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Transition to Adulthood: Improving Outcomes by Preparing for Changing Roles

Transition to Adulthood: Improving Outcomes by Preparing for Changing Roles (Families, Youth & their Docs too!). Patti Hackett, MEd Co-Director, HRTW National Resource Center Natick, MA 10 th Annual Chronic Illness and Disability: Transition from Pediatric to Adult-based Care

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Transition to Adulthood: Improving Outcomes by Preparing for Changing Roles

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  1. Transition to Adulthood: Improving Outcomes by Preparing for Changing Roles (Families, Youth & their Docs too!) Patti Hackett, MEd Co-Director, HRTW National Resource Center Natick, MA 10th Annual Chronic Illness and Disability: Transition from Pediatric to Adult-based Care Houston, TX Nov 5-6, 2009

  2. About Me….and …. YOU • Ideas Speak too fast – tell me  Patti Have a question, ask it • Promise: Agree / Disagree Ah ha! Squirm  Patti • About YOU:Experts in the Room Specialist Youth/Young Adults Dentist Teachers OT/PT Voc Rehab Counselors Mental Health School Nurses Social Workers

  3. www.hrtw.org

  4. Health Care Transition Yeah that’s the title – but what are YOU really thinking? "Taking the “F” (fear) out of Health Care Transition for CYSHCN The KSAs of Essential Health Care Transition Skills Transition to Adulthood is the Ultimate Outcome

  5. Objectives in Operational/ Behavioral Terms PART 01: The learner will state the rationale behind the importance of addressing and acknowledging anxieties and fears of families before teaching transition skills that are transferable to youth.

  6. Objectives in Operational/ Behavioral Terms PART 02: The learners will be able to identify what the data says AND differences between KSAs -Knowledge, Skills and Abilities as they relate to preparing for practice and mastery of essential skills for Health Care Transition to Adulthood for CYSHCN

  7. Qs, As, Sharing?

  8. Hmmmm……. Reactions? Discussion First thoughts?

  9. DO or NOT DO, there is no “try”.

  10. Qs, As, Sharing?

  11. Automatic Knowledge • Price of Gasoline? • Who are the World Series Champs? • Time of favorite TV show? • First thing you do in the morning? • Bank PIN #

  12. Mastery, Automatic Response, RoutineYup, It’s About YOU! Health & Wellness Baseline – Know Yours? • How does your body feel on a good day? • What is your typical • - body temperature • - respiration count • - elimination habits? • - quality of skin (front and back, ck butt 2x a yr)

  13. HANDOUT Health & Wellness 101 The Basics Transitions – Changing Roles For Families Transitions – Changing Roles For Youth Q> How could YOU use this tool?

  14. Time Jan 2004

  15. Societal Context for Transition for Youth without Medical Conditions • Parents are more involved - dependency “Helicopter Parents” …Blackhawk types…(CBS 2007) • 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)

  16. You can’t do it as well as I can I don’t want you to get hurt.

  17. Qs, As, Sharing?

  18. Part 01 Outcomes & Skills Needed

  19. OUTCOMES: It’stime for radical change SKILLS: Life-span management takes time SKILLS: Preparing to See Adult Doctors KNOWLEDGE: Maintaining Health Insurance KNOWLEDGE & SKILLS: Taking Charge

  20. Personal Journey – Growing Up Ready To Live • Dream, Dx, New Dream • Hope vs Reality • Seeing & Modeling Success • Launch the “Why not” “let’s do” spirit • OBJ: State the importance of self differentiation, how to facilitate self-determination, and promote/practice life span skills that impact sustaining employment

  21. Growing Up: Ready to Have Fun! Putting LIFE on the front burner & the Dx on the back burner Not …… “can we” but …….“how do we”

  22. Growing Up: As individuals Different personalities Different Dreams Same Dx but different

  23. Growing Up: Completing college

  24. Growing Up Ready to Have Fun! Community Inclusion Manager of the Team Buddy with Capt of the Team

  25. Growing Up Ready for LOVE

  26. Growing up ready for work……….. & vacation

  27. Growing Up Ready to try new things!

  28. Growing Up Ready to Make $ - and Pay Taxes

  29. Growing Up and are Adults Health & Wellness …. + Humor

  30. Part 02 Changing Roles & Skills Needed

  31. Outcome #6: Youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work and independence -- CYSHCN ages 12-17 only (derived) NO: 62.9% YES: 37.1%

  32. CHANGING PERSPECTIVES - 01 • What are your first thoughts about transition for your child/youth? • Thinking again from another point of view, how else can you describe this emotion, the fears, the anxieties, where are you confident or not?

  33. CHANGING PERSPECTIVES - 02 • What are the fear and anxieties that delay the start of transition? • How does looking at a different perspective promote movement forward?

  34. Question C6Q0A: Have [CHILD'S NAME]'s doctors or other health care providers talked with you or [CHILD'S NAME] about [his/her] health care needs as [he/she] becomes an adult? NO: 58.9% YES: 41.1%

  35. 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)

  36. Screen for All Health Needs • Hygiene (look good, feel good, smell good) • Nutrition(Stamina, Bowel Management, obesity, etc.) • Exercise(fitness and stamina) • Sexuality Issues(masturbation, STIs, GLBTQ/Twin Spirits) • OB-GYN(Routine care, Birth Control, Rape) • Mental Health(genetic, situational) • Routine(Immunizations, Blood-work, Vision, Dentist, etc.)

  37. Transition Post-School Outcomes • Employment and job training  Health • Post-secondary education  Health • Independent/home living  Health • Community Life  Health • Leisure and recreation  Health • What is Wellness? "You cannot educate a child who is not healthy, and you cannot keep a child healthy who is not educated." JOCEYLN ELDERS

  38. Question:(C6Q0A_B) Have they (child's doctors and other health care providers) talked with you about having [CHILD'S NAME] eventually see doctors or other health care providers who treat adults? NO: 41.9% YES: 12%

  39. Internal Medicine Nephrologists (N=35) Maria Ferris, MD, PhD, MPH, UNC Kidney Center

  40. Question: (C6Q0A_E) Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD'S NAME] becomes an adult? Not necessary??? 35.6% NO: 45% YES: 19.3%

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