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www.hrtw.org. Objectives for this Session. Participants will: Identify steps to assist youth and families to cope with the change and move forward in planning a successful transition in health care. Identify tools for assessment and skillbuilding for transition
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Objectives for this Session Participants will: • Identify steps to assist youth and families to cope with the change and move forward in planning a successful transition in health care. • Identify tools for assessment and skillbuilding for transition 3. Develop a plan of action for practice in assisting youth with special health care needs and their families in planning and executing transition in health care.
Preparing Families (providers too) for Planning and Executing Transition Taking the “F” Fear out of Transition
FAMILIES: Prepare for Changing Roles • Temporary spokesperson on behalf of minor child • (until age 18, or declared by the court) • - 2 voices to be heard: families and CY • - Circle of Support • - Assent to Consent • handout: Changing Roles
What is transition about?? 1. Transferring Skills Doc/RNparent family & friends Family child/youth Youth friends 2. Becoming informed consumer
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….
Most Important Skills • Communication • Problem-solving
Taking the First Steps • Carry insurance card • Program ICE • Develop portable health care summary • Assent to consent
Handout: Portable Medical Summary • Carry in your wallet • Good Days • - Cheat Sheet:Use as a reference tool • Accurate medical history • Correct contact #s • Document disability • Health Crisis • Expedite EMS transport & ER/ED care • Paper talks when you can not
ASSENT to CONSENT Eastern Maine Medical Center A parent or guardian is generally required to sign for a patient under the age of 18. Patients aged 14-17 should also sign. See IDD 20.041. If an adult is unable to make or communicate medical decisions, then the following may sign in the priority given: agent under healthcare power of attorney, guardian, spouse, domestic partner, next-of-kin. See IDD 20.060 Indicate capacity of representative.
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.icestickers.com
Preparing for the 15 minute Doctor Visit Know Your Health & Wellness Baseline How does your body feel on a good day? Prepare questions at each visit Give brief health status & overview of needs. Know emergency plan when health changes. What is your typical body temperature? Respiration, heart rate and blood pressure.
Collaborative Partnership Goals: • Youth defines his/her concerns • Youth and doctor agree on health goals • Health care skills and understanding are taught and supported • A follow-up plan for staying healthy is identified.
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
Youth With Disabilities: Stated Needs for Success in Adulthood 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 • SOURCES: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995 • *National Youth Leadership Network Survey-2001
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
What does Health have to do with Transition to Adulthood Everything! Employment Post Secondary education Community living Leisure Recreation Home Living
Care Plan Elements Medical Home Practice Care Plan Prepared for: Primary Care Provider PCP: Prepared by: Care Coordinator Date Plan Prepared:
Health Insurance What are the possibilities?
Extended Coverage – Family Plan 2. CONTINUATION OF COVERAGE POST 18 (18 states ) with/without disabilities. Unmarried, childless young adult, most require student status Up to age 24 — DE, IN, SD* Up to age 25 — CO, ID, ME, MD, MT, NM, RI, TX, VA , WA, WV Up to age 26 — CT, MA, NH, UT Up to age 30 — Fl, NJ, SD *employer option PA - Students in National Guard called to duty, maintain coverage until education is completed regardless of age
Skills for Children & Youth What to do By Age 10 BeforeAge 18
Transition and the Youth with Development Disabilities Level of participation Supports Health advocate
Tips for Transition Written by the Youth Leadership Network for the Minnesota Children with Special Health Needs Program. • Build a relationship with your provider • Make a list of your questions • Carry health information in your wallet • Connect with peers like yourself • Know your diagnosis
Tips for Transition • Keep your appointments • Have a support system with family and friends • Consider seeing the doctor by yourself • Talk to your doctor about your future plans: school and employment • Talk to your doctor about your plans for living in the community
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!!!!! Reinforce life span skills - Prepare for the marathon Assist youth to learn how to extend wellness, practice skills and learn Reality check: Have all of us done the prep work for the send off before the hand off?
Ceci Shapland cecishapland@hrtw.org Q & A
Resources National Network on Youth Transition for Behavioral Health at the University of South Florida http://nnyt.fmhi.usf.edu/ The Mission of the NNYT is to improve practices, systems, and outcomes for transition-age youth and young adults (14-29 years of age) with emotional and/or behavioral difficulties (EBD). Issue briefs from the Partners for Youth Transition (PYT) initiative (2001-2006) Resources - see particularly Toolbox materials http://ntacyt.fmhi.usf.edu/resources/: Transition to Independence:http://tip.fmhi.usf.edu/ The mission of the Transition to Independence Process (TIP) system is to assist young people with emotional and/or behavioral difficulties (EBD) in making a successful transition to adulthood with all young persons achieving, within their potential, their goals in the transition domains of education, employment, living situation, and community life. New handbook edited by Hewitt B. “Rusty” Clark, PhD & Deanne K. Unruh, PhD (2009) Transition of Youth and Young Adults with Emotional or Behavioral Difficulties: An Evidence-Supported Handbook, Brooks.
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