Interdisciplinary, Interagency Collaboration for Transition From Adolescence to Adulthood

1. Interdisciplinary, InteragencyCollaboration for Transition From Adolescence to Adulthood

2. Panelists • Tony Antosh, Ed.D.; Director, Sherlock Center, Rhode Island College • Ilka Riddle, Ph.D; Associate Director, University of Cincinnati UCEDD • Margo Izzo, Ph.D.; Associate Director, Nisonger Center, Ohio State University • Olivia Raynor, Ph.D.; Director. Tarjan Center, UCLA

3. Agenda Introduction, Agenda, Objectives, Issue (Antosh) Perspectives on Transition Healthcare (Riddle) Youth and Families (Antosh, videoclips) Education, Employment, Postsecondary (Izzo) Community Living (Antosh) Strategies for Interagency Collaboration (Raynor) Small Group Discussion Large Group Discussion Wrap up and Resources

4. Transition Listening Session Sue Swenson Deputy Assistant Secretary – OSERS US Department of Education Tuesday, December 4 3:00-4:15 Gunston East

6. Genesis of the Symposium • AUCD Board of Directors wanted to select one issue and use the breadth and depth of the network to create a national focus on that issue. • Interdisciplinary Practice is one of the foundation concepts of the AUCD network. • After significant discussion, the Board focused on applying the concepts of interdisciplinary, interagency collaboration to transition

7. The Issue Youth with IDD should be able to expect self-determined transitions with coordinated support from family, community, professionals, and agencies. But they and their families often experience very little coordination and collaboration from the myriad of systems involved in the transition process

8. Why Failure to support self-determination as a central element of the person-centered process of transition

9. Why Insufficient understanding of the role of culture in an individual or family’s concept or approach to transition

10. Why The tendency for professionals within each realm of transition (education, health, community living, employment, and others) to use language that is not easily understood by other professionals, youth with IDD, families, or other community partners

11. Why Neglecting to specifically explore how transition in the different realms could/should be linked for maximizing success

12. Self Determined Life Perspectives Education Health Employment Postsecondary Adult Supports Providers Outcomes Competence Healthy Life Place to Live Paying Job SocialNetwork Community Youth and Family Culture

13. Goals • Promote an interdisciplinary, interagency approach to transition • Understand the language, methodology and practices inherent in the different disciplines and perspectives • Understand the role of culture in transition • Develop strategies for linking disciplines and agencies • Increased awareness of network resources

14. Perspectives on Transition

15. Youth and Families

16. “I would like to live with my aunt who has provided me with the care that no one else has been able to do. I plan to find a part-time paying job. I would like to spend the rest of my days going to the gym to keep up my health, doing recreational activities in the community and being part of my social community. I can only do these things if I have wheelchair transportation, a job coach and a nurse to meet my medical needs.” Quote from a letter from a youth with IDD to an agency administrator

17. “I expected assistance in planning ways that my daughter could function with support in various adult roles….I expected that the various entities that were involved with her support…would collaborate together to design supports that would help her reach her unique adult goals. I expected to have good, complete and understandable information….I expected that supports would be available in her own community in places of her choosing…. What I needed most was a guide.” Quote from a mother

18. “Families want information and planning processes that are clear, simple and individualized. Families and individuals want choice and control – their own voices primary in design of services – rather than decisions made arbitrarily by others….. want what any family wants for their young adult…. looking for the ways and means….” Quote from a community supports navigator

19. Two Videos The Good and the Bad of Transition Kristen Michael

20. Youth and Family Practices • Good, complete, understandable information • Focused transition planning • Person-centered transition planning • Family/Community Support Navigators • Self-Determination Curriculum

21. Healthcare Transition Ilka Riddle

22. Health Care Transition is… • …the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems. Blum et al.,1993

23. Health Care Transition is: • patient-centered • flexible • responsive • continuous • comprehensive • coordinated AAP, AAFP, ACP, 2002

24. Guidelines & Best Practices • AAP, AAFP and ACP 2002 Consensus Statement: 6 First Steps to Successful Transition • AAP, AAFP and ACP 2011 Clinical Report: Health Care Transition Planning Algorithm

25. Best Practice: Learning Collaboratives Pilots • Got Transition Learning Collaboratives (www.gottransition.org) • Transition Collaborations of Pediatric and Adult Practices/Systems

26. Shared Management Approach to Transition • Team/Partnership Approach • Active Participation • Empowerment • Self-Determination

28. Data tell us that… • 40.0 % of all youth 12-17 years with special health care needs receive the services necessary to make appropriate transition to health care, work, independence National Survey of Children with Special Health Care Needs, 2009/2010 Data

29. Considerations • People involved: • Youth/Young Adults • Family Members/Guardians • Pediatric care provider & specialists • Adult care provider & specialists • (Others)

30. Considerations • Systems involved: • Pediatric health care system • Adult health care system • (Others (e.g. service system, education system, etc.))

31. Barriers/Issues: Youth/Young Adult • Little involvement in transition process • Little knowledge about condition, health, health issues, health management • Late start to transition planning

32. Barriers/Issues: Family Members • Late start to transition preparation • Little knowledge about how to navigate the adult health care system • Little information about changes regarding eligibility for services, changes to health care coverage and guardianship issues

33. Barriers/Issues: Pediatric Providers • Little time for transition care/coordination • Lack of reimbursement for transition support • Difficulty “letting go” • Difficulty identifying adult care providers and specialists • Little knowledge about community resources

34. Barriers/Issues: Adult Providers • Lack of training in congenital and childhood onset medical conditions • Lack of training in working with patients with disabilities • Lack of communication from pediatric provider • Low reimbursement rates for comprehensive care/ care coordination

35. Strategies: Youth/Young Adult • Active participation in health care and transition preparation • Making use of transition resources and tools specific to youth • Active participation in finding adult health care provider and specialists

36. Strategies: Family Members • Early transition planning • Encourage/empower youth to participate • Utilize transition resources, tools and information specific to families • Initiate identification of adult providers • Ask for portable and accessible medical summary

37. Strategies: Pediatric Providers • Transition Policies & Processes • Transition Plan at age 12-14 and updates • Provide transition resources • Initiate contact with adult providers • Communicate with adult providers • Provide medical summary

38. Strategies: Adult Providers • Engage in transition process • Learn from young adult & family members • Learn about congenital & childhood onset medical conditions • Communicate with pediatric providers

39. Recommendations • Improved Health Care Provider Training • Inclusion of disability training in medical school curricula • Education about congenital/childhood onset medical conditions • Inclusion of practical experience/ transition care rotations, etc.

40. Recommendations • Improved Collaboration and Dissemination of Information • Inter-agency/multi-agency/integrated collaborative transition approach • One comprehensive transition resource guide that addresses all types of transition, distributed in all systems

41. Recommendations • Increased evidence-base for successful health care transition: • Health outcomes data

42. Resources • Got Transition National Health Care Transition Center www.gottransition.org • Florida HATS www.floridahats.org

43. Transition to College and Careers Margo Vreeburg Izzo, PhD Program Director of Transition Services Ohio State University Nisonger Center Izzo.1@osu.edu

44. College & Career Ready • Higher expectations of all stakeholders • 21st Century Skills (CCS leading to CCR) • Grades 8 – 12: Transition-focused Curricula • Grades 13 – 16: PSE Programs • Technology utilization • Continue evidence-based policies/practices • National Secondary Transition TA Center • Think College • What Works Clearinghouse

45. Transition RequiresInteragency Collaboration IDEA of 2004 requires schools to coordinate with other service systems (i.e. VR, DD): • IEP must include AATA, measurable postsecondary goals, projected date for services (i.e. travel training, work experience) • If participating agencies fail to provide transition services, LEA shall reconvene the IEP team to identify strategies to meet the transition objectives (IDEA of 2004, (D)(1 - 6)

46. Transition RequiresInterdisciplinary Approaches • Age Appropriate Transition Assessments (AATA) • Transition to Career/Employment • Transition to College/Postsecondary Education • Focus Common Core Standards on College and Career Readiness

47. Transition RequiresInterdisciplinary Approaches Special Ed, Voc Ed, Gen Ed & Rehab/DD counselors collaborate to provide: • Career development & exploration • Soft skills and employability development • Self-determination/self advocacy training • Summer work experiences • Job training and placement • Carter, Austin & Trainer, 2011, Predictor of Postschool Employment Outcomes for Young Adults with Severe Disabilities, Journal of Disability Policy Studies, 1-14.

48. Transition RequiresInterdisciplinary Approaches Special educators, OT & VR provide: • Transition assessments • Assistive technology assessment/training • Worksite analysis & job match • Job development & placement • Worksite Jigs, Ergonomic assessments, etc.

49. Teach SD Transition Planning* The Model has 3 phases & supports AATA Phase 1. What is my goal? What career do I want? Phase 2. What is my plan? What action can I do today to prepare for chosen career? Phase 3. What have I learned? Revise goals & plans, as needed Model Developed by M. Wehmeyer & Palmer, 2003

50. Age Appropriate Transition Assessment Interdisciplinary IEP teams use AATA to: Develop realistic and meaningful goals Provide information for present levels of academic achievement and functional performance Learn about the individual student, his/her strengths, needs, interests, preferences (SPIN) Connect IEP with future plans Inform the Summary of Performance 50