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Transition to Adulthood: The Ultimate Outcome

Transition to Adulthood: The Ultimate Outcome . Your Journey: Personal & Your Work Patti Hackett, MEd Co-Director HRTW National Resource Center F2F-PA February 2009. Thanks + Who & Why we are here!. KUDOS: Liz Healy & Joan Badger About ME: born a teacher, low income, blunt,

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Transition to Adulthood: The Ultimate Outcome

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  1. Transition to Adulthood: The Ultimate Outcome Your Journey: Personal & Your Work Patti Hackett, MEd Co-Director HRTW National Resource Center F2F-PA February 2009

  2. Thanks + Who & Why we are here! • KUDOS: Liz Healy & Joan Badger • About ME: born a teacher, low income, blunt, Union Steward, creative, humorous! thank-you letter to Dr. Koop • About YOU: Meeting your expectations Experts in the Room • About US: Agree, Ah ha!, Squirm, Disagree

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

  4. O V E R V I E W • PART 01: Your Journey - Personal • PART 02: Your Journey - Your Work • PART 03: Raising Expectations • PART 04: Listening & Coaching Youth • PART 05: Next Action Steps

  5. Putting Policy Into Practice Action  Policy = Change over time Reduction of Barriers, Increase ease of access Action  Practice = NOW KSAs Knowledge, Skills & Abilities - Tools to increase quality - Tools to Reduce stress - Tools to Expedite determination for services Keep in Mind: Two Different Issues

  6. O V E R V I E W • PART 01: Your Journey - Personal • PART 02: Your Journey - Your Work • PART 03: Raising Expectations • PART 04: Listening & Coaching Youth • PART 05: Next Action Steps

  7. Content for Each Section HINT Be open to taking advice The KSAs • Knowledge - what needs to be learned • Skills - teach it, practice it, master it • Assets - Automatic response, solution orientated - Strengthen Circle of Support

  8. Transitions: YOU & Your Child • HANDOUT: Exercise Changing Perspective • Fears & Anxiety - What holds us back from moving forward - One step at a time strategies • Scale 1-5: Where are you? Your child? Medical Team? 1 None 2 Well, a little 3 Sometimes a little, other times alot 4 I worry alot 5 Very very worried

  9. Health & Transitions: YOU & Your Child • HANDOUT: Life Span Skills/Changing Roles • Fears & Anxiety • 1 step at a time strategies

  10. Content for Each Section The KSAs • Knowledge - what needs to be learned • Skills - teach it, practice it, master it • Assets - Automatic response, solution orientated - Strengthen Circle of Support

  11. Health & Transitions: YOU & Your Child • Fears & Anxiety • 1 step at a time strategies

  12. Content for Each Section The KSAs • Knowledge - what needs to be learned • Skills - teach it, practice it, master it • Assets - Automatic response, solution orientated - Strengthen Circle of Support

  13. Health & Transitions: YOU & Your Child • Fears & Anxiety • 1 step at a time strategies

  14. Content for Each Section HANDOUT: My portable medical summary The KSAs • Knowledge - what needs to be learned • Skills - teach it, practice it, master it • Assets - Automatic response, solution orientated - Strengthen Circle of Support

  15. Health & Transitions: YOU & Your Child • Fears & Anxiety • 1 step at a time strategies

  16. Content for Each Section The KSAs • Knowledge - what needs to be learned • Skills - teach it, practice it, master it • Assets - Automatic response, solution orientated - Strengthen Circle of Support

  17. Health & Transitions: YOU & Your Child • Fears & Anxiety • 1 step at a time strategies

  18. Content for Each Section The KSAs • Knowledge - what needs to be learned • Skills - teach it, practice it, master it • Assets - Automatic response, solution orientated - Strengthen Circle of Support

  19. SECONDARY DISABILITIES -Prevention/Monitor - Mental Health - High Risk Behaviors AGING & DETERIORATION - Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments Screening

  20. 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, etc.)

  21. Growing Up Ready to LIVE! Health & Wellness …. + Humor

  22. Growing Up Ready to LIVE! Health & Wellness …. + Humor

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

  24. O V E R V I E W • PART 01: Your Journey - Personal • PART 02: Your Journey - Your Work • PART 03: Raising Expectations • PART 04: Listening & Coaching Youth • PART 05: Next Action Steps

  25. What does the Data tell us? Natl CSHCN 2005-06 HRTW 2004-06

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

  27. TRANS Qs: What Did PA families Say? http://cshcndata.org/DataQuery/SurveyAreas.aspx?yid=2 How often doctors encourage development of self-management skills and knowledge -- CSHCN ages 5-17 yrs only

  28. TRANS Qs: What Did PA families Say? http://cshcndata.org/DataQuery/SurveyAreas.aspx?yid=2 Discussing transition to doctors and other providers who treat adults -- CSHCN ages 12-17 yrs only in PA

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

  30. TRANS Qs: What Did PA families Say? http://cshcndata.org/DataQuery/SurveyAreas.aspx?yid=2 Anyone talked with family about how to maintain youth's health insurance as he/she becomes an adult -- CSHCN ages 0-17 only

  31. Injecting Health & Transition into Daily Work • Assess intake forms - last health examine was when? - screening for primary health (vision, hearing, cardio, mental health, sexuality) 2. Ask the Q…..5 yrs from now - skills & practice started? - choice: stuck, stalled or nudged forward 3. What do YOU need for supports, mentor BOTTOM LINE: Progress takes time, trial & error + practice

  32. O V E R V I E W • PART 01: Your Journey - Personal • PART 02: Your Journey - Your Work • PART 03: Raising Expectations • PART 04: Listening & Coaching Youth • PART 05: Next Action Steps

  33. Disabled?? Special Health Care Needs? <18 – Minor Child/Youth -- HEALTH SERVICES CYSHCN Children & Youth with Special Health Care Needs - Genetic - Chronic Health Issues - Acquired -- ED SERVICES (IEP or 504 Plan) - Student with Disability - Student with Health Impairment >18 – Adult (age of majority) - Person with Disability - Person with Health Impairment LEGAL: ADA (Americans with Disabilities Act) - Civil Rights

  34. “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?

  35. HRSA/MCHB Block Grant: NPM #6 Transition to Adulthood Youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. (2002) SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

  36. CORE National Performance Measures Transition & ……… 1. Family 2. Screening 3. Medical Home 4. Health Insurance 5. Community 6. Transition • Youth Involvement • Secondary Disabilities • Peds to Adult • Extend Dependent Coverage • Entitlement to Eligibility • 6. Inclusion in Community

  37. Good Documentation = Expedited Eligibility • HANDOUT: Activities of Daily Living • Just the facts • Avoid the story telling • Share the strengths and supports needed • Efficient – less time during intake – more time with person

  38. Monitoring Medication Monthly • HANDOUT: Tracking “Poly Pharm” • Many CY meds get changed a lot! • Count pills left at end of month • Track refills • Reminder when to call in for renewal of Rx

  39. O V E R V I E W • PART 01: Your Journey - Personal • PART 02: Your Journey - Your Work • PART 03: Raising Expectations • PART 04: Listening & Coaching Youth • PART 05: Next Action Steps

  40. What does the Youth Data tell us? NYLN 2003 HRTW-MN NC Neph 2005

  41. Time Jan 2004

  42. 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)

  43. 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

  44. Youth are Talking: Are we listening? Survey - 1300 YOUTH with SHCN / disabilities 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. SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995 *SOURCE: National Youth Leadership Network Survey-2001 300 youth leaders disabilities

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