The National Coalition on Auditory Processing Disorders (NCAPD): History and Overview

When an individual is diagnosed with any disorder, it can be a frustrating and overwhelming time in their life. For some, diagnosis brings a sense of closure and relief, through knowing what is wrong. For others, diagnosis is merely the beginning of a new journey to gather information regarding the disorder they have been diagnosed with.

If the diagnosis is a common disorder with a great amount of public awareness and easily accessible information, the individual will have many avenues through which they can learn about their disorder.

What happens though, when an individual is diagnosed with a disorder that is less well known? Or a disorder for which the only consensus available is that there is no clear consensus? Where does a person go for information and support? How can you help yourself, or your loved one with the disorder, if you don't understand it?

Many individuals addressing the diagnosis of auditory processing disorder (APD) deal with the anguish and frustration as they attempt to understand and manage APDs.

My name is Debbie Wood. I am the co-founder and President of the NCAPD. My daughter, Sarah, was diagnosed with a central auditory processing disorder (CAPD) in April of 1998. For 16 months after Sarah was diagnosed with CAPD (currently referred to as APD among most professionals), I struggled to understand APD and searched for answers to help Sarah. In July of 1999, I started a personal web site on APD titled CAPD: From the Heart of a Mother (www.angelfire.com/fl2/capd).

Shortly after initiating the website, I joined a listserv about CAPD moderated by Dr. Jay R Lucker. Dr. Lucker is an audiologist who specializes in APD. In February of 2000, Dr. Lucker and I began working together to co-host an online chat/support group for individuals and families affected by auditory processing disorders. The desire to help others led to discussions regarding the formation of a grassroots nonprofit organization. We invited Dr. Deborah Moncrieff, from the University of Florida, to join us as a member of the Board of Directors. The appropriate paper work was filed in the State of Florida. On August 14, 2000, the National Coalition on Auditory Processing Disorders (NCAPD) was officially incorporated. NCAPD has been granted 501C3 status from the IRS.

The goal of the NCAPD is to become a national resource information network and to assist families and individuals affected by auditory processing disorders through education, support and public awareness. To achieve this goal, the NCAPD is developing a variety of programs for individuals as well as professionals. These programs include the Online Chat, the Be-A-Friend Program, the Simulation of Auditory Processing Problems, and the National Referral Program. The NCAPD also offers regional conferences and a quarterly newsletter for members, called "NCAPD News."

The Online Chat, which is accessible through the NCAPD's home page ( www.ncapd.org), provides an opportunity for individuals and professionals to discuss APD. The morning chat with Dr J. occurs twice monthly and provides an opportunity to correspond with an audiologist who specializes in APD. The evening chat, which meets on a weekly basis, allows parents and individuals to share on a more personal level and to form a support network among themselves. For many individuals, our online chat provides the first opportunity to talk with anyone else affected by APD.

To provide continued personal support beyond the Online Chat, the NCAPD has developed the Be-A-Friend Program. The Be-A-Friend Program works to bring together individuals in a given area who are facing challenges associated with APD. The majority of participants are not professionals. These individuals either have APD, or have family members with APD. The program is not designed to provide professional advice or diagnosis, but to provide support from a "friend" who can share and understand based on personal experiences. Once an individual registers for the Be-A-Friend Program, they are put in contact with other individuals via email. A future goal of the Be-A-Friend Program is to start local support groups in order to provide in-person support and promote public awareness of auditory processing disorders.

Another valuable resource provided by NCAPD is the Simulation of Auditory Processing Problems. The simulation helps family members, teachers and professionals understand what it's like to have an auditory processing disorder. At this time, the simulation uses written text. The idea is to present linguistic information in an easy-to-present format, that is inexpensive to produce, yet "concrete" enough to provide insight into what it's like to have an APD, while providing useful strategies for children with auditory processing problems. A future goal of the NCAPD is to present the simulation in an audio format.

All audiologists do not perform APD tests. To find an audiologist that performs auditory processing testing, the NCAPD manages a National Referral Program for audiologists and other professionals who test for, or offer remediation for, auditory processing disorders. The National Referral Program can be accessed through the NCAPD's web site ( www.ncapd.org). Importantly, the NCAPD does not screen individuals who request to be listed on the National Referral Program. Therefore, NCAPD recommends that individuals using the NCAPD's National Referral Program verify the professional's credentials. NCAPD cannot be responsible for people who list themselves as qualified and competent professionals for the referral program.

In August of 2001, the National Coalition on Auditory Processing Disorder held it's first conference, "Straight Talk About Auditory Processing", in Orlando, Florida. There were approximately 80 people in attendance including parents of children with auditory processing disorder, educators, speech-language pathologists, audiologists and other professionals.

During 2002, the NCAPD plans to expand their conference offerings to include more information on management of auditory processing disorders. Information on relevant educational laws such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) will also be covered in upcoming conferences.

The National Coalition on Auditory Processing Disorders is working with various professionals to produce a handbook on APD titled: An Overview of Auditory Processing Disorders. This handbook will describe auditory processing disorders from different professional view points, although it will be written in terms a lay person can understand. Some of the professionals who have donated articles to this handbook include well-known professionals such as Dr. Jeananne Ferre, Dr. Jack Katz, Dr. Dorothy Kelly, Dr. Jay Lucker and Dr. Deborah Moncrieff. The production of An Overview of Auditory Processing Disorders is supported, in part, by a grant from the America Online/Time Warner Foundation.

The basic underlying philosophy of the NCAPD is that by providing education and support, the NCAPD is empowering individuals to make informed decisions regarding the diagnosis and management of auditory processing disorders.

For more information on the National Coalition on Auditory Processing Disorders, please visit their web site at www.ncapd.org or email the NCAPD at info@ncapd.org.

¹ Lucker, Jay R. NCAPD's Simulation of Auditory Processing Problems, NCAPD News, March 2000, pg. 2.