In This Issue
A Personal View of Changes in Deaf-Blind
Population, Philosophy, and Needs
Getting In Touch - The Perkins Museum
Letter To The Editor
For Your Library
A Personal View of Changes in Deaf-Blind
Population, Philosophy, and Needs
the past quarter century there have been significant changes in the population
of children who are deaf-blind. At the same time there has been a steady
increase in understanding and knowledge of effective educational strategies to
help this group of children. As deaf-blind education specialists, we have
experienced firsthand the influence of these changes on our work with children
and their parents, teachers, and other service providers. In this article we
relay some of our own experiences and offer our personal perspective on changes
that have occurred in the field.
Changes in Population
In 1983, a national survey of
the population of children with deaf-blindness in the UK suggested that
Congenital Rubella Syndrome was declining as a leading cause of deaf-blindness,
while the number of other identified etiologies was steadily increasing, as was
the proportion of children with additional severe disabilities. The author of
the survey made the point that, "If this apparent change in population is a
long-term one then it has implications for the provision of placements,
staffing and the development of appropriate teaching techniques and appropriate
measures for assessment" (Best, 1983, p. 11).
Subsequent writers (Collins, Majors, & Riggio,
1991; Riggio, 1992; Brown, 1997; Chen, 1998; McInnes, 1999; Miles & Riggio,
1999) have confirmed that the change in population has, indeed, been long-term,
and has gone further than could have been imagined 20 years ago. This is also
supported by data from the 2003 National Deaf-Blind Child Count, which lists
more than 70 possible causes of deaf-blindness and identifies characteristics
that underscore the complexity of these children. Of the approximately 10,000
children on the census, 60% also have physical impairments, 68% have cognitive
impairments, and 40% have complex health care needs (National Deaf-Blind Child
Count Summary, 2004).
Explanation of these changes is complex, and there
are many contributing factors (Brown, 1997). The availability of a rubella
vaccine and associated public health campaigns drastically decreased the
incidence of Congenital Rubella Syndrome. Advances in medicine have increased
survival rates for infants with severe disabilities and for premature infants
(approximately 10% of children on the national child count are deaf-blind as a
result of complications of prematurity). There has also been a growing
awareness of the prevalence of sensory impairments and sensory processing
difficulties in the population of children with multiple and profound
disabilities. Two decades ago, many of these children would probably have been
perceived simply as having "severe brain damage" or "mental retardation"
without any consideration of their sensory status.
As the needs of deaf-blind children have become
more complex, educators, especially those working in an advisory capacity with
young children, have had to familiarize themselves with an increasingly complex
array of medical and therapeutic procedures and equipment. Of course,
significant levels of complexity and learning difficulty, as well as a very
wide range of ability, have been a feature of the population since the early
days of deaf-blind education. Then and now, educators have been introducing
teachers and parents to long-standing educational methods and techniques in the
specialty of deaf-blindness, supporting children who are following academic
curricula in regular classes, training staff and family members in techniques
like tactile signing and adapted orientation and mobility, and helping vision
specialists to adapt Braille instruction. They have also supported children who
are functioning at the earliest stages of awareness and communicative ability.
But now, these same educators are increasingly likely to be involved in cases
where it may seem that their primary role is to help a family to implement an
early educational program entirely within the confines of overwhelming medical,
nursing, and therapy routines that fill up most of the childs day. These
include the use of ventilators, suctioning, gastrostomy tube feedings,
techniques for monitoring oxygen saturation, hormone treatments, a growing
range of drug therapies, sensory integration therapy, physical therapy, and
technological innovations like cochlear implants.
Many of the questions put to educators by parents
as primary concerns these days are related to medical and therapy issues that
are not (and have not traditionally been) within the area of competence and
responsibility of teachers. Medical issues influence not only how we teach
children but sometimes even what we teach. In order to help a child gain an
understanding of his own environment and activities, early vocabulary that is
part of a communication and language program might include ways to represent
such things as "oxygen mask," "suction tube," and "G-tube button cleaning." In
a small number of cases, a childs "natural environment" might be a
special room built on to the family home, complete with everything to be found
in a hospital room including round-the-clock nursing, with peers, and even
siblings, excluded because of the risk of infection.
Accurate predictions of developmental progress are
increasingly confounded by episodes of regression that result from recurrent
illnesses and hospitalizations. It is often difficult to ascertain the exact
cause of significant distress, loss of function, or behavioral problems in
children with this level of complexity.
The increasing importance of medical issues has
also been noted in older children and adults. As the population identified as
having deaf-blindness back in the 1960s and 1970s has matured, a further change
and challenge has been the discovery of late-onset health problems,
fluctuations in sensory status, and resulting behavioral changes. Many of these
developments appear to be neurologically determined, though there is still
insufficient understanding of precise causes and appropriate remediation
techniques. As a consequence of this ongoing process, our field has evolved
very different, more complex, and comprehensive pictures of syndromes such as
Congenital Rubella Syndrome and CHARGE Syndrome.
Changes in Educational Philosophy
During the past quarter century there have also
been significant changes in educational philosophy, sometimes imposed by
changes outside our narrow specialty and sometimes originating from our own
experiences and research. Rodbroe and Souriau (1999) chronicle a major change
in the emphasis of deaf-blind education, from the tight "behavioristic
approach" of the 1960s, when children were taught primarily by having things
done to them, to a strong focus beginning in the late 1980s on "reciprocal
social togetherness," which encouraged following a childs lead and
building positive relationships in order to foster the development of
communication and other skills. Increasing awareness of the importance, for all
children, of developing attachments and forming positive relationships has been
accompanied by growing evidence of the negative impact of stress on early brain
development. Jan van Dijk has been an outstanding advocate for the
consideration of stress as an inherent feature in deaf-blindness (Nelson &
van Dijk, 2001) and its extremely deleterious impact on the development of
children who are deaf-blind. He has also advocated for the need to consider
these children at a biobehavioral level if assessment and teaching is to be
successful, a view shared by other recent writers (Blaha, 1996; Brown, 2001).
As a result, we now place a much greater emphasis upon meticulous observation
and upon individualization of assessment and teaching approaches than we did 25
At the 13th Deafblind International World
Conference on Deafblindness in 2003, Tony Best presented a view of this history
from a different perspective. He described how ways of defining or thinking
about deaf-blindness as a medical condition have changed over the years.
According to Best (2003), in the early days of deaf-blind education,
collaboration between educators and medical experts was based on a narrow
medical model that focused primarily upon the combination of vision and hearing
loss. In this context, educators often worked with pediatricians; ear, nose,
and throat specialists; audiologists; and ophthalmologists. Later, there was a
move away from this view of deaf-blindness as primarily a medical condition and
toward a more social modelevident also within the broader field of
disabilitywhich was concerned with environmental adaptations and staff
training needs. The emphasis shifted from the degree of vision and hearing loss
of the children to their academic ability levels.
Because of changes in the population of deaf-blind
children, and advances in the field of genetics and neurology, Best proposed
that it was time, once again, to consider the influence of the medical aspects
of conditions causing deaf-blindness on childrens educational needs. He
stated that, "the neurological involvement of the vast majority of deafblind
people under the age of 10 makes it a medical condition as much as a sensory
disability," and he proposed a "new medical model," that emphasizes
collaboration between educators and specialists in genetics and neurology
(Best, 2003, p. 1).
It would be fascinating to study to what extent
the evolution of the various educational models described by Rodbroe and
Souriau and by Best, occurred as a result of changes in the identified
population, and to what extent the advent of the new models themselves have
altered our perception of who exactly constitutes the population of "children
with deaf-blindness." Since deaf-blindness is a spectrum disability, it seems
inevitable that the field will continue to experience these periodic
significant changes of emphasis and focus, manifested most clearly in the
persistent search for a satisfactory and comprehensive definition of
What Have These Changes in Population Meant for
Although the impact of these population changes
has been immense it is important to remember that we never worked with a
homogeneous and noncomplex group of children, even though some of us might have
viewed our caseloads in precisely that way a long time ago. It is true that the
vastly expanded range of etiologies has removed the old certainties derived
from teaching a class or supporting a caseload predominantly of children with
Congenital Rubella Syndrome (to know a lot about Congenital Rubella Syndrome
used to be synonymous with knowing a lot about deaf-blindness, and vice versa).
How many of us can claim similar facility and familiarity in working with
children with Cockayne Syndrome, Cogan Syndrome, Turner Syndrome, Klippel-Fell
Sequence, Trisomy 18, or even a quarter of the other 70 or so etiologies
included in the national census? It is also now unusual to find teachers with
the high level of facility in adapted sign language and finger-spelling found
among longer-standing, "pioneer," teachers in this field, since an increasing
proportion of the younger (but surviving and growing) children in the current
population are at a pre-language or very early level of language development.
Even with appropriate teaching, this groups subsequent progress is often
extremely slow. One need not travel far to hear complaints that these more
complex and medically involved children are excessively challenging, develop
slowly and inconsistently, and are using up an unfair proportion of the scarce
resources that our services have available.
Less frequently discussed is the abundance of
evidence that working with the more complex and profoundly disabled children
has helped educators to develop skills and insights that also improve the
quality of their work with the whole population of students with deaf-blindness
and children with other disabilities. These benefits include increased
creativity and flexibility, improved observation skills, greater empathy, more
genuinely holistic and multisensory approaches to assessment and teaching, a
stronger emphasis on individualized programs, and a more urgent awareness of
the need for collaborative approaches. Above all, working with these most
challenging children has helped to expand the parameters of what we previously
thought possible for people with deaf-blindness in all areas of development,
including adaptive skills, compensatory abilities, short- and long-term memory,
social awareness, and differentiated behaviors. And just think, for example,
how much even the most academically gifted child with deaf-blindness benefits
from being considered from a biobehavioral perspective and how much more
effectively we could have supported every child on our caseloads had we enjoyed
these many invaluable insights decades ago.
What are the implications of all of these changes?
What should specialists in deaf-blindness, parents, and others involved in the
education of deaf-blind children do in the light of this knowledge? Along with
our colleagues in California, we have had many discussions on this topic.
Although we would not wish to return to a time when deaf-blindness was
considered primarily a medical condition, increased collaboration with
neurologists and geneticists, as Tony Best suggests, is essential. There are
already exciting examples of this process at work. For example, within the
CHARGE Syndrome Foundation there is a long-standing collaboration among medical
specialists (with a significant representation of geneticists), families,
psychologists, and teachers that has led to a rapid increase in knowledge about
this condition. Except where they step forward though, it is probably
unrealistic to expect much from most medical specialists in terms of engaging
with developmental or educational issues, which are, after all, our prime focus
and concern. An exception to this, however, may be the physicians and
researchers involved in developmental and behavioral pediatrics, pediatric
neurology, and neuropsychology, or rehabilitative medicine. For example, at the
2003 Deafblind International World Conference, Jude Nicholas, a
neuropsychologist in Norway, spoke about cognitive neuroscience and how it
"helps us to understand the communication in the nervous system and is the
scientific key in understanding how the brain processes information" (Nicholas,
2003, p. 4). His comments on neuroplasticity (how the brain modifies itself in
response to sensory deprivation), on the possible role of emotion in cognition,
and on the emotional aspects of the communication process suggest a tantalizing
new perspective that reinforces some of the more recent changes in our
educational philosophy mentioned above.
It is also apparent that we need to read,
research, document, and discuss far more about recent discoveries and
developments in the fields of neurology and genetics and make our own
inferences and decisions, while also becoming better able to formulate more
appropriate questions to pose to the relevant medical specialists. Experts
within the field of deaf-blindness are beginning to become more involved with
these issues. At the 2004 NTAC Topical Workshop on Early Intervention, the
presentations on early brain development and on the impact of the neonatal
intensive care unit (NICU) on the early sensory development of premature babies
were well attended and of great relevance for anyone working with the current
population of children with deaf-blindness aged birth to ten. And increasingly,
newer literature intended for teachers in our own and in closely associated
fields has included a focus on neurological development, multisensory
perspectives, health issues, and sensory integration difficulties that would
have been very unusual 15 years ago (Liefert, 2003; Alsop, 2002; Orelove,
Sobsey, & Silberman, 2004). Research into the patterns of change in the
annual national deaf-blind census and a planned forum for discussion of the
findings seems an urgent necessity, particularly since our perception is that
the changes in the nature of the population described in this paper are most
marked among infants and young children. Issues about the changing population
of deaf-blind children are often raised and debated, but in casual ways
resulting from specific local events such as a new referral, the death of a
child, or an inquiry about a rare syndrome. The time and opportunity to examine
these issues in any kind of depth rarely presents itself.
As a field, it is important to regroup and
reexamine what we are doing and with whom. As deaf-blind specialists, we are
uniquely placed to take a holistic view of children. Creating opportunities to
explore and discuss the nature of the changing population, the history of
deaf-blind education, and the implications of these on our current work should
now be a priority for the field.
Alsop, L. (Ed.). (2002).
Understanding deafblindness: Issues, perspectives, and strategies.
Logan, UT: SKI-HI Institute, Utah State University.
Best, C. (1983). The "new" deaf-blind? Results of
a national survey of deaf-blind children in ESN(S) and hospital schools.
British Journal of Visual Impairment, 1(2), 1113.
Best, T. (2003). New concepts in deafblindness.
13th DbI World Conference on Deafblindness 2003 conference proceedings.
[CD-ROM]. Brandtford, Ontario: Canadian Deafblind and Rubella Association.
Blaha, R. (1996). Thoughts on the assessment of
the student with the most profound disabilities. See/Hear 1(4),
Brown, D. (1997). Trends in the population of
children with multi-sensory impairment. Talking Sense, 43(2),
Brown, D. (2001). Follow the Child: Approaches to
assessing the functional vision and hearing of young children with congenital
deaf-blindness. reSources, 10(9), 13.
Chen, D. (1998). Early identification of infants
who are deaf-blind: A systematic approach for early interventionists.
Deaf-Blind Perspectives, 5(3), 16.
Collins, M., Majors, M., & Riggio, M. (1991).
New deaf-blind populations: Etiological factors and implications for the
future. Proceedings of the 10th IAEDB International Conference: Quality of
life: Lifelong enrichment (p. 121). Orebro, Sweden: International
Association for the Education of the Deaf-Blind.
Liefert, F. K. (2003). Expanded core curriculum:
Orientation and mobility. In S. A. Goodman & S. H. Wittenstein, S. H.
(Eds.), Collaborative assessment: Working with students who are blind or
visually impaired, including those with additional disabilities (pp.
264297). New York: AFB Press.
McInnes, J. M. (1999). Deafblindness: A unique
disability. In J. M. McInnes (Ed.), A guide to planning and support for
individuals who are deafblind (pp. 333). Toronto: University of
Miles, B., & Riggio, M. (1999). Remarkable
conversations: A guide to developing meaningful communication with children and
young adults who are deafblind. Watertown, MA: Perkins School for the
Nelson, C. & van Dijk, J. (2001). Child-guided strategies for understanding children who are
deafblind or have severe multiple disabilities: The van Dijk approach to
assessment. [CD-ROM]. St. Michielsgestel, the Netherlands: AapNootMuis.
Nicholas, J. (2003). Communicating research to
practice and practice to research: From theoretical contributions to
therapeutic interventions. 13th DbI World Conference on Deafblindness 2003
conference proceedings. [CD-ROM]. Brandtford, Ontario: Canadian Deafblind
and Rubella Association.
Orelove, F. P., Sobsey, D., & Silbermann, R.
K. (Eds.). (2004). Educating children with multiple disabilities: A
collaborative approach. Baltimore: Paul H. Brookes Publishing Co.
Riggio, M. (1992). A changing population of
children and youth with deaf-blindness: A changing role of the deaf-blind
specialist/teacher: Reaction paper. Proceedings of the National Conference
on Deaf-blindness: Deaf-blind services in the 90s (pp. 2026).
Watertown, MA: Hilton/Perkins National Program.
Rodbroe, I., & Souriau, J. (1999).
Communication. In J. M. McInnes (Ed.), A guide to planning and support for
individuals who are deafblind (pp. 119149). Toronto: University of
National deaf-blind child count summary:
December 1, 2003. (2004). Monmouth, OR: NTAC, Teaching Research Institute,
Western Oregon University.
Getting In Touch
Museum Studies Program
A new museum at the
Perkins School for the Blind tells the history of the remarkable institution,
now celebrating its 175th anniversary. Located in the main hall of the Howe
Building on the schools Watertown, Massachusetts, campus, the museum
illustrates the pioneering role of the school in blind and deafblind education.
All the display cases have multiple modes of information, including printed
text, Braille, individual audio guides, and at least one tactile component.
There are also computers available for additional information and a thoughtful
and well-written gallery guide by Curator Betsy McGinnity, Research Librarian
Jan Seymour-Ford, and Volunteer Kathleen Andries.
The role of the Perkins School in developing
writing and reading systems for blind and deafblind students is illustrated
through an extraordinary collection of machines for producing raised type.
These document a number of systems going back to the "Boston Line Type" that
was developed by the schools first director, Samuel Gridley Howe. As
Braille became the accepted standard, Perkinss own Howe Press published
many books and other publications and developed the "Boston Braille Writer" and
"Perkins Brailler" for personal use. One of the great treasures on exhibit is
an 1868 edition of The Old Curiosity Shop in Boston Line Type. The author,
Charles Dickens, who visited the Perkins School on his American tour, paid for
the publication of the three-volume book.
Tactile methods for teaching music, science,
mathematics, and geography are all explored in the museums displays.
Hands-on maps, carved from wood or stitched onto fabric, have been part of the
schools curriculum from its earliest days. A new map of the campus, made
specifically for the museum, vies for favorite status among students and alumni
with a giant wooden globe, made in 1837 and recently restored to go on
Among the Perkins students who rose to national
prominence were Laura Bridgman, Anne Sullivan, and Helen Keller (whose parents
were referred to the school by Alexander Graham Bell in 1886). The exhibition
includes a number of objects related to these three women, including examples
of letters written by Bridgman and Keller using the "square-hand writing"
taught at the Perkins School, lace made by Laura Bridgman, and a lovely
photographic record of the relationship between Sullivan and Keller.
The prominent role of the Perkins School in Boston
philanthropic circles is made clear in several sections of the museum. Named
for the China Trade merchant Thomas Handasyd Perkins, who donated his house to
the school in 1833, the institution drew the attention of some of the most
prominent writers and social activists of the area. Julia Ward Howe, the wife
of the first director, was one of the most influential women in America in the
nineteenth century. A major figure in the abolitionist movement and in the
struggle for womens rights, she was a dynamic lecturer and a poet, best
remembered today for having written the "Battle Hymn of the Republic." Louisa
May Alcott donated the profits from her story "Blind Lark" to the schools
building fund, and Henry David Thoreau applied to teach at the Perkins School
in 1841. His application letter is reproduced in the museum, along with the
astonishing report that he wasnt hired, despite the fact that Ralph Waldo
Emerson was one of his references!
This is not the first museum to be created at the
Perkins School. In the late nineteenth century, when natural history museums
were opening in cities all over America and Europe, Perkins Director Michael
Anagnos established his own version. As the label text explains, "Students who
are blind do not have the benefit of incidentally learning about the natural
world as sighted children do. To give students direct experience of the world,
Director Anagnos in 1880 established a tactile museum featuring objects related
to natural history and science."
Photographs of the early displays, examples of
animal skulls, and an extraordinary model of a complex plant, which comes apart
to reveal all of its component parts to the touch, give the visitor a hint of
that earlier museum. Most of the surviving collection, including a large number
of wonderful bird and animal mounts, are still part of the active teaching
collection of the school.
The contrast between the early museum and the new
museum illustrates important changes at the Perkins School in the last century.
While Anagnos conceived his museum for the students in the school, McGinnity
and the Museum Committee have clearly approached their task with a much wider
audience in mind. The new museum teaches alumni, outside school groups, and the
general public about the Perkins School itself. The two important functions of
the school are made very clear: educating people who are vision impaired,
blind, and deafblind, locally and globally; and providing library services to
the larger community by distributing Braille and audio books.
Despite its central place in the field, the
general public in Boston today knows less about the Perkins School than the
population did 175 years ago, when there were many fewer schools and nonprofit
organizations competing for attention, charitable contributions, and government
funds. The museum is a positive way of bringing greater attention to the school
and its important role in the local, regional, and national community.
The museum is currently visited by two or more
school groups per month and a number of local Brownie troops. The new
Massachusetts state elementary school curriculum has a unit on Helen Keller,
which will almost certainly ensure a growing number of school visits in the
The museum is fully accessible and is open to the
public on Tuesdays and Thursdays from 2:00 p.m. to 4:00 p.m. More information
is available on the Perkins Web site at http://www.perkins.org.
Peggy Malloy Managing Editor
"Research Update" is a regularly recurring feature
consisting of announcements related to research in deaf-blindness. Researchers
and other interested individuals or agencies may use this column to share
information about new, ongoing, or recently completed research projects and new
publications. If you have information about a research topic that you would
like to include, contact:
The Teaching Research Institute
Monmouth, OR 97361
Research Project Update
Functional Hearing Inventory:
Project to Identify Criterion-Related Validity and Interrater Reliability
Submitted by Pamela Broadston
University of Arkansas at Little
Deafblindness is a multifaceted disability that impacts an individual in
compound and complex ways. Children who are deafblind require instruction in
the use of residual hearing and vision and appropriate access to the
environments in which they live and learn. The development of goals and
objectives for educational intervention should be based on the needs of each
individual child as revealed through appropriate assessment. Information about
a childs access to the environment is an important part of the assessment
process (Olson, Miles, & Riggio, 1999).
Purpose. The Functional Hearing Inventory
(FHI) was developed to obtain information about how deafblind children use
residual hearing within their natural environments. It was designed to be both
diagnostic and prescriptive by providing a process to record a childs
present level of functional hearing as well as a way to focus intervention
strategies. The information obtained from the inventory can be used to plan
educational programs that optimize the use of hearing to develop language and
communication skills, document a childs progress in the development and
use of residual hearing, and guide environmental adaptations. Access to the
environment is crucial for the development of communication and language. The
information gleaned from the FHI can be used to help parents and educators
manipulate environmental background noise levels in the classroom or at home,
maximize students use of residual hearing, and provide a better listening
environment for learning.
Goal. The goal of this five-year project is
to establish the validity and reliability of the FHI as a tool to provide
accurate information about the use of hearing by students with deafblindness.
Approximately 180 students will be assessed, rigorous field testing of the FHI
Instruction Manual will be conducted to assure clarity of its instructions and
procedures, and a training CD-ROM will be developed. Training activities on the
use of the FHI will be held and the completed FHI materials will be
Current Status. Members of observational
teams from the three participating universities have been trained, and
interrater reliability has been established among team members. Approval from
the Institutional Review Board for the Protection of Human Subjects at all
three universities was obtained. So far, the FHI has been administered to
students in six states. Additional students are being recruited.
Project Coinvestigators. Roseanna Davidson,
Ed.D, Texas Tech University; Pamela Broadston, Ed.D, University of Arkansas at
Little Rock; and B. J. LeJeune, M.Ed., Mississippi State University-RRTC.
Olson, K., Miles, B., & Riggio, M. (1999).
Environments that encourage communication. In B. Miles & M. Riggio (Eds.),
Remarkable conversations: A guide to developing meaningful communication
with children and young adults who are deafblind (pp. 7693).
Watertown, MA: Perkins School for the Blind.
New Research Articles about CHARGE
The March issue of the American Journal of Medical
Genetics Part A (Vol. 133A, Issue 3) is devoted to articles about the
behavioral aspects of CHARGE Syndrome. A few additional articles about other
aspects of CHARGE Syndrome are also included.
New Research Articles about CHARGE
The Research and Training Center on Early
Childhood Development Web site (http://www.researchtopractice.info)
includes information about research-based practices for infants, toddlers, and
preschoolers with or at risk for developmental disabilities. There are a number
of products available including Centerscope articles that provide detailed
information about the history and nature of evidence-based practice; Bridges,
practice-based research syntheses of topics related to early childhood
development; Bottomlines, one- to two-page summaries of the practice-based
research syntheses; and Solutions Tool Kits, user-friendly brochures,
newsletters, video tapes, and PowerPoint presentations that describe methods
and strategies that can be implemented to achieve an effect similar to that
reported in a particular research synthesis.
Letter To the Editor
To the editor,
We are writing to Deaf-Blind Perspectives to
comment on the recently published article "Collaboration Achieves Travel
Success (Project CATS)" by Houghton, et al. (Winter 2005), explaining a program
that is illustrated with an example attributed to Kansas. We applaud the
transdisciplinary approach to childrens travel safety, and agree with the
need for collaboration when educating deafblind travelers. However, we have
serious concerns about the pedagogical approach and the orientation and
mobility techniques incorporated in the program.
We are troubled that people will assume that
articles prominently placed in a professional newsletter such as Deaf-Blind
Perspectives have been peer-reviewed by qualified professionals and will
therefore believe that the information presented represents "best practices."
Our main concern is the need for a Certified Orientation and Mobility
Specialist (COMS). In the model presented in the article, a COMS is an optional
component to the team, to be consulted only for such things as checking
traffic-related or other safety concerns. A COMS should be involved in the
development of deafblind childrens educational programs from the onset of
planning and continuing throughout. The development of safe and efficient
travel skills for most deafblind children is something that should be part of
their entire educational process.
Further, the only professional with sufficient
knowledge of these skills and concepts is an orientation and mobility
specialist. We feel that the inclusion of a COMS on the team should be a
requirement; without a COMS on the team, this situation is rife with the
potential for danger for deafblind travelers.
Our second concern relates to the actual
orientation and mobility practices used as examples in the article. Although we
realize the writers did not intend the piece to teach specific mobility
methodology, the inclusion of several irregular practices causes apprehension.
Perhaps the most obvious example involved the text and picture relating to the
youngster crossing the street. Flagging moving vehicles and assuming they will
all stop is not a safe practice (Sauerburger, 1998, 2003). Children are
especially vulnerable to the dangers of using such strategies, as they are not
usually capable of processing the very complex rules and risks associated with
We agree that there is a severe shortage of COMS,
especially COMS who are experienced with and prepared to serve deafblind
children, but we advocate for more personnel preparation programs,
appropriately designed educational programs and IEPs, and a greater involvement
of COMS in working with deafblind youth and adults rather than the
establishment of programs that provide O&M services with teams that
dont include COMS. It is a time for innovation, creative thinking, and
maintaining best practices in our programs, research, and authorship.
Thank you for your attention to our
Eugene Bourquin, MA, COMS, CI&CT, CLVT
Departments of Orientation & Mobility and Low
Ed Gervasoni, Ed.S., COMS, CVRT
Deaf-Blind Mobility Specialist
Dona Sauerburger, COMS
Sauerburger, D. (1998). Intersection design and
street-crossing strategies for blind pedestrians: Then and now [Videotape].
Gambrills, MD: Author.
Sauerburger, D. (2003). Do drivers stop at
unsignalized intersections for pedestrians who are blind? Proceedings,
conference of Institute of Transportation Engineers, March 25, 2003, Ft.
Lauderdale, FL [CD-ROM].
For Your Library
Integrated Functional Behavior Assessment
Protocol (IF-BAP): Holistic Behavioral Assessment of Students with
Deafblindness and Severe Disabilities
Kevin D. Arnold & Thomas M.
Stephens, Universal Publishing, 2004, 80 pages.
The IF-BAP assessment strategy is intended to
create a comprehensive view of a student who is deaf-blind or has severe
disabilities in order to increase a teachers understanding of the
interaction among various behavioral and sensory systems. Once teachers
understand those interactions, they can design a program that not only
addresses each of those systems, but also the combined effects of each
systems unique contribution to the whole student. IF-BAP relies on a
transdisciplinary approach, in which a variety of specialists conduct
assessments, which are then integrated by one individual into an overall
picture of the student. The material is presented as an instructional manual to
be used by qualified professionals who are competent in psychological
assessment, applied behavioral analysis, and instructional interventions. Cost:
$15.95. Available from Universal Publishing. Phone: 800-940-2270. Web:
Words in My Hands: A Teacher, a Deaf-Blind Man,
an Unforgettable Journey
Diane Chambers. Ellexa Press, 2005, 263
After his wife died when he was 86, Bert Reidel, a
man with Usher Syndrome, moved to Colorado to live with his son and
daughter-in-law. Although Bert was an expert Braille reader, he had never
learned sign language and his wife had been his "eyes and ears" to the world.
This book tells the story Berts life and how he learned sign language
beginning at age 86. It illustrates that it is never too late to learn as it
describes how sign language transformed not only Berts life, but the
lives of his family, friends, and the interpreter who was his sign language
teacher. Cost $15.95. Available from Ellexa Press LLC, 32262 Steven Way,
Conifer, CO 80433. Fax: 303-838-7010. E-mail:
HomeTalk: A Family Assessment of Children who
are Deafblind (Spanish Version)
Bringing It All Back Home Project,
A Spanish translation of this assessment tool
(HomeTalk: Una evaluación familiar para niños sordos y ciegos) is
now available on the Web. HomeTalk is designed to help parents and care
providers of children who are deaf-blind and have other disabilities
participate in their childrens education by giving them a way to provide
a broad picture of a childs skills, special interests, and personality.
Available on the DB-LINK Web site (http://www.dblink.org) in the Selected Topics
section and on the Design to Learn Web site (http://www.designtolearn.com) in the
Products section. If you dont have access to the Web, call DB-LINK at
800-438-9376 or 800-854-7013 (TTY).
Child-Guided Strategies for Assessing Children
Who Are Deafblind or Have Multiple Disabilities [CD-ROM] (Spanish
A Spanish translation (Windows version only) of
this resource has been recently released. This interactive CD-ROM addresses
approaches of assessment and teaching for children with multiple disabilities.
Strategies are demonstrated through the use of over 40 video clips. Cost:
$40.00. To order, send a check or money order payable to Mr. Joe Franken, 4619
Spyglass Drive, Dallas, TX 75287. For more information contact Aapnootmuis
Educainment. E-mail: firstname.lastname@example.org. Web:
Strategies for Teaching Children with CHARGE
Syndrome and other Multiple Disabilities [DVD]
In this 30 minute DVD recording of a presentation
given at a recent Australian CHARGE Syndrome conference, Dr. Jan van Dijk
demonstrates and explains 5 important teaching principles based upon his 40
years of work with children with multiple disabilities and derived from
theories on attachment, contingent learning, and neuro-biology. The new Dutch
findings related to the genetics of CHARGE Syndrome are also explained. Cost:
$15.00. To order, send a check or money order payable to Mr. Joe Franken, 4619
Spyglass Drive, Dallas, TX 75287. For more information contact Aapnootmuis
Educainment. E-mail: email@example.com. Web:
American Foundation for the Blind
This online magazine about technology for people
with visual impairments is available for free on the Web. It is published 6
times per year and includes feature articles, news, and product reviews of
computer and other technologies for people who are blind. The specific needs of
deaf-blind people are often addressed. Published 6 times per year. Web:
Cortical Visual Impairment (CVI) Web
American Printing House (APH) for the Blind
A Web site devoted to the topic of CVI. It
includes lists of articles and videos, stories of children with CVI,
educational information such as environmental supports and intervention
strategies, and information about products and resources. Web:
National Early Childhood Transition Center
(NECTC) Web site
NECTCs mission is to examine factors that
promote successful transitions between infant/toddler programs, preschool
programs, and public school programs for young children with disabilities and
their families. Its primary objective is to investigate and validate practices
and strategies that enhance the early childhood transition process and support
positive school outcomes for children with disabilities. The Web site includes
a searchable database of transition research, policy, and practice.
Enchanted Hills Deaf-Blind
Conference and Camp
June 1115, 2005
A conference and camp for Deaf-Blind adults 18
years of age and older. Registration priority will be given to those who apply
from California, Nevada, Arizona, and Hawaii. People applying from other areas
will be placed on a waiting list and admitted based on availability. For more
information contact Frank Lester, Conference/Camp Coordinator (firstname.lastname@example.org) or call Sook Hee
Choi, Deaf-Blind Employment Access Specialist, Rose Resnick Lighthouse
(415-431-4572 TTY). Web: http://www.lighthouse-sf.org.
Colorado Summer Institute on
June 2729, 2005
The topic this year is "Active Learning:
Movement, Exploration, and Early Literacy for Children with Deafblindness." The
guest speaker is Kathee Scoggin, Co-Director, Deaf-Blind Services, Washington
Sensory Disabilities Services. For more information contact: Tanni Anthony,
Colorado Services for Children with Combined Vision and Hearing Loss. Phone:
Nebraska Deaf-Blind Summer
July 1822, 2005
University of Nebraska
The following sessions will be held: "What
Constitutes a Successful Psychological Evaluation," presented by Pam Ryan,
School Psychologist, Deafblind Program, Perkins School for the Blind;
"Challenges and Possibilities: Curriculum for Deafblind Learners," presented by
Martha Majors, Assistant Supervisor, Deafblind Program, Perkins School for the
Blind; "Get Ready, Get Set . . . LETS Move!: Learning About the World
Through Movement," presented by Carolina Martinez, Certified Orientation and
Mobility Specialist, Texas School for the Blind and Visually Impaired. For more
information contact Teresa Coonts, Coordinator, Nebraska Deaf-Blind Project.
Phone: 402-595-1810. E-mail: email@example.com.
Nebraska Family Workshop: Get Ready, Get Set. . .
July 23, 2005
University of Nebraska
This half-day training event will be for
parents and family members of children who have combined hearing and vision
loss. It is designed to introduce parents to strategies to help their children
develop movement skills through effective orientation and mobility techniques.
For more information contact Teresa Coonts, Coordinator, Nebraska Deaf-Blind
Project. Phone: 402-595-1810.
7th International CHARGE
July 2224, 2005
Speakers will be from medical, educational, and
other related professions and a wide range of topics will be offered. There
will also be time to visit with other families and share experiences. Childcare
is provided for the meetings. For more information contact the CHARGE Syndrome
Foundation. Phone: 800-442-7604.
NTAC/NFADB Annual National
August 2527, 2005
Salt Lake City, Utah
This conference co-sponsored by NTAC and the
National Family Association for Deaf-Blind provides an opportunity for family
members of children who are deaf-blind to get together to network and learn
about a specific topic. The topic this year will focus on psychosocial issues
related to family life when there is a child who is deaf-blind in the family.
For more information contact Tracy Jess. Phone: 425-576-5527. E-mail:
Deaf-Blind Perspectives Readers
A new listserv has been established for readers of
Deaf-Blind Perspectives. The purpose is to share opinions, ideas, and resources
related to articles and information in Deaf-Blind Perspectives, following the
publication of each issue. To subscribe, send a blank email message to: firstname.lastname@example.org
or contact Randy Klumph, email@example.com
Want a LISTSERV® of Your
Would you or your organization like to have your
own LISTSERV? The Teaching Research Institute can help you set it up and will
host if for you, free of charge. The only requirements are that it that it must
be non-commercial and be related to Deaf-Blindness. For examples of current
lists hosted at TRI, see http://www.tr.wou.edu/archives.
A summary of lists currently hosted at TRI can be
found at http://www.tr.wou.edu/archives
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