by Nancy
Johnson, Director, 32º Masonic Learning Center for Children
Certified
Member of the Academy of Orton-Gillingham Practitioners and Educators
(AOGPE)
This
article is geared towards adults in higher education and/or the workforce.
Some of this information will be helpful to young adults as well.
Self-advocacy
is the ability to understand and effectively communicate one's needs to
other individuals. Learning to become an effective self-advocate, especially
for individuals with a hidden handicap such as dyslexia, is all about
educating the people around you.
Knowledge is the key to self-advocacy. Like anything else, the more you
know, the better you understand, and the easier it is to explain.
This journey
of self-education is an ongoing process, as individual needs change over
time. There are three parts to becoming an effective self-advocate: knowing
yourself, knowing your needs, and knowing how to get what you need.
Know
Yourself
Diagnostic
testing is the first step towards better understanding your needs. A psycho-educational
evaluation is a series of tests used to diagnose specific learning disabilities
and to identify individual strengths and weaknesses.
Be aware
of co-existing disorders (learning disabilities that are found together).
For example, a person with dyslexia has roughly a sixty-percent chance
of also having Attention Deficit Disorder (ADD) or Attention Deficit with
Hyperactivity Disorder (ADHD). Therefore, it is important to find a psychologist
or neuropsychologist specializing in diagnosing language-based learning
disabilities and related disorders.
In order
to communicate with others you need to understand what tests are used
and what and how they measure. A good evaluation should include the following:
- aptitude
test
- achievement
test
- test of
memory
- test of
phonological processing
The results
and recommendations should be clearly stated in a written report and clearly
explained in a one-on-one meeting. You should know your skills levels,
strengths, and weaknesses.
Testing can
be costly. Be sure to check with your insurance company to see if your
policy will cover all or part of the testing cost. A formal diagnosis
of a learning disability is important because it entitles you to rights
under federal law. Although some employers may not, all educational institutions
require formal documentation of a diagnosed disability before providing
services.
Know
What You Need
After you
receive a formal diagnosis, it is important that you know your skills,
strengths, and weaknesses. Learn about your disability and how it affects
your daily activities, communications, and social interactions. It's important
to keep in mind that no learning disability effects two people the same
way.
There are
three areas worth investigating to determine what you need to improve
your skills and/or compensate for your weaknesses: interventions, accommodations,
and modifications.
Interventions
are evidence-based instruction to improve skills (reading, spelling, math,
comprehension, speech, etc.). This instruction is multisensory, systematic,
and direct with the opportunity for guided practice.
Intervention
may also include psychological counseling and/or support groups to help
you work through the emotional aspects of living with a hidden disability.
The goal of intervention is to improve skills and work towards independence.
Regardless of age, it is never too late for intervention.
Accommodations are tools to help accomplish a goal that do not change the integrity of
the task (books on tape, extra time for test, copies of handouts before
a meeting, editor, use of a calculator, etc.). Accommodations compensate
for disabilities, and vary from person to person based on the type of
disability and the degree to which it interferes with daily activities.
The ability
to use some accommodations is dependent upon intervention. For example,
spelling, typically a major difficulty for people with dyslexia, must
be mastered at a fifth grade level for a person to use a spell checker
independently. Many people with dyslexia benefit from using the spell
checker on the computer along with a hand-held spell checker that reads
words and provides definitions. When you use these two spell checkers
together, you can accurately spell words that look alike and/or sound
alike.
Individuals
with a physical handicap who use wheelchairs are entitled to uramps and
elevators to have "equal access" to buildings. The same is true
for individuals with language-based learning disabilities.
For example,
if a person with a learning disability has difficulty reading or writing,
voice recognition software on a computer would be an appropriate accommodation.
This software allows the person to speak reports and e-mails into the
computer, and to hear information off the screen. This accommodation does
not change the quality of writing the individual is capable of creating,
but assists the person to accomplish the goal. Accommodations are not
meant to replace intervention, but to assist with day-to-day tasks.
Modifications are alterations to assignments that do change the overall task; for example,
writing a two-page report instead of a four-page report. It is important
to keep in mind that nearly all employers and most educational institutions
(colleges and universities) do not provide modifications.
It is important
that you understand the differences between interventions, accommodations,
and modifications and how they may or may not meet your specific needs.
This knowledge will help you better communicate what you need and why.
Communication
takes practice and can be emotionally draining. It's easy to get caught-up
in feelings of guilt that you are asking for "special treatment"
or that you don't need an accommodation because you excel in other areas.
Having a supportive friend and/or support group to help "coach"
you through this process is important to keeping you grounded.
Know
How to Get What You Need
The Americans
with Disabilities Act of 1990 guarantees equal access and equal opportunities
to individuals with physical and/or hidden learning disabilities that
significantly interfere with one or more major life activities (communicating,
reading, physical movement, etc.).
Public and
private institutions are required to provide "reasonable accommodations"
to individuals with a documented disability, as long as these accommodations
do not create an undue hardship for the company or university. Employers
and universities are prohibited from discriminating against a person with
a learning disability if they are "otherwise qualified."
Accommodations
help to overcome the obstacles of the disability. If the disability does
interfere with a work or educational activity, it is the responsibility
of the individual with the disability to share this information with their
supervisor, human resources person, administrators, and/or professors.
Documenting
communications and interactions in a journal and keeping copies of all
letters, e-mails, policies, and procedures is a good way to provide information
if you have difficulty getting your accommodations and you need to file
a complaint.
Understanding
your rights and knowing how to clearly communicate with others in a constructive
way is just as important as clearly communicating your disability and
individual needs.
Finding a college or university that meets your needs may not be easy.
Review guidebooks that list colleges and universities that provide accommodations
and/or full programs for students with learning disabilities. When
deciding on a school that is right for you, consider the following:
- course
offerings
- size of
campus
- private
vs. public
- rural
vs. urban
- extra-curricular
activities
- accommodations
vs. full program (or both)
After you
narrow down your options, anonymously call the office of academic support
and the departments from which you wish to take classes and ask questions.
These calls will allow you to learn a bit about the types of accommodations
and sensitivity you can expect to find at the college before you reveal
your identity. If you are dissatisfied with the answers, the school may
not be right for you.
Although
public and private institutions are required to comply with the ADA, some
schools are more willing to do so than others. Regardless of how good
a school may look in a catalog or sound over the phone, you should always
request a written copy of the policies and procedures for accommodations,
for backup accommodations (if a book on tape is not audible), and for
filing complaints.
Make sure
these accommodations and backup accommodations will allow you to complete
your course work on time. If an institution does not have a plan in writing,
including backup accommodations, the school is not equipped to provide
basic accommodation in a timely manner.
In summary,
the better you understand your disability, needs, and rights, and the
better you can communicate and document this information, the easier self-advocating
will become.
Self-education,
effective communication, and maintaining a support system are your keys
to becoming an effective self-advocate.
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References,
Resources & Organizations
College Guides
The
K & W Guide to Colleges for Students with Learning Disabilities or
Attention Deficit Disorders by Marybeth Kravets. Random House,
Inc., 2003. ISBN # 0375763570
Peterson's
Colleges with Programs for Students with Learning Disabilities or Attention
Deficit Disorders by Charles Mangrum and Stephen S. Strichart. Peterson's,
2003. ISBN # 0768904552
Other
Resources
Learning
Outside the Lines: Two Ivy League Students with Learning Disabilities
and ADHD Give You the Tools for Academic Success by Jonathan
Mooney and David Cole. Simon
& Shuster, 2000. ISBN: 068486598X
Survival
Guide for College Students with LD and ADD by Kathleen Nadeau.
Magination, 1994. ISBN: 0945354630
Help
for College Students with Disabilities Flyer.
College-bound students need to learn self-advocacy skills - how to present
information about their disability and accommodations so professors want
to help. If students master these skills, they are more likely to make
a successful transition from high school to college (2 page flyer).
Organizations
International
Dyslexia Association (IDA) - http://www.interdys.org
Learning Disabilities Association
of America (LDA) - http://www.ldanatl.org
The National Center for Learning Disabilities
(NCLD) - http://www.NCLD.org
Wrightslaw - https://www.wrightslaw.com
Americans with Disabilities Act
of Ohio (ADA-OHIO) - http://www.ADA-OHIO.org
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Nancy
S. J. Johnson was diagnosed with dyslexia in the second grade. Despite
early identification, special education services were limited and her
tutors were not trained to teach dyslexics.
When she
was in sixth grade, her parents learned about proven reading methods for
dyslexics. The International Dyslexia
Association referred her parents to a tutor with training in an Orton-Gillingham
based program.
Ms. Johnson
thrived with this approach and learned to read. This experience was the
beginning of her interest in the invention of written language. She believes
that all dyslexic children and adults can learn to read with appropriate
instruction.
Instead of
teaching Ms. Johnson to read, the special educators encouraged her to
use accommodations. Books on tape from Recordings for the Blind and Dyslexic
(RFB&D) and Talking Books from the Library of Congress helped her
deal with required reading assignments in high school. Other accommodations
included additional time on tests, audio recording of lectures, essay
answers, and the use of a scribe. She continued to use these accommodations
through high school.
In 1992,
Ms. Johnson began her college search. She included documentation of her
disability and accommodation needs with her application. She also revealed
information about her disability and needs during the college interview
process. After careful consideration, Ms. Johnson decided to attend Denison
University in Granville Ohio.
Denison fulfilled
their obligation under the Americans with Disabilities Act of 1990 by
providing accommodations during her first semester. From the second semester
on, Denison failed to provide books and course materials (equal access)
in a timely manner. Ms. Johnson often received required readings a month
or more after assignments were due.
In 1996,
after several failed attempts to negotiate, Ms. Johnson filed a lawsuit
against Denison University, asserting that the university refused to provide
equal access. She was granted an emergency injunction that allowed her
to graduate on time with a B.A. in Educational Studies.
In 1998,
the lawsuit was settled after she and Denison developed written policies
and procedures to provide reasonable accommodations for future students.
Committed
to helping other individuals with dyslexia, Ms. Johnson began her Orton-Gillingham
training and practicum during the summer of 1995 under the direction of
Diana H. King, founder of the Kildonan School in Amenia New York. She
continued her practicum at the Language Training Institute (LTI) at Marburn
Academy in Columbus Ohio, under the supervision of Jane Ashby.
In 1997,
Ms. Johnson accepted a science teaching and tutoring position at the Kildonan
School, where she worked under the guidance of several Fellows of the
Academy of Orton-Gillingham Practitioners and Educators (AOGPE) including
Laurie Cuddy, Katherine Schantz, and Shirley Kokesh.
Today, Nancy
Johnson is the director of the 32º
Masonic Learning Center for Children, a non-profit clinic in Columbus,
Ohio that provides Orton-Gillingham instruction to dyslexic children free
of charge. (read
article about Learning Center for Children)
Ms. Johnson
is a Certified member of the Academy
of Orton-Gillingham Practitioners and Educators (AOGPE) and a Fellow-in-Training
under the supervision of Karen M. Bradford. She also serves as Vice President
of the Central
Ohio Branch of the International Dyslexia Association (COB/IDA).
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