Bolstering Empowerment and Self-Advocacy for Autistic Youth and

5/29/2012
Bolstering Empowerment and SelfAdvocacy for Autistic Youth and Adults
Scott Michael Robertson, MHCI
Ph.D. Candidate (ABD), Information Sciences and Technology
srobertson@ist.psu.edu | srobertson@autisticadvocacy.org
Vice Chair & Co-Founder, the Autistic Self Advocacy Network
Council Member, Pennsylvania Developmental Disabilities Council
Contacting Scott Michael Robertson
 Email: srobertson@ist.psu.edu, srobertson@autisticadvocacy.org
 Mention the words autism or disabilities in the subject line
 Reference where you met me in the email message’s body
(i.e., the 2012 SPA workshop in Wayne, NJ)
 Can connect via instant messaging [e.g., AOL IM, Yahoo IM,
MSN/Windows Live, Gmail Chat, Skype, Jabber, ICQ, & IRC]
 Generally prefer online over telephone communication
(partly due to auditory comprehension issues)
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Presentation Overview
 Perspective on Autism
 A Social-ecological view of disabilities
 The Autistic self advocacy and neurodiversity movements
 The Autistic Self Advocacy Network (ASAN) and our work
 Developing Self-Advocacy among Youth w/ Disabilities (incl. Autistic
Youth)
Autism 101…
“If a man does not keep pace with his companions, perhaps it is because
he hears a different drummer. Let him step to the music which he hears,
however measured or far away.” —Henry David Thoreau, philosopher
 Autism: Lifelong NeurologicalDevelopmental Disability
 Currently estimated @ 1% of
adults & youth in U.S./worldwide
 Highly Diverse
 Cognitive Profile of Strengths
& Weaknesses in 4 core areas:
 Language & Communication
 Social Interaction
 Sensory-Motor Interaction
 Goal-oriented, Self-reflexive,
& Self-regulative Thinking
Acceptance of autism:
http://www.autreat.com/dont_mourn
.html (1993)
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No Myths
 Public Service Announcement (PSA) about autism jointly
produced by the Autistic Self Advocacy Network (ASAN) and
the Dan Marino Foundation in 2008
 Entirely involved autistic adults & youth as participants
 http://www.youtube.com/watch?v=Y_dPZDcX_ck
Other Autism Videos to Watch
 Something About Us
 Video jointly produced by the Autistic Self Advocacy
Network (ASAN) & Autreach/Treehouse (in the United
Kingdom) in 2008 (20 minutes)
 Involved numerous autistic adults & teens
from countries worldwide (e.g., U.S., U.K.,
Australia, Spain, Germany)
 Part I: http://www.youtube.com/watch?v=J-014P0hQ6w
 Part II: http://www.youtube.com/watch?v=Dna1Z41_w3c
 TV Interview w/ me from the show “Conversations
from Penn State” on Big Ten Network (30 minutes)
 Focused on my autism advocacy/research work
 http://www.youtube.com/watch?v=ZSF54TPef8s
 http://conversations.psu.edu/episodes/scott_michael_ro
bertson
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Some Notes on Language Usage:
Identity-First Language for Autism
 The International Autistic Self-Advocacy & Allied
community prefers identity-first language (e.g.,
autistic people) over person-first language (e.g.,
people with autism) to refer to autistic adults & youth
(all persons carrying an autism spectrum identification)
 Reflects the view that autism forms part of the
human identity & way of being of autistic people
Autistic Community of Israel
 Draws from the blind & Deaf communities
& cultures [blind, deaf people]
 Sometimes we use bridging terms (e.g., people on
the autism spectrum) to refer to autistic people
 We respect usage of people-first language for
other disability communities (& cross-disability)
Some Notes on Language Usage:
Functional Language & Autism
 The phrases “high-functioning” (HF) and “lowfunctioning” (LF) appear widely in written
& spoken discourse to describe autistic people
www.neuro-typical.com
 HF & LF reflect a false dichotomy
 Autism is a far more diverse neurologicaldevelopmental disability than these grading
levels indicate
 Dichotomy not supported by research
 Functioning is always contextual & situational
 HF/LF use can be disrespectful of autistic people
 HF->minimizes barriers, challenges, difficulties
 LF->minimizes gifts, talents, abilities
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Grading People
 http://vimeo.com/12901883
 9-minute video produced by an autistic rights advocate to
highlight problems w/ the usage of the terms “high
functioning” and “low-functioning” to grade autistic
adults & youth
 Describes broader history of grading people w/ disabilities
(including usage to characterize people w/ intellectual &
developmental disabilities)
A Social-Ecological Perspective
of Disability Human Experiences
“No matter how aggressively we enforce the
law, 20 years after the signing of the ADA we
still face the challenge of attitudes and
stereotypes that stigmatize disabilities and
are every bit as destructive as racism,
sexism, homophobia and the other prejudices
that have certainly lessened over time, but
have not been completely eradicated from
our hearts and minds.”
Thomas E. Perez, Assistant Attorney General
for Civil Rights (2010)
http://www.youtube.com/watch?v=y2IHTvnIqhc
http://www.youtube.com/watch?v=7oWNgmjn5uw
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Lives Worth Living
 Documentary that aired on PBS’ Independent Lens series in
Fall & Winter 2011
 Chronicles the history of the disability rights movement from the
1960s through the 1990s
 Profiles the work of several key disability rights leaders (e.g.,
Judy Heumann, Ed Roberts, Justin Dart, Fred Fay, Judi
Chamberlain, Patrisha Wright, Bob Kafka, Michael Winter, etc.)
 Trailer: http://www.youtube.com/watch?v=RlXm9NJDacM
 Story Line Pictures (the film maker) is selling a DVD for $15 at
<http://www.storylinemotionpictures.com/PurchaseHome.htm
 Will likely soon be available on iTunes for less money (probably $3$5 rental; $10-$15 purchase)
Capturing a Social-Ecological
Model of Disability Experiences
 Physical Environment (setup and layout of the
physical space, including architecture, objects,
lighting, arrangement of people, etc.)
 Social Dynamics of the Physical Environment
(attitudes, perceptions, beliefs, and values of the
people in the physical environment)
 Individual Uniqueness/Individual Differences
(persons’ strengths, weaknesses, values, talents,
gifts, goals, beliefs, preferences, needs, wants,
desires, rights, etc.)
 Cultural Norms (norms, values, standards, rules,
and traditions among the local community, nation,
and other levels of societal membership)
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I Am Norm Campaign:
Inclusion in K-12 Schools
www.includingsamuel.com
 New national campaign led by teens and young adults
w/ disabilities to promote inclusion for adults and youth
w/ disabilities in schools and local communities
 http://www.iamnorm.org
 Videos from the I Am Norm national campaign:
http://www.youtube.com/user/IamNorm2010
 School and Community Resources & Tools:
http://www.iamnorm.org/be-norm/resources.aspx
Taishoff Ctr. and disAbled & Proud
Conference: Inclusion in Higher Education
 Syracuse University organizes the disAbled &
Proud leadership conference for
undergraduate and graduate students with
disabilities through the Taishoff Center on
Inclusive Higher Education @ SU
 First conference held in Summer 2011 w/
more than 100 college students w/
disabilities attending
 Details on the next conference will be
announced in coming months
 http://disabledandproud.syr.edu/
 http://soe.syr.edu/centers_institutes/taishof
f_center
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“We need diversity of thought
in the world to face the new
challenges.” —Tim Berners-Lee,
architect of the World Wide Web
Neurodiversity…
Neurodiversity: An Overview
 Recognition that all people possess diverse
neurological architectures and cognitive styles,
including people who carry identifications of
neurological disabilities (e.g., ADHD, autism,
dyslexia, learning disabilities, OCD, etc.)
 Diverse neurology and cognition means that all
people also possess diverse strengths and weaknesses
 Diverse strengths can empower meaningful gifts &
talents to drive careers, pursuits, & hobbies
 Word neurodiversity popularized in media articles
about autism in the late 1990s & early 2000s
(neurodiversity=portmanteau of neurology + diversity)
but originated in late 1970s & early/mid 1980s to
describe college students w/ dyslexia & other
cognitive disabilities
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Neurodiversity Myths…
 Myth: Neurodiversity denies recognition of autism (and ADHD,
dyslexia, OCD, etc.) as a disability
 Truth: Neurodiversity embraces a social-ecological model of the
disability human experience of autism (& ADHD, dyslexia, etc.)
 Myth: Neurodiversity advocates oppose supports and services
(e.g., OT, SLT, PT, etc.) for autistic youth & adults (and youth &
adults w/ other disabilities) under a “don’t change me” belief
 Truth: Neurodiversity advocates encourage innovation &
expansion of disability supports and services that respect human
rights & rights afforded under the United Nation’s Convention
on the Rights of Persons with Disabilities (UN CRPD)
[http://www.un.org/disabilities/default.asp?navid=14&pid=150]
Neurodiversity Symposium
 Syracuse University organizes an annual national
symposium on neurodiversity & empowerment of
autistic self-advocacy
 Organized in association w/ Syracuse University’s
Disability Cultural Center (http://sudcc.syr.edu/)
 First symposium held in Summer 2011 in conjunction
with Syracuse University’s 2011 disAbled & Proud
National Conference
 Video of the keynote from the 2011 neurodiversity
symposium: http://thechp.syr.edu/keynote.html
 Details for the 2012 Neurodiversity Symposium will be
announced in the coming months
 http://neurodiversitysymposium.wordpress.com/
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Autistics Speaking Day: Video
 http://www.youtube.com/watch?v=Oppf9-HZago
 Produced for ASAN’s 5-Year Anniversary Celebration event at the
National Press Club in Washington D.C.
 Kathryn Bjornstad (an American autistic person) and Corina Becker (a
Canadian autistic person) are the first two speakers in the video
 Kathryn and Corina jointly received the Award for Exceptional
Services to the Autistic Community from ASAN for their work to
establish international Autistics Speaking Day
 Originally a response to Project Communications Shutdown in
Australia; now an annual day of communication celebration.
Autistic Pride Day
 Annual International Day of
Celebration of Neurodiversity
& Autistic Disability Culture &
Community
 June 18
 Established in 2005
 Celebrated w/ events
held worldwide
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The Autistic Self Advocacy Network
(ASAN)
 National 501(c)(3) nonprofit organization co-founded
by my colleague Ari Ne’eman and I in 2006
 Incorporation in New Jersey (November 2006) “Never doubt that a small
 National Offices in Washington D.C.
 Chapters nationwide & in Australia
 A few paid staff + many volunteers
 Established for a multi-part mission:
group of thoughtful,
committed people can
change the world. Indeed,
it is the only thing that
ever has.” —Margaret
Mead, anthropologist
 Protect the rights of all autistic adults and youth
 Foster societal understanding & acceptance of the disability
human experience of autism
 Improve community integration and inclusion, self-determination,
interdependent living, community participation, & quality of life
for autistic people and the broader disability community
 http://www.autisticadvocacy.org | info@autisticadvocacy.org
ASAN on Online Media
 YouTube: http://www.youtube.com/user/autselfadvocacyntwk
 Twitter: http://twitter.com/autselfadvocacy
 Facebook: http://www.facebook.com/pages/
The-Autistic-Self-Advocacy-Network/46477486501
 Google+: https://plus.google.com/104853753229101502677/
 ASAN’s Announcement Email Listserv:
http://dir.groups.yahoo.com/group/AutisticSelfAdvocacyNetwork/
 ASAN’s E-Newsletter: To sign up to receive it (free), send an email to
newsletter@autisticadvocacy.org
 Can donate on Paypal via our website, www.autisticadvocacy.org
(or mail a check to P.O. Box 66122, Washington D.C. 20035)
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ASAN’s Initiatives: What We Do
 ASAN organizes a national network of social/support
groups run by autistic people for autistic people
 ASAN has initiatives in several core domains:
 Educational Outreach, Training, & Technical Assistance
 Advocacy to Strengthen Disability Practices & Policies
 Community-Based Research Projects
 Cross-Disability Informational Campaigns
 Advocacy for Marginalized Autistic Adults & Youth
 All of ASAN’s leaders are autistic (e.g., Board Members, paid
staff members, regional coordinators, etc.)
 Reasoning for this stems from our founding as a
disability self-advocacy organization
 We collaborate with many non-autistic allies on
most of our initiatives (and have non-autistic
persons among our membership)
ASAN’s 5-Year Anniversary
Celebration in D.C.
 Hosted our 5-year anniversary celebration at the National
Press Club in Washington D.C. in November 2011
 Celebration featured invited addresses from:
 Dr. Alexa Posny, Assistant Secretary of Special Education &
Rehabilitative Services (U.S. Department of Education)
 Sharon Lewis, Commissioner of the Administration on
Developmental Disabilities (U.S. Department of Health &
Human Services)
 Presented an Outstanding Ally award to Nancy Thaler,
Executive Director of the National Association of State
Directors of Developmental Disability Services (NASDDS)
 More than 140 guests attended (including many
leaders in the national disability rights movement)
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ASAN’s Books & Informational
Resources: Published Work
 ASAN produced Navigating College in 2011
 Created by autistic people w/ college experience
for prospective & current college students w/
disabilities (including autistic college students
 http://www.navigatingcollege.org
 Download an electronic copy for free (PDF)
or purchase a print copy for $15
 ASAN co-led development of “Keeping the Promise: Self-Advocates
Defining the Meaning of Community Living” in 2011
 Developed in collaboration w/ the National Youth Leadership
Network (NYLN) & Self-Advocates Becoming Empowered (SABE)
 Download for free @ http://www.acf.hhs.gov/programs/add/
 Informing the Centers for Medicare & Medicaid Services (CMS)’s
rule-making on Medicaid funding for home & community-based
services for Americans w/ intellectual & developmental disabilities
ASAN’s Informational Resources:
Ongoing & Upcoming Work
 ASAN is producing the Emerging Student Leaders guide
 Instructional resource to teach leadership, self-advocacy, and
campus advocacy skills to all college students
 Funded by the Daniel Jordan Fiddle Foundation (NJ)
 Will similarly make it freely available
 ASAN is developing Loud Hands: Autistic People, Speaking
 Anthology of essays by autistic authors on autism acceptance,
neurodiversity, disability rights, resilience, and autistic pride,
community, and culture
 http://www.indiegogo.com/The-Loud-Hands-Project
 Our online fundraising campaign runs through March 15 (73% there)
 Can donate at the project site via credit card
& Paypal to support the work
 http://www.youtube.com/watch?v=4iVektXsNRI


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ASAN’s Autism Campus Inclusion
Leadership-Training Academy
 Annual five-day summer workshop for autistic college students
funded by the Mitsubishi Electric America Foundation & The Gone
Giving Fund at the New Hampshire Charitable Foundation
 1st Academy will take place at the University of
New Hampshire in Summer 2012
 Autistic college students from colleges & universities
nationwide will competitively apply to participate
 Selected students (20-30+) will have their expenses paid to travel
to participate (i.e., airfare, accommodation)
 Participants will learn leadership, self-advocacy, & campus
advocacy skills to empower their disability system change
efforts on their home campuses to improve inclusion,
supports, and acceptance for college students w/ disabilities
ASAN’s Employment Work
 Creating a database of resumes from autistic adults
 Have more than 50 resumes so far (started a few months ago)
 Will be providing these resumes to companies
 Email: resumes@autisticadvocacy.org
 Providing technical assistance to organizations to help
them employ autistic adults in integrated, competitive
employment positions
 Providing technical assistance to Freddie Mac as our first
company in this work
 Freddie Mac is hiring 3-4 autistic interns
 Positions at the intersection of
technology, economics, & stats
 Also beginning to investigate the discriminatory use of
personality tests against people w/ disabilities in hiring and
broader employment practices (possible ADA violation)
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ASAN’s Symposium on Autism
Research @ Harvard Law School
 ASAN hosted a national symposium on ethical, legal,
and societal implications of autism research at
Harvard Law School in December 2011
 Captioned video from the event will soon be available
to watch online (for free)
 ASAN is producing a policy brief series in conjunction
w/ the symposium
 We’re also planning to publish articles based on the
symposium in a feature issue of an academic journal
 Funding for this work comes from a grant from the
Administration on Developmental Disabilities
 We may organize in the future other symposia to
expand upon the discussions at Harvard
ASAN’s other Trainings
 Contract w/ the Family Network on Disabilities of
Florida (www.fndfl.org) to conduct webinars
 Focus on self-advocacy/self-determination
 May collaborate w/ other parent advocacy organizations
on similar trainings in the long-term future
 Run the self-advocacy presentation track of the Autism
Summer Institute hosted by the University of New
Hampshire’s Institute on Disability (iod.unh.edu)
 Have conducted trainings on autism through the
federally funded Autism NOW: National Autism Resource
& Information Center (www.autismnow.org)
 ASAN became a founding partner organization of the center
in 2010 (which receives funding from ADD)
 Also produced a core values document
through our work w/ the center
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ASAN’s Initiatives: Strengthening
Disability Policy & Practice
 ASAN served in the alliance of small businesses
& disability advocacy organizations that helped
promote passage of the ADA Amendments
Act of 2008
http://access-board.gov/
about/laws/
ADA-amendments.htm
 ASAN participates in the Collaboration to Promote SelfDetermination (CPSD), a cross-disability coalition of 12
member organizations established in 2009
 CPSD helped craft the provisions of the 3 TEAM (Transition
toward Excellence, Achievement, & Mobility) Acts
 First introduced to Congress in February 2011
http://www.thecpsd.org
 Would strengthen supports and services to empower
transition for students with intellectual and developmental
disabilities from high school into integrated, competitive
employment, higher education, and community living
ASAN’s Other Coalitional Involvement
 Member of the Alliance to Prevent Restraint,
Aversive Interventions, & Seclusion [22 organizations]
 Established in 2004 to protect adults & youth w/ disabilities from
harmful & inhumane activities (& follow the UN CRPD’s rights)
 http://tash.org/advocacy-issues/restraint-and-seclusion-aprais
 S.2020 Keeping All Students Safe Act (Dec. 2011) [current bill]
 Member of the National Disability Leadership Alliance (NDLA)
 Coalition of 14 national disability organizations led by people w/
disabilities that pursues disability systems change
 http://www.disabilityleadership.net/
 Member of the National Universal Design for
Learning Task Force (NUDLTF) [40 organizations]
 http://www.udlcenter.org/aboutudlcenter/partnerships/taskforce
 Promotes use of UDL principles to advance academic achievement &
educational opportunities for all learners
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ASAN’s Initiatives: Conducting
Community-Based Research
 ASAN serves as the community-partner organization of the Academic
Autistic Spectrum Partnership In Research and Education (AASPIRE)
on community-based participatory research (CBPR) projects
 CBPR involves equal partnerships between academic researchers and
community members in all phases of the research process
 Including Study Creation, Grant-Seeking, Data Collection &
Analysis, Research Findings Dissemination, etc.
 Partners: autistic adults, academic researchers, non-autistic allies
 We have a grant from the National Institute of Mental Health to fund
one of our studies on how to support autistic adults’ interactions
with healthcare services (other ongoing studies on health, wellbeing, & community participation of autistic adults)
http://www.aaspire.org
ASAN’s Cross-Disability Campaigns
 ASAN led a cross-disability campaign opposing the New York
University Child Study Center’s Ransom Note Ad Campaign (2007)
 Stigmatized people w/ neurological & mental health disabilities
 Our actions led to the end of the the ad campaign in a few
weeks (a multi-million dollar ad campaign initially planned to
run for months on billboards and in magazines)
 ASAN became a founding organization of Special Olympics’ Spread
the Word to End the Word Campaign (2008)
 ASAN led a cross-disability campaign against “I Am Autism” (2009)
 Autism Speaks’ video that stigmatized the human experience of autism
 Our work led to the removal of the video from YouTube
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New York University Child Study
Center’s Ransom Note Ads (2007)
A reflection of decades old stereotypes, myths, and stigma
Self-Advocacy & Self-Determination
“You are never granted a wish without also being given
the power to make it true. You may have to work for it,
however...”
—Richard Bach,
writer
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Self-Advocacy
 A few definitions from the audience
Some Definitions of Self-Advocacy…
 “The Ability to Speak Up for What We Want & Need”
(Shreiner, 2007)
 “A Concept & a Set of Skills Associated With SelfDetermination” (Test, Fowler, Wood, Brewer, & Eddy, 2005)
 “The Ability To Articulate One’s Needs & Make Informed
Decisions About Supports Necessary To Meet
http://www.ncwd-youth.info
/411-on-disability-disclosure
Those Needs” (Stodden, 2000)
 “Understanding & Seeking Support for
One’s Personal Rights” (English, 1997)
http://www.selfadvocate.org/library/pdfs/manual
.pdf
 “The Ability To: Assertively State Wants, Needs, & Rights;
Self-Determine and Pursue Needed Supports; and Conduct
Your Own Affairs” (Martin & Hubber-Marshall, 1995)
 “The Ability To Communicate With Others To Acquire
Information & Recruit Help In Meeting Personal Goals &
Needs” (Balcazar, Fawcett, & Seekin (1991)
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Some Definitions of Self-Advocacy…
 “The Ability to Speak Up for What We Want & Need”
(Shreiner, 2007)
 “A Concept & a Set of Skills Associated With SelfDetermination” (Test, Fowler, Wood, Brewer, & Eddy, 2005)
 “The Ability To Articulate One’s Needs & Make Informed
Decisions About Supports Necessary To Meet
http://www.ncwd-youth.info
/411-on-disability-disclosure
Those Needs” (Stodden, 2000)
 “Understanding & Seeking Support for
One’s Personal Rights” (English, 1997)
http://www.selfadvocate.org/library/pdfs/manual
.pdf
 “The Ability To: Assertively State Wants, Needs, & Rights;
Self-Determine and Pursue Needed Supports; and Conduct
Your Own Affairs” (Martin & Hubber-Marshall, 1995)
 “The Ability To Communicate With Others To Acquire
Information & Recruit Help In Meeting Personal Goals &
Needs” (Balcazar, Fawcett, & Seekin (1991)
Self-Determination & Self-Advocacy
 Self-Determination: The autonomous ability to cause things
to happen in our lives to create new valued opportunities
that enrich ourselves & our quality of life
 Self-Advocacy: A set of skills that enable us to
express our needs, wants, and wishes to achieve
greater self-determination in our lives
 Self-Advocate: A personal w/ a disability
(often a person with an intellectual or
developmental disability)
 Self-Determination & Self-Advocacy are
individually dependent & personalized
alliesinselfadvocacy.org/
2011-summit-report/
 What’s true for one person will
not be for another person
 Variability & variation across
age, development, & maturity
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4 Components of Self-Advocacy
 Knowledge of Self (e.g., strengths, weaknesses,
disabilities, preferences, goals, dreams, ambitions,
interests, rights, responsibilities, support needs, etc.)
 Communication Skills (e.g., articulation, assertiveness,
listening skills, negotiation/compromise, interpersonal skills)
 Knowledge of Rights & Resources (e.g., human, personal,
disability, community, consumer, educational, service)
 Leadership Skills (e.g., decision-making, resource mgmt.,
teamwork, task delegation,
planning, cause advocacy)
http://www.familycafe.net/images/stories/pdffiles/iep_guide
book.pdf
Teaching Self-Advocacy Skills:
Recommended Activities…
Florida Youth Council
 Knowledge of Self: self-visualizing; self-assessments; self-collages;
self-portraits; journaling; “me” commercials; interest & personality
surveys; discussions on diversity, disability, abilities, & weaknesses;
 Communication Skills: acting; podcasting; roleplaying; presenting;
interviewing; supported teamwork; teaching; letter-writing; drawing
 Knowledge of Rights & Resources: IDEA/IEP instructional programs;
disability history/law instructional programs; discussions of
school/work culture & community; discussions on assistive
technologies, accommodations, & supports; community trips;
law/rights 101
 Leadership Skills: student-directed IEPs; youth leadership summits;
community service/volunteering; organization of household activities;
peer mentoring; employment/internships; youth leadership training
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“The greatest mistake you can make in life is to be
continually fearing you will make one.”
—Elbert Hubbard, artist
Dignity of Risk Philosophy
 Right of all people (including people with disabilities) to undertake
tasks and experience situations that carry some degree of risk to them
 People with disabilities often denied opportunities to experience
certain situations and perform certain tasks because of
fear of risk (i.e., safety, failure, uncertainty, etc.)
 The right to experience opportunities with risk:
 Enables us to learn from situations & tasks with risk to improve our
situational knowledge base & skill sets
 Constitutes a facet of American liberty (Life, Liberty, & the Pursuit
of Happiness) under the Declaration of Independence
 Minnesota Developmental Disabilities Council provides online a good
video resource on Dignity of Risk:
http://www.mnddc.org/parallels2/one/video08/dignityofRisk.html
“The greatest mistake you can make in life is to be
continually fearing you will make one.”
—Elbert Hubbard, artist
Dignity of Risk Philosophy
 Right of all people (including people with disabilities) to undertake
tasks and experience situations that carry some degree of risk to them
 People with disabilities often denied opportunities to experience
certain situations and perform certain tasks because of
fear of risk (i.e., safety, failure, uncertainty, etc.)
 The right to experience opportunities with risk:
 Enables us to learn from situations & tasks with risk to improve our
situational knowledge base & skill sets
 Constitutes a facet of American liberty (Life, Liberty, & the Pursuit
of Happiness) under the Declaration of Independence
 Minnesota Developmental Disabilities Council provides online a good
video resource on Dignity of Risk:
http://www.mnddc.org/parallels2/one/video08/dignityofRisk.html
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National Self-Advocacy Resources
 National Youth Leadership Network (NYLN)
 National organization run by young adults w/ disabilities
(18-28) for youth/young adults w/ disabilities (16-28)
 http://www.nyln.org
 Organize workshops, webinars, & other trainings on selfadvocacy and leadership skill development
 Kids as Self-Advocates (KASA)
 National organization run by teens & young adults w/
disabilities (13-24) for teens & young adults w/ disabilities
 http://www.kvkasa.org
 Provide tip sheets/guides (>60) & conduct trainings
 Partners for Youth w/ Disabilities’ Natl. Center for Mentoring
Youth w/ disabilities
 http://www.pyd.org/national-center
 provide resources, technical assistance, and trainings
Louisiana Self-Advocacy Resources
 People First of Louisiana (www.peoplefirstla.org)
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I’m Determined Project in Virginia
 http://www.imdetermined.org/
 With supports, primary & secondary students w/ disabilities set their
own goals & participate actively in their own IEP meetings
 Assistive tools & technologies (e.g., Powerpoint, collages, touch
screens) help students to express themselves & take direction over
their educational plans
 Videos on Background on the Project: www.imdetermined.org/films/
 Educator Resources & Videos: www.imdetermined.org/educators/
 Youth Resources & Videos: www.imdetermined.org/youth
 Parent Resources & Videos: www.imdetermined.org/parents/
A Natl. Gateway to Self-Determination
 http://www.aucd.org/ngsd/
 Multi-year training project funded by the
Administration on Developmental Disabilities
 Website presents clearinghouse of information on selfdetermination for people w/ disabilities
 Videos from self-advocates & university researchers:
http://www.youtube.com/user/GatewaytoSD
 Written Practice Guides & Resources:
http://www.aucd.org/NGSD/template/link.cfm
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Meaningful Disability Supports
Integrate across Many Avenues
 Assistive Technologies to facilitate functioning &
performance of activities of daily living
 Low-tech assistive technologies (e.g., speed laces,
nail clippers, grips, highlighters, switches, etc.)
 High-tech assistive technologies (e.g., smartphones,
tablet computers, laptop/desktop computers, e-readers,
smartpens, netbooks, Alphasmarts, etc.)
 Support systems involving the local community, family
members, and friends
 Disability accommodations afforded under the ADA
 Disability services in K-12 afforded under IDEA &
provided post-K-12 by disability service systems
Technical Assistance for Assistive
Technologies: Resource Centers
 Two national centers funded by the U.S. Dept. of Education provide
information resources & technical assistance on assistive technologies
 Families: Family Center on Technology and Disability (www.fctd.info/)
 Educators & Service Providers: National Center on
Technology Innovation (www.nationaltechcenter.org/)
 Assistive Technology Advocacy Center at Disability Rights NJ provides
information resources & technical assistance specifically for NJ residents
(www.drnj.org/atacprogram.htm) w/ funding from NJ Dept. of Labor and
Workforce Development
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Assistive Tech Re-Use
 Natl. Pass It On Ctr. (http://www.passitoncenter.org/)
 Natl. collaborative effort that coordinates re-utilization of
assistive technology systems and devices
 Affiliated regional centers nationwide
 An affiliated AT reuse centers in Louisiana
 Lousiana Asssistive Technology Action Network
 www.latan.org
Natl. Information Resources & Training
for Empowerment & Allied Support
 Natl. Dissemination Center for Children w/ Disabilities
 Information clearinghouse on disability supports
for children w/ disabilities, parent training, etc.
 http://www.nichcy.org/
 Disability Rights Education & Defense Fund (DREDF)
 Natl. disability civil rights organization
 http://www.dredf.org/
 Two natl. centers on secondary education & postsecondary transition
offer extensive written resources, videos, & technical assistance
 Natl. Secondary Transition Technical Assistance Ctr. (www.nsttac.org)
 Natl. Ctr. on Secondary Education & Transition (www.ncset.org/)
 National Collaboration on Workforce
& Disability (http://www.ncwd-youth.info/)
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NJ Information Resources & Training
for Empowerment & Allied Support
 Louisiana university resource for disability instruction & training
 Human Development Center at Louisiana State University hosting
this conference (www.hdc.lsuhsc.edu/)
 Louisiana’s University Center for Excellence in Developmental
Disabilities Research, Education, & Service (UCEDD)
Parent disability advocacy networks in Louisiana for resources/training
 Louisiana Parent Training and Information Center (www.laptic.org)
 Pyramid Community Parent Resource Center
(pyramidparentcenter.org)
Shyest Student in High School…
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The End of All Communication…
Newer Version of that Website…
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The Real End…
http:/tiny.cc/RobertsonWayneSPA2012
“Energy and persistence
conquer all things.”
−Benjamin Franklin, inventor
Contacting Scott Michael Robertson
 Email: srobertson@ist.psu.edu, srobertson@autisticadvocacy.org
 Mention the words autism or disabilities in the subject line
 Reference where you met me in the email message’s body (i.e., the
2012 SPA workshop in Wayne, NJ)
 Available on Google+, Facebook (look for Scott Michael Robertson
on Penn State University, Carnegie Mellon University, & Rensselaer
Polytechnic Institute networks)
 Available on Instant Messaging [e.g., AOL IM, Yahoo IM,
MSN/Windows Live, Gmail Chat, Skype, Jabber, ICQ, & IRC]
 Generally prefer online over telephone communication (partly due
to auditory comprehension issues)
http:/tiny.cc/RobertsonWayneSPA2012
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References: Bullying/Ostracism
 Reid, B. & Batton, A. (2006). B is for Bullied. National
Autistic Society: United Kingdom.
 Shattuck, P. T., Orsmond, G. I., Wagner, M. & Cooper, B.
P. (2011). Participation in Social Activities among
Adolescents with an Autism Spectrum Disorder. PloS
One, 6, 11 e27176. doi:10.1371/journal.pone.0027176
References: Self-Advocacy
 English, K. M. (1997). Self-advocacy for students who
are deaf or hard of hearing.
 Martin, J. E., & Marshall, L. H. (1995). ChoiceMaker: A
Comprehensive Self-Determination Transition Program.
Intervention in School and Clinic, 30, 147-156.
 Test, Fowler, Wood, Brewer, & Eddy (2005). A
Conceptual Framework of Self-Advocacy for Students
with Disabilities. Remedial and Special Education, 26,
43-54.
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