Interdisciplinary, InteragencyCollaboration for Transition

From Adolescence to Adulthood

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

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

Transition Listening Session

Sue SwensonDeputy Assistant Secretary – OSERS

US Department of Education

Tuesday, December 4 3:00-4:15Gunston East

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

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

Why

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

process of transition

Why

Insufficient understanding of the role of culture in an individual or family’s

concept or approach to transition

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

Why

Neglecting to specifically explore how transition in the different realms

could/should be linked for maximizing success

Self Determined Life

Youth and FamilyCulture

Perspectives

EducationHealth

EmploymentPostsecondaryAdult Supports

Providers

Outcomes

CompetenceHealthy LifePlace to LivePaying Job

SocialNetworkCommunity

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

Perspectives on Transition

Youth and Families

“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

“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

“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

Two Videos

The Good and the Bad of Transition

Kristen

Michael

Youth and Family Practices

• Good, complete, understandable information

• Focused transition planning

• Person-centered transition planning

• Family/Community Support Navigators

• Self-Determination Curriculum

Healthcare Transition

Ilka Riddle

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

Health Care Transition is:

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

AAP, AAFP, ACP, 2002

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

Best Practice: Learning Collaboratives Pilots

• Got Transition Learning Collaboratives (www.gottransition.org)

• Transition Collaborations of Pediatric and Adult Practices/Systems

Shared Management Approach to Transition

• Team/Partnership Approach

• Active Participation

• Empowerment

• Self-Determination

Stage Professional ParentChild/

Young Adult

1 (Child6-11)

Lead responsibility

Participates & Provides care

Receives care

2(Young

Adolescent12-14)

Partner gives

guidance & support

Partner guides & manages

Participates in care & decision making

3(Adolescent

15-17)Consultant

Supervisorshared decision making

Managershared

decision making

4(Young Adult

18+)Resource Consultant

Lead manages & supervises

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

Considerations

• People involved:

• Youth/Young Adults

• Family Members/Guardians

• Pediatric care provider & specialists

• Adult care provider & specialists

• (Others)

Considerations

• Systems involved:

• Pediatric health care system

• Adult health care system

• (Others (e.g. service system, education system, etc.))

Barriers/Issues: Youth/Young Adult

• Little involvement in transition process

• Little knowledge about condition, health, health issues, health management

• Late start to transition planning

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

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

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

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

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

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

Strategies: Adult Providers

• Engage in transition process

• Learn from young adult & family members

• Learn about congenital & childhood onset medical conditions

• Communicate with pediatric providers

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.

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

Recommendations

• Increased evidence-base for successful health care transition:

• Health outcomes data

Resources

• Got Transition National Health Care Transition Center www.gottransition.org

• Florida HATS www.floridahats.org

Transition to College and Careers

Margo Vreeburg Izzo, PhDProgram Director of Transition

Services

Ohio State University Nisonger Center

Izzo.1@osu.edu

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

44

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)

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

Transition RequiresInterdisciplinary

ApproachesSpecial 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.

Transition RequiresInterdisciplinary

ApproachesSpecial educators, OT & VR provide:

• Transition assessments

• Assistive technology assessment/training

• Worksite analysis & job match

• Job development & placement

• Worksite Jigs, Ergonomic assessments, etc.

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

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

53

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

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

CCS and Transition Planning

EnvisionIT ActivitiesStudents 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.

Transition Knowledge (TK) Gains

0

2

4

6

8

10

12

14

16

TK PRE TK POST

EXPCONT

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

56

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

RecommendationRecommendation

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/LessonPlanLibrary/1_and_8.pdf

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

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.

State Success in Integrated Employment

National Survey of State IDD Agency Day and Employment Services 2010

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

Who Should Go To College?

• http://www.youtube.com/watch?feature=player_embedded&v=auIYOb_rptQ

• Over 200 colleges in over 30 states are enrolling students with IDD

• See www.thinkcollege.net for more info

OSU’s TOPS Model

Interdisciplinary TeamSpecial Educators, Occupational Therapists, Physical Therapists, Rehab Counselors, Speech Language Therapists, Social Workers, Assistive Tech. Specialist

Pilot Sites

Ohio State University University of Toledo Three Replication Sites

Services Planned Through

Transition Assessment Person-Centered Planning Academic Advising

TOPS: Student Experiences

Inclusive Postsecondary Campus Experience

Self-Determination

Health, Wellness

Independent Living skills

Enroll/Audit College Courses

Project SEARCH Internships

Residential Campus

Experiences

Individualized Supports

Peer Support Mentoring Family Support Educational/Job

Coaching

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.

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/

66

Dental Clinic Assistant

Mentoring on OSU’s Campus

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

Transition: A Bridge to…Inclusion in Society

Community Living

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

A Place to Live

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

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

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%

Getting There

Getting There

Transportation Resources

http://www.projectaction.org/Initiatives/YouthTransportation.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.

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%

Making Decisions

Making Decisions

Summary

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

Interagency Collaboration and Coordination Interagency Collaboration

and Coordination

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)

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

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

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.

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

Chancellor’s 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

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 agency’s commitment to

improve outcomes for youth with developmental disabilities

• Built a sense of purpose, hopefulness and commitment to the work 

Step 1: Map Each Agency’s Initiatives that Support Students with ID and ASD

Raynor, O., Campisi, C & Francis, W. (2012), Pathways to PSE for Students with ID & Autism

Raynor et al., 2012

Step 2: Create an Interagency Matrix

( Raynor et al, 2012)

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?

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?

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 agency’s 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?

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

Pathways to PSE for Students with ID and Autism: An

Interagency Guide

23 +

16-22

6-15

Birth - 5

Knowledge and Skills Required

Information Provided to or by Individuals with ID & Families

Primary Actions

Primary Role

Agency Plans

Youth Ages 6-15

Raynor et al., 2012

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.

Group Exercise

Question to Consider:If the system worked well, what could/should happen to support this student’s 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?

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?

Discussion

Questions