Jane ORegan Kleinert, Ph'D', CCC

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"Yes, I CAN" Communication Supports for
Self-Advocacy and Choice-Making for Younger
Students with Disabilities
Jane ORegan Kleinert, Ph.D., CCC Beth Harrison,
Ph.D. 2008 ASHA Convention Chicago, November 22,
2008
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What is KYAP ?

• The Kentucky Youth Advocacy Project is a grant
  funded by the Kentucky Council on Developmental
  Disabilities and awarded to the University of
  Kentucky College of Health Sciences-Division of
  Communication Sciences and Disorders
• Designed to provide students aged 7-21 years with
  individualized and group activities to support
  the early development of self-advocacy skills
• Priority Focusing on students with disabilities
  
• In underserved areas of Kentucky and
• Students with significant communication
  difficulties

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Successful Outcomes for Persons with Disabilities
Are Characterized by

• What does the research show?

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Successful Outcomes for Persons with Disabilities
Are Characterized by

• Functional Skills
• Strong Social Skills
• Verbal Skills
• Adequate Communication Skills
• High Level of Self-Determination
• (Heward, 2003 Kleinert et al., 2002 Wehmeyer
  Schwarz, 1998)

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What is Self-Determination?

• The ability to control the basic decisions and
  directions of ones life
• The freedom to have choices and personally make
  decisions is cherished by people in all stages of
  life, yet it is a freedom that is typically
  denied to persons with disabilities.(Falvey,
  l995, p. 229)

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Self-Determination

• is especially important for students and youth
  with significant disabilities because for most of
  these individuals, their choices have not been
  made by themselves, but by parents, guardians,
  teachers, and service providers.
• is not just a matter of lack of opportunity.
• (Kleinert Kearns, 2001)

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Unfortunately

• Many students with significant disabilities do
  not have the skills and behaviors to assume that
  control over their lives and few educators and
  service providers know how to teach the
  components of self-determination.
• (Kleinert Kearns, 2001)
• Tape

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Is Anyone Listening to Me?
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• THE ABILITY TO COMMUNICATE CLEARLY Helps to
  Foster DEVELOPMENT OF A SELF-DETERMINED LIFE
• (Light, 2000)

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The Focus of Self-Determination

• The focus of self-determination is on a persons
  ability to make choices about his/her life, to
  select goals, and to develop the initiative to go
  after these goals.

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Skills of Self-Determination

• Choice-making
• Self-initiation
• Self-monitoring
• Self-reinforcement
• Goal setting
• Asking questions
• Planning ones own schedule

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• Self-regulation
• Persistence
• Self-awareness
• (Agran et al., 2003
• Kleinert et al., 2001
• Wehmeyer, 1998)

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These Are Elements ofSELF-ADVOCACY

• Choice making
• Self monitoring
• Goal setting/selection
• Planning
• Problem solving
• Persistence

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Self Advocacy is

• the ability to let others know our wants and
  needs
• selecting personal goals,
• planning to meet our goals,
• monitoring our progress

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How Is Self-Determination Fostered?

• Opportunities for choice
• Functional activities
• Experiencing success
• Self-advocacy
• Making decisions re their schedules at school,
  at home, work, leisure, in therapies, etc..
• (Proponents include Wehmeyer, Brown, Field,
  Falvey, Kleinert and others)

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Skills that contribute to successful outcomes for
persons with disabilities include

• Strong communication skills
• Self-determination
• Foster
• Self-Advocacy

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Self-Advocacy

• IMPORTANT AT ALL AGES
• Begins with the ability to make choices
• Express preferences and dislikes
• Realistically identify our own strengths and
  needs
• Identify Barriers
• Problem solve
• Self-evaluate our progress
• Revise our plans

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EARLY Development of Self-Advocacy for students
with disabilities

• Is the goal of the

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What Are the Unique Goals of KYAP

• STARTING YOUNG To provide INDIVIDUALIZED AND
  GROUP activities in self-advocacy to 200 children
  aged 7-21 with developmental disabilities over a
  three year period in Kentucky,
• COLABORATING with SELF ADVOCATES with
  developmental disabilities as mentors to young
  students Self Advocates for Freedom Eastern KY
  People Who Care Commission for Children with
  Special Health Care Needs.
• Emphasize COMMUNICATION SKILLS and including
  teachers AND SLPs
• UTILIZING OF STUDENT-DIRECTED LEARNING to provide
  individualized programming for students to learn
  self-advocacy and self-determination skills
  (Agran, King-Sears, Wehmeyer, Copeland, 2003),
  specifically using an adaptation of the
  Self-Determined Learning Model of Instruction.
• Emphasizing self advocacy and self-direction as
  components of the broader highly valued personal
  characteristic of SELF-DETERMINATION, which has
  been shown to be related to a positive quality of
  life for persons who have developmental
  disabilities (Wehmeyer Schalock, 2001).

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Why a Youth Advocacy Project?

• Self-advocacy and self-determination skills
  include the abilities to select personal goals,
  plan steps toward goals and assess ones progress,
  make choices, and self-monitor and self-evaluate
  ones behaviors.
• Such abilities have been show to improve both an
  individuals quality of life and post-school
  outcomes.
• Children with disabilities often lack the
  opportunity to participate in the decisions which
  affect them on a daily basis and also later life
  decisions.
• By providing experience in self-advocacy at an
  early age, we hope to see these young individuals
  participate more fully in all aspects of life as
  they transition to the community.

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KYAP Targets

• To provide individualized and group programming
  in self-advocacy to 200 children aged 8-18 with
  developmental disabilities over a three year
  period in the Kentucky, by
• Providing teachers and SLPs training in use of
  the Self-Determined Learning Model of
  Instruction, a researched model of student
  instruction in goal selection and planning,
  (Mithaug, D., Wehmeyer, M.L., Agran, M., Martin,
  J., Palmer, S., 1998).
• Providing students with disabilities access to
  mentors in self-advocacy, who also have a
  disability.

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• Demonstrating that children with more significant
  disabilities and students who have or need
  augmentative communication can be successful
  self-advocates.
• Developing and disseminating self-advocacy
  training materials for use by schools, children
  and families across Kentucky. This is done via
  trainings and development of a website on which
  training materials and student work samples can
  be displayed.

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Why Include SLPs
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The Issues

• 80-90 of school-based SLPs report treating
  students with Developmental Disabilities (DD) in
  their caseloads (ASHA, 2008 Kleinert, 2004).
• Best practice for students with DD includes an
  emphasis on Self-Determination (SD), that is

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Self-Determination/Self-Advocacy

• a combination of skills, knowledge, and beliefs
  that enable a person to engage in goal directed,
  self-regulated, autonomous behavior (Council for
  Exceptional Children position paper, 1998)
• has been recognized as a critical life outcome,
  especially for individuals with developmental
  disabilities who are at risk for being denied
  such opportunities (Bambara Koger, l996 Brown,
  Gothelf, Guess, Lehr, l998 Field, Martin,
  Miller, Ward Wehmeyer, 1998a Holub, Lamb,
  Bang, l998 Martin Marshall, 1995 Ryan Deci,
  2000 Wehmeyer Schalock, 2001 Wehmeyer
  Schwartz, 1998).
• S-D Skills include
• Choice making
• Planning
• Selecting goals
• Expressing preferences and dislikes
• Self-evaluation/self-monitoring
• Self-assertion/self-advocacy
• ALL COMMUNICATION RELATED ACTIVITIES AND SKILLS

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However

• LESS THAT HALF of SLPs responding to a survey re
  SLP knowledge and involvement in SD programming
  for students with DD indicated
• familiarity with the concept of SD for students
  with DD or
• Involvement in program development for SD for
  students with DD (Kleinert, 2004).

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Communication Disorders and Self-Determination

• Currently, there is very little contribution to
  literature of self-determination by Communication
  Disorders. Only a few examples exist (Light
  Gulens, 2000 Kleinert, 2004 Kleinert, et al.,
  2006).
• people cannot be fully self-determined without
  being competent communicators and conversely
  people cannot become competent communicators
  without being self-determined (Light and Gulens,
  2000)
• The SLPs role is to help maximize a childs
  ability to communication his or her preferences.
  Consequently, the SLP may play a critical role in
  the effort to maximize each childs potential for
  self-determination (Wilkinson, 2006 ASHA Div.1
  Perspectives)

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Self-Determination/Self-Advocacy

• Increased focus on SD in Special Education
• Limited contributions to this literature by CD
• Limited knowledge and participation in such
  programming by SLPs
• While components of Self-Advocacy are highly
  reflective of SLP focus
• Including

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• Choice-making
• Problem solving (Executive functions)
• Expressing personal wants and needs
• Initiating to others

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So, How Does All This Work The Sequence
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Program Elements
What 11 goal selection and training in
self-advocacy and self-direction using the
Self-Determined Learning Model of
Instruction When During the school year, after
I CAN DAY. Who students with disabilities and
classroom teachers/SLPs Who Else Regular
technical assistance from project staff, mentors,
Coop. Consultants
What Teacher and SLP training on the
Self-Determined Learning Model of
Instruction When At the beginning of the school
year Who Training will be conducted by the
project PI and Co-PI
What I CAN DAY When During the first full month
of the school year. Who Selected students with
developmental disabilities who will participate
in the self-advocacy training program Who Else
Mentors, project staff, teachers/ SLPS, Coop
Consultants
What I DID IT DAY When Last month of the school
year Who Students with developmental
disabilities and their teachers and/or SLPs who
participated in the self-advocacy program. Who
Else Project staff, Mentors, Invited family and
friends

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Step 1 Recruitment of Participants
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• Recruit School Districts to Participate
• Recruit Children Not in the Public Schools to
  Participate (private schools, home schools, other
  settings)
• Meet with DOSE (Directors of Special Education
  and Provide Information to Share with Teachers,
  SLPs, Students, Families
• Find children with disabilities NOT in the
  public schools ALSO
• 5. Work with state and community agencies to
  locate children and families who would like to
  participate (VR, CCSHCN, etc.)

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Recruit Mentors

• Self-Advocates for Freedom
• Eastern Kentucky People Who Care
• Commission for Children with Special Health Care
  Needs
• Office of Vocational Rehabilitation
• Schools

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Roles and Responsibilitiesfor KYAP

• Provide training materials
• Provide training in the Self Directed Model of
  Instruction
• Provide technical assistance to project
  participants
• Develop a KYAP Implementation Package
• Develop KYAP web site with training materials,
  protocols, student materials
• Provide reimbursement for substitute teacher
  expenses
• Reimburse mileage, lodging, meals and other costs
  associated with travel to training events
  (including school bus travel)

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Students will

• Student participants will attend two workshops
• 1). The I Can Do It Day of training
• 2). the I Did It Day celebration and present
  their work, near the end of the 2006-2007 and
  2007-2008 school year.
• 3). Work with school personnel and/family to
  select, plan and work toward a personal goal.

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Step 2 TRAINING

• Begin working directly with teachers, slps and
  other interested school personnel along with
  students and families in the following sequence

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Step 2 Trainings for School /Adult Personnel

• Who Teachers, SLPs, OT, Councilors,
  Administrators
• How Large Group Meetings in centralized
  locations at the beginning of the school year OR
• Small group and individualized meetings with
  interested personnel during the school year

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Training for Teachers, SLPs etc.

• Stresses the importance of EARLY self-advocacy
  experiences
• Stresses the importance of self-determination
  for individuals with developmental disabilities
• Stresses the importance of communication skills
  to support self-advocacy
• Teaches how to use the SDLMI

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Self-Determined Learning Model of Instruction

• Developed through a Field-Initiated Project
  awarded to The Arc of the United States with
• Michael Wehmeyer, Ph.D. as Principal Investigator
• Susan Palmer, Ph.D. as Project Director
• Martin Agran, Ph.D., Utah State University,
  Consultant
• Dennis Mithaug, Ph.D., Columbia University
  Teachers College, Consultant
• James Martin, Ph.D., University of Colorado at
  Colorado Springs, Consultant
• Retrieved from the World Wide Web on 8/23/06
  from
• http//www.ed.uiuc.edu/sped/tri/selfdeterminedmod
  el.htm

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What does this model do?Provision of a SEQUENCED
process to teaching self-advocacy skills

• Help students identify what THEY CAN ALREADY DO
• Help students think about WHAT THEY WANT TO DO
• Help students PICK A GOAL
• Help students PLAN how to achieve their goal
• Identify Barriers to achieving goal
• Help students EVALUATE THEIR PROGRESS

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KYAP Materials
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KYAP Materials

• Copy of Student-Directed Learning Teachers
  Guides to Inclusive Practices (Agran, King-Sears,
  Wehmeyer, Copeland, 2003)
• KYAP Model Implementation Manual
• Examples or models of each stage of the SDLMI for
  Students of varying levels of disability
• Ideas and examples of self-evaluation logs,
  charts, etc. to record students progress
• Data sheets to monitor students progress for the
  project.
• Student workbooks for younger children
• and for teens
• 7. Website for dissemination of materials

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Students Help Develop Age-Appropriate Materials
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STEP 3

• I CAN DAY !!!

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I CAN DAY !

• NOVEMBER 8, 2006
• LONDON, KY

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Step 3 I CAN DAY Students Begin the SDLMI
Process
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1000 Greet and Seat 1015 Lets All Meet
1030 Who Else is Here?? KYAP staff is
introduced Our Special Guests KYAP Mentors
introduce themselves 1045 WHY ARE WE
HERE? Talk about choices, goals, plans, etc.
Students tell what each word means, give
examples of when they make a choice at school,
home, free time 1100 Talking with our Mentors
Each student can pick a mentor and ask a question
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Mentor Questions

• What does being a self-advocate mean to you?
• How did you learn to be a self-advocate?
• When do you think you started advocating for
  yourself? Why?
• What is hard about being a self-advocate? What
  barriers did you face?
• What advise would you give to students in terms
  of learning to self-advocate?

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Mentors Teach Us How
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1130 What is Self-Advocacy Who YOU. Lets
take YOUR picture What Lets look at
your workbook and see whats in it How We will
work on the first parts today 1200 Lunch 1245
All about ME We will answer each of the
questions in the Beginning of your
workbook and tell our answers 115 If we have
time, we will start picking goals 145 Sharing
our work Each student shares what they did today
and what they will do back at school 200
Goodbye and GOOD LUCK!!
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Introducing Self-AdvocacyVocabulary

• Choice
• Goals
• Planning
• Barriers
• Progress

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Language Targets ReinforcedVocabulary,
Executive Functions, Literacy, Conversation
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Using the SDLMI

• Our students use a simple
• workbook for this process

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Picking a Goal

• How is this done?
• Each student has a workbook with the following
  steps

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ALL ABOUT ME

• What I do well?
• What I like?
• What I need help with?
• What I dont like?
• Who supports me ?
• What would I like to learn to do?

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Phase 1 Setting a Goal

• Student Problem to Solve
• Determining a goal
• Student Questions
• What do I want to learn?
• What do I know about it now?
• What must change for me to learn what I dont
  know?
• What can I do to make this happen?
• (Agran, M., King-Sears, M., Wehmeyer, M.,
  Copeland, S., 2003)

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Selecting our Goals!
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Phase 2 Taking Action

• Student Problem to Solve
• Developing a plan to achieve the goal
• Student Questions
• What can I do to learn what I dont now?
• What could keep me from taking action?
• What can I do to remove these barriers?
• When will I take action?
• (Agran, M., King-Sears, M., Wehmeyer, M.,
  Copeland, S., 2003)

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Taking Action Executive Functions
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Phase 3 Adjusting the Goal or Plan

• Student problem to solve
• Evaluating what has been learned
• Student Questions
• What actions have I taken?
• What barriers have been removed?
• What has changed about what I dont know?
• Do I know what I want to know?
• (Agran, M., King-Sears, M., Wehmeyer, M.,
  Copeland, S., 2003)

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Meet a Self-Advocate
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Phase 1 Setting a Goal

• Student Problem to Solve
• Determining a goal
• Student Questions
• What do I want to learn? To dance
• What do I know about it now? I have never danced
• What must change for me to learn what I dont
  know? How to dance, how to take lessons
• What can I do to make this happen? Talk to my mom
  and dad, find out about lessons
• (Agran, M., King-Sears, M., Wehmeyer, M.,
  Copeland, S., 2003)

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SELECTING A GOAL
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Phase 2 Taking Action

• Student Problem to Solve
• Developing a plan to achieve the goal
• Student Questions
• What can I do to learn what I dont now? Find out
  about dance lessons
• What could keep me from taking action? I am
  afraid to ask, What about money, Will my dad let
  me, I just cant
• What can I do to remove these barriers?
• Have my speech therapist help me ask, talk to my
  mom and dad, find out how much things cost, just
  think about it
• When will I take action? When I get back to
  school

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Plan of Action

• Talk to Dad (Dad says fine!)
• Talk to the dance teacher (She donated the
  lessons!)
• Get my dance clothes and costume (made and
  application to KYAP- I got it!)
• Start dance class (Im a little scared)

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I DID IT!!!!! I presented my progress at I DID
IT DAY and I was in the dance recital in
June!! KYAP even sent me flowers!! I am very
proud of myself. My mom says I am a different
person!
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I DID IT !!
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What Communication/IEP Targets Were Also
Practiced with this Student

• Literacy targets
• Math targets
• Choice making
• Conversational speech use
• Problem solving/executive functions
• Social Interactions

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KYAP Goals In Progress

• Elementary
• Work on buying something at the store on my own
• Have my birthday party at home with my friends
  coming to my house
• Use picture exchange at home and school
• Let my teacher/parent know so I can go somewhere
  to calm down
• Learn to spell better and I get better at
  basketball
• Be able to look up information in the internet
  pertaining to my new school
• Learn how to climb the monkey bars (Im tired of
  being on the ground)

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Middle School

• Playing guitar
• Learning to read better
• Use a communication board to talk
• Learn how to dance
• with people
• Be a cheerleader

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High School

• Initiate conversations
• Start researching what I may want to do after
  high school
• Lose 10 pounds
• Be a wrestling coach
• Find out if I can be a manager for the wrestling
  team and find out about a
• summer job
• Work with the basketball team
• Pass my drivers test
• Go on some kind of post-secondary
  education/training check out what Carl Perkins
  has to offer via the internet
• Find out about activities for me in the Summer
• Work either in veterinary science, pet grooming,
  or X-ray technology after high school
• Be a WWE wrestler
• Become a computer game designer
• Be a cross country truck driver
• Go to Carl Perkins for training after graduation
• Do my homework independently
• Go to the games on the same bus as the team
• Tell people what I want
• Have a way to talk with my friends at a
  basketball game

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Step 4 Technical Assistance

• Communication Systems
• Funding Issues
• Realistic Goals Goal Attainment Scaling
• Data Collection
• Program Suggestions
• Other Barriers
• Feedback from students and adults

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Technical Assistance
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Classroom Technical Assistance
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Goal Attainment Scaling

• Here are the steps you can use for this process
• Student selects his/her goal (phases 1 and 2 of
  the SDLMI).
• Teacher and student discuss what would happen if
  the student goes beyond the target.
• Teacher and student define what would happen if
  the student does not quite reach the target (two
  steps below the target.)

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• How does this look?
• 2 ______________________________________________
  _______________
• 1 _______________________________________________
  ______________
• MY GOAL __________________________________________
  _____________
• - 1 ______________________________________________
  ________________
• - 2 ______________________________________________
  ________________
• Lets say our student wants to lose 10 pounds.
  This is how the goal attainment format would look.

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• 2 Lose 20 pounds.
• 1 Lose 15 pounds
• Goal Lose 10 pounds
• - 1 Lose 5 pounds
• -2 Lose less than 5 pounds

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Step 5 Data Collection

• Data taken weekly on students current phase
• Student self-evaluates progress on a system
  designed specifically for him/her
• Data on student progress sent electronically to
  project staff once a month

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Goal I will participate more in my next IEP
meeting by sharing information about my likes and
dislikes and future plans.
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Keeping Track of My Progress
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• Step 6 Kentucky Youth Advocacy Project
• I DID IT DAY!
• The purpose of the I DID IT DAY is to provide a
  forum for students to share the progress they
  have made toward their goal.
• Each student will have approximately 6 minutes
  for their presentation. Each student will begin
  by sharing the goal they picked and then
  presenting information about the progress they
  have made toward the goal.

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I DID IT DAY

• Kentucky Youth Advocacy Project
• Morning I DID IT!
• 1000 1015 Welcome, Introductions, Overview
  of morning
• (Snacks
  and drinks available for students)
• 1015 1030 Mentor Panel
• 1030 1115 Student presentations
• 1115 1130 Whats next?
• Afternoon I DID IT!
• 100 115 Welcome, Introductions, Overview of
  day
• (Snacks and drinks available for students)
• 115 130 Mentor Panel
• 130 215 Student presentations
• 215 230 Whats next?

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Student Presentations

• Students might use
• pictures, drawings, storyboards, portfolios,
  school diary and/or video to portray their work
  toward their goal
• student can select samples of his/her work which
  focus on achieving their goal to show at I DID IT
  DAY.
• a slide show which shows the steps she/he went
  through (is going through) to achieve their goal.
  
• students can use their My Goal Book as a resource
  in developing slide content.

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More Ideas

• Student can develop a poster which shows the goal
  they chose, the actions they have taken, and the
  progress they have made.
• Students can share any kind of self-monitoring
  system they may be using to keep track of their
  own progress toward the goal.
• students unable to independently develop or show
  a slide show, may choose the slide template and
  may click a mouse on a computer to move from one
  slide to the next slide in a Microsoft
  PowerPoint presentation, telling what each
  slide says, or the slide may have their voice
  on the slide itself.

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Sample Student Script Hello, my name is
______________________________and I am in the
_________grade. Some of the things I really like
to do are________________________________________
__________________________________ Some things I
dont like to do are ____________________________
__________________________________________________
_________________________________________________
_____________________________ The goal I chose
was______________________________________________
______________ I started working on the goal on
______________(date). My action plan
included_________________________________________
________________ The actions I have taken so
far are__________________________________________
_______ The easiest part of working toward my
goal has been ___________________________________
___________________________________________ The
hardest part of working toward my goal has
been I have learned this about my
goal_____________________________________________
_____ ____________________________________________
_____________________________
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An Important Note!!!

• If the student did not complete his/her goal,
  this is NOT a problem. He/she can just tell where
  they are in the process and what they will do
  next.
• This is part of the process!

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I DID IT DAY
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I DID IT ALMOST
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CHANGES WE HAVE SEEN !
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What was accomplished in2006- 2008?

• We worked with 230 students from the across KY
  from 15 different schools from
• We trained over 35 teachers, SLPs, OT and
  Administrators.
• About 20 parents participated in the I CAN/I DID
  IT days
• 8 Mentors participated
• We had students from schools, home schools, and
  in a hospital setting

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• Pre/Post Measures of Self-Determination
• Student progress data on 230 students
• Collected student, teacher, etc. satisfaction
  information and suggestions
• Our data showed strong satisfaction from over
  half of the students and teachers wanting to
  continues after year one and over 80 actually
  continuing after year 2
• Parents and teachers noted positive changes with
  their students.
• Developed and Disseminated materials
• Extensive materials were developed and are
  available on the website

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Step 7 The Website

• www.kyap.org
• Description of the project
• Materials available
• Resources
• Links
• Examples of student work, videos, etc.
• Contact info

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Contact Us

• Jane Kleinert jklei2_at_uky.edu
• Beth Harrison bharris_at_uky.edu
• Jane Kleinert, Ph.D.
• Kentucky Youth Advocacy Project
• 124 N CTW Bldg.
• University of Kentucky
• 900 S. Limestone St.
• Lexington, KY 40536-0200