Improving Transition Outcomes for Young Adults with Complex Disabilities including Deafblindness

1. Improving Transition Outcomes for Young Adults with Complex Disabilities including Deafblindness “An Emphasis on Beliefs, Planning, Curriculum and Coordination” presented by Jerry G. Petroff, Ph.D. 2008 Transition/Parent-Educator Connection Conference Reach for Success February 18-19, 2008

2. What do we know about the Post-School Lives of Youth with Complex / Significant Disabilities?

3. Historical and Research Context What are the factors that promote youth with deafblindness to transition from school to successful adult lives within their communities?

4. Then . . . Now

5. National Transition Follow-up Study of Youth Identified as Deafblind • Characteristics of Youth Identified as Deafblind • Post – Secondary Experiences • Post – School Experiences

6. National Transition Follow-up Study of Youth Identified as Deafblind “Parent Perspectives” (Petroff, 1999) WHAT THE STUDY REVEALED ABOUT PLANNING AND EDUCATIONAL PROGRAMS • The majority of students did not received adequate transition planning; • Only 40% of the students’ and/or parents’ interests and preferences were identified as a component of the transition planning process; • Only 12% of youth and their families were involved in person- centered planning; • Of those who engaged in transition planning, the majority didn’t begin until one year prior to school exit; • A very few number of students received community based experiences (vocational or otherwise)

7. The Post-School Lives of Youth with Deafblindness by Families Across America

8. National Transition Follow-up Study of Youth Identified as Deafblind “Parent Perspectives” (Petroff, 1999) WHAT THE STUDY REVEALED ABOUT PLANNING AND EDUCATIONAL PROGRAMS • The majority of students did not received adequate transition planning; • Only 40% of the students’ and/or parents’ interests and preferences were identified as a component of the transition planning process; • Only 12% of youth and their families were involved in person- centered planning; • Of those who engaged in transition planning, the majority didn’t begin until one year prior to school exit; • A very few number of students received community based experiences (vocational or otherwise)

9. 2nd National Transition Follow-up Study of Youth Identified as Deafblind “Parent Perspectives” [Petroff, 2008] • Research question(s) remain the same, with the exception that there is further inquiry into the effects of education under No Child Left Behind and related federal policies; • The study structure remains the same with some updates related to terms and inclusion of characteristics; • The reporting process is expanded through an on-line survey response; in-person interviews and telephone interviews

10. National Transition Follow-up Study of Youth Identified as Deafblind 2007 Pilot Study • Data suggests that there is an improvement in the secondary educational experiences of youth with deafblindness (access to the general education curriculum as compared to the original 1999 study • Data suggests that there is no improvement in employment outcomes for youth with deafblindness as compared to the 1999 study • Data suggests that more youth are volunteering than working • Data suggests that there youth remain primarily living with their parents; • Data suggests youth who are deafblind continue to be isolated within their communities. • Transition planning is much more deliberate yet maybe yielding similar results; • Parents and others are aware of the concepts of transition planning

11. Transition Survey 2007 • Ranking of Important Aspects of Post-School Lives • Areas that parents would want control • Barriers and Challenges • General Data regarding current living and employment RESULTS

12. Why are we here? To find the KEYs to successful transition from school to adult life for youth with complex needs . . .

13. The Key Solution Transition Planning and compatible Educational Programs and Services

14. ORIGMAI Activity Lessons in Making Transitions What did we learn? It’s not easy! It’s difficult to get it perfect, if not impossible. It’s easier with help. It looks different each time. You need the right kind of paper (resources). Some are more difficult to make than others. It takes time! You need the directions.

15. Transition

16. Exploring Our Values / Beliefs And Assumptions Practices will not change until beliefs, values and skills change. National Transition Network, 1997

17. Clarifying our BeliefsandArticulating our Assumptionsregarding the transition from School to Adult Life Why is this a critical first step for engaging in planning and provision of support for youth with significant and complex disabilities?

18. Beliefs and Assumptions • regarding the • Transition and Post-School Lives of Youth with Disabilities • All students should leave school equipped to be successful, interdependent adults. • Adult Life is more than work and care. • All students can and have the right to become adult citizens of their community. • Each student’s voice must guide the transition process. • Families are a critical component to the planning and success of any youth’s transition from school to adult life. • Each family has its own unique culture that must be respected as factor in the planning and support of youth in transition. • Quality of life is defined by the individual.

19. Assumptions related to competency require attention to the developing of skills in self efficacy or self-determination

20. BALANCE CONTROL Opportunities / Choices Honor Preferences Acknowledge Communication

21. Self Determination “An Underlying Concept for Successful Transition” ● The inherent right of individuals to assume control of and make choices that have an impact on their lives ● The right to assume control of one’s life ● Refers to personal attitudes and abilities that facilitate an individual’s identification and pursuit of goals. The expression of self determination is reflected in personal attitudes of empowerment, active participation in decision making, and self-directed action to achieve personally valued goals Powers et. Al., 1996

22. What factors can influence a child’s growth in self-determination? Balancing Risk with Challenge Building Competencies and Strengths Increasing Opportunities for Personal Mastery and Independence Providing Positive and High Expectations Assuring meaningful Roles within the Home, School and Community Support and Encourage Friendships Building

23. How do your young adults self-determine? Skills Linked to Self-Determination Choice Making Decision Making Problem Solving Goal Setting /Attainment Self-Awareness

24. What are the challenges to Self-Determination for Students and Young Adults with Complex and Significant Disabilities ? □ Communication □ Access to the Environment □ Freedom and Independent Control

26. Transition Mandates Changes and Implications of the Recently REAUTHORIZED IDEA2004 regarding Transition from School to Adult Life for Youth with Severe Disabilities

27. Transition Mandates (1)(A) to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living.

28. Transition Mandates PLANNING The 2004 reauthorized IDEA( H.R 2004) requires EA required transition planning as part of the IEP process for all students with disabilities who are 16 and older. For each student with a disability (VII) beginning not later than the first IEP to be in effect when the child is 16, and updated annually, thereafter- (aa) Appropriate measurable postsecondary goals based up age appropriate transition assessments related to training, education, employment and, where appropriate independent living skills; (bb) the transition services (including courses of study) needed to assist the child in reaching those goals .

29. Transition Mandates Definition of Transition Services (34) The term transition services means a “coordinated set of activities for a child with a disability that – (A) is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child’s movement from school to post-school activities, including pose-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation; (B) is based on the individual child’s needs, taking into account the child’s strengths, preferences, and interests; and (C) includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and when appropriate, acquisition of daily living skills and functional vocation evaluation.

30. Making Sense of the Mandates Transition Services Course of Study Coordinated Set of Activities Results-Oriented Process and then assessing for transition with the mandates and values in mind

31. Transition Assessment What is the purpose of Assessment for Transition from School to Adult Life? ► To determine a student’s preferences and interests ► To determine long term post-school outcomes: Living, Work; Community Participation ► To determine the support and services needed ► To identify the priorities of the family Other Assessment Objective ?

32. What do you Assess ? • Preferences & Interest of the Youth • Strengths & Talents • Communication & Social Skills • Assistive Technology • Past Experiences • Health and Physical Limitations • Support Needs • Home, School and Community FUTURE Environments & Opportunities • Functional Skills • Barriers What Else ? ? ? ?

33. How do you put this all together for youth with complex / significant disabilities? Let’s try to go through the process

35. Who is Helen? A 16 year old young woman who uses tactile American Sign Language; Braille literacy on grade level (High School); enjoys quiet nights at home reading; talented speaker; demonstrates a thirst for knowledge.

36. What are Helen’s Support Needs ? Uses an intervenor (Annie); has relatively good O& M Skills with the use of a cane and sighted guide; has excellent personal care skills but has become accustom to people assisting her (so has a tendency toward prompt dependence; reads and writes in Braille; has a very supportive family; needs some level of assistance in skills of daily living especially in the dining room.

37. What is Helen’s Educational and Service History? Has had a one-to-one teacher trained in the education of children with deafblindness; educated in a variety of natural settings; all related services were provided by her teacher; a highly academic curriculum supported by a functional activities based instructional program

38. Comprehensive Transition Protocol Identify Post-School Outcomes Transition Services Course of Study Strengths Preferences & Interest Goals and Objectives Student Instructional & Curriculum Needs Petroff, 2003

39. STEP 1 Comprehensive Transition Protocol Identify Post-School Outcomes Transition Services □ Interview / Survey Student □ Conduct Career Inventory □ Conduct a PATH Course of Study Strengths, Preferences & Interest □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ MAPs involving Parents/Annie □ Develop Video Resume □ Portfolio of Accomplishments to date Goals and Objectives Student Instructional & Curriculum Needs □ _________________ □ _________________ □ _________________ □ Direct Assessment of Academic □ Battery of Situational Assessment □ Related Services Assessments Petroff, 2003

40. STEP 1 Comprehensive Transition Protocol Identify Post-School Outcomes Needed Transition Services □ Get Accepted to an Ivy College □ Develop a Vaudeville Act □ Develop a Social Network Transition Service Needs Strengths Preferences & Interest □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ Great Literary Skills □ People Person □ Well Spoken Goals and Objectives Student Instructional & Curriculum Needs □ _________________ □ _________________ □ _________________ □ Alternate Format Materials □ One-to-One Instruction / Intervenor □ O&M Services and other Petroff, 2003

41. STEP II Comprehensive Transition Protocol Identify Post-School Outcomes Needed Transition Services □ _________________ □ _________________ □ _________________ Transition Service Needs Skills, Abilities, & Talents Preferences & Interest □ College Prep Course □ Technical Consult from DVR □ Independent Living Training □ Begin Exploring Colleges □ Enroll in SAT Prep Course □ Explore the Demands of Independent College Living □ _________________ □ _________________ □ _________________ Goals and Objectives Student Instructional & Curriculum Needs The Above are Infused with a IEP that represents a Multi- Year Plan leading toward the Identified Post-School Outcomes □ _________________ □ _________________ □ _________________ Petroff, 2003

42. Comprehensive Transition Protocol Identify Post-School Outcomes Transition Services □ _________________ □ _________________ □ _________________ Course of Study Strengths Preferences & Interest □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ Goals and Objectives Student Instructional & Curriculum Needs □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ □ _________________ Petroff, 2003

44. How do I know? What do we look for?