Healthy and Ready to Work

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Transition to Adulthood Preparing for the
Difference for CYSHCN
Patti Hackett, MEd Co-Director, HRTW National
Resource Center Bangor, ME Future of Pediatrics
Orlando, FL June 30, 2007
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Disclosure

• Neither I nor any member of my 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.
• My content will not include discussion/reference
  of any commercial products or services.
• I do not intend to discuss an unapproved/investig
  ative use of commercial products/devices.

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www.hrtw.org
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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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HRTW TEAM
Federal Policy Patti Hackett, MEd Tom Gloss
Title V Leadership Toni Wall, MPA Kathy
Blomquist, RN, PhD Theresa Glore, MPH
Medical Home Transition Richard Antonelli, MD,
MS, FAAP Patience H. White, MD, MA, FAAP Betty
Presler, ARNP, PhD
 
Interagency Partnerships Debbie Gilmer, MEd
Family, Youth Cultural Competence Ceci
Shapland, RN, MSN Trish Thomas Mallory Cyr
 
HRSA/MCHB Project Officer Elizabeth McGuire
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Supporting Success It Take ALL of US!
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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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Objectives

• Discuss what is most important to young people
  with SHCN for their transition to adulthood and
  the current realities for YSHCN
• Review the medical perspective and differences
  between pediatric and adult health care systems
• Learn what a health care professional can do to
  assist youth with transition

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Discussion

• What do you think YOUTH want to know about their
  health care/status?
• At what age should children start asking their
  own questions to their Doctor?
• At what age does your practice encourage assent
  signatures?

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What does the Data tell us?
Not everything that can be counted counts, and
not everything that counts can be counted. Albert
Einstein
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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 Health Concerns

• Survey - 1300 YOUTH with SHCN / disabilities
• Main concerns for health
• what to do in an emergency,
• 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

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Youth are Talking Are We Listening?

• Experiences that were most important
• learning to stay healthy
• getting health insurance
• SOURCE National Youth Leadership Network
• Survey-2001,
• 300 youth leaders disabilities

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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 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 lt
  15,000

CHOICES Survey, 1997 NOD/Harris Poll, 2000 KY
TEACH, 2002
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Internal Medicine Nephrologists (n35)
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
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Objectives

• Discuss what is most important to young people
  with SHCN for their transition to adulthood and
  the current realities for YSHCN
• Review the medical perspective and differences
  between pediatric and adult health care systems
• Learn what a health care professional can do to
  assist youth with transition

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Discussion

• When did you transition to adult care? How about
  your children?
• Briefly share your experience transitioning a
  patient to adult care?
• What skills do youth need before transitioning ?
• How do you support families in their
  transitioning roles?

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The Ultimate Outcome Transition to Adulthood

Health Care Transition Requires Time Skills
for children, youth, families and their
Doctors too!
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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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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.
• Ansell BM Chamberlain MA. Clinical Rheum.
  1998 12363-374

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Shared Decision Making
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Levels of Support
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Informed Decision Makers

• FERPA Family Education Rights Privacy Act
• HIPAA Health Insurance Portability and
• Accountability Act
• 1. Privacy ? Records
• 2. Consent ? Signature (signature stamp)
• - Assent to Consent
• - Varying levels of support
• - Stand-by (health
  surrogate)
• - Guardianship (limited to
  full)

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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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Transition to Adulthood
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Objectives

• Discuss what is most important to young people
  with SHCN for their transition to adulthood and
  the current realities for YSHCN
• Review the medical perspective and differences
  between pediatric and adult health care systems
• Learn what a health care professional can do to
  assist youth with transition

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Discussion

• Are you familiar with the Consensus Statement?
  The new Joint Principles?
• 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 2002110 (suppl) 1304-1306

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6 Critical First Stepsto Ensuring Successful
Transitioning To Adult-Oriented Health Care

• Identify primary care provider
• Peds to adult
• Specialty providers
• Other providers
• 
  Pediatrics 2002110 (suppl) 1304-1306

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6 Critical First Stepsto Ensuring Successful
Transitioning To Adult-Oriented Health Care

• 2. Identify core knowledge and skills
• Encounter checklists
• Outcome lists
• Teaching tools
• 
  

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Core Knowledge Skills POLICY

• Dedicated staff position coordinates transition
  activities
• Office forms are developed to support transition
  processes
• CPT coding is used to maximize reimbursement for
  transition services
• Legal health care decision making is discussed
  prior to youth turning 18
• Prior to age 18, youth sign assent forms for
  treatments, whenever possible
• Written transition policy states age youth should
  no longer see a pediatrician

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Core Knowledge Skills MEDICAL HOME

• 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 family or
  internal medicine 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
• 2. Practice provides educational packet or
  handouts on 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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Core Knowledge Skills FAMILY YOUTH

• 5. Practice assists youth/family in creating a
  portable medical summary
• 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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Core Knowledge Skills HEALTH CARE INSURANCE

• 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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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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6 Critical First Stepsto Ensuring Successful
Transitioning To Adult-Oriented Health Care

• 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 2002110 (suppl) 1304-1306

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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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• Preparing for the 15 minute Doctor Visit
• Know Your Health Wellness Baseline
• How does your body feel on a good day?
• What is your typical body temperature,
• respiration count, plus and elimination
• habits?

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• Survive Thrive!
• Encourage questions at each visit.
• TOOL 5 Q
• - Assent co-sign treatment plans.
• - Youth calls for appointments and Rx refills
• Concise Medical Reporting
• Give brief health status and overview of needs.
• Know the emergency plan when health changes.

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6 Critical First Stepsto 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
• Expecting, anticipating and planning
• Experiences and exposures
• Skills practice, practice, practice
• Collaboration with schools and community
  resources
• Pediatrics 2002110 (suppl) 1304-1306

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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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6 Critical First Stepsto Ensuring Successful
Transitioning To Adult-Oriented Health Care

• 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 2002110 (suppl) 1304-1306

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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

• Hygiene
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine (Immunizations, Blood-work, Vision, etc.)
• Secondary Conditions/Disabilities
• Accelerated Aging issues

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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 Fund 2003

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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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• Celebrate the Paperwork!
• It Means You are Alive!
• 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
• Age 10 call for appt Rx refills

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• Having a Voice Children Youth
• Start early carry insurance card
• Present insurance card
• Prepare for Doc visit 5 Qs
• Know wellness baseline
• Practice calling for Rx, appts
• Assess decision making, provide
• supports when needed.
• (ASSENT TO CONSENT)

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• Families Prepare for Changing Roles
• Temporary spokesperson on behalf of
• minor child (until age 18, or declared by the
  court)
• Plant the suggestion Who is your
• patient, future appt alone with the
• patient AND offer ideas what do while
• family waits in the waiting room.
• 2 voices to be heard families and CY
• ASSENT TO CONSENT
• New time/roles without guilt

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• Providers Prepare for Changing Roles
• Establish and post transition policy
• (gets everyone thinking ahead and not
• feeling ambushed)
• Plant the suggestion Who is your
• patient, future appt alone with the
• patient AND offer ideas what do while
• family waits in the waiting room.
• Chronic health issues CY need to be
• competent in their information and
• decision making. Ask before offering the
• answer.

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Transition Sexuality
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• The Concerns -- Teachers
• What is my role? (legal too!)
• Balance need to know
• Balance cultural / religious beliefs
• Open dialogue - respect and privacy
• What to share or not with parents?
• Where are the experts? Role models?

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• Who Starts the Discussion?
• Medical (Doc, Nurse, OT/PT)
• Family (how early?)
• Teachers
• Community resources

Everyday messages TV, videos, Friends, Internet
family, community
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Family Roles

• What pediatricians teachers dont know
  - dont want to know
• Discussion with primary care - referral
• Medical Home www.medicalhomeinfo.com
• (Sexuality as part of REAL comprehensive care
  plan)
• Including in the IEPs, OT/PT plans

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Integrated Sexual Healthcare

• Importance of sexuality in healthcare
• Psychologists responsibility
• Rehab team sharing responsibility
• Patients ranking of sexuality as important

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Treatment Planning

• Identifying problem
• Sample definition of problem
• Integration into social community
• Expansion of strategies for sexual expression
• - Erectile dysfunction
• - Female arousal disorder
• - Sexual dysfunction

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Treatment

• Rehab Psychologist inquires about sexuality
• Patient defines problem
• Rehab Psychologist defines treatment problem to
  team
• Team members decide who will be involved (OT, PT,
  Social Work, Recreation therapy)

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Family Roles

• Changing role
• Parent ? Personal Support
• Honesty Dignity (before puberty)
• Pre-plan (smoothing out awkward moments)
• When personal values differ
• Terminal does not mean asexual

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Youth Family Roles

• Masturbation Time!
• Supplies
  ?Youth (directs)
  ?Parent (gathers)
• Role Switch parent ? personal support
• Clean-up (no talking)
• Role Switch personal support ? parent

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Youth Family Roles

• Assess - The Plan, Supplies Support
• Revise supports - disease progression
• Libido change Rx Traditional - Alternative

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Resources

• www.MyPleasure.com
• www.Sexualhealth.com
• The Ultimate Guide to Sex and Disability
  (Kaufman, Silverberg, Odette, 2003)
• Quality Mall Person Centered services
  supporting people with developmental disabilities
• http//www.qualitymall.org/directory/dept1.asp?dep
  tid16

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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
• 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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• What would you do,
• if you thought you could not fail?

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