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)