Welcome

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Transition to Adulthood for CYSHCN Preparing
for the Difference Transition Policy, Practices
Progress
Patti Hackett, MEd Co-Director hrtw national
resource center Bangor, ME Baylor
University-School of Medicine Transition
Conference 08 November 8, 2007
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During the next 40 min. .....

• Affirm Beliefs
• Ah Ha Moments!
• Make You Squirm
• Got Data? Policy, Practices Progress
• Choose to Disagree

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Expectations Who We Are

• About YOU
• Nurses? Care Coordinators?
• Transition Coordinators? Doctors?
• Families? Youth ?
• Others?
• What Qs do you want answered today?
• Experts in the room? What topics?
• About Me
• Special Thanks Dr. Al Hergenroerder
• Ellen Seaback and the TX Planning Team

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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)

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Growing Up Ready to LIVE!
Health Wellness . Humor
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about HRTW CYSHCN vs. Disabled Time
Skills Data Twixters Preparing for the
Difference Insurance
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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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Federal National Initiatives Community Based
Systems of Care Transition

• Federal Mandates
• OBRA 89
• MCHB National Performance Measures, 1999
• New Freedom Initiative (NFI), 2001
• National Initiatives
• Surgeon Generals Conference-Koop, 1984 1989
• Healthy People 2000 2010
• Consensus Statement on Health Care Transitions
  for YSHCN, AAP/AAFP/ACP-ASIM, 2002
• Surgeon Generals Call to Action to Improve
  Health Wellness of Persons with Disabilities,
  2005

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CORE National Performance Measures

• 1. Screening
• 2. Family
• 3. Medical Home
• 4. Health Insurance
• 5. Community Services
• 6. Transition
• SOURCE BLOCK GRANT GUIDANCE
• New Performance Measures
  See p.43 ftp//ftp.hrsa.gov/mchb/
  blockgrant/bgguideforms.pdf

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MCHB National Performance Measure 6

• NPM6 To assure that CYSHCN receive the
  services necessary to transition to all aspects
  of adulthood including, adult health care,
  employment, and independence.

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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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CYSHCN vs. Disabled
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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. HRTW initiative has added YOUTH to
  CSHCN/CYSHCN
• since 1996.
• 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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Disabled?? Special Health Care Needs?

• HEALTH SERVICES
• Children Youth with Special Health Care Needs
  (CYSHCN)
• - Genetic
• - Chronic Health Issues
• - Acquired
• EDUCATION SERVICES
• - Youth with Disability
• - Youth with Health Impairment
• ADA 504
• - Disability and/or Health Impairment

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• Handicap A disadvantage for a given
  individual, resulting from an impairment or
  disability, that limits or prevents the
  fulfillment of a role that is normal, depending
  on age, sex, social and cultural factors, for
  that individual.
• Hand in Cap

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DISABILITY Historical and Social

• 4 different models of disability
• Moral Model
• Medical
• Rehabilitation
• Disability

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DISABILITY Historical and Social

• A moral model of disability which regards
  disability as the result of sin

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DISABILITY Historical and Social

• A medical model disability as a defect or
  sickness which must be cured through medical
  intervention

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DISABILITY Historical and Social

• A rehabilitation model, an offshoot of the
  medical model, .. disability a deficiency
  that must be fixed by a rehabilitation
  professional or other helping professional.

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DISABILITY Historical and Social

• The disability model
• dominating attitude by professionals and others
• Inadequate support services
• Attitudinal prejudice architectural, sensory,
  cognitive, and economic barriers
• Overlook the large variations within the
  disability community

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• Disability is
• a natural part of the human experience and in
  no way diminishes the right of individuals to
  participate in
• or contribute to society.

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The Reality Disability is a Part of Life

• YOU will be disabled - experience some form of
  disability, functional loss, either permanent or
  temporary (AB, TAB)
• HOW DISABLED Depends on environmental design
  and systems
• LESS DISABLED - Matter of leveling the field
  (barriers)

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What the Data Tells Us
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State Needs Assessments 2005 59 states and
territories

• States which
• listed transition as a priority 22
  (37)
• before 2000 only 6 (AL, AR, KY, NE, NM, SC)
• discussed health care transition 37 (63)
• reported youth involved in
• developing the Needs Assessment 9 (15)

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• NS-CSHCN 2005
• Section 6 Family Centered Care - Transition Qs

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• NS-CSHCN 2005
• Section 6 Family Centered Care - Transition Qs

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Youth are Talking Health Concerns

• Main concerns for health
• What to do in an emergency
• How to get health insurance
• Learn how to stay healthy
• What could happen if condition gets worse
• SOURCE Joint survey Minnesota Title V CSHCN
  Program and the PACER Center, 1995
• Survey - 1300 YOUTH with SHCN / disabilities
• - AND -
• National Youth Leadership Network Survey 2001,
• 300 youth leaders disabilities

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Internal Medicine Nephrologists (N35)
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
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Health Care Transition Takes Time
Skills
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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

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If Transition Preparation or Planning does
NOT occur what happens?
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Outcome Realities for YSHCN

• Nearly 40 cant identify primary care physician
• 20 - pediatric specialist /regular physician
• Primary health concerns are not being met
• Fewer work opportunities
• Lower high school grad rates
• High drop out from college
• 3 X more likely to live on income lt 15,000
• SOURCES CHOICES Survey, 2000 and NCD Lou Harris
  Poll, 2000

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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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Health Care Transition Preparing for the
Difference
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Health Wellness 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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Maintaining Health Care Insurance
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Transition Insurance
NO HEALTH INSURANCE 40 college graduates
(first year after grad) 50 HS grads who dont
go to college 40 age 1929, uninsured during
the year 2x rate for adults ages 30-64
Source Commonwealth, 2003, 2005
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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. 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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Moving to Community-Based Systems of Care Issues
for States

• Planning for cohorts of YSHCN becoming adults
• Sending System Preparing families, youth and
  professionals - envisioning adulthood
• Receiving System Different expectations,
  programs, rules and regulations
• ONE Plan for Collaboration across systems in the
  community health, education, work, housing,
  transportation, technology, play

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• Providers Prepare for Changing Roles
• Establish and post transition policy
• everyone thinking ahead/not feeling ambushed
• Plant the suggestion
• ? Who is your patient
• ? When future appt alone w/patient
• ? Offer ideas while in the waiting room
• Chronic health issues
• CY need to be competent and confident
• Seek info and support decision making
• ? Ask before offering the answer.

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Patti Hackett, MEd Co-Director, HRTW
Center Bangor, ME pattihackett_at_hrtw.org
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