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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About the Author

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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