Rehabilitation Research and Training Center on Employment Outcomes for Individuals Who Are Blind or Visually Impaired

Michele Capella McDonnall, Ph.D.
Interim Director
Mississippi State MS
Website: http://www.msstate.edu/web/media/detail.php?id=5074

Summary

Mississippi State University's Center on Blindness and Low Vision has been selected by the National Institute on Disability and Rehabilitation Research (NIDRR) as the federally-designated Rehabilitation Research and Training Center on Employment Outcomes for Individuals Who Are Blind or Visually Impaired. This RRTC will focus on six research projects:

* Customized Transportation Intervention - will utilize a quasi-experimental design to develop and evaluate a new intervention addressing transportation barriers to employment for persons who are blind or severely visually impaired.

* Business Mentoring Intervention - will utilize a randomized controlled trial to evaluate the effectiveness of a business mentoring program relative to employment outcomes of college seniors who are legally blind.

* VR Agency-Employer Practices - will utilize survey methodology and secondary data analyses to evaluate the effectiveness of existing practices used by VR agencies to interact with employers in their states.

* Randolph-Shepard (R-S) Program Evaluation - will utilize survey methodology to evaluate the current status, present needs, and future possibilities of the R-S Business Enterprise Program.

* Outcomes of Social Security Disability Insurance (SSDI) Beneficiaries - will involve analyses of RSA-911 data to contribute to new knowledge about employment outcomes of SSDI beneficiaries served by State Vocational Rehabilitation.

* Accessibility in the Workplace - Subcontractor American Foundation for the Blind (AFB) will test and evaluate accessibility to individuals who are blind or visually impaired for two common elements of contemporary workplace technology: multifunction document centers and Voice over Internet Protocol.

For more information about this new NIDRR grant, see the MSU press release at the website.

Influencing Outcomes for Children Who Are Deaf-Blind with Cochlear Implants

Kathleen Stremel
Project Director
(785) 864-2459
stremelk@wou.edu

CICDB
Teaching Research Institute
Western Oregon University
345 N. Monmouth Ave.,
Todd Hall
Monmouth OR 97361
TTY: (785) 864-3434
Fax: (785) 864-7605
Website: http://www.wou.edu/cidb/

Summary

The Teaching Research Institute at Western Oregon University has been awarded a Steppingstones of Technology Innovation for Children with Disabilities grant from the U.S. Department of Education for a new research project titled, "Influencing Outcomes for Children Who Are Deaf-Blind with Cochlear Implants." Collaborative partners include the Cincinnati Children's Hospital Medical Center and the Beach Center on Disabilities, University of Kansas. In addition, 15 state deaf-blind projects have written letters of agreement to participate: Arizona, Delaware, Georgia, Illinois, Kansas, Maryland, Massachusetts/Connecticut, Missouri, North Carolina, Nebraska, New Jersey, New York, Oklahoma, Oregon, and Pennsylvania.

Dr. Susan Wiley and I are the co-principal investigators, and I will serve as the project director. Dr. Susan Bashinski, formerly at the University of Kansas and now at Eastern Carolina University will assist in the development of assessment measures and analysis of videotaped data. External consultants will include Dr. Larry Irvin, Professor of Special Education in the College of Education at the University of Oregon, and Dr. Joe Spradlin, Professor Emeritus for the Department of Human Development and Family Life at the University of Kansas. Individual consultants with experience in deaf-blindness will serve as interventionists and trainers in a number of the states.

Preliminary data on children who are deaf-blind and have cochlear implants indicate that there is a great deal of variability in the auditory perception, speech, and language outcomes they experience following cochlear implantation. There are also significant differences in the availability of appropriate intervention services for children (e.g., speech, language, and auditory training) and training opportunities for family members, and this likely has affected outcomes. Our study will address the following four research questions:

1. What effect does age-at-implantation have on child outcomes?
2. What effect does the duration of cochlear implant use have on child outcomes?
3. How do caregivers' communication and interactive behaviors with their children differ before and after implantation?
4. What effect does speech and auditory training that incorporates individualized support prompts have on child outcomes?

The objective of this project is to demonstrate that effective communication strategies in the context of daily home routines positively affect post-implant receptive and expressive communication and language outcomes for children who are deaf-blind.

The 3-year project will focus on children from 6 months to 8 years of age who have severe vision loss and severe/profound bilateral hearing impairment, a population that often has additional disabilities. We will test them before and after implantation using a number of receptive and expressive communication assessment tools. In addition, we will develop a systematic data collection system to examine the communication behaviors of caregivers and their children as they interact during naturally occurring routines. These strategies will include embedding receptive and expressive communication and language opportunities in routines and activities adopted by families.

We will develop and disseminate a number of products over the course of the project. These will include (a) inventories of environmental sounds for home and school environments, (b) individualized assessment strategies, (c) fact sheets for parents and early service providers on effective intervention strategies in real-world contexts, and (d) training modules for service providers on auditory training, communication, and speech and language development. This research project will end in October 2011.

Functional Hearing Inventory Project to Identify Criterion-related Validity and Inter-related Reliability

Roseanna Davidson
Project Director
(806) 742-2345 ext. 246
roseanna.davidson@ttu.edu

Texas Tech University
Virginia Murray Sowell Center
P.O. Box 41071
Lubbock TX 79409-1071
TTY: (662) 325-8693
Fax: (806) 742-2326

Summary

The (Rehabilitation Research and Training Center on Blindness and Low Vision (RRTC) is collaborating with the Virginia Murray Sowell Center for Research and Education in Visual Impairment at Texas Tech University and the University of Arkansas at Little Rock on a five year research project designed to establish the validity and reliability of the Functional Hearing Inventory (FHI) as a tool to help parents and teachers assess how children and youth with deafblindness use their residual hearing within their natural environments. Most infants, children and youth with deafblindness have some useable hearing. Educators of students with deafblindness have had great difficulty creating appropriate educational plans to optimize children's use of their hearing. Maximal use of hearing is of extreme importance in allowing a child to access both the verbal and non-verbal aspects of communication and socialization. The results of the Functional Hearing Inventory (FHI) assessment can be used to help parents and teachers develop an individualized education program that will optimize the child's use of hearing to develop communication skills. It can also serve as a measurement to document progress. This project will end on August 31, 2010.

Usher Syndrome Natural History Project

Dr. William Kimberling
(402) 498-6713 or cell (402) 290-4721
kimber@boystown.org

Boys Town National Research Hospital
555 North 30th Street
Omaha NE 68131
TTY: (800) 835-1468
Fax: (800) 498-6331
Website: http://www.boystownhospital.org/research/molecularstudies/Pages/UsherSyndrome.aspx

Summary

Usher syndrome is reported to be the most common cause of deaf/blindness in peoples of Europe, Australia, and the Americas. It is a genetic disorder that afflicts approximately 45,000 Americans causing a prelingual hearing loss coupled with a slowly progressive loss of vision due to retinitis pigmentosa. There are three clinical types, called 1, 2, and 3 due to changes in at least 10 different genes. This means that there are really at least 10 different types of Usher syndrome. Scientists believe that the type of hearing loss and course of the vision decline may be different depending upon which genetic type a person has. In collaboration with the departments of Ophthalmology and Otolaryngology at the Carver school of Medicine in Iowa, we are collecting clinical and genetic data on Usher people at all ages so that we can better predict what a person has to expect based upon his or her specific genetic type. Not only is this information useful to Usher people and their families, it is critical information needed by clinical scientists in order to design clinical trials. Understanding of Usher syndrome has grown rapidly in the last two decades and many clinicians believe we are close to starting clinical trials. The data gathered in this study will help to tell when clinical intervention will be the most effective and to determine how many people need to be enrolled in order to prove the effectiveness of any proposed treatment.

Rehabilitation Engineering Research Center on Telecommunications Access

Gregg Vanderheiden|Judy Harkins (at Gallaudet University)
(608) 262-6966 (Trace)
info@trace.wisc.edu

Trace Research & Development Center
University of Wisconsin-Madison
2107 Engineering Centers Bldg.
1550 Engineering Dr.
Madison WI 53706
TTY: (608) 263-5408
Fax: (608) 262-8848
Website: http://www.trace.wisc.edu

Summary

The focus of this RERC is to identify telecommunication access barriers in current and future technologies, work with others in the field to identify solution strategies, test them, implement any necessary standards, and assist industry in transferring the ideas into commercial products. The RERC's primary mission is to find ways to make standard systems directly usable by people with all types and degrees of disability, and to work with industry and government to put access strategies into place. The overall program can be viewed as consisting of four interrelated areas, 1) Research, 2) Applied Reseaarch and Development, 3) Transfer and Technical Assistance, and 4) Dissemination, Education, and User Support. The project is a collaboration between the Trace Center and Gallaudet University; it runs from 2005-2010.

Riitta Lahtinen

Project Coordinator fo Deaf Education Sign Language Materials & Finnish Deaf Association
+358 0 5879 233 (home, Finland)
riitta.lahtinen@kolumbus.fi

Pastori Jussilaisentie 4 A 12
00400 Helsinki
Fax: +44 (0) 1255 852 616 (UK)
Website: http://www.kolumbus.fi/riitta.lahtinen

Summary

Riitta Lahtinen is currently doing her Phd. Research work in "Holistic & Interactive Communication Methods with Acquired Deafblind People and Families". She is involved in running International Workshops on Communication for deafblind people, couples, interpreters and professionals in Europe and Scandinavia, focusing on the needs of deafblind people, and training interpreters, planning University academic courses and publications.

TRACE Research and Development Center (TRACE)

(608) 262-6966
info@trace.wisc.edu

University of Wisconsin-Madison
2107 Engineering Centers Bldg.
1550 Engineering Dr.
Madison WI 53706
TTY: (608) 263-5408
Fax: (608) 262-8848
Website: http://www.trace.wisc.edu

Summary

The Trace Center focuses on making off-the-shelf technologies and systems more usable to everyone. The Center's work is in great part funded through the National Institute on Disability and Rehabilitation Research (NIDRR), which is part of the U.S. Department of Education. Trace is designated as the Rehabilitation Engineering Research Center (RERC) on information technology access and is also a partner in the RERC on universal telecommunications access.

The Foundation Fighting Blindness, Inc. (FFB)

(800) 683-5555
info@FightBlindness.org

11435 Cronhill Drive
Owings Mills MD 21117-2220
TTY: (800) 683-5551, (410) 363-7139
Fax: (410) 363-2393
Website: http://www.FightBlindness.org

Summary

MISSION: The urgent mission of The Foundation Fighting Blindness is to drive the research that will provide preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases.

SERVICES: For a $25.00 annual membership fee, FFB offers information and referral services for affected individuals and their families as well as for doctors and eye care professionals. The Foundation also provides comprehensive information kits on retinitis pigmentosa, macular degeneration, and usher syndrome. Our newsletter, InFocus, and our e-newsletter, InFocus online, present articles on coping, research updates, and Foundation news. InFocus is published 3 times per year; InFocus online is sent approximately 3 times per year. Our national conference is usually held every year.

National Center for the Study and Treatment of Usher Syndrome

Dr. William Kimberling (Boys Town)
(402) 498-6713
kimber@boystown.org

Boys Town National Research Hospital
555 North 30th Street
Omaha NE 68131
TTY: (800) 835-1468
Fax: (402) 498-6331
Website: http://www.boystownhospital.org/research/molecularstudies/Pages/UsherSyndrome.aspx

Summary

The study of Usher syndrome is among the most promising research programs underway at Boys Town National Research Hospital. Foremost among the hospital's achievements has been the identification of three of the 10 genes suspected of causing the disorder. The discovery of these genes provides the first solid foundation on which to build knowledge about the underlying genetic defect responsible for Usher syndrome and the long-term outlook for its victims. Hospital geneticists have enlisted the active participation of more than 2,000 Usher patients and their families in their Usher Syndrome research. Data from this collaboration is yielding impressive results, including statistical information regarding prevalence of the disorder, allowing researchers to make informed predictions about the number of people carrying Usher genes. Long-term goals of these studies involve the development of medical interventions to arrest the progress and reverse the damage of the disorder, and to provide the methods and technology for treatment and rehabilitation.