Healthy and Ready to Work

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The Ultimate Outcome Transition to Adulthood
Children Youth with Special Needs
Patience H. White, MD, MA, FAAP HRTW Medical
Advisor Chief Public Health Officer, Arthritis
Foundation Washington, DC Patti Hackett,
MEd Co-Director Healthy Ready to Work National
Center Bangor, ME Transitions Conference
4 Toronto, Canada May 22, 2008
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www.hrtw.org
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Objectives

• 1. Review recently released data from the
  National Survey of Children with Special Health
  Care Needs (2005) and the Healthy Ready to Work
  National Center's transition questionnaire of
  pediatric practices and children hospitals (2006)
• 2.Describe sample tools and essential skill
  areas required to make the transition to
  adulthood a smoother process.

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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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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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Outcome Realities

• 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

CHOICES Survey, 1997 NOD/Harris Poll, 2000 KY
TEACH, 2002
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What is 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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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

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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

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Time Jan 2004
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Societal Context for Youth without Medical
Conditions 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)

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What does the Data tell us? Natl CSHCN
2005-06 HRTW 2004-06 NC Neph 2005 Youth MN
1997 Youth NYLN 2003
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RI Data
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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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What does the Data tell us? Natl CSHCN
2005-06 HRTW 2004-06 NC Neph 2005 Youth MN
1997 Youth NYLN 2003
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HRTW Surveys Results 2007

• About Those Who Responded
• 52 physicians / 26 states
• Most involved with Medical Home projects
• 47 pediatricians, 4 Med-Peds, 1 Family
• Consensus Statement- Knowledge
• 50 were familiar
• 6 unsure
• 42 not

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52 Medical Home MD Response Identify Primary
Care

• 46 Have Policy to Transition Youth
• if yes, what age? 18-22
• 1 posted the policy for families/youth to
  see
• 63 Have practice to whom they refer
• if yes, why that practice? 70 personal
• relationship
• 56 recruit providers
• adult primary /specialty
• (31 want help)
• 64 support adult providers
• assuming care for YSCHN
• (29 want help)

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Results Core Knowledge Skills

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

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Results Core Knowledge Skills

• 58 help youth/families
• plan for emergencies
• (31 want help)
• 68 assist with accommodations
• school/studying or work
• (21 want help)
• 35 Make transportable medical
• record for some patients
• (43 want help)

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Results Core Knowledge Skills

• 63 promote independence in
• health condition management
• (25 want help)
• When youth tern 18-writen policy to
• discuss? 77 no
• Do you seek verbal assent? 81 Written
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• 50 refer to skill-building experiences
• (35 want help)

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Results

• 33 Create individualized
• health transition plan
• for at least some patients
• (39 want help)
• 65 Screen to identify YSHCN
• who need transition services
• (29 want help)

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Results Overall practice assessment

• Rate your practice with regards to transition
  processes in general
• not interested 2
• not have, interested 29
• beginning stages 25
• working on policy/processes 19
• have policy and processes integrated 13

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Conclusions

• Respondents are reluctant to transition their
  youth with SHCN to adult practices
• Respondents are well versed in coordinated care
  but are reluctant to adopt processes to give
  youth with SHCN the tools/skills to negotiate
  adult health care practices

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What does the Data tell us? Natl CSHCN
2005-06 HRTW 2004-06 NC Neph 2005 Youth MN
1997 Youth NYLN 2003
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Internal Medicine Nephrologists (N35)
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
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What does the Data tell us? Natl CSHCN
2005-06 HRTW 2004-06 NC Neph 2005 Youth MN
1997 Youth NYLN 2003
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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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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

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Objectives

• 1. Review recently released data from the
  National Survey of Children with Special Health
  Care Needs (2005) and the Healthy Ready to Work
  National Center's transition questionnaire of
  pediatric practices and children hospitals (2006)
• 2.Describe sample tools and essential skill
  areas required to make the transition to
  adulthood a smoother process.

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A Consensus Statement on Health Care Transitions
for Young Adults With Special Health Care
NeedsAmerican 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

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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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Core Knowledge Skills MEDICAL HOME

• Practice creates an individualized health
  transition plan before age 14
• 2. Organizes a structured observation visit to
  adult office before transfer
• 3. Practice refers youth to specific primary care
  physicians
• 4. Practice actively recruits adult primary care
  /specialty providers for referral
• 5. Practice provides support and confers with
  adult providers pre/post transfer
• 6. Practice provides care coordination for youth
  with CTD

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How to prepare for the difference in roles
Shared Decision Making
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Levels of Support Shared Decision Making
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• 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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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)

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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 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?

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• 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.

• Start early
• Ask and reinforce life span skills prepare for
  the marathon (post your practice transition
  policies, help families to understand their
  changing role)
• Assist youth to learn how to extend wellness
• Reality check Have all of us done the prep work
  for the send off before the hand off?

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Whats on their minds?
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The Ultimate Outcome Transition to Adulthood
Patience H. White, MD, MA, FAAP pwhite_at_arthritis
.org Patti Hackett, MEd pattihackett_at_hrtw.org
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• Evaluation Questions   
• What in this session interested you? 
• What in this session surprised you? 
• What did you not find interesting or surprising? 
• Did anything in this session bother you? 
• What will you use in your future work that you
  learned today?