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2007HRTW-FL-SESSION-C14-TRANSITION-HACKETT

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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




www.hrtw.org
                  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/
  investigative use of commercial products/devices.




   www.hrtw.org
               www.hrtw.org




www.hrtw.org
 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.



 www.hrtw.org
HRTW TEAM                      Federal Policy      
                               Patti Hackett, MEd
    Title V Leadership                                       Medical Home &
                               Tom Gloss                          Transition
    Toni Wall, MPA
    Kathy Blomquist, RN, PhD                              Richard Antonelli, MD, 
                                                                     MS, FAAP
    Theresa Glore, MPH 
                                                         Patience H. White, MD, 
                                                                     MA, FAAP
    Interagency                                            Betty Presler, ARNP, 
    Partnerships                                                            PhD 
    Debbie Gilmer, MEd 


                                                               Family, Youth
                                                      & Cultural Competence  
           HRSA/MCHB Project Officer                   Ceci Shapland, RN, MSN
           Elizabeth McGuire                                      Trish Thomas
                                                                     Mallory Cyr 
         www.hrtw.org
Supporting Success: It Take ALL of US!




 www.hrtw.org
  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)
        www.hrtw.org
                 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


  www.hrtw.org
                 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?

  www.hrtw.org
What does
the Data
tell us?



Not everything that can
be counted counts,
and not everything that
counts can be counted.
Albert Einstein
            Youth With Disabilities
    Stated Needs for Success in Adulthood

PRIORITIES:

1 Career development              (develop skills for a job and how to find
  out about jobs they would enjoy)

2 Independent living skills

3 Finding quality medical care                 (paying for it; USA)

4 Legal rights

5 Protect themselves from crime                     (USA)

6 Obtain financing for school                (USA)


             SOURCE: Point of Departure, a PACER Center publication Fall, 1996
      www.hrtw.org
 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
  www.hrtw.org
 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,

  www.hrtw.org
                       300 youth leaders disabilities
                 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 < $15,000


  www.hrtw.org           CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
   Internal Medicine Nephrologists (n=35)
          Survey Components                             Percentages

Percent of transitioned patients                 < 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                        69%
questions

Transitioned Adults believed they had a                     40%
difficult transition
                                   Maria Ferris, MD, PhD, MPH, UNC Kidney Center
            www.hrtw.org
                 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


  www.hrtw.org
                 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?
  www.hrtw.org
           The Ultimate Outcome:
           Transition to Adulthood




                Health Care Transition
                 Requires Time & Skills

               for children, youth, families
                  and their Doctors too!




www.hrtw.org
                   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
    www.hrtw.org
www.hrtw.org
Health & Wellness: Being Informed


“The physician’s prime responsibility is the
 medical management of the young person’s
 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; 12:363-374


 www.hrtw.org
                   Shared Decision Making

     Provider               Parent       Young Person

Major                  Provides care   Receives care
responsibility

Support to             manages         participates
parent and child



consultant             supervisor      manager


resource               consultant      supervisor

        www.hrtw.org
                       Levels of Support

Levels of Support        Family Role       Young Person


                                       Can do or
Independent            Coach
                                       can direct others


                                       Can do or
Interdependent Consultant
                                       can direct others
               Coordinates
                                       May need support in
                                       some areas

Dependent              Manages           Needs support
                       Coordinates       full-time in
                       (expand circle of all areas
        www.hrtw.org
          Informed Decision Makers

FERPA             Family Education Rights & Privacy Act

HIPAA             Health Insurance Portability and
                  Accountability Act

1. Privacy è Records
2. Consent è Signature (signature stamp)
             - Assent to Consent
            - Varying levels of support
            - Stand-by (health surrogate)
            - Guardianship (limited to full)



   www.hrtw.org
          Prepare for the Realities
          of Health Care Services


Difference in System Practices


Ø   Pediatric Services: Family Driven

Ø   Adult Services: Consumer Driven



    The youth and family finds themselves
              between two medical worlds
    …….that often do not communicate….
    www.hrtw.org
                            Pediatric           Adult
Age-related                 Growth&             Maintenance/decline:
                            development,        Optimize the present
                            future focussed
Focus                       Family              Individual
Approach                    Paternalistic       Collaborative,
                            Proactive           Reactive
Shared decision-making      With parent         With patient

Services                    Entitlement         Qualify/eligibility
Non-adherence               >Assistance         > tolerance
Procedural Pain             Lower threshold     Higher threshold for
                            of active input     active input
Tolerance of immaturity     Higher              Lower

Coordination with federal   Greater interface Greater interface with
systems                     with education    employment
Care provision              Interdisciplinary   Multidisciplinary
# of patients
          www.hrtw.org
                            Fewer               Greater
       Transition to Adulthood




www.hrtw.org
                 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


  www.hrtw.org
                 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?



  www.hrtw.org
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 2002:110 (suppl) 1304-1306




www.hrtw.org
          6 Critical First Steps
  to Ensuring Successful Transitioning
     To Adult-Oriented Health Care


1. Identify primary care provider

  §    Peds to adult
  §    Specialty providers
  §    Other providers




                    Pediatrics 2002:110 (suppl) 1304-1306

  www.hrtw.org
                 6 Critical First Steps
         to Ensuring Successful Transitioning
            To Adult-Oriented Health Care


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




  www.hrtw.org
      Core Knowledge & Skills: POLICY

1. Dedicated staff position coordinates
   transition activities
2. Office forms are developed to support
   transition processes
3. CPT coding is used to maximize
   reimbursement for transition services
4. Legal health care decision making is
   discussed prior to youth turning 18
5. Prior to age 18, youth sign assent forms for
   treatments, whenever possible
6. Written transition policy states age youth
   should no longer see a pediatrician
       www.hrtw.org
 Core Knowledge & Skills: MEDICAL HOME

1. 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
       www.hrtw.org
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)
       www.hrtw.org
 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
       www.hrtw.org
           Core Knowledge & Skills:
           HEALTH CARE INSURANCE


1. 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


      www.hrtw.org
   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.
      www.hrtw.org
                       6 Critical First Steps
                to 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 2002:110 (suppl) 1304-1306
        www.hrtw.org
   Create Portable Medical Summary

- Use as a reference tool

- Accurate medical history & contact #s

- Carry in your wallet.

- Use for disability documentation 




  www.hrtw.org
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?




  www.hrtw.org
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.
  www.hrtw.org
                 6 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
  § Expecting, anticipating and planning
  § Experiences and exposures
  § Skills: practice, practice, practice
  § Collaboration with schools and
    community resources
                          Pediatrics 2002:110 (suppl) 1304-1306
  www.hrtw.org
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
  www.hrtw.org
                 6 Critical First Steps
         to 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 2002:110 (suppl) 1304-1306

  www.hrtw.org
               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


www.hrtw.org
      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
   www.hrtw.org
  Transition & ……Insurance

                 NO HEALTH INSURANCE

40% college graduates         (first year after grad)


1/2     of HS grads who don’t go to college

40% age 19–29, uninsured during the year

 2x      rate for adults ages 30-64
                    SOURCE: Commonwealth Fund 2003
  www.hrtw.org
             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)
        www.hrtw.org
            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

  www.hrtw.org
    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)


  www.hrtw.org
  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

   www.hrtw.org
 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.

  www.hrtw.org
          Transition & ……Sexuality




www.hrtw.org
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?
  www.hrtw.org
 Who Starts the Discussion?

 1. Medical (Doc, Nurse, OT/PT)

 2. Family (how early?)

 3. Teachers

 4. Community resources


Everyday messages:
TV, videos, Friends, Internet – family,
community
  www.hrtw.org
                 Family Roles


§ What pediatricians & teachers
  don’t know - don’t 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



  www.hrtw.org
        Integrated Sexual Healthcare


§ Importance of sexuality in healthcare

§ Psychologist’s responsibility

§ Rehab team sharing responsibility

§ Patient’s ranking of sexuality as
  important



  www.hrtw.org
                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
 www.hrtw.org
                   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)



    www.hrtw.org
                  Family Roles

§ Changing role:
 Parent è Personal Support


§ Honesty & Dignity (before puberty)

§ Pre-plan (smoothing out awkward moments)

§ When personal values differ

§ Terminal does not mean asexual


   www.hrtw.org
                  Youth & Family Roles

§ Masturbation Time!

§ Supplies:
  èYouth (directs)
  èParent (gathers)

§ Role Switch: parent è personal support

§ Clean-up (no talking)

§ Role Switch: personal support è parent
   www.hrtw.org
                  Youth & Family Roles


§ Assess - The Plan, Supplies & Support


§ Revise supports - disease progression


§ Libido change: Rx Traditional - Alternative




   www.hrtw.org
                  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?deptid=16




   www.hrtw.org
Bottom line:         with or without us- youth and families
     get older and will move on…Think what can make it
     easier; do what’s in your control and support youth to
     tackle what’s 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?
          www.hrtw.org
                   What
                  would
                 you do,
                   if you
                thought
               you could
                not fail?
www.hrtw.org
               Patti Hackett, MEd
                Co-Director, HRTW Center
                       Bangor, ME




           pattihackett@hrtw.org




www.hrtw.org

				
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