Interdisciplinary, Interagency Collaboration for Transition From Adolescence to Adulthood

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Interdisciplinary, InteragencyCollaboration for
Transition From Adolescence to Adulthood
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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

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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

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• Transition Listening Session
• Sue Swenson
• Deputy Assistant Secretary OSERS
• US Department of Education
• Tuesday, December 4 300-415
• Gunston East

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(No Transcript)
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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

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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

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Why

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

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Why

• Insufficient understanding of the role of culture
  in an individual or familys
• concept or approach to transition

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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

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Why

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

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

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• Perspectives on Transition

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• Youth and Families

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• 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

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• 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 supportwould
  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

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• 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

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Two Videos

• The Good and the Bad of Transition
• Kristen
• Michael

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Youth and Family Practices

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

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• Healthcare Transition
• Ilka Riddle

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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
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Health Care Transition is

• patient-centered
• flexible
• responsive
• continuous
• comprehensive
• coordinated

AAP, AAFP, ACP, 2002
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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

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Best Practice Learning Collaboratives Pilots

• Got Transition Learning Collaboratives
  (www.gottransition.org)
• Transition Collaborations of Pediatric and Adult
  Practices/Systems

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Shared Management Approach to Transition

• Team/Partnership Approach
• Active Participation
• Empowerment
• Self-Determination

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Stage Professional Parent Child/Young Adult
1 (Child 6-11) Lead responsibility Participates Provides care Receives care
2 (Young Adolescent 12-14) Partner gives guidance support Partner guides manages Participates in care decision making
3 (Adolescent 15-17) Consultant Supervisor shared decision making Manager shared decision making
4 (Young Adult 18) Resource Consultant Lead manages supervises
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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
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Considerations

• People involved
• Youth/Young Adults
• Family Members/Guardians
• Pediatric care provider specialists
• Adult care provider specialists
• (Others)

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Considerations

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

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Barriers/Issues Youth/Young Adult

• Little involvement in transition process
• Little knowledge about condition, health, health
  issues, health management
• Late start to transition planning

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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

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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

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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

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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

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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

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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

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Strategies Adult Providers

• Engage in transition process
• Learn from young adult family members
• Learn about congenital childhood onset medical
  conditions
• Communicate with pediatric providers

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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.

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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

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Recommendations

• Increased evidence-base for successful health
  care transition
• Health outcomes data

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Resources

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

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Transition to College and Careers

• Margo Vreeburg Izzo, PhD
• Program Director of Transition Services
• Ohio State University Nisonger Center
• Izzo.1_at_osu.edu

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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

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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)

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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

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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.

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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.

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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
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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

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Curriculum-based AATA

• Begins in the classroom
• Facilitated by special, general CTE teachers
• Integrate AATA into core courses - ELA
• Examples
• Self-determination assessments/curricula
• EnvisionIT 21st century curriculum

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21st Century Curricula

• EnvisionIT teaches students
• Common Core Standards (CCS)
• Information Tech Literacy
• How to build a self-directed Transition Portfolio
  by matching their interests, abilities, and
  personality to career goals.

Izzo, M.V., Yurick, A, Nagaraja, H.N. Novak,
J.A. (2010). Effects of a 21st century curriculum
on students information technology and
transition skills. Career Development for
Exceptional Individuals, 33(2), 95-105
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Online Assessments

• The VARK Questionnaire 
• http//www.vark-learn.com/english/page.asp
• The Myers-Briggs Personality Test
• http//www.personalitypathways.com/type_inventory.
  html
• The Princeton Review
•  http//princetonreview.com/Careers.aspx

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Common Core Standards (CCS) Transition
Assessment

• Princeton Review After completing the Princeton
  Review students will be able to analyze their
  Interest Color and list 4 occupations to explore
• Core Standard
• Reading Strand Cite strong and thorough textual
  evidence to support analysis of what the text
  says explicitly as well as inferences drawn from
  the text, including determining where the text
  leaves matters uncertain

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CCS and Transition Planning

• EnvisionIT Activities
• Students develop and present their assessment
  results and transition plans
• Students write an essay to describe their
  Princeton Review, personality and VARK assessment
  results
• Common Core Standards (CCS)
• Writing Strand 4 Produce clear and coherent
  writing in which the development, organization,
  and style are appropriate to task, purpose, and
  audience.
• Speaking and Listening Strand 2 5 Integrate
  multiple sources of information presented in
  diverse formats and media.

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Transition Knowledge (TK) Gains

• Conclusion Students in the experimental group
  increased their performance significantly on the
  Transition Knowledge test, as compared to the
  control group.

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Recommendations

• Plan self-directed PCP meetings (IEP, IPE, ISP)
  that include college and career goals
• Raise expectations of service providers parents
  through cross-agency trainings

• Coordinate variety of work experiences from age
  14 (or earlier) until paid employment is achieved

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Recommendation

• Using the Self-Directed IEP
• Research-to-Practice Lesson Plan Starters
• To teach the Self-Directed IEP to students with
  cognitive disabilities http//www.nsttac.org/Lesso
  nPlanLibrary/1_and_8.pdf

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Recommendation

• TEACH SELF-ADVOCACY SKILLS
• Self-advocacy is letting people (professors,
  teachers, employers) know what you need to be
  successful
• Important skill for anybody (especially those
  with disabilities)
• Critical for college and career success

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Recommendations

• Jointly plan with education, rehab and DD
  personnel
• Establish paid integrated job and community
  activities during the last years of school
  services
• Adopt Employment First Policies
• Washington State Legislature passed Jobs by 21
  Partnership Project in 2007

Winsor, Burrterworth Boone, 2011, Intellectual
and Developmental Disabilities, 49, 274-284.
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State Success in Integrated Employment
National Survey of State IDD Agency Day and
Employment Services 2010
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Transition to College

• 27 Projects implement
• Interdisciplinary approaches
• VR and DD coordination
• Enrollment in college classes
• Employment experiences
• Self-determination
• Inclusive age-appropriate settings
• Go to www.ThinkCollege.net

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Who Should Go To College?

• http//www.youtube.com/watch?featureplayer_embedd
  edvauIYOb_rptQ
• Over 200 colleges in over 30 states are enrolling
  students with IDD
• See www.thinkcollege.net for more info

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OSUs TOPS Model
Pilot Sites Pilot Sites Pilot Sites
Ohio State University University of Toledo Three Replication Sites
Interdisciplinary Team Special Educators,
Occupational Therapists, Physical Therapists,
Rehab Counselors, Speech Language Therapists,
Social Workers, Assistive Tech. Specialist
Services Planned Through Services Planned Through Services Planned Through
Transition Assessment Person-Centered Planning Academic Advising
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TOPS Student Experiences
Individualized Supports Individualized Supports Individualized Supports Individualized Supports
Peer Support Mentoring Family Support Educational/Job Coaching
Inclusive Postsecondary Campus Experience
Project SEARCH Internships
Enroll/Audit College Courses
Self-Determination
Health, Wellness Independent Living skills
Residential Campus Experiences
E-Portfolio
Each student exits the program with an e-portfolio that documents academic employment and independent living skills through digital pictures, video and documents.
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Project SEARCH Internships

• Provides internships leading to employment
• Engages employers, community partners, employment
  service providers to meet workforce needs of
  businesses and job seekers
• Youth learn job tasks at no expense to employer
• Goal is EMPLOYMENT!
• For more information http//www.projectsearch.us/

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Dental Clinic Assistant
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Mentoring on OSUs Campus
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Technology Recommendations

• Promotes age appropriate supports
• Navigation around work/college setting
• Organization and schedule prompts
• Provides a means to express interests/skills
  using digital resumes and application materials
• Promotes access to academic and work content
• Sample digital story

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Transition A Bridge toInclusion in Society
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• Community Living

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A Place to Live

• 599,152 (58) people with ID/DD received publicly
  funded supports while living in the home of a
  family member
• 122,088 (12) while living in homes of their own
• 40,967 (4) while living in host family or foster
  care setting
• 276,460 (26) people with ID/DD lived in
  congregate care settings
• 57 of those lived with six or fewer people.
• Most of the growth in services in the last half
  century has been to support people living in
  their own or a family home.
• Family and Individual Needs for Disability
  Supports

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A Place to Live
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A Place to Live

• More than half of the family caregivers thought
  the ideal residential setting was somewhere other
  than these family home
• Family and Individual Needs for Disability
  Supports

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Time in the Community

• 80-90 have participated in community activities
  in the past month
• 50 have exercised
• 50 participated in a religious service, 40
  usually feel lonely
• 30 have ever gone to a self-advocacy meeting
• NCI Consumer Report

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Time with Others

• How Time Was Spent During Three Days
• Individual Only 56.0
• Housemate 21.2
• Agency Staff 19.5
• Day/Workmate 2.4
• Family Community Friend 0.8
• Someone else 0.1
• Community Acquaintance 0.1

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Getting There
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Getting There
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Transportation Resources

• http//www.projectaction.org/Initiatives/YouthTran
  sportation.aspx
• Mobility Options in Your Community. A resource
  mapping tool to help you analyze the accessible
  transportation resources in your community
• Building a Transportation Education Continuum.
  An activity to assist educators to build
  transportation education activities across
  multiple tiers.
• Building Awareness in Accessible Transportation
  Transit Assessment Guide for Students, Families
  and Educators. A tool for students, families, and
  educators who would like to increase their
  understanding of transit systems and how people
  with disabilities use public transportation.

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Initiating Activities

• Who Initiated Activities During Three Days
• Individual 71.6
• Agency Staff 27.4
• Family Community Friend 0.4
• Housemate 0.4
• Someone else 0.1
• Day/Workmate 0.1

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Making Decisions
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Making Decisions
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Summary

• Transition Planning should include
• Where to Live
• How to Get There
• Community Activity
• Leisure and Recreation
• Building a Social Network
• Making Decisions

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Interagency Collaboration and Coordination

• Interagency Collaboration
• and Coordination

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IDEA Transition Planning

• The IEP must include for each student beginning
  at age 16 (or younger, if determined appropriate
  by the IEP team) a statement of needed transition
  services for the student, including, if
  appropriate a statement of interagency
  responsibilities or any needed linkages.
• 34 CFR 300.347(b)(2)

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Transition Barriers for Students and Families

• Accessing needed services
• Navigating adult services
• No coordination amongst multiple agencies
• Lack of sufficient information/awareness
• Insufficient preparation of students for work

US Government Accountability Office (2012),
Better federal coordination could lessen
challenges in the transition from high school
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Interagency Teams

• Three groups typically served by interagency
  teams that vary by setting, roles and
  responsibilities
• (State level agencies) Developing cross-agency
  policies to facilitate transition
• (Regional/local district personnel)Developing
  procedures and guidelines at district level
• (Individual level) Working with individual
  students at IEP meeting or other interagency
  meetings

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The CA Postsecondary Education Interagency
Workgroup

• The Tarjan Center, a University Center for
  Excellence in Developmental Disabilities
  established a workgroup consisting of public
  agencies representing rehabilitation,
  developmental disabilities services, education,
  and community colleges in partnership with the
  State Council on Developmental Disabilities and
  the California Health Incentives Improvement
  Project to address needed changes to improve
  access and participation in postsecondary
  education.

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CA Postsecondary Education Interagency Workgroup
Participants

• John Kimura, Jeff Reil and Susan Mathers,
  California Department of Rehabilitation
• Denyse Curtright, Don Braeger, Rick Ingram,
  Victoria King, Department of Developmental
  Services
• Carol Risley, State Council on Developmental
  Disabilities
• Scott Berenson, Scott Valverde, California
  Community Colleges Chancellors Office
• Dr. Catherine Campisi Rachel Stewart,
  California Health Incentives and Improvement
  Project
• Jill Larson, Dr. Dan Boomer, California
  Department of Education
• Carolyn Nunes, Director of Special Education, San
  Diego Office of Education
• Dr. Olivia Raynor Wilbert Francis, Tarjan
  Center at UCLA
• Dr. Kathleen Rice, Facilitator
• Funder

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How We Created an Engaged and Committed Group

• Developed relationships, mutual understanding and
  trust among diverse partners
• Assessed the environment for change
• Attended to the priorities and context under
  which each agency operated
• Identified assets and barriers and developed an
  actionable plan for our work
• Affirmed individual and agencys commitment to
  improve outcomes for youth with developmental
  disabilities
• Built a sense of purpose, hopefulness and
  commitment to the work 

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Step 1 Map Each Agencys Initiatives that
Support Students with ID and ASD

Raynor, O., Campisi, C Francis, W. (2012),
Pathways to PSE for Students with ID Autism
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Raynor et al., 2012
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(No Transcript)
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Step 2 Create an Interagency Matrix
( Raynor et al, 2012)
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Step 3 Utilize Case Studies to Identify
Supports, Strengths Gaps

• Identified key issues and unmet needs
• Services each agency provided in response to
  student needs
• Regulations policies or local practices that
  created available services, prevented them from
  being provided or could have been employed but
  were not
• Who else needed to be involved?
• If the system worked well, what would have
  happened?

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Example Reflection Discussions

• What are you pleased to see? What is most
  surprising? What is concerning to you?
• What else is possible? For your agency? For
  collaboration between agencies? What is the
  collective meaning of this work for students with
  intellectual disabilities or autism?
• What needs to happen with this information? What
  does this mean for this group
• What needs to happen next? Who else needs to be
  involved? How?

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Step 4 Deepen the Learning of Each Agency About
One Another

• What are the top 3 priorities of your agency?
  What receives the most attention, resources,
  etc.? What is your agency held accountable for?
  Where does this accountability originate (e.g.
  legislation, funding sources)?
• Where does attention to people with ID and ASD in
  pursuing PSE fit in with those priorities and
  accountability expectations?
• Which of your agencys programmatic efforts or
  initiatives are truly working to specifically
  support people with ID and ASD in pursuing PSE?
  How many people with ID and ASD are utilizing
  these services? Are these numbers representative
  of the ID and ASD population? How do you know
  they are successful?
• Looking at the Chart mapping the current
  legislative authority and core functions (Step 1
  above) or the Agency Interaction Matrix (Step 2
  above), what other questions would help you learn
  about the work of this agency?

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Reviewing the Steps

• Deciding to Collaborate The Invitation
• Creating a Shared Understanding of Each of the
  Partners, their Individual Roles and
  Responsibilities
• Creating a Shared Understanding of How Each
  Agency Might Work Together
• Utilize Case Examples to Surface Barriers and
  Unmet Needs
• Deepening Understanding of Systems Barriers
  through Learning Conversations

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Pathways to PSE for Students with ID and Autism
An Interagency Guide
Agency Plans
100
Youth Ages 6-15
Raynor et al., 2012
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Key Learning

• It is critical to start early to lay the
  foundation (life experiences, role models,
  mentors, examples of success) for college and a
  career.
• There is a need to raise expectations across the
  board i.e., parents, self advocates, agencies,
  and schools, that individuals with ID/ASD will
  achieve success in their lives and careers.
• Perceived authority and decision making
  influences the interpretation of policies,
  planning and service provision at a state and
  local level.
• Context is critical. During the course of our
  work, new barriers and opportunities for
  collaboration emerged.

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• Group Exercise

103

• Question to Consider
• If the system worked well, what could/should
  happen to support this students
  self-determination and success?
• What could education do?
• What could the DD system do?
• What could VR do?
• Which agency is responsible for coordinating the
  health care needs? What could they do?
• Who else needed to be involved?

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• Discuss the Following Record Your Best Ideas
• What are the key transition issues?
• In your experience with transition, what needs
  are typically not met? What are the barriers to
  meeting those needs?
• What surprised you about your discussion? What
  was new information?
• What recommendations would you suggest to make
  transition a more collaborative process? What
  strategies would you use?

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• Discussion
• Questions