What’s Health Got to Do With It?
Integrating Education & Health
Care Transitions to Achieve
Mutual Outcomes
APSE National Conference
Philadelphia, PA
June 23, 2015
Let’s Chat
Twitter: @WSPJ1
Text: 785-764-2472
Online: PAHJ44U9
What Happens to Youth When They Grow Up?
Experience a variety of transitions:
School
Adult Services
But did you know:
Pediatric Medical Care
Adult Medical Care
Pediatric Specialty Care
Adult Specialty Care
What is the Goal?
• Quality Adult Life
• Health Care
• Well-Being
• Employment
• Independent Living
• Community Participation
• Relationships
What are Your Experiences with Health Care
Transition?
 I am currently receiving pediatric medical care
 I am currently receiving adult medical care
 I am currently in the process of transitioning from pediatric to adult care
 I am not currently transitioning but would like to
 I would like more information about health care transition
What is Health Care Transition?
Family
HEALTHCARE
TRANSITIONS…
Pediatrics
Adult Care
PATIENT
…
What is Often the Reality?
Family
HEALTHCARE
TRANSITIONS…
Pediatrics
Adult Care
PATIENT
The
Specialist
…
What is the Impact?
• Range of disparities in health outcomes
• Reduced access to health care
• More difficulty getting needed care
• Poorer health outcomes
What Contributes to “the Gaps” in Transition?
• No reimbursement for transition activities
• Limited number of adult providers
• Youth not considered to be “transition ready”
• Lack of knowledge of pediatric and congenital conditions
How Many Youth with Special Health Care
Needs Turn 18 Each Year?
 100,000
 250,000
 500,000
 750,000
 1,000,000
Why is Health Care Transition Important?
• 4.5 million youth with special health care needs
• 65% of whom are moderately to severely affected
• 750,000 of these youth turn 18 every year
• Most live well into adulthood
Why Should We Think About Health?
• Impacts everything we do
• Influences school, work, and quality of life
• Importance of access to insurance and medical care
What Often Happens?
Different Worlds
Different Perspectives
Different Models
Concept of Supports
Awareness of Best Practices
Expectations
So How Can We Connect the Two?
What Did Stakeholders Tell Us?
• Focus Groups
• Interviews
• Survey
• Learning Collaborative
What Were the Common Themes?
Information & Education
Tools & Resources
Interventions & Protocols
What are Critical Components in Transition?
• Developing skills that are credible in adulthood
• Providing youth with access to people in the adult world
• Providing opportunities for youth to participate in the adult world
Transition Engagement Checklist
 A framework of “talking points”

A “current status check” of key aspects of successful
transition

An “action plan” for addressing the skills
and supports needed to enhance
the adolescent’s self-determined
actions over time.
TRANSITION ENGAGEMENT CHECKLIST
Transition Engagement Checklist
An example of a recommended “introductory statement” is…
Hi “________!”, my name is Dr. ________!, “Who did you bring with you today?
So “________”, you are growing up/getting older and I want to talk with you
about what you are thinking and doing in terms of becoming more in charge of
your own health care!
Being more in charge of your own health care becomes important as you grown
up and get ready to change from having a pediatrician [name] as your doctor
and find a new “adult” doctor to be your doctor.
We are going to talk about some of this today…
I. ASSETS for Transitioning
The questions guiding this section are designed to identify assets [knowledge
and skills] for making successful transitions. In particular, it seeks to identify and
assess the youth’s current competencies with regard to demonstrating their
practical experiences and skills in key areas that contribute to their short and
long-term participation in their health care decision-making and management.
1. Tell me some things that you do to take care of your own health.
2. What do you consider to be your [the youth] STRENGTHS in
terms of taking care of your own health?
3. How important is this transition to you?
4. How confident are you about making this transition?
5. Tell me more about your health and medical conditions.
6. What medications do you take and how often do you take them?
7.
Do you take your meds on your own? [i.e., independently]
8. Do you have a concise [2-page] “patient summary” that describes
your health and health care needs? If so, tell me more about it.
·
·
·
STRATEGIES/RECOMMENDATIONS
ACTION Item[s] – Parent
ACTION Item[s] – Youth
Overall Rating [ ] [ ] [ ] [ ] [ ]
Copyright 2015 – Wendy Parent-Johnson, PhD & Richard Parent-Johnson, PhD
TRANSITION ENGAGEMENT CHECKLIST [Continued]
II. OPPORTUNITIES for practicing Transitions
The questions guiding this section are designed to determine the youth/young
adult’s current opportunities to develop and practice use of those assets that
contribute to their short and long-term participation in their health care decisionmaking and management.
1. Describe the opportunities you have had to discuss your health
care with your regular pediatrician and/or specialist doctors…
2. Have you and your doctors talked about how your health issues
might affect you in school? If so, what?
3. Have you and your doctors talked about how your health issues
might affect you in terms of working on a job? If so, what?
4. What other doctors do you see? [Dentist, Ophthalmologist, etc.]
5. What emergency situations have you [or, might you] encounter
and what would you do to handle them?
6.
How comfortable are you talking with your doctors?
a. What subjects are you comfortable talking with them
about?
b. What topics would you LIKE to talk them about?
·
STRATEGIES/RECOMMENDATIONS
·
ACTION Item[s] – Parent
·
ACTION Item[s] – Youth
Overall Rating [ ] [ ] [ ] [ ] [ ]
Copyright 2015 – Wendy Parent-Johnson, PhD & Richard Parent-Johnson, PhD
TRANSITION ENGAGEMENT CHECKLIST [Continued]
III. Making CONNECTIONS with Adult Providers
The questions guiding this section are designed to identify and explore current
and future actions and needs as they relate to the youth and their family/guardian
making effective connections with the adult doctors and the adult health care
system.
1. What do you think might be some of the differences between
having a pediatrician [and specialists] helping you with your
health care and having an adult health care provider?
2. Have you started making contact with any adult health care
doctors? [If not, when do you think you should begin?]
3. Have you made any exploratory visits [well visits] with any
potential adult care doctors?
4. Is there someone from your current doctor’s office who could
help you find an adult care doctor for you?
5. Is there someone from your current doctor’s office who might be
willing to participate in your first visit to an adult doctor?
6. Do you need more information about insurance issues that are
related to getting older and changing doctors?
7. What additional resources would be helpful to you to make this
transition? [For example, information concerning guardianship?]
·
STRATEGIES/RECOMMENDATIONS
·
ACTION Item[s] – Parent
·
ACTION Item[s] – Youth
Overall Rating [ ] [ ] [ ] [ ] [ ]
Copyright 2015 – Wendy Parent-Johnson, PhD & Richard Parent-Johnson, PhD
Patient Interaction Tool
• Developed by youth with disabilities
• Input regarding the type, number, and format of questions
• Determined the most important and useful questions
• Provides youth with a guide to start conversations
Questions to ask my Doctor
1. Does _________ change my…?
Eating & drinking
School or work
Driving
Energy level
Social activities
2. What changes could I actually experience?
3. When and how long will this go on?
4. What should I do next?
®2015 - Center for Disabilities, USD
Adolescent Transitioning Clinic
• Multi-disciplinary, day long
• Comprehensive
• Transition readiness
• Self-determination
• Education
• Employment
• Community organizations
“I hope…that other families will have this wonderful experience and to provide another
young person the opportunity to use this great resource to assist them as they
transition to the adult world. I highly recommend it! A++”
Transitioning Clinic
Schedule for J. & Family
April 17, 2015
TIME
9:30 AM
10:00 AM
10:30 AM
11:30 AM
12:00 PM
1:00 PM
1:30 PM
1:30 PM
2:00 PM
2:15 PM
2:30 PM
ACTIVITY
Welcome and review of the day
Complete Self-Determination
Assessment (AIR) & Transition
Readiness Checklist
Health Care Transition
[Simulation]
Situational Assessment #1
J
X
FAMILY
X
X
X
X
X
X
Lunch break
Discussion w/ Parent Connection
Discussion w/ Vocational
Rehabilitation
Discussion with Self-Advocate/Peer
Mentor
X
X
X
X
Discussion with Benefits Specialist
Situational Assessment #2
X
X
Discussion with Social Work staff
X
Staff team meeting
Family break
3:00 PM
3:30 PM
4:30 PM
Family & Staff: Discussion/Action
Planning
End
X
X
How Can I Participate?
• Field testing of the Transition Engagement Checklist
• Field Testing of the Patient Interaction Tool
• Provide input, comments, and feedback
• Stay connected
What Else Can I Do?
• Get to know the medical community
• Share resources and what you can do
• Provide “patient summaries” (skills, communication, supports)
• Include health in your work
• Promote skills and experiences important for health care transition
Let’s Hear From You?
• http://www.socrative.com
• Enter Teacher’s Room Code: PAHJ44U9
• Click on: Join Room
• Enter Your Name: _____________________
• Click on: Done
For more information, contact
Wendy Parent-Johnson
Wendy.parentjohnson@usd.ed
(605)357-1468
Richard Parent-Johnson
Richard.parentjohnso@usd.edu
USD Center for Disabilities (www.usd.edu/cd)