Research and Reference Materials on Deaf-blindness

The materials included in this section represent some of the resources that have been helpful in our work with families and professionals in Maryland. For a more comprehensive collection of resource materials, please go to the DB-Link website.

Vision/Blindness | Hearing/Deafness | Deaf-blindness | Communication | Inclusive Practice | Early Intervention | Secondary Transition | Assistive Technology | Positive Behavior Support | Families | Assessment | Curriculum and Educational Programs | Instructional Strategies

Vision/Blindness

New Book Announcement from AFB Press

Cortical Visual Impairment: An Approach to Assessment and Intervention by Dr. Christine Roman-Lantzy, 2007. The current leading cause of visual impairment among children is not a disease or condition of the eyes, but cortical visual impairment (CVI)…in which visual dysfunction is caused by damage or injury to the brain. On the basis of more than 30 years' experience in working with hundreds of children of all ages with CVI, Chris Roman-Lantzy has developed a set of unique assessment tools and systematic, targeted principles whose use has helped children learn to use their vision more effectively. This one-of-a-kind resource provides readers with both a conceptual framework with which to understand working with CVI and concrete strategies to apply directly in their work.

It is available from the AFB Bookstore, www.afb.org/store , 800-232-3044, for $49.95. ISBN: 978-0-89128-829-9

APH CVI Website

http://www.aph.org/cvi/index.html

The American Printing House for the Blind (APH) has long recognized the need for information about cortical visual impairment (CVI). In response to this need APH created CVI Synergy, a group of researchers, educators, and physicians who work with children diagnosed with CVI. In May 2002, CVI Synergy met in Louisville , KY. The group identified articles and outlined research and products that are needed to provide better services to individuals and their families that live with CVI. A follow up meeting, CVI Synergy West, was held in May 2003, in Vancouver , BC , to discuss definitions and how to promote and encourage opportunities for educational and medical professionals to interact. This web site is the product of the CVI Synergy meetings, contributions from individuals and agencies across the United States and Canada , and APH staff.

Hearing/Deafness

Cochlear Implant Research Study

The Outcomes for Children Who Are Deaf-Blind after Cochlear Implantation (CIDB) Project is a study to determine the impact of cochlear implantation on auditory perception, language acquisition, and receptive and expressive communication. Currently, very little information is available about children who are deaf-blind and have cochlear implants. The primary goal of the study is to increase knowledge about this population. Children younger than 13 who currently use or are considering using a cochlear implant may be eligible to participate.

The CIDB Project is a joint effort by the Teaching Research Institute at Western Oregon University , the Beach Center on Disability at the University of Kansas , and the Midwest Ear Institute at St. Luke's Hospital, in Kansas City , Missouri . Several state deaf-blind projects are participating including California, Florida, Illinois, Indiana, Kansas, Kentucky, Maryland , Minnesota, Missouri, Nebraska, New Jersey, New York, Oregon, Pennsylvania, and Texas.

At the beginning of the study, four assessment questionnaires are completed for each child: three by family members and one by a Connections Project staff member based on interactions with the child. Follow-up assessments depend on how long a child has had an implant. Children who have not yet received a cochlear implant or who have recently received one will have subsequent assessments every 12 months for 3 years. Children who have had an implant for less than 7 years will be assessed one more time after 12 months. Children who have had an implant for more than 7 years undergo no further assessments. A small stipend is given to families of children who qualify for participation in the study.

This project (Grant #H327A050079) is funded by the U.S. Department of Education's Office of Special Education. For more information, visit http://www.wou.edu/cidb, e-mail CIDB@wou.edu, or call 877-660-CIDB (2432).

Parents, if your child has a cochlear implant or you are considering implantation for your child, please contact Diane Kelly to find out more about this exciting research!

Auditory neuropathy: What is it and what can we do about it?

By Linda J. Hood, PhD

The Hearing Journal, Volume 51, Number 8, August, 1998. Reprinted with permission at:

http://www.medschool.lsuhsc.edu/Otorhinolaryngology/deafness_article1.asp

Auditory neuropathy is a term that describes a condition in which the child seems to have normal middle and inner ear function, but abnormal function at the level of the auditory nerve. This article gives an overview of auditory neuropathy, testing procedures, characteristics, and prognosis for children and adults with auditory neuropathy.

Deaf-blindness

CATS: Collaboration Achieves Travel Success

CATS is a multimedia resource to help service providers and families develop and promote travel opportunities for persons who are deaf-blind. It was developed as part of a federal matchmaker project (CFDA84.326C) through the US Department of Education, Office of Special Education Programs and the Indiana Department of Education/Division of Exceptional Learners, and administered through the Indiana Deafblind Services Project. The package includes a DVD, a VHS tape and a book entitled “Journeys and Destinations”.

The purpose of the CATS project was to develop a web-based decision-making model regarding movement and travel for students not receiving formal Orientation and Mobility services. It is designed to help teams decide how students who are deafblind or have multiple disabilities could participate more actively in movement and travel during typical routines.

For more information, visit the CATS website at www.catsreview.com or contact the Indiana Deafblind Service project at (800) 622-3035, (812) 237-7887, (812) 237-3022 (TTY), or email DB@indstate.edu .

Silence with a Touch: Living With Usher Syndrome

DVD produced by NTID (National Technical Institute for the Deaf) Rochester , New York .

Produced with assistance form New York State Technical Assistance Project Serving Children and Youth Who Are Deafblind at Teachers College Columbia University with support from the US Department of Education, Office of Special Education Programs under grant #H326C030033

Running time approx 26 minutes

Open Captioned

Copyright 2006

Usher Syndrome is a genetic condition affecting thousands of people. This little known condition causes both hearing and progressive vision loss. In this program, you will meet people of all ages who share how their lives have been affected by Ushers, and how they've learned to adjust and overcome challenges along the way. Their stories will enlighten and inspire you.

To purchase this DVD: Contact NTID

Rochester Institute of Technology NTID
52 Lomb Memorial Drive
Rochester , NY 14623-5604
www.rit.edu/NTID
$29.95 each

Communication

Communicating and Connecting with Learners who are Deafblind: Developing Communication Portfolios.

Manual developed by the New England Center Deafblind Project and Massachusetts Department of Education matchmaker Grant (#CFDA 84.326). http://www.necdbp.org/resources.htm#matchmaker

This 112-page manual is divided into four sections and includes: an overview of the purpose and background of the project, an examination of the unique communication needs of learners who are deafblind, the process of developing communication portfolios, feedback from parents, information on effective educational practices and modifications for vision, hearing and motor challenges, forms used in the data-collection process, and materials, resources, and relevant websites.

Tangible Symbol Systems

http://www.designtolearn.com/pages/ts.html

For children who are unable or not yet ready to learn an abstract symbol system for communication, tangible symbols can provide a concrete alternative method of communication. This web site offers information on creating and using a tangible symbols systems. Topics include: What are Tangible Symbols? Who needs Tangible Symbols? Where to begin? Constructing Tangible Symbols, and more.

Inclusive Practice

Through the Same Door: Inclusion Includes College

* WINNER of 2006 TASH Image Award *

DVD directed by Paul Rossen

Produced and Distributed by: Dance of Partnership Publications, Rich Feldman, Janice Fialka, and Paul Rossen

This inspiring film documents the new movement of fully inclusive education by exploring Micah's desire for a life without boundaries. As a high school student, Micah wanted college experience and he got it. See how it's done, learn how it works, and witness how Micah's journey challenges us all to reexamine what we believe possible.

Running time approx 25 minutes

Copyright 2006 Dance of Partnership & Paul Rossen

To purchase this DVD:

http://www.throughthesamedoor.com

Early Intervention

Early Childhood Gateway

www.cte.jhu.edu/ecgateway

The Maryland State Department of Education, in conjunction with Johns Hopkins University, Center for Technology Education (CTE), developed an on-line training and web-based tutorial for understanding early intervention services (birth to 3 years); the Maryland Individualized Family Service Plan (IFSP); and transition to special education or community services. The side includes state and federal regulations relative to early intervention, as well as trianing on how to develop functional and meaningful outcomes with the family for any child receiving early intervention services.

The Deaf-Blind Baby, A Programme of Care

Author: Peggy Freeman

Implications for Early Intervention Services to Infants who are Deaf-Blind and Their Families

By Deborah Chen, Linda Alsop, and Lavada Minor

Providing early intervention services to infants and toddlers who have both hearing and vision loss is a challenge. One of the goals of Project PLAI (Promoting Learning Through Active Interaction) was to develop resource materials that early intervention programs could use when working with deaf-blind infants and their families. Through the project, curriculum and training materials were developed that emphasized early communication skills. Project PLAI was successful in developing curriculum and training materials that could be used with a variety of families and children. Both early interventionist and family members improved in their ability to recognize and respond to early communication behaviors.

Full article is available at: www.deafblind.com/earlyint.html

For a description of The PLAI modules and a sample case study go to Deaf-Blind Perspectives, Volume 7, Issue 3, Spring 2000 at:

www.tr.wou.edu/tr/dbp/pdf/may00.pdf

Secondary Transition

Assistive Technology

Positive Behavior Support

Families

Assessment

Curriculum and Educational Programs

Research on Literacy

The Center for Literacy and Disabilities Studies in conjunction with the North Carolina Deafblind Project have posted case examples including videos and work samples of two students with deafblindness. Use this link to view case studies of Jake and Matthew, and to learn more about literacy and communication needs of students with deafblindness.

www.med.unc.edu/ahs/clds.html

Instructional Strategies

Integrating Academic, Communication and Motor Programs

This handout explains a simple system for rating cognitive, communication, motor, and vision demands of a child's activities in a simple RED, YELLOW, GREEN system so that a teacher or therapist can balance the various demands that are made on the child at any one time. For example, if a child is in a difficult position, the motor demands would be considered "RED". In that position, you would want the other demands of the task (i.e., cognitive, communication, or vision) to be "GREEN" or skills that the child can perform indepentently. the handouts was developed by Karen Erickson, Ph.D. from the Center for Literacy and Disability Studies, University of North Carolina.

www.med.unc.edu/ahs/clds/resources.html