portable medical record summary
  • 23 offered education and consultative support to
    families
  • or adult providers
  • 19 assisted in identifying insurance options
    after age 18
  • 12 create an individualized health care
    transition plan

  • For all or most of their adolescents

34
Barriers to transition care for Pediatricians
(both major and minor barriers combined)
  • 88 lack of their knowledge of community
    resources
  • 85 fragmentation of adult health care
  • 84 lack of adolescent knowledge about their
    health
  • condition and skills to self advocate
    during health
  • care visits
  • 80 lack of adult primary care and specialty
    providers,
  • 80 difficulty breaking bond with adolescents and
  • parents
  • 79 lack of office staff skills in transition
  • 76 lack of reimbursement for transition
    activities

  • 2008 AAP Periodic Survey 71

35
What to do? Where should I start?
36
General Assumption 1
  • 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

37
General Assumption 2
  • Every youth deserves a continuous medical home as
    they grow into adulthood utilizing a transition
    plan that matches
  • the youths capacity for independent decision
    making
  • the complexity of the medical condition(s)
  • and capacity of family and a circle of support

38
FIRST STEP
  • Do you have a transition Policy for your
    practice?
  • If yes, do you post it for parents and youth to
    see?
  • Why Have a transition policy?

39
  • How do we create a systems change so that the
    rookie learns the rules of the game and we leave
    no knot untied between pediatric and adult
    healthcare?
  • Research states policies and procedures among
    stakeholders are essential
  • Ensures consensus
  • Ensures mutual understanding of
  • the processes involved
  • Provides structure for evaluation
  • and audit

40
Transition Policy Template
  • Definition-what is it? See transition definition
    of Soc Adolescent Med/BMCH
  • Outcome- when the youth has left my practice,
    he/she should know/have..
  • Timeline- age of initiation and explanation of
    exceptions
  • Components- see AAP consensus statement
  • Practice Processes
  • Evaluation- PDSA cycle

41

Time Jan 2004
42
Societal Context for Youth without Chronic
Medical Condition in Transition
  • Parents are more involved - dependency
  • Helicopter Parents Blackhawk types(CBS 2007)
  • 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)

43
Transition Template for all Youth
  • Allergies
  • Immunization history
  • Episodic events-eg. Injury history
  • Build Health Family Tree https//familyhistory.hhs
    .gov/
  • Prevention Actions
  • General nutrition, physical activity guidelines,
    routine screenings, tests according to age
  • Specific actions/screenings required due to the
    family health tree eg heart disease
  • How to handle medical emergencies, ICE
  • Medical Providers with telephone
  • Should be portable
    and electronic

44
Do you have ICE in your cell phone contact
list?
To Program.
  • 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)

45
A Consensus Statement 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
  • Identify primary care provider
  • Identify core knowledge and skills
  • Maintain an up-to-date medical summary that is
    portable and accessible
  • Develop an individualized transition plan
  • Apply preventive screening guidelines
  • Ensure affordable, continuous health insurance
    coverage
  • Pediatrics 2002110 (suppl) 1304-1306

46
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.
47
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
Services Entitlement Qualify/eligibility
Non-adherence gtAssistance gt 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
48
A Consensus Statement 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
  • Identify primary care provider
  • Identify core knowledge and skills
  • Maintain an up-to-date medical summary that is
    portable and accessible
  • Develop an individualized transition plan
  • Apply preventive screening guidelines
  • Ensure affordable, continuous health insurance
    coverage
  • Pediatrics 2002110 (suppl) 1304-1306

49
  • HRTW TOOLs LOOK AT HANDOUTS
  • Checklist for Transition
  • Core Knowledge Skills
  • for Pediatric Practices
  • Changing Roles for Youth
  • Changing Roles for Families

50
Skills Before 10 Before 18
Carry and present insurance card X
Know wellness baseline, Dx, Meds X X
Make own Doctor appts x
Call in Rx refills X
Learning Choice X
Decision making (assent to consent) X
Prepare for Doc visit 5 Qs X X
Present Co-pay X X
Assess Insurance, SSI, VR X
Gather disability documentation X
51
  • Know Your Health Wellness Baseline
  • How does your body feel on a good day?
  • What is your typical
  • - body temperature
  • - respiration count
  • - elimination habits?
  • - quality of skin (front and back)
  • Preventative Care What Tests - When

52

53
A Consensus Statement 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
  • Identify primary care provider
  • Identify core knowledge and skills
  • Maintain an up-to-date medical summary that is
    portable and accessible
  • Develop an individualized transition plan
  • Apply preventive screening guidelines
  • Ensure affordable, continuous health insurance
    coverage
  • Pediatrics 2002110 (suppl) 1304-1306

54
  • Portable Medical Summary
  • Carry in your wallet
  • Good Days
  • - Cheat Sheet Use as a reference tool
  • Accurate medical history
  • Correct contact s
  • Document disability
  • Health Crisis
  • Expedite EMS transport ER/ED care
  • Paper talks when you can not

55
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56
A Consensus Statement 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
  • Identify primary care provider
  • Identify core knowledge and skills
  • Maintain an up-to-date medical summary that is
    portable and accessible
  • Develop an individualized transition plan
  • Apply preventive screening guidelines
  • Ensure affordable, continuous health insurance
    coverage
  • Pediatrics 2002110 (suppl) 1304-1306

57
  • Health Care Transition Plan
  • build from changing roles tools
  • YOUTH INVOLVEMENT (Skills, practice time)
  • - How to involve the young person in
    introducing, creating and participating in that
    plan
  • UPDATE PERIODICALLY
  • - Partnership youth, family and provider
  • Plan is assessed periodically and changes are
    made when needed (interests, medical, etc)

58
How to prepare for the difference in roles
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
59
Levels of Support Shared Decision Making
Levels of Support Family Role Young Person
Independent Coach Can do or can direct others
Interdependent Consultant Coordinates Can do or can direct others May need support in some areas
Dependent Manages Coordinates (expand circle of support) Needs support full-time in all areas
60
A Consensus Statement 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
  • Identify primary care provider
  • Identify core knowledge and skills
  • Maintain an up-to-date medical summary that is
    portable and accessible
  • Develop an individualized transition plan
  • Apply preventive screening guidelines
  • Ensure affordable, continuous health insurance
    coverage
  • Pediatrics 2002110 (suppl) 1304-1306

61
Screening
  • SECONDARY
    DISABILITIES
  • -
    Prevention/Monitor
  • - Mental
    Health
  • - High Risk
    Behaviors
  • AGING DETERIORATION
  • - Info long-term effects (wear tear Rx,
    health cx)
  • - New disability issues adjustments

62
Screen for All Health Needs
  • Hygiene (look good, feel good, smell good)
  • Nutrition (Stamina, Bowel Management, obesity,
    etc.)
  • Exercise (fitness and stamina)
  • Sexuality Issues (masturbation, STIs, GLBT)
  • OB-GYN (Routine care, Birth Control, Rape)
  • Mental Health (genetic, situational)
  • Routine (Immunizations, Blood-work, Vision, etc.)

63
Screen for Life Areas
  • How does health affect
  • Employment
  • Leisure, Recreation
  • Community transportation, housing, activities
  • Higher Education or Training

64
A Consensus Statement 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
  • Identify primary care provider
  • Identify core knowledge and skills
  • Maintain an up-to-date medical summary that is
    portable and accessible
  • Develop an individualized transition plan
  • Apply preventive screening guidelines
  • Ensure affordable, continuous health insurance
    coverage
  • Pediatrics 2002110 (suppl) 1304-1306

65
  • TICKET TO WORK
  • http//www.socialsecurity.gov/work/aboutticket.ht
    ml
  • Employment Network (EN) of their choice to obtain
    employment services, vocational rehabilitation
    services, or other support services to help the
    beneficiary find and maintain employment
  • MEDICARE (SSDI)
  • Premium-free coverage for 4.5 years beyond the
    current limit for disability beneficiaries who
    work.
  • Medicaid (SSI)
  • Most States have the option of providing Medicaid
    coverage to more people between the ages of 16-64
    with disabilities who work.

66
  • Disability Program Navigator Functions
  • - One-Stop Career Centers
  • outreach and provide direct services to people
    with disabilities (PWD)
  • prepare for, find, or retain employment by
    collaborating with mandated and non-mandated WIA
    partners and agencies.
  • coordinator on SSA work incentivesTicket to
    Work, linkages to SSA field offices, SSA Benefits
    Planning, Assistance and Outreach (BPAO)
    counselors, and Employment Networks.
  • Assist beneficiaries in understanding the effects
    of earnings on SSA and other program benefits.

67
Extended Coverage Family Plan
1. Adult Disabled Dependent Care (40 states)
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 2. All Young Adults,
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
68
  • Celebrate the Paperwork!
  • It Means You are Alive!
  • Partners in Paying
  • INSURANCE CARD Carry Present
  • Fill in insurance forms ahead of visit
  • Child/Youth give the co-pay
  • By Age 14 call for appt Rx refills

69
Final Thoughts
70
9 Easy steps to Plan a Successful Transition
  • EXPECTATIONS
  • Engage them in their vision of their future-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
  • feeling of competence)

71
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?

72
9 Easy steps to Plan a Successful Transition (3)
  • PARTICIPATION
  • What do you do when not in school?
  • CAREER/WORK
  • What kind of work/career do you want to do?
  • STAY WELL
  • Are you taking care of your health?

73
  • Bottom line with or without us- youth and
    families get older and will move onThink what
    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 (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?

74
In the meantime.. Share solutions / samples
that are working Blend creative ideas trial
effort try and see how it works Solve the
problem that every youth deserves a continuous
medical home as they grow into adulthood
75
Thank you for your attention !
Patience White, MD, MA, FAAP pwhite_at_arthritis.org
76
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www.hrtw.org
78
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