1 / 40

hrtw national resource center Patti Hackett, MEd Co-Director -- Bangor, ME Mallory H. Cyr

Transition to Adulthood: Preparing for the Changing Roles for CYSHCN. hrtw national resource center Patti Hackett, MEd Co-Director -- Bangor, ME Mallory H. Cyr Youth Coordinator -- Sabattus, ME Charting the Course Conference Killington, VT June 4, 2008.

shelley
Download Presentation

hrtw national resource center Patti Hackett, MEd Co-Director -- Bangor, ME Mallory H. Cyr

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. Transition to Adulthood: Preparing for the Changing Roles for CYSHCN hrtw national resource center Patti Hackett, MEd Co-Director -- Bangor, ME Mallory H. Cyr Youth Coordinator -- Sabattus, ME Charting the Course Conference Killington, VT June 4, 2008

  2. During the next 90 min. we will ..... • Affirm your beliefs • Ah Ha Moments! • Make You Squirm • Tools to Use • Choose to Disagree You are advocates with skills Your skills are for certain time frames Now is the time to learn the next set of skills

  3. Imagine the Possibilities….

  4. Planning for a Future

  5. Your Skills, Your Knowledge - Get to Grow • After the Diagnosis (Dx) • Support & Connections • Learning to Take Advice (again) • You are smarter, wiser, know more folks • and have new info one click away! • Time is RIGHT for next layer of skills

  6. Just the Facts about HRTW Time & Skills Preparing for the Difference

  7. HRTW TEAM HRSA/MCHB Project Officer Elizabeth McGuire Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Theresa Glore, MS Medical Home & Transition Richard Antonelli, MD, MS, FAAP Patience H. White, MD, MA, FAAP Betty Presler, ARNP, PhD Family, Youth & Cultural Competence Mallory Cyr Ceci Shapland, MSN Trish Thomas Interagency Partnerships Debbie Gilmer, MEd Federal Policy Patti Hackett, MEd Tom Gloss

  8. 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.

  9. What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful?

  10. 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

  11. 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

  12. “Childrenand youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” Source: McPherson, M., et al. (1998). A New Definition of Children with Special Health Care Needs. Pediatrics. 102(1);137-139.http://www.pediatrics.org/search.dtl Who Are CYSHCN?

  13. NS-CSHCN 2005 Section 6: Family Centered Care - Transition Qs

  14. NS-CSHCN 2005 Section 6: Family Centered Care - Transition Qs

  15. RI Data…

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

  17. Youth are Talking: Health Concerns Main concerns for health: • What to do in an emergency • How to get health insurance • Learn how to stay healthy • What could happen if condition gets worse • SOURCE: Joint survey: Minnesota Title V CSHCN Program and the PACER Center, 1995 • Survey - 1300 YOUTH with SHCN / disabilities • - AND - • National Youth Leadership Network Survey 2001, • 300 youth leaders disabilities

  18. Health Care Transition Takes Time & Skills

  19. CORE National Performance Measures 1. Screening 2. Family 3. Medical Home 4. Health Insurance 5. Community Services 6. Transition SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

  20. What is Health Care 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

  21. New World: New Lingo 1. Moving Up from Powerless 2. Transferring Skills Doc/RNparent family & friends Family  child/youth Youth  friends 3. Strengthening Families - Support (Family to Family) - Mentor (Life Coach) - Counseling (Getting thru the hard patch) - Financial Planning

  22. Health Care TransitionPreparing for the Difference How can youth be Involved?

  23. How to prepare for the difference in roles: Shared Decision Making

  24. Levels of SupportShared Decision Making

  25. Know Your Health & Wellness Baseline • 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) • Handout: Preventative Care: What Tests - When

  26. Screen for All Health Needs • Hygiene • Nutrition(Stamina) • Exercise • Sexuality Issues • Mental Health • Routine(Immunizations, Blood-work, Vision, etc.)

  27. 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

  28. 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.

  29. What would you do, if you thought you could not fail?

  30. 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 Reality check: Have all of us done the prep work for the send off before the hand off?

  31. Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME pattihackett@hrtw.org Mallory Cyr Youth Coordinator, HRTW Center Sabattus, ME mallorycyr@htrw.org

  32. Evaluation Questions:  What in this session interested you?  What in this session surprised you?  What did you not find interesting or surprising?  Did anything in this session bother you?  What will you use in your future work that you learned today?

More Related