Richard Antonelli, MD, MS, FAAP

1
Barriers to, and Resources for Successful
Transitioning for Youth with Special Needs from
Pediatric to Adult Systems of Care
Richard Antonelli, MD, MS, FAAP Medical Home
and Transition Consultant Healthy Ready to Work
National Resource Center Associate Professor of
Pediatrics University of Connecticut School of
Medicine November, 2006
2
Special Thanks to

• Patti Hackett, MEd
• Co-Director, HRTW National Resource Center
• Patience H. White, MD
• Medical Home and Transition Consultant-HRTW
• Leolinda Parlin and Puna
• My patients and their families!

3

The Ultimate Outcome Transition to Adulthood
Health Care Transition Requires Time Skills
for children, youth, families and their
Doctors too!

4
Learning Objectives

• Learn what YSHCN feel will help them be
  successful in their transition to adulthood
• Learn about methods and resources that health
  care providers can utilize to foster successful
  transition to adult systems for a YSHCN

5
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

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How Many CYSHCN?

• 13-40 of Pediatric Population in US
• Nationwide 9.4 million (13) lt18
• 
  
• Title V CYSHCN 963,634 0-18
• SSI Recipients 1,036,990 0-17
• 386,360
  13-17
• Sources
• www.cshcndata.org
• Title V Block Grant FY 2006, www.mchb.hrsa.gov
• Most State Title V CSHCN Programs end at
  age 18
• SSA, Children Receiving SSI, December 2005,
  www.ssa.gov

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Outcome Realities - 01

• 90 of YSHCN reach their 21st birthday
• Nearly 40 cannot identify a primary care
  physician
• 20 consider their pediatric specialist to be
  their regular physician
• Significant numbers have extensive primary health
  concerns that are not being met
• Fewer work opportunities, lower high school grad
  rates and high drop out from college

CHOICES Survey, 1997 NOD/Harris Poll, 2000 KY
TEACH, 2002
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Outcome Realities - 02

• YSHCN are 3 times more likely to live on income
  under 15,000
• The National Survey of CSHCN, 2001 revealed that
  only 6.3 of YSHCN ages 13-17 perceived they had
  received preparation for transition to adulthood.
• 35 of 18 24 year-olds lack a payment source
  for health care

CHOICES Survey, 1997 NOD/Harris Poll, 2000 KY
TEACH, 2002
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Percent Uninsured by Age People under age 65,
first half of 2002Center for Cost and Financing
Studies, AHRQ, Medical Expenditure Panel survey,
2002 Point-in-time File
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Transition Insurance

• NO HEALTH INSURANCE
• 40 college graduates (first year after grad)
• 1/2 of HS grads who dont go to college
• 40 age 1929, uninsured during the year
• 2x rate for adults ages 30-64
• SOURCE Commonwealth Fu
• SOURCE Commonwealth Fund 20052003

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Health Wellness for CYSHCN 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.
• SOURCE Ansell BM Chamberlain MA. Clinical
  Rheum. 1998 12363-374

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What Resources are Available to Assist with
Transition Skill Building?
13
Consensus Statement Health Care Transition

• Calls on physicians to
• 1. Understand the rationale for
• transition from child-oriented
• health care
• 2. Have the knowledge and skills to
• facilitate that process
• 3. Know if, how, and when transfer of
• care is indicated
• SOURCE ACP/ ASIM/ AAFP/ AAP
• (Pediatrics 2002110 (suppl) 1304-1306)

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Consensus Statement Health Care Transition

• 4. Maintain an up-to-date portable medical
  summary
• 5. Create a written health care transition plan
  by age 14 what services, who provides, how
  financed
• American Academy of Pediatrics
• American Academy of Family Physicians
• American College of Physicians-American Society
  of Internal Medicine

15

• 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

• Self-perception as not handicapped
• Involvement with household chores
• Having a network of friends
• Having non-disabled disabled friends
• Family and peer support
• Parental support without over protectiveness

SOURCE Weiner, 1992
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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
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Health Wellness Youth Viewpoint

• Preoccupation with
• body physical changes
• Strong need to "belong"
• Primacy of the peer group
• Experimentation and risk-taking
• More like those without a diagnosis
• than different

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Adolescent Patients Report

• Treated like a child
• Loss of control, lack of confidentiality
• Not seen as a unique individual,
• separate from their condition
• Health care providers defer to parents (even when
  youth has reached age of majority)

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Health Wellness Transitions

• Adult body
• Mature (abstract) cognitive style
• Separate from family/leave family home
• Sustained peer relationships
• Intimate relationships
• Increasing autonomy.Interdependence
• Define a productive adult role

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Medical Context

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

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Non-Medical Frameworks

• Economic disparity
• Educational barriers
• Vocational barriers
• Social barriers
• Possible barriers cultural, ethnic, and racial
• Disparity of access and quality

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What is the System Level Problem?

• Its the Culture and Design of the System!!

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(No Transcript)
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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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Medical Home

• Care that is
• Accessible
• Family-centered
• Comprehensive
• Continuous
• Coordinated
• Compassionate
• Culturally-effective

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Definition of Medical Home

• And for which the primary care provider shares
  responsibility.
• AAP/ AAFP/ NAPNAP/ ACP

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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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And Family/ Youth Partnership as Quality
Advisors NOT just as passive consumers!
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Shared Decision MakingAdapted by P. White, from
G. Kieckhefer, 2005

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What are the gaps and the opportunities?

• I am an optimist, after all
• A pessimist is an optimist with experience.
  Mark Twain

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Preventive Screening

• 86 Preventive screening CYSHCN
• 32 AAP forms
• 21 GAPS
• 18 Bright Futures
• 18 Guidelines to Clinical Preventive Services
• 07 State health department forms
• Others created or adapted forms
• 65 Screen to identify YSHCN who
• need transition services
• (29 want help)

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Ensure Continuous Health Insurance

• 43 assist with planning for
• continuous health insurance
• during transition
• (32 want help)
• 71 assist with SSI medical
• documentation/re-determination
• (25 want help)

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Ensure Continuous Health Insurance

• 93 want information on coding
• for reimbursement for
• transition services

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Self-Rating of Transition Processes

• 04 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

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Barriers to Transition Extremely
Important/Important

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

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Barriers to Transition Extremely
Important/Important

• 60 of respondents said (cont.)
• Lack of capacity of adult providers
• for care of YSHCN - 72
• Inability to access adult specialty care - 64
• Limited coverage for services by public/private
  insurance - 61

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Models for Transition of Health Care -01

• Co-Management between primary care and
  subspecialists (both pediatric adult neph)
• - shared letters
• - shared visits

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Models for Transition of Health Care -02

• CME opportunities
• Encourage patient get acquainted visits with
  adult providers
• Facilitation by physicians, nursing or office
  staff, care coordinators, and youth themselves

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Models for Transition of Health Care -03

• Longitudinal co-management until
• patient, provider team, (and family support)
  feel successful transition of trust has been
  achieved
• It is acceptable for subspecialists to work
  collaboratively over several years

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Models for Transition of Health Care -04

• Keep strong communication link between primary
  care and subspecialists during transition
• Create Youth Advisory Council (YAC) to support
  development of transition function in your
  setting. These can be diagnosis-specific or
  non-categorical.

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Transition to Adulthood
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Conclusions - 01

• In order to support the needs of YSHCN
• transitioning into adult system of care
• Pediatric providers should aim to be proactive in
  preparing YSHCN for the relative independence
  required in the adult medical system and in
  reaching out to primary and subspecialty care
  colleagues.
• YSHCN would appreciate pediatric and adult
  subspecialists developing
  co-management approach to enhance quality of care
  and satisfaction

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Conclusions - 02

• Increased patient satisfaction will result when
  health care system treats holistically AND -
  includes the YSHCN as a decision-maker
• Adult providers-- remember your own adolescence--
  recall that the developmental status of YSHCN and
  the acquisition of skills supporting transition
  occurs at different rates

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Conclusions - 03

• Tools and resources are available for provider
  education in transition
• Transition into the adult health care system must
  be supported in a planned, interactive,
  interdependent way

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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? (cont.)

• Youth are able to
• Feel comfortable seeing
• the doctor alone
• Make health care decisions
• or support is in place
• Young adults
• Have insurance
• Have health care that is developmentally
  appropriate primary, specialty, therapies, AT

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Whats Health Got to Do with Transition?
EVERYTHING!

• Quality of Life Living
• Relationships
• School / Employment
• Housing
• Community Living
• Recreation

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www.hrtw.org
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The Ultimate Outcome Transition to Adulthood
Richard C. Antonelli, MD, MS, FAAP Medical
Home Transition HRTW Medical Advisor Chief,
Division of Primary Care Dept of General
Pediatrics Connecticut Children's Medical Center
Co-Head, Academic Division of General
Pediatrics Univ of Conn, School of Medicine
richantonelli_at_hrtw.org
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Resources-01

• HRSA/MCHB funded National Centers (6)
• HEALTH TRANSITION www.hrtw.org
• Healthy Ready to Work National Resource
  Center
• 2. MEDICAL HOME www.medicalhomeinfo.org
• National Center on Medical Home Initiatives
• 3. FAMILY PARTNERSHIP www.familyvoices.org
• National Center on Family and Professional
  Partnerships

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Resources-02

• HRSA/MCHB funded National Centers (6)
• 4. CULTURAL COMPETENCEhttp//www11.georgetown.ed
  u/research/gucchd/nccc/
• National Center for Cultural Competence
• 5. HEALTH INSURANCE http//www.hdwg.org/cc/
• Catalyst Center for Improving Financing of
  Care for CYSHCN
• 6. DATA www.cshcndata.org
• Data Resource Center National Survey for
  CSHCN

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Resources - 03

• HEALTHY READY TO WORK www.hrtw.org
• HRTW Portable Medical Summary - One page summary
  of health needs that youth or others can carry.
  Information contains medical history, current
  medication, name of health surrogate, health
  insurance numbers, contact information for
  treating doctors, pharmacy, home health and other
  vendors.
• Understanding Health Insurance - Web links to
  Choosing a Plan, Paying for Care, Public
  Insurance, Private Insurance, Policy / Advocacy
  Centers and Insurance Regulations, Laws and
  Statutes.
• Decisions Making Choices - Web section contains
  information of Informed Decision Making,
  Assent-Consent, Guardianship, Living Wills and
  Advance Directives.

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Resources - 04

• HRTW Portal - Laws that Affect CYSHCN
• http//www.hrtw.org/tools/laws_leg.html
• The Term Special Health Care Needs or Disability
• Disability Rights Portals
• Education Issues
• Employment Disability
• Equal Opportunity Access (504, 508 ADA)
• Family Medical Leave Act
• HRSA/MCHB Title V Legislation
• Health Insurance Benefits
• SSI/SSDI

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Resources - 05

• ADOLESCENT HEALTH TRANSITION PROJECT
  Washington
• http//depts.washington.edu/healthtr/index.html
  
• Transition Timeline for Children and Adolescents
  with Special Health Care Needs. Transitions
  involve changes adding new expectations,
  responsibilities, or resources, and letting go of
  others. The Timeline for Children may help you
  think about the future.
• Working Together for Successful Transition
  Washington State Adolescent Transition Resource
  Notebook - Great example to replicate.
• Adolescent Autonomy Checklists

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Resources - 06

• HEALTH AND HEALTHCARE IN SCHOOLS
  http//www.healthinschools.org/ejournal/2003/priva
  cy.htm
• The Impact of FERPA and HIPAA on Privacy
  Protections for Health Information at School.
  Sampling of the questions from school nurses and
  teachers.
• NICHCY - National Dissemination Center for
  Children with Disabilities www.nichcy.org
• Materials for families and providers on IDEA,
  Related Services and education issues in
  English/Spanish
• Section 504 http//www.ed.gov/about/offices/li
  st/ocr/504faq.html