Usher Syndrome - Educational Implications Bibliography

by DB-LINK on May 1, 2011
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This is a partial list of materials on this topic available from the DB-LINK Catalog Database.  If you have additional questions, please contact us via email:

Updated 5/2011


Early Diagnosis of Usher Syndrome - Educational Opportunities and Challenges: Achieving Quality in Education: Strategies for Change --Miles, Constance. 14th DbI World Conference on Deafblindness Conference Proceedings, September 25-30, 2007, Perth, Australia. (2007) This is the text of a workshop presentation given at the 14th DbI World Conference on Deaf-Blindness. The presentation describes the ability now to screen infants for Usher syndrome. A new medical model of collaboration between educators and genetic scientists and neurologists is emerging.


Education Considerations for Students with Usher Syndrome --Arkansas Project for Children with Deafblindness. Little Rock: Arkansas Department of Education, Special Education. (2004) Highlights information about Usher Syndrome including behavioral symptoms, emotional considerations, screening techniques, and educational adaptations for the classroom.


Focus....On Young People Who Have Usher: Too Much, Too Young? --Wolf, Francesca. TALKING SENSE, vol. 46, #3, Autumn/Winter 2000, pp. 14-19. (2000) This article discusses the impact of Usher syndrome on adolescents. Discusses the impact of Usher syndrome on a teenagers life, and the importance of developing one's identity. Stresses the importance of children understanding the diagnosis of Usher when it is known. Three personal narratives are included by three teens living with Usher syndrome.


Functional Implications & Environmental Modifications with Students Who Have Usher Syndrome --Jordan, Beth. Helen Keller National Center: (2000) This is a list of tips for teachers, interpreters, students with deafblindness, family members, classmates, and members of the community to take into consideration in their relationships with deafblind people. Environmental tips for the classroom, lighting, and reading are included as well. Also available in electronic format.


Global Democracy: Israeli Role Model Program for Deaf-Blind Children Draws Worldwide Attention --Toubi, Deborah. Reprinted by permission of Deaf-Blind Perspectives. (2007) This article describes a model program initiated, developed and run by the Center for Deaf-Blind Persons in Tel Aviv, which pairs children who have Usher syndrome with mentors in their twenties who have the same syndrome. By setting a positive example, the mentors help build self-confidence and learn to cope with the obstacles of their situation.


Improving Educational Services for Students with Usher Syndrome Columbus, OH: Great Lakes Area Regional Center for Deafblind Education. Usher Syndrome Conference, April 22, 2002. (2002) This is a set of video tapes from a conference that was held in April, 2002. The two topics presented on this tape include information on what Usher Syndrome is, and characteristics and screening of Usher Syndrome. The presenters discuss the importance of diagnosing Usher Syndrome as soon as possible, the diagnostics needed and how to get them, as well as the behavioral symptoms observed. Also includes a section discussing how to prepare a student with Usher Syndrome for education, employment and independent living. Tape 1


Improving Educational Services for Students with Usher Syndrome: Usher Syndrome Panel Columbus, OH: Great Lakes Regional Center for Deafblind Education. Usher Syndrome Conference, April 22, 2002. (2002) This video presents a panel of individuals with Usher Syndrome. The 5 individuals describe their experiences of having and adjusting to Usher Syndrome. They describe how they found out they had Usher Syndrome, how they have adapted to it, the biggest challenges they have faced, and the best supports they have received. They also describes some of the everyday activities that they enjoy doing despite having visual and hearing impairments, and also describe their work history and some accommodations that have been useful to them. Tape 2


Improving Educational Services for Students with Usher Syndrome Columbus, OH: Great Lakes Regional Center for Deafblind Education. Sr. Bernadette Wynee, moderator. (2002)This two-part video first provides tips on providing information to children about their visual impairment. It describes the process of introducing tracking and tactile signing to a child who may be in denial of his/her visual impairment. Participants of the conference experience what it is like to have Usher Syndrome by using tunnel vision glasses and using tactile sign. Describes the importance of using directional words to clarify language. Provides examples of simple accommodations that can be used to facilitate communication in the classroom. The second section of this video describes the various transitions that a person with Usher Syndrome often goes through. Describes the process of transitioning to using sign language, then tactile sign language, losing one's vision, and losing one's primary method of communication, and subsequently one's friends and relationships. Describes the process one goes through to gravitate towards a more deaf-blind community and supports often leaving behind hearing and/or deaf friends. Provides 3 case examples of students with Usher Type 1, 2, and 3 respectively and the individual transitions they each went through in their lives. Tape 3


Improving Educational Services for Students with Usher Syndrome: Assistive Technology Columbus, OH: Great Lakes Regional Center for Deafblind Education. Dr. Jeffrey Bohrman - moderator. (2002) Dr. Jeffrey Bohrman presents several examples of assistive technology that have been useful in his and other deafblind people's lives. He provides samples of large display clocks, sonic boom clocks, doorbells, baby monitors, smoke detectors, vibrating pagers, alert systems, large visual displays on TTY's, software programs and other devices for use in everyday life. Tape 4


Is Vision Important in Sign Language? A BSL Study in People with Usher Syndrome Exploring Changes in the Use of Space During Signing --Reed, Sarah. 14th DbI World Conference on Deafblindness Conference Proceedings, September 25-30, 2007, Perth, Australia. (2007) This is a brief summary of a workshop presentation given at the 14th DbI World Conference on Deaf-Blindness. This presentation describes a study investigating changes in signing space that have been empirically observed to occur in people with Usher Syndrome and that have been imputed to the reduced peripheral field (tunnel vision) caused by Retinitis Pigmentosa.


Nebraska Usher Syndrome Screening Project --Coonts, Teresa; Giittinger, Sally; Kimberling, Bill; Srb, Steve. Omaha, Nebraska: Nebraska Project for Children and Youth with Deaf-Blindness. (2002) This manual was designed to help school personnel conduct Usher Syndrome screenings. It provides information about Usher Syndrome, screening instructions, screening forms (available in Spanish), and state and national resources. It includes descriptions of Usher Types I, II, and III, causes of Usher syndrome, roles of the screener and interpreter, and information about how to interpret screening results. For copies, contact Teresa Coonts, Project Coordinator, at 402-595-1810 or


Psychological and Social Issues of Children with Type I Usher Syndrome --Metcalf, Chad. DEAF-BLIND AMERICAN, vol. 44, #1, Jan-Mar 2005, pp. 38-44. (2005) By exploring the physical and psychological dimensions of Usher Syndrome, this article seeks to help the reader identify better with children who have Usher Syndrome. It describes briefly the different types of Usher and symptoms associated with the syndrome. It also discusses informing the child about their diagnosis and the impact that could have including describing the five stages of grief and how that applies to a child with Usher Syndrome. Social issues such as friendship, independence and social activities are discussed.


A Sign to Remember --Podmore, Ron. Tacoma, WA: Puget Sound Publications. (2002) Fictional story of a teenage boy as he adjusts to changes related to having Usher Syndrome.


Silence with a Touch: Living with Usher Syndrome Rochester, NY: National Technical Institute for the Deaf. (2006) This DVD introduces several individuals, from early adolescence to adulthood, who are living with Usher Syndrome, a genetic condition that causes both hearing loss and progressive vision loss. The individuals profiled are shown in a variety of settings including at school, at home, and in places of employment. All speak about how Usher Sydnrome has changed their lives and about the adjustments and challenges they face. It was produced by the National Technical Institute for the Deaf in cooperation with the New York State Technical Assistance Project Serving Children and Youth Who Are Deafblind.


Successful Transition of Students with Usher Syndrome from School to Work or Continuing Education --Miles, Constance; Davidson, Roseanna. --ICEVI. (2002) This is a paper presented at the International Council for Education of People with Visual Impairment (ICEVI) world conference in 2002. With ongoing opportunities for independence, self-confidence, and communication the student with Usher Syndrome is able to realize her strengths. Successful job placement occurs when these strengths are combined with assistive devices, education and rehabilitation professionals, and opportunities that serve as a bridge from the school to work environment. Once the bridge is crossed, the student has an opportunity to use the skills that she acquired during her school years. Available on the web:


They Should Know They Have Usher Syndrome Around Here [Dissertation]: College Students Who Are Deafblind --Arndt, Katrina. Ann Arbor, MI: UMI Dissertation Services. (2005) This study examined how post-secondary education students who have Usher Syndrome negotiate identity, social relationships and services in higher education settings.


Tips for Students with Usher Syndrome : Information Sheet --Baumgarner, Juli. California Deaf-Blind Services. Fact Sheets from Colorado Services to Children with Deafblindness. (2002) Lists accommodations and adaptations that can be made in a classroom for students with Usher Syndrome. Includes suggestions for lighting, seating, classroom environment, materials, sign language techniques, orientation and mobility, and self advocacy. Available on the web:


Understanding Usher Syndrome: An Introduction for School Counselors --DiPietro, Lorraine J. (Ed.) Sands Point, NY: Helen Keller National Center. (2002) This book provides information and resources about Usher Syndrome for counselors and educators who serve school-age students. It introduces the reader to basic information about the syndrome, stressing developmental and emotional issues that commonly arise for students and parents, to help them integrate this diagnosis into their lives. It also includes sections about the concomitant hearing loss and vision loss in Usher Syndrome and its effect on communication, career planning, and educational programming. Personal accounts by adults with Usher Syndrome and parents of children with Usher Syndrome provide first hand experiences. Significant program resources and recommended readings are included for future reference.


Usher Children Project --Moller, Bettina U. NEWS - The Information Center for Acquired Deafblindness, NO. 1, Spring 2007, p. 21. (2007) This article describes a project, set up in 2005 with the help of the Information Center (Denmark), which worked on finding new models for optimizing the professional guidance and advising of parents of children born with Usher syndrome. The hope was that there could be a movement from linear consulting with many separate stages to a more circular form, which included both the past and the future.


Usher Syndrome: The Importance of an Early Detection, Educational Implications --Costa, M.L.Perea. Rome, Italy: REVISTA DE LOGOPEDIA, FONIATRIA Y AUDIOLOGIA, vol. XX, #1, pp. 37-43. (2000) This article provides information on Usher Syndrome specifically for people with Usher, their relatives, and for professionals working in the fields of deafness, blindness, or deafblindness. The aim is to get an early detection of the syndrome which minimizes its effects and ensures a greater quality of life. Contents include definition, typology, symptoms of Retinitis Pigmentosa, educational implications and International Contacts. Available only in Spanish.


Usher Syndrome: Identification and Understanding --Poff, Lisa E., J.D.; Goehl, Karen S., M.S.; Lechner, Linda (Ed.); Mayfield, Nancy (Ed.) Terre Haute, IN: The Indiana Deafblind Services Project. (2000) This kit includes a booklet, screening forms, and two videotapes. The materials provide basic information about Usher Syndrome--what it is, how to recognize it, and simple tests to determine whether a person should be referred for medical testing. The booklet includes an overview of screening tests and sample forms. It also includes factors to consider in the classroom such as lighting, seating arrangements, print size, and color. The first video, "Understanding the Diagnosis," provides information about Usher Syndrome, including descriptions of the three types including details about hearing loss and retinitis pigmentosa. The second video, "Screening for Signs of Risk," addresses informal screening to check balance and vision including how to conduct tests and how to train screeners. The second half of the video explains the process using American Sign Language.


Usher Syndrome: NETAC Teacher Tipsheet --Lago-Avery, Patricia. Northeast Technical Assistance Center (NETAC) (2001) This is a fact sheet on Usher Syndrome. It provides brief information on the signs and symptoms of Type I and Type II Ushers. Provides information on counseling issues for students with Ushers and strategies and tips for working with college-aged students with Usher syndrome. Describes strategies for educational, personal, social and life issues.


Usher Syndrome --Davenport, Sandra L.H. Austin, TX: Texas Deafblind Project. 2005 Texas Symposium on Deafblindness. (2005) Discusses Usher Syndrome, its symptoms, different types of the syndrome, gene studies and resources for Usher Syndrome.


Vision Care for All --Guest, Mary. NB MAGAZINE, Issue 1, January 2006, pp.31-35. (2006) This article gives the background to new guidelines which highlight the need for lifelong vigilance in checking the vision of deaf people. In April 2004, Vision care for all deaf children and young people was launched at the British Library in London by the National Deaf Children's Society and Sense, the National Deafblind and Rubella Association. This publication was the result of five years of collaboration between NDCS and Sense, and with a working party drawn from a wide cross section of people involved with the care of deaf children.  

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