Welcome ….. Before We Start

1. Welcome ….. Before We Start • Handout: Changing Roles • - Fill in • Post It Notes “Question Lot” • your name, email, Q, topic, expertise • -What question do you want to ask? • -What expertise do you have and can share?

2. What does it take to become independent? Join a lively • discussion of the information and skills youth need to be on their own and how to prepare youth for this important step. • Lively Discussion: • What is On Your Mind? • Burning Questions: • Need answers & Resources • Experts in the Room • Resources post conf • Solution Network About YOU

3. 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)

4. Imagine the Possibilities….

5. Transition to Adulthood

6. Transition & ……Family

7. 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

8. Transitions: Growing Up Ready to Live!The Ultimate Outcome: Transition to Adulthood HRTW National Resource Center Team Patti Hackett, MEd Co-Director Mallory H. Cyr Youth Coordinator Ceci Shapland, RN, MS Consultant-Family Partnerships Maine Integrative Services Grant Anna H. Cyr Augusta, ME October 22, 2008

9. Part 01 – Overview National Data, Federal Policy Part 02 – Preparing for the Difference: Roles for Providers, Family and Children/Youth Part 03 - Tools for Providers, Family and Children/Youth Part 04 – Discussion: Putting Ideas Into Practice: Your Strategies – Making it Work

11. www.hrtw.org

12. 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.

13. 1. What do you remember about your teen years and health care 2. When did you leave your pediatrician and move to an internist? Your own child? 3. Have you had experience in assisting a youth with a disability moving to adult systems?

14. Part 01 – Overview National Data, Federal Policy Part 02 – Preparing for the Difference: Roles for Providers, Family and Children/Youth Part 03 - Tools for Providers, Family and Children/Youth Part 04 – Discussion: Putting Ideas Into Practice: Your Strategies – Making it Work

15. “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?

16. Disabled?? Special Health Care Needs? <18 -- HEALTH SERVICES CYSHCN - Children & Youth with Special Health Care Needs - Genetic - Chronic Health Issues - Acquired >18 -- Adult - Person with Disability - Person with Health Impairment ADA - Civil Rights

17. Outcome Realities Nearly 40% of youth with SHCN cannot identify a primary care physician 20% consider their specialist to be their ‘regular’ physician Primary health concerns are not being met Fewer work opportunities, lower high school grad rates and increased drop out from college YSHCN are 3 X more likely to live on income < $15,000 CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

18. 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

19. 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

20. A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs American Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage Pediatrics 2002:110 (suppl) 1304-1306

21. Part 01 – Overview National Data, Federal Policy Part 02 – Preparing for the Difference: Roles for Providers, Family and Children/Youth Part 03 - Tools for Providers, Family and Children/Youth Part 04 – Discussion: Putting Ideas Into Practice: Your Strategies – Making it Work

22. What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful? 6 Choices

23. 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

24. 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

25. Time Jan 2004

26. Societal Context for Youth without Medical Conditions in Transition • 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)

27. 3. What is transition?   4. Who needs transition planning?

28. 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….

29. 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

31. What does the Data tell us? Natl CSHCN 2005-06 HRTW 2004-06 NC Neph 2005 Youth – MN 1997 Youth – NYLN 2003

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

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

37. 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

38. 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

39. Maintaining Health Care Insurance

40. Transition & ……Insurance NO HEALTH INSURANCE 40% college graduates (first year after grad) 1/2 of HS grads who don’t go to college 40% age 19–29, uninsured during the year 2x rate for adults ages 30-64 Source: Commonwealth, 2003, 2005

41. Percentage of adults ages 19–29 reporting going without various services because of cost, by health insurance status: 2005 Source: Collins, et al., 2007.

42. Extended Coverage – Family Plan • Adult Disabled Dependent Care • Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer, hospital or medical service corporation or health care center • Adult, childless continued on Family Plan • Increasing age limit to 25-30 • CO, CT, DE, FL, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

43. Handouts: Private Health Insurance Maine Health Insurance Statute – up to age 25 Chapter 33:§2742-A. Extension of coverage for dependent children Effective August 23, 2006 Dependent child; definition. A.  Is unmarried; B.  Has no dependent of the child's own; C.  Is a resident of this State or is enrolled as a full-time student at an accredited public or private institution of higher education; and D.  Is not provided coverage under any other individual or group health insurance policy or health maintenance organization contract or under a federal or state government program.

44. Handouts: Private Health Insurance Requires An insurer may require, as a condition of eligibility for continued coverage in accordance with this section, that a covered person seeking continued coverage for a dependent child provide written documentation on an annual basis that the dependent child meets or continues to meet the requirements Celebrate Annual Documentation!

45. How many states cover non-categorical adults? Sources: Klein and Schwartz, 2008; Dorn, et al., 2005. Note: comprehensive programs provide (a) benefits at least as generous as typical ESI to (b) at least all adults up to 100% FPL.

46. Part 01 – Overview National Data, Federal Policy Part 02 – Preparing for the Difference: Roles for Providers, Family and Children/Youth Part 03 - Tools for Providers, Family and Children/Youth Part 04 – Discussion: Putting Ideas Into Practice: Your Strategies – Making it Work

47. 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

49. 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.

50. TOOLS - You can use by FRI! Family/Youth • Changing Roles: Families • Changing Roles: Children & Youth • 5 Qs - IADL reporting template