S-K RERC Future Directions in Blindness and Low Vision

A State-of-the-Science Conference On Rehabilitation Technology & Methods For a Changing Population

June 2004

Summary Report

(For electronic copies of full report, contact the RERC)

Rehabilitation Engineering Research Center
The Smith-Kettlewell Eye Research Institute

Supported by the
National Institute on Disability & Rehabilitation Research, and The Smith-Kettlewell Eye Research Institute


Photo montage of conference attendees.

Future Directions in Blindness and Low Vision

A State of the Science Conference

June 4, 2004

Supported by the
National Institute on Disability and Rehabiliation Research (NIDRR)
and
The Smith-Kettlewell Eye Research Institute

Planning Committee: John Brabyn PhD, Arthur Jampolsky MD, Deborah Gilden PhD, William Gerrey, Joshua Miele PhD

Logistics Coordinator: Ella Forsiak

For print or electronic copies of the complete report, contact:

Rehab Engineering Research Center on Blindness & Low Vision
The Smith-Kettlewell Eye Research Institute
2318 Fillmore Street
San Francisco, Ca 94115
(415)345-2000

http://ski.org/rehab

rerc@ski.org

Agenda

Executive Summary

The goal of this conference was to assess the current state of the art in research and development for the blind and visually impaired population, and identify the gaps where action is needed. Participants were drawn from a cross-section of fields and disciplines, including clinicians, rehabilitation teachers and professionals, manufacturers, researchers. Consumers were also well-represented; well over one third of the participants were blind or visually impaired. Prior to the conference, participants were polled for their suggestions as to what topics should be included. The resulting agenda was grouped under the following topics: infancy and school age needs, travel, information access, vocational and daily living needs, access to graphical information, disease and deficit-specific problems and solutions, and functional assessment of visual impairments. The discussions helped to identify and categorize many areas of remaining needs in the field.

Two major themes emerged from the suggestions and from the meeting as a whole. One was the importance of the changing target population. The rapid increase in the number of people in the over-65 age group and the increasing incidence of co-existing impairments were highlighted. In particular, the need to address the combined effects of vision and hearing impairments was emphasized. In the older age groups, additional physical and cognitive impairments are becoming more common, and the increasing incidence of cortical and retinal impairments in babies is still a concern that needs addressing. While these problems are widely acknowledged, they are also very challenging, and little has been done to address them. To further complicate the picture, the advent of retinal implants will produce another new “low vision” population.

The other theme that emerged was the need for better communication and dissemination of information between the various stakeholders in the field: researchers, clinicians, rehabilitation professionals, teachers, manufacturers and consumers. Many examples were identified in which one group has part of the solution but does not communicate it with the others.

A substantial list of future research topics was compiled from the conference presentations and discussions. Summarized below are some examples that were brought out multiple times.

Examples of Research Needs

Examples of Communication Needs

The above is only a sample; a more complete listing of needs and future directions that arose from the meeting appears at the end of this report in the section entitled Examples of Research Topic Areas Arising from the Conference.

Future Directions in Blindness and Low Vision

A State-of-the-Science Meeting

Rehabilitation Engineering Research Center

The Smith-Kettlewell Eye Research Institute

San Francisco

June 4, 2004

Overview and Broad Themes

This report covers a State-of-the-Science Conference held in San Francisco on June 4, 2004, sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR) and The Smith-Kettlewell Eye Research Institute in support of the Rehabilitation Engineering Research Center on Blindness and Low Vision. Its purpose was to assess the current state of the art and identify needs, problems and opportunities for future research.

Prior to the conference, all participants were invited to submit suggestions for discussion topics. These were collated and organized into broader topic areas. Two striking themes emerged from this process. One was the importance of considering the ongoing changes in the characteristics of the target population. These include the rapid increase in the over-65 age group, the increasing incidence of co-existing impairments (especially vision and hearing combined with physical impairment in the older age groups), and the burgeoning incidence of cortical and other impairments in the youngest age groups. The other theme was the need for better communication and dissemination of information between the various stakeholders in the field – researchers, clinicians, rehabilitation professionals, teachers, manufacturers and consumers.

Conference Structure

The conference program was produced in large print and Braille. Computers and projection screens were used for real-time note taking in large print, designed to be as easily visible as possible to the participants.

Plenary Session

The meeting opened with a plenary session featuring keynote addresses by Lawrence Scadden, Ph.D. and Gordon Legge, Ph.D., on blindness and low vision, respectively. Their goals were to set the scene, point out some of the gaps in the current state of the art and stimulate thinking about research needs from the informed consumer’s viewpoint. In these and all other presentations at the conference, speakers were encouraged to take a broad, futuristic view of the subject matter rather than presenting their own work.

Discussion Groups

Following the plenary session, participants divided themselves into two discussion groups, one focusing on blindness, the other on low vision. Both groups were charged with including consideration of co-existing hearing impairments in all discussions. Within each group, the topic areas listed below were identified by the process discussed earlier. Some participants had been commissioned prior to the meeting to introduce each topic (but forbidden from dwelling on his or her own work) and stimulate discussion. Substantial time slots at the end of each group meeting were reserved for “other topics” that people wished to bring up or that arose from the discussions.

Low Vision Topics:

Blindness Topics:

Summary Session

Another plenary session was held at the end of the meeting to allow the blindness and low vision groups to report their findings, and to provide an opportunity for general discussion.

Conference Participants

An excellent response from invitees from all over the United States resulted in geographically diverse participation. There was also a wide range of participants including consumers, researchers, manufacturers, clinicians, rehabilitation providers, and special education teachers. We were fortunate in having many prominent members of the blindness and low vision worlds in attendance. Well over one-third of attendees were blind or visually impaired and approximately another third were persons involved in direct service delivery, helping to keep the focus on real needs and practical solutions. A complete list of participants appears at the end of this report. Materials for the participants were produced in Braille, print and diskette versions.

Photo conference material.

Plenary Wrap-up Session

In the concluding session, the following reports were presented:

  1. Robert Massof, Ph.D. summarized the discussions of the Low Vision Breakout Group.
  2. Harry Levitt, Ph.D. summarized observations from the Low Vision breakout group from the point of view of combined vision and hearing deficits.
  3. Stephen Mendelsohn, Esq. summarized the discussions of the Blindness Breakout Group
  4. Matt Bakke, Ph.D. summarized observations from the Blindness Group from the point of view of combined vision and hearing deficits.

Summary of Main Themes

Based on the information presented by the keynote speakers and topic leaders, the content of the discussions, and the reports at the plenary wrap-up session, the following main themes emerged from the Conference.

Changing Needs of the Aging Population:

It is clear that the target population of persons with visual impairments is aging, and that needs are changing accordingly. Visual impairments among the older age group are widely variable in type and degree, as well as influenced by environmental conditions and task. There is therefore a need for techniques of functional assessment, prediction, rehabilitation devices and strategies that are adaptable to changing visual deficits and lifestyles. The situation is complicated by the incidence of multi-sensory, and combined sensory, physical and cognitive impairments in this group (see below). More research is needed into the rehabilitation problems and solutions for the older age group in general, especially since the traditional emphasis of rehabilitation has been on the young and working age groups.

Increasing Incidence of Multiple Disabilities/Deficits:

It is apparent that the increasing incidence of combined visual, auditory, cognitive and physical deficits is a major trend which is universally acknowledged, but one for which few if any solutions exist to date. In the youngest age groups, the increasing success of medicine in saving premature infants is resulting in more children with combinations of multi-sensory, physical and cognitive impairments. At the other end of the age spectrum, visual impairment and disability is more and more commonly found in conjunction with hearing deficits, cognitive impairment and reduced physical function. Even in cases where the visual deficit by itself may be less than that which is considered disabling, the synergistic result of the combined deficits can have a devastating effect. The nature of the interactions among these impairments and their combined impact on educational, vocational and daily living tasks is poorly understood. It is therefore not surprising that few rehabilitation strategies have been developed to cope with the combined deficits. Clearly, much more work is needed in this area.

Other Future Changes in Target Population and Needs:

Other likely future changes in the nature of our target population also need to be considered. For example, while few members of today’s oldest age groups do not use computers, future members of this age groups will increasingly demand methods of accessing computers and other information technology. In the younger age groups, the recent wave of infants with cortical visual impairment will be reaching school and employment age, in most cases without any good strategies for effective functioning in these settings. The likely future introduction of artificial visual prostheses, whether electronic or cell implants, will result in vision which is far less than “normal,” creating a new target population whose rehabilitation needs will have to be addressed. Depending on the patient characteristics targeted by the various approaches, these individuals could range from persons who have never had any vision and suddenly acquire a limited amount, to those who have undergone a gradual decline in vision and have it restored to some partial level. Similarly, emerging medical treatments and preventive measures for blinding diseases such as macular degeneration are likely to slow down the course of vision loss in these diseases, or even arrest it at some point of decline. Optimal rehabilitation strategies for the resulting populations will need to be systematically explored.

Inter-Professional Communication:

It became clear that many of the problems faced by our field lie in the imperfection of communication and information exchange among the various players: researchers, consumers, clinicians, rehabilitation professionals, manufacturers, educators etc. For example, more communication among consumers, clinicians and researchers would improve both the identification of problems and the development of appropriate solutions. More communication among rehabilitation researchers, professionals and industry would undoubtedly help reduce the development of products that are difficult to use for persons with sensory disabilities. Better explanations by clinicians to their patients of the functional nature and consequences of the complex visual deficits caused by diseases such as maculopathies would help consumers know what to expect and how best to develop work-around strategies. Many other examples can be given, but it is clear that each group needs to undertake more actively reach out to the others to more effectively address individuals’ needs.

Examples of Future Research Topic Areas

In the following section are some examples of topics that were highlighted in the discussion groups as those most in need of more research, communication and policy action. The list is not exhaustive, and the reader is referred to the conference presentations and discussions above for more details.

Examples of Research Topic Area Arising from the Conference

General:

Infant/Childhood/Educational Needs (Blind & Low Vision)

Travel Needs (Blind & Low Vision)

Information Access (Blind & Low Vision)

Vocational & Daily Living Needs (Blind)

Access to Graphical Information (Blind)

Disease/Deficit Specific Problems (Low Vision)

Functional Assessment (Low Vision)

Non-Research Needs: Communication and Training

CONFERENCE PARTICIPANTS

Albert Alden

Senior Engineer

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2110

al@ski.org

Aries Arditi, Ph.D.

Director of Vision Research

The Lighthouse, Inc.

111 East 59th St.

New York, NY 10022

212-821-9500

aarditi@lighthouse.org

Ian Bailey, O.D.

Prof. of Optometry & Vision Science

UC Berkeley School of Optometry

Minor Hall

Berkeley, CA 94720

510-642-1987

bailey@spectacle.berkeley.edu

Matthew Bakke

Director, RERC on Hearing Enhancement

Gallaudet University

800 Florida Avenue NE, MTB 116

Washington, DC 20002

202-651-5335

matthew.bakke@gallaudet.edu

www.hearingresearch.org

James C. Bliss, Ph.D.

Retired

3472 Robleda Road

Los Altos Hills, CA 94022

jim@jbliss.com

John A. Brabyn, Ph.D.

Director, RERC on Blindness & Low Vision

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2110

brabyn@ski.org

Brian Brown, Ph.D.

Special Research Associate

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2179

brian@ski.org

Vladimir Bulatov, Ph.D.

ViewPlus Technologies

1853 SW Airport Ave.

Corvallis, OR 97333

541-754-4002

vladimir.bulatov@viewplus.com

Peter Cantisani

RL & Associates, Inc.

Assistive Technology Manager

340 Bryant Street, #205

San Francisco, CA 94107

peterc@rla.com

Michael Cole

Orientation Center for the Blind

400 Adams St.

Albany, CA 94706-1197

510-559-1201

mcole@dor.ca.gov

August Colenbrander, M.D.

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2000

gus@ski.org

James Coughlan, Ph.D.

Associate Scientist

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2146

coughlan@ski.org

William Crandall, Ph.D.

Scientist

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2111

bc@ski.org

Scott Duncan

Rose Resnick Lighthouse for the

Blind and Visually Impaired

214 Van Ness Avenue

San Francisco, CA 94102

4115-431-1481

sduncan@lighthouse-sf.org

Donald Fletcher, M.D.

Univ. of Alabama at Birmingham

Center for Low Vision Rehabilitation

1720 University Drive, Ste. 380

Birmingham, AL 35233

205-488-0736

floridafletch@msn.com

Thomas Fowle

Programmer

RERC for Blindness & Low Vision

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2123

fowle@ski.org

Anne M. Fung, M.D.

Fellow

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2120

anne@ski.ort

William Gerrey

Senior Engineer

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2125

bilge@ski.org

Deborah B. Gilden, Ph.D.

Associate Director

RERC for Blindness, Low Vision, and Multi-Handicapped

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2114

debby@ski.org

Reginald Golledge, Ph.D.

Geography Department

Ellison Hall 3616-A

UC Santa Barbara

Santa Barbara, CA 993106-4060

805-893-2731

golledge@geog.ucsb.edu

Gregory Goodrich, Ph.D.

Supervisory Research Psychologist and Program Dir.,

VA Palo Alto Optometric Research Fellowship Program

VA Palo Alto Health Care System

WBRC (124)

3801 Miranda Avenue

Palo Alto, CA 94304

650-483-5000, x 64385

Gregory.Goodrich@med.va.gov

Mark Grosch

Geography Department

Ellison Hall 3616-A

UC Santa Barbara

Santa Barbara, CA 93106-4060

Gunilla Haegerstrom-Portnoy, O.D., Ph.D.

Prof. of Optometry & Vision Science

UC Berkeley School of Optometry

Minor Hall

Berkeley, CA 94720

510-642-9966

ghp@uclink.berkeley.edu

Antoinette Heinze, Ph.D.

Northern Illinois University

Faculty of Special Education

De Kalb, Illinois 60115

815-753-8459

heinze@niu.edu

Arthur Jampolsky, M.D.

Co-Director, RERC, and

Founder

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2048

aj@ski.org

Daniel Kish

Executive Director

World Access for the Blind

4661 Grisham Avenue

Long Beach, CA 90805

866-396-7035

dankish@worldaccessfortheblind.org

Jerry Kuns

Technology Specialist

California School for the Blind

Technology Lab.

500 Walnut Ave.

Fremont, CA 94536

510-794-3800

jkuns@csb-cde.ca.gov

Lynne Laird

Andlyn Braille Press

2909 Forest Avenue

Berkeley, CA 94705

510-845-5858

andlyn@aol.com

Gordon E. Legge, Ph.D.

Professor

Department of Psychology

University of Minnesota

75 East River Road

Minneapolis, MN 55455

legge@umn.edu

Harry Levitt, Ph.D.

Consultant

P.O. Box 610

Bodega Bay, CA 94923

707-875-2289

harrylevitt@earthlink.net

Lori Lott, Ph.D.

Research Associate

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2122

lott@ski.org

William Loughborough

SKERI Associate

395 Vosberg Lane

Goldendale, WA 98620

love26@gorge.net

Amanda Hall Lueck, Ph.D.

Associate Professor

Dept. of Special Education

San Francisco State University

1600 Holloway Avenue

San Francisco, CA 94132

415-338-1080

amandal@sfsu.edu

Manfred MacKeben, Ph.D.

Scientist,

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2112

mm@ski.org

Roberto Manduchi, Ph.D.

Assistant Professor, CE Dept.

Basking Engineering 2237

UC Santa Cruz

Santa Cruz, CA 95064

831-459-1479

manduchi@soe.ucsc.edu

Jim Marston, Ph.D.

Geography Dept.

Ellison Hall, 3616-A

UC Santa Barbara

Santa Barbara, CA 993106-4060

805-893-7274

marston@geog.ucsb.edu

Robert W. Massof, Ph.D.

Director, Lions Vision Research and Rehabilitation Center

Wilmer Ophthalmological Institute

Professor of Ophthalmology

550 North Broadway, 6th Floor

Baltimore, MD 21205

410-955-5033

rmassof@lions.med.jhu.edu

Mike May

President

Sendero Group

1118 Maple Lane

Davis, CA 95616

MikeMay@SenderoGroup.com

Stephen Mendelsohn, Esq.

Attorney/Advocate

528 W 111th Street, Apt. 7

New York, NY 10025-1934

smendel@panix.com

Joshua A. Miele, Ph.D.

Fellow

RERC for Blindness, Low Vision, and Multi-Handicapped

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2113

jam@ski.org

Jeff Moyer

VP Marketing, Talking Signs Inc.

Adjunct Faculty, Kent State Univ.

670 Radford Drive

Cleveland, OH 44143-1905

moyer@jeffmoyer.com

Richard Oehm

President

Oehm Electronics

2194 C Galveston Avenue

San Jose, CA 95122

408-971-6250

oehmelec@tdl.com

Eliezer Peli, O.D.

Senior Scientist

Schepens Eye Research Institute

20 Staniford Street

Boston, MA 02114-2500

617-912-2597

eli@vision.eri.harvard.edu

Damien Pickering

Freedom Scientific

2242 Lisa Lane

Pleasant Hill, CA 94523

800-444-4443 x 1173

dpickering@freedomscientific.com

Ruth S. Poole

Chief Administrative Officer

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2043

ruth@ski.org

Sandra Rosen, Ph.D.

Coordinator, Program in Orientation & Mobility

Dept. of Special Education

San Francisco State University

1600 Holloway Avenue

San Francisco, CA 94132

srosen@sfsu.edu

David Ross

VA Rehab Research & Development Center

Atlanta, GA 30033

404-321-6111x 6817

davidross1@mindspring.com

Lawrence Scadden, Ph.D.

Consultant

76-177 Kamehamalu Street

Kailua-Kona, HI 96740

LScadden@hawaii.rr.com

Marilyn Schneck, Ph.D.

Scientist

Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2106

mes@ski.org

Ron Schuchard, PhD

Director

Atlanta VA Rehabilitation R&D Center1670 Clairmont Rd

Decatur, GA 30033

rschuch@emory.edu

Huiying Shen, Ph.D.

Senior Programmer-Analyst

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2141

hshen@ski.org

Helen J. Simon, Ph.D.

Scientist

The Smith-Kettlewell

Eye Research Institute

2318 Fillmore Street

San Francisco, CA 94115

415-345-2071

helen@ski.org

Marc Stenzel

Vice President, Sales

Telesensory Inc.

520 Almanor Avenue

Sunnyvale, CA 94085

408-616-8700

mstenzel@telesensory.com

Martin Winderl

Engineer

The Smith-Kettlewell Eye Research Institue

2318 Fillmore Street

San Francisco, CA 94115

415-345-2126

martin@ski.org