The Teaching Research
In This Issue
Cochlear Implants for Young Children Who Are
Our Experiences (to Date) with Sams
Classroom Observation Instrument for
Coming of Age: 2005 International CHARGE
National Task Force on Deaf-Blind
For Your Library
Conferences and Events
Cochlear Implants for Young Children Who Are
National Technical Assistance
Consortium for Children and Young Adults Who Are Deaf-Blind (NTAC)
Should we consider a cochlear implant for our young child who
Is he eligible?
At what age might he receive an implant?
What should our expectations be?
How many children with deaf-blindness are being
Is it effective for children who are
These are questions that state deaf-blind
projects are being asked by parents as more children with multiple
disabilities, including deaf-blindness, are being considered for cochlear
implantation. The opportunity for cochlear implantation now extends beyond
children who are only deaf or hard of hearing. Children who are deaf-blind from
birth or early in life before developing language are receiving implants, but
very little research has been done for this population, and this raises
important issues. How will it be determined which children are likely to
benefit? What specialized therapies and educational strategies will be
necessary following implantation? It is essential that research be performed
and practices developed that address these questions so that parents can make
informed choices for their children.
What Is Cochlear Implantation?
Cochlear implants are electronic devices that are surgically
placed under the skin behind the ear and consist of four basic parts: a
microphone to pick up sounds from the environment; a speech processor that
selects and arranges those sounds; a transmitter and receiver/stimulator that
receives signals from the speech processor and converts them into electrical
impulses; and electrodes that collect the impulses and send them to the brain.
A cochlear implant does not restore normal hearing, but it may provide a sense
of sound to people with severe-to-profound hearing loss by compensating for
damaged or nonhearing parts of the inner ear (NIDCD, 2002).
Cochlear implants were first approved by the Food and Drug
Administration in 1985. In 1990, approval was granted for implantation in
children age 2 and older with profound sensorineural deafness (Spencer, 2002a,
p. 39). By 2000, approval had been extended for children age 2 and older with
severe-to-profound deafness and for children of 12 to 23 months of age with
profound deafness (ASHA, 2004). Some implant centers are working with infants
prior to 12 months of age, and the risk and benefits are being studied
(Nussbaum, 2003; Waltzman & Roland, 2005). The FDA makes recommendations,
but they are not legal requirements (however, insurance reimbursement may be
more difficult if a center does not follow FDA-approved recommendations)
Deaf communities throughout the world have expressed strong
concerns about cochlear implants for deaf children (Spencer, 2002a, p. 41). In
a position statement, the National Association of the Deaf challenges the view
that deafness is a disability that needs to be fixed by cochlear
implants and calls for better understanding of the diversity, heritage,
language, and culture of the deaf community. It recognizes the right of parents
to make informed choices for their children and respects the choice of cochlear
implants, while emphasizing that parents should also understand options other
than cochlear implants that promote deaf childrens development, language,
and literacy. The NAD statement refers only to deaf children, however, and does
not address the needs of children who are deaf and also have a visual
impairment or other disabilities (NAD Cochlear Implant Committee, 2000).
Criteria for Implantation One of the challenges for researchers
and for centers that perform cochlear implantation is determining which
children will benefit from a cochlear implant. They try to identify
characteristicscandidacy criteriathat indicate that an implant may
be successful and helpful for a particular child. Although there is very little
information available about cochlear implants for children who are deaf-blind,
over time, criteria have been identified for children who are only deaf or hard
of hearing. Some criteria have been identified as being more important than
others, but questions remain about why some cochlear implant users receive more
benefit than others. Following are three basic questions that are considered
when determining candidacy (ASHA, 2004):
- Is the physical implantation of the device possible and
advisable given the medical status of the individual?
- Is it likely that the individual will receive more
communication benefit from a cochlear implant than from a hearing aid?
- Do the necessary family, educational, and rehabilitation
supports exist or can they be developed?
Implant center teams conduct extensive assessments in order to
decide whether a child is a good candidate. In general, centers will include
children with bilateral severe-to-profound sensorineural hearing loss; who are
12 months or older; who are failing to progress in speech, language, and
auditory development; and who have a motivated family with appropriate
expectations (Nussbaum, 2003).
The American Speech-Language-Hearing Association (ASHA) recommends
that deaf children with additional disabilities be considered as candidates for
implantation (ASHA, 2004). State deaf-blind projects report that eligibility
criteria vary for different implant centers. Some centers are hesitant to
implant children who are deaf-blind.
Outcomes of Implantation Research about the effectiveness of
cochlear implantation has been based primarily on children who are congenitally
deaf without additional disabilities and has focused on spoken communication,
particularly speech perception and production. As Patricia Spencer (2002b, p.
Cochlear implants provide many, but not all, deaf children
with access to information that can help them develop understanding and
production of spoken language. However, the range of benefits experienced is
large and the factors that influence the benefits received by an individual
child are still being investigated.
Overall, research shows that deaf children who have cochlear
implants have significantly greater rates of growth in spoken language than
deaf children who do not have implants. Specific findings include the
- Children implanted at younger ages (1223 months) do
better on auditory skill development than those at even slightly older ages
(2436 months) (Robbins, Koch, Osberger, Zimmerman-Phillips &
- Early implantation is associated with better speech production
(Conner, Hieber, Arts, & Zwolan, 2000).
- Speech perception consistently improves with the length of time
the child has been using the device (Tyler et al., 2000).
- A childs preverbal communication, cognitive, and
attending skills all play a critical role (Spencer, 2002b, p. 249), as does
nonverbal intelligence (Geers, 2002).
Increase in Implantation for Children Who Are
A survey was conducted in September 2005 of state and multistate
deaf-blind projects to determine (a) the number of states that collect
information about children with deaf-blindness who have received cochlear
implants, (b) the number of children with deaf-blindness who have received
implants, and (c) whether there has been an the increase in the number who have
been implanted over the past five years. Forty-seven of the projects
Nineteen percent of the state deaf-blind projects formally collect
information about cochlear implantation. Many other states do not formally
collect information but are aware of children who have received implants.
Overall, states report that more than 225 children with deaf-blindness have a
cochlear implant. Seventy percent of states have seen an increase in the number
of children with implants, and in some, this increase has been significant. In
Texas, for example, the number has increased from 5 receiving implants in 2002
to 32 in 2005 (figure 1). Fourteen percent of states do not believe there are
any children with deaf-blindness in their state who have cochlear implants, and
an additional 14% dont know.
Figure 1. Rate of increase of cochlear
implantation in children with deaf-blindness in Texas.
[text of above image: 2002 - 5 children, 2003 - 17
children, 2004 - 28 children, 2005 - 32 children]
It is clear that the number of children with deaf-blindness who
are receiving cochlear implants is increasing, and it is likely that an
increasing number of children will be considered for cochlear implants in the
next five years. Despite this, however, research to determine the effectiveness
of cochlear implants for these children is limited. Several small studies of
children with multiple disabilities, primarily CHARGE Syndrome, have included
children with visual impairments (Bauer, Wippold, Goldin, & Lusk, 2002;
El-Kashlan, Boerst, & Telian, 2001; MacArdle et al., 2002; Stjernholm,
Muren, & Bredberg, 2001). All combined, the studies included ten children,
all over the age of 3, and their outcomes were mixed. Some did not benefit, but
most showed increased detection of environmental sounds and improved speech
perception. More research with larger numbers of children is clearly needed.
Recently, Teaching Research Institute at Western Oregon University was awarded
a grant from the U.S. Department of Education to study the outcomes of cochlear
implantation for children who are deaf-blind. The three-year research project
will be carried out in collaboration with the University of Kansas, the Midwest
Ear Institute/St. Lukes Hospital, and approximately ten state deaf-blind
Tools used to assess speech and language in children who are deaf
may not be appropriate for children who are deaf-blind if they rely on
miniature objects or pictures. Many of these types of assessments are used to
determine whether a deaf child is benefiting from an implant. Assessments for
children who are deaf-blind may also need to measure skills such as social
interactions, prelinguistic communication, cognitive development, and
Special Issues for Children Who Are Deaf-Blind and
The potential benefits of cochlear implantation early in life for
children who are deaf-blind range from helping children to better experience
their physical and social environments to understanding and using some level of
speech. How much a child benefits often seems to depend upon the severity of
any additional disabilities (ASHA, 2004). Consequently, controversy continues
to exist about implanting children who are deaf and have additional
disabilities (Bauer et al., 2002, p. 1013). The success of a cochlear implant
depends not just on characteristics of a child prior to implantation but also
on the follow-up intervention and training the child receives afterwards. The
follow-up period requires good support from service providers and a strong
commitment by the family.
The Texas Deafblind Project has found that a number of children
who received implants are no longer wearing their external headpiece or sound
processor, thus deactivating the implant. It is unclear why the families
elected to deactivate the implants, but the following are some possible reasons
(C. Miller, personal communication, October 2005):
- The mapping (programming) for the device may not have been
- The families may have lacked access to appropriate follow-up
intervention and education.
- They may have been were unaware of the potential time that it
might take to observe benefits.
- They may have had high expectations that were not met.
These possibilities emphasize two very important points: the need
for parents to be well-informed prior to implantation and the need for children
to receive intensive follow-up intervention and
Information for Parents
Additional research must be conducted for larger numbers of
children who are deaf-blind so that families will have access to the accurate
information they need to make informed decisions. Since the degree of benefit
can vary widely, it is critical that parents are counseled to have appropriate
expectations (Bauer et al., 2002, p. 1017). At present, implant centers may not
apply anticipated outcomes for deaf children who do not have vision impairments
to children who are deaf-blind. They must let parents know that evidence about
the outcomes for children who are deaf-blind are extremely limited overall and
non-existent for children under the age of three. It is also imperative for
centers to inform families about medical risks and the need for intensive,
long-term habilitation following implantation. Habilitation for children with
special needs can take twice as long as that of children who are only deaf
(MacArdle et al., 2002, p. 347).
Habilitation is the process following implantation by which a
child receives intensive training to learn to use the cochlear implant and to
develop listening and speech skills. State deaf-blind projects report that the
amount of habilitation children receive varies widely, ranging from no auditory
training or educational strategies to intensive auditory and verbal therapy
from qualified providers.
There are a number of major considerations for providing
habilitation to children with deaf-blindness that differ from those for deaf
children without additional disabilities. Many young children with
deaf-blindness do not yet know that people, things, and locations have names or
that other people have knowledge of the world. It isnt simply a matter of
applying speech to an existing language system. Children who are deaf-blind
need an opportunity to learn during meaningful social interactions in optimal
environments. Children who are totally blind may need habilitation techniques
that include tactile, movement, and sensorimotor strategies.
Habilitation curricula that have been developed for deaf children
rely on good visual skills and cognitive skills beyond 24 months of
development. There is a great need for effective and appropriate auditory,
speech, and language techniques and curricula to support habilitation for
children who are deaf-blind. Also critical are parent training materials and
service providers with the skills to provide habilitation training.
There is tremendous promise for the use of cochlear implants for
children who are deaf-blind, but research to determine the long-term impact and
to guide decision-making and follow-up strategies is essential, as is the
development of effective habilitation strategies and skilled personnel to
provide those strategies. We must make sure that the technology does not
outdistance effective support and practices provided by early intervention
providers, schools, and families.
For more information about cochlear implants, go to Selected
Topics at the DB-LINK Web site (http://www.dblink.org) or contact DB-LINK
(800-438-9376; 800-854-7013 TTY; firstname.lastname@example.org).
ASHA (2004). Technical report: Cochlear implants. American
Speech Language-Hearing Association. Rockville, MD: American
Speech-Language-Hearing Association. Retrieved December 15, 2005, from
Bauer, P. W., Wippold, F. J., Goldin, J., & Lusk, R. P.
(2002). Cochlear implantation in children with CHARGE Association. Archives
of OtolaryngologyHead & Neck Surgery, 128, 10131017.
Connor, C. M., Hieber, S., Arts, H. A., & Zwolan, T. A.
(2000). Speech, vocabulary, and the education of children using cochlear
implants: Oral or total communication? Journal of Speech, Language, and
Hearing Research, 43(5), 11851204.
El-Kashlan, H. K., Boerst, A., & Telian, S. A. (2001).
Multichannel cochlear implantation in visually impaired patients. Otology
& Neurology, 22, 5356.
Geers, A. E. (2002). Factors affecting the development of speech,
language, and literacy in children with early cochlear implantation.
Language, Speech, and Hearing Services in Schools, 33(3),
MacArdle, B. M., Bailey, C. M., Phelps, P. D., Bradley, J., Brown,
T., & Wheeler, A. (2002). Cochlear implants in children with craniofacial
syndromes: Assessment and outcomes. International Journal of Audiology,
NAD Cochlear Implant Committee. (2000). Cochlear implants: NAD
position statement. Silver Spring, MD: National Association of the
NIDCD. (2002). Cochlear implants. Bethesda, MD: National
Institute on Deafness and Other Communication Disorders, National Institutes of
Health. Retrieved October 25, 2005, from
Nussbaum, D. (2003). Cochlear implants: Navigating a forest of
information . . . one tree at a time. Washington, DC: Gallaudet University,
Laurent Clerc National Deaf Education Center. Retrieved December 15, 2005,
Robbins, A. M., Koch D. B., Osberger, M. J., Zimmerman-Phillips,
S., & Kishon-Rabin, L. (2004). Effect of age at cochlear implantation on
auditory skill development in infants and toddlers. Archives of
Otolaryngology Head Neck Surgery, 130(5), 570574.
Spencer, P. E. (2002a). Cochlear implant history and technology.
In J. B. Christiansen & I. W. Leigh (Eds.), Cochlear implants in
children: Ethics and choices (pp. 1544). Washington, DC: Gallaudet
Spencer, P. E. (2002b). Language development of children with
cochlear implants. In J. B. Christiansen & I. W. Leigh (Eds.), Cochlear
implants in children: Ethics and choices (pp. 222249). Washington,
DC: Gallaudet University Press.
Stjernholm, C., Muren, C., & Bredberg, G. (2001). CT diagnosis
of temporal bone anomalies and cochlear implant surgery in CHARGE association.
Cochlear Implants International, 2(1), 59-71.
Tyler, R. S., Teagle, H. F. B., Kelsay, D. M. R., Gantz, B. J.,
Woodworth, G. G., & Parkinson, A. J. (2000). Speech perception by
prelingually deaf children after six years of cochlear implant use: Effects of
age at implantation. Annals of Otology, Rhinology, & Laryngology
Supplement, 185, 8284.
Waltzman, S. B., & Roland, J. T. (2005). Cochlear implantation
in children younger than 12 months. Pediatrics 116(4),
Our Experiences (to Date) with Sams Cochlear
On November 19, 2002, my husband and I
received devastating news, news unimaginable to most parents. I regret to
inform you, but your son has a rare condition with no good outcomes. His
condition causes hearing and vision loss, mental retardation, and neuromuscular
problems. . . . It is a childhood disease. . . . We just dont know what
to tell you.
My son, Sam, has a rare disease called a Peroxisomal Biogenesis
Disorder (Zellwegers Spectrum of Disorders, Infantile Refsums
Disease). Sam was born with vision and hearing, but both senses deteriorated
over the first nine months of life. At four months of age, he had mild loss in
both ears. At nine months of age, his auditory brainstem response showed that
his hearing loss was severe (between 70 and 90 decibels).
At the same time, Sams vision deteriorated. His eyes started
shaking (nystagmus). His optic nerve appeared dusky and gray, and there seemed
to be a waxy pallor to his retina. The best medical guess was that Sam could
see somewhere between 20/200 and 20/800.
When Sams audiologists and speech language pathologists
indicated that Sam would likely hear better with a cochlear implant than with
hearing aids, we decided to pursue it as an option. Sam had worn hearing aids
for almost two years, but his access to speech sounds was still limited. He was
experimenting with his voice, making mostly vowel sounds.
After the MRI, CT scan, vestibular tests, and blood work all
showed that we could proceed, we met with the cochlear implant team at Boys
Town National Research Hospital. Wed had ongoing conversations with this
team from the time Sam was nine months old. Sam was not a clear-cut case, but
all team members agreed that Sam could receive greater benefit with a CI than
with hearing aids. After a long discussion, we decided to go ahead with the
Sam was implanted on November 22, 2004. The surgeon and
audiologist came in three hours later to tell us that the surgery was a
success. They had gotten responses from Sams brain on all of the channels
Sam slept most of the day, but during the night, he was awake and
bouncing in the hospital crib. The next day, we were discharged. The initial
compression bandage bothered him a little, but he was perky and happy to be
back in the comforts of home.
The next day, the surgeon removed his bandage, and Sam was
supposed to wear a lighter dressing for a couple of days. He was totally
annoyed with the dressing, and it was off in no time. His head healed quickly,
and we went back to Boys Town for activation of the implant on December 16,
Activation day was much like the day that Sam got his hearing
aids. It was evident that he could hear through the device, but he seemed a bit
bewildered by the sounds coming into his head. The mapping (programming) was
broken up into two-hour time blocks over two days, and the audiologists were
pleased with the initial map. The first month was a transition phase to help
Sam get used to the device. He wore the implant on his left side and his
hearing aid in his right ear. Soon he began to prefer the implant to the
hearing aid. We tried to get him to wear both, but he continued to take the
hearing aid out. Now he will only wear it if the implant is offand even
then we struggle to keep it in.
Habilitationthe process of training a child to use a
cochlear implant and to learn listening and speech skillshas not been
free from uncertainty. There is no CI habilitation program or curriculum
designed specifically for children who are deaf-blind. Sam undergoes mapping
once every three months at Boys Town, and we see their speech language
pathologist (SLP) twice a year to evaluate his progress. The SLP is in contact
with our local school district, sharing what she observes and recommending
strategies for speech understanding and acquisition. Sams teachers use a
total communication approach. Sam just began early childhood special education
preschool this fall and attends three mornings a week. He spends a minimum of
120 minutes a week with his deafness educator, who carries out his auditory
We are very much at the beginning of Sams auditory training.
His teachers are doing the best they can with the resources available, but the
cochlear implant habilitation resources they have were developed for deaf
children. I know that Sam and his team would all benefit from a CI curriculum
developed especially for children who are deaf-blind.
We have seen an increase in Sams receptive language, and he
is just beginning to make new sounds with his voice. For months after he was
implanted, he was very quiet, taking in everything around him. Now he is
babbling and saying more consonants, and he is experimenting with his voice.
His first word with his hearing aid was mama,but after he received
the implant, he wouldnt say it unless the implant was turned off. Now he
will say mama with his implant turned on, and he attempts to say
more, especially when Coca Cola is involved!
Sam has made big gains physically and developmentally since his
surgery. This could be coincidental, or it could be because Sam now has more
consistent hearing and has a reason to seek out new things. It is difficult to
know what Sams outcomes will be from implantation, just as it is
difficult to know how his disease will affect him in the years ahead.
Regardless of the outcome, one thing is certainhis smile is enough to let
us know we made the right decision.
For Kenneth James Johnston, for
by Theresa Vincent
He cradles her in his arms as he offers
spoonfuls of mashed banana and peaches.
He looks out the window
The old cast iron piss-pot on the patio
now filled with pale yellow violas.
She opens her mouth for more.
turned fifteen today.
He looks at me and says,
makes me happy.
by Theresa Vincent
Weve been asking
who will be there for her?
Weve been asking
who will care for her
when we are gone?
Who will live with
just live with,
but with love, also
the risk of aspiration,
for a breath
and changing diapers for a 20, 30,
40 year old?
For now, some people stay,
its too much
for backs, shoulders,
her suffering will be over,
one of them says
There was a time
when I carried her
on my hip,
across my arms.
Now, it is more
than I can do.
Weve been asking ourselves, who .
Classroom Observation Instrument for Educational
Environments Serving Students with Deaf-Blindness
Ella L. Taylor
NTAC, Teaching Research
Meeting the needs of students who are
deaf-blind and often have additional disabilities, can be a daunting challenge
for many classroom teachers. Designing an engaging curriculum, providing
stimulating instruction, and assessing student progress are difficult tasks in
any classroom and may seem overwhelming when that classroom includes students
with complex communication needs. Compounding the problem are a lack of
identified model classrooms where teachers can observe exemplary practice and
scant information about deaf-blindness in teacher preparation programs (Taylor,
Kelly, & Evans-Luiselli, 2005). This is an issue not only for teachers but
also for technical assistance providers, teacher education faculty, and school
The Classroom Observation Instrument for Educational
Environments Serving Students with Deaf-Blindness (Taylor, Donta-Steele,
& Stremel, 2005) was designed to identify characteristics of model
classrooms for students who are deaf-blind. According to a report completed for
the U.S. Department of Education, prospective teachers conceptions
of teaching and learning . . . can be transformed through their observations
and analysis of what goes on in real classrooms. Stereotypical views can shift
when student teachers work in classrooms that enable this to happen
(Wilson, Floden, & Ferrini-Mundy, 2001, p. ii). The identification of model
classrooms where both student teachers and practicing teachers can learn
through observation is critical.
Development of the Instrument
The process of developing the Classroom Observation
Instrument took several years. It began with a review of four
- CEC Knowledge and Skill Base for All Beginning Special
Education Teachers of Students in Individualized General Curriculums
(Council for Exceptional Children, 2001a);
- CEC Knowledge and Skill Base for All Beginning Special
Education Teachers of Students in Individualized Independence Curriculums
(Council for Exceptional Children, 2001b);
- Competencies for Teachers of Learners Who Are Deaf-Blind
(McLetchie & Riggio, 1997);
- Observational Overview for Programs with Students with
Deaf-Blindness (Rhode Island Services to Students with Dual Sensory
These documents helped to guide the second step in the process,
the formation of multiple focus groups consisting of individuals who would most
likely use and benefit from the instrument. These included researchers from the
fields of deaf-blindness and severe and profound disabilities, teacher
education faculty, general education teachers, special education teachers,
families of students, and technical assistance providers in the field of
deaf-blind services. The focus groups worked to identify essential components
of model classrooms, which were then ranked by a panel of experts. Multiple
field tests were performed by technical assistance providers and other experts
in the fields of deaf-blindness and severe disabilities, and the instrument was
revised several times based on the results of those tests.
Validity was assessed by having two observers use the final
version of the Classroom Observation Instrument in elementary and
middle-school classrooms nominated as exemplary by state projects for children
and youth with deaf-blindness. Classrooms in five states were observed: two in
residential facilities, two in neighborhood schools, and one in an inclusive
private primary school.
Description of the Instrument
The Classroom Observation Instrument has three main parts:
(1) a teacher interview, (2) a student folder review, and (3) a chart detailing
specific classroom observations. The teacher interview is a series of questions
about the teachers goals for the student, family involvement in the
childs educational program, the students strengths and challenges
and how these are used to design educational strategies, the students
involvement in the general education curriculum, and the students
interactions with peers. The purpose of the folder review is to examine the
results of previously performed standardized and functional assessments, to
consider how the results are being used to plan instruction, to review the
students IEP goals, and to look at the types of corrective measures and
instructional modifications currently being used for hearing and vision.
The main part of the instrument, the rubric of classroom
observations, includes the following categories: curriculum, data-based
assessment, preservation of dignity, communication, social interactions, and
assistive technology. Each category contains a number of components that are
essential features of classrooms for children who are deaf-blind. A four-point
scale is used to rate the extent to which the component has been met. The
communication category, for example, includes items about receptive and
expressive communication, opportunities for communication, communication
functions, and communication partners. See figure 1 for an example of a scale
for receptive communication.
A scoring guide is provided, and a final section allows the
observer to note special circumstances or additional information. Usually,
administration of all components of the instrument takes approximately two
hours. Field tests have indicated that while the instruments components
(teacher interview, folder review, classroom observation) can be conducted
separately, it is extremely important that they be conducted in the suggested
order. It is crucial to have an understanding of the classroom before
conducting the observation.
Field tests of the Classroom Observation Instrument found that it
can be used by teachers, teacher education faculty, and technical assistance
providers to assess both areas of strength and areas requiring improvement
within a classroom. In addition, several state deaf-blind projects have shared
the instrument with programs serving students with other complex impairments,
and feedback has supported the use of the instrument for populations beyond
One limitation of the Classroom Observation Instrument is that it
has only been validated in educational settings at the primary, intermediate,
and early-middle-school levels. It has not been used in early childhood
education settings or in late-middle-school and high-school settings.
Modifications should be made for these environments.
Technical assistance providers, teacher education faculty, and
school district personnel can use the Classroom Observation Instrument for
Educational Environments Serving Students with Deaf-Blindness to assist in the
identification of model classrooms, classroom-based technical assistance,
practicum placements, and as a vehicle for guided classroom observations for
both pre-service and in-service teachers. The instrument will be available on
the NTAC Web site in February 2006.
Council for Exceptional Children. (2001a). CEC Knowledge and
Skill Base for All Beginning Special Education Teachers of Students in
Individualized General Curriculums. Arlington, VA: Council for Exceptional
Council for Exceptional Children. (2001b). CEC Knowledge and
Skill Base for All Beginning Special Education Teachers of Students in
Individualized Independence Curriculums. Arlington, VA: Council for
McLetchie, B. A. B., & Riggio, M. (1997). Competencies for
Teachers of Learners Who Are Deafblind. Watertown, MA: Perkins School for
Rhode Island Services to Students with Dual Sensory Impairments.
(2003). Observational Overview for Programs with Students with
Deaf-Blindness. Providence, RI: Sherlock Center, Rhode Island College.
Taylor, E. L., Donta-Steele, N., & Stremel, K. (in press).
Classroom Observation Instrument for Educational Environments Serving
Students with Deaf-Blindness. Monmouth, OR: NTAC.
Taylor, E. L., Kelly, D., & Evans-Luiselli, T. (2005).
Helen Keller wasnt the only one: Addressing the needs of students who
are deaf-blind. Panel presentation for the Teacher Education Division (TED)
Annual Conference of the Council for Exceptional Children (CEC), Portland, ME,
Wilson, S. M., Floden, R. E., & Ferrini-Mundy, J. (2001).
Teacher preparation research: Current knowledge, gaps, and
recommendations. Seattle: Center for the Study of Teaching and Policy,
University of Washington. Retrieved November 23, 2005, from
Note - the following was presented in table format as:
1. Classroom observations of receptive communication
Achieved - All receptive communication cues are
based upon the expectation of student response (e.g., type, wait time,
Nearly Achieved - Some receptive communication cues are
based upon the expectation of student response.
Making Progress - Few receptive communication cues are
based upon the expectation of student response.
Non-Existent - No receptive communication cues are based
upon the expectation of student response.
SKI-HI Institute, Utah State
Project SPARKLE (Supporting Access to
Resources, Knowledge, Linkages, and Education) was developed by the SKI-HI
Institute at Utah State University with funding from the U.S. Department of
Educations Office of Special Education Programs (OSEP). It is a unique
model of individualized learning for parents of children and youth who are
deafblind, that was developed in response to their requests for information and
training that would be accessible in their homes anytime, day or night, that
would be directly applicable to their children, and that they could share with
educators, service providers, and extended family members. Project SPARKLE
combines DVD technology and the Internet to make deafblind-specific
information, training, materials, and resources available to parents in their
homes to be used at their convenience. It also gives them the opportunity to
network with other families all over the country.
The SPARKLE model has five components:
- Training Program. The SPARKLE training program is
provided to parents by means of DVD technology and is supported by a parent
guidebook and the SPARKLE Web site at http://www.sparkle.usu.edu.
- Child Profile. The child profile is a database program
that supports the family in collecting data and information specific to their
child. They can then share this profile with educational teams, service
providers, medical personnel, and others.
- Family Support and Networking. The SPARKLE Web site has
a Family Room component where parents can access an evolving collection of
family stories for inspiration and support. Also, the SPARKLE Listserv helps
parents interact with each other to share ideas, information, and
- Ongoing Support. Each participating state has a
facilitator who is affiliated with the state deafblind project and who can
provide appropriate guidance, support, and resources to families.
- Resources and Materials. The SPARKLE Web site has a
glossary of terms and a resource section with links to related Web sites. It
also has a unique video library where parents can watch presentations by
professionals about deafblindness.
Parents from the states of Utah, Minnesota, Texas, and Georgia
participated in the training program as the SPARKLE model was being developed.
The evaluation data collected from those parents indicated the following:
- Parents increased their knowledge of the training topics from
an average pre-training score of 68% to a post-training score of 93%. This
indicated an overall knowledge gain of 25%. (More recent data collected from
families shows an overall knowledge gain of 31%.)
- When asked about training content, 95% of the parents thought
the information was relevant, met their needs, reinforced their present skills,
and taught them new skills that would benefit their child.
- 97% of parents thought the DVD training programs were easy to
use, understandable, and enjoyable.
- Parents found the program to be convenient for their scheduling
needs, and 48% viewed the training between 6:00 p.m. and 2:00 a.m.
Since the SPARKLE model was developed, it has been extended to
other states through state deafblind projects. Currently, there are over 200
families in 18 states (Arizona, Connecticut, Florida, Georgia, Kansas, Maine,
Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Nebraska, New
Hampshire, Ohio, Pennsylvania, Texas, Utah, and Virginia) participating in
Project SPARKLE. In addition, there is now a network of 35 specialists in
deafblindness from across the country involved with Project SPARKLE.
Overall, Project SPARKLE has been shown to be an effective,
accessible, and enjoyable model of parent training and networking. Ongoing
efforts will include the addition of training topics and resource materials and
expansion of the training program to new families of deafblind children around
the country. Any parents who are interested in participating may contact their
state deafblind projects or the SPARKLE Project directly. For additional
information, contact Linda Alsop, SKI-HI Institute, Utah State University,
Coming of Age: 2005 International CHARGE Syndrome
DB-LINK, Perkins School for the
More than 500 people gathered in Miami last
summer for the 7th International CHARGE Syndrome Conference. Since the first
one in St. Louis, Missouri, in 1993, each CHARGE Syndrome conference has grown
in participation and in the scope of information offered. It is both an
extraordinary professional conference and an old-fashioned family reunion. This
year was no exception.
The majority of conference participants have traditionally been
family members and the conference organizers always make a special effort to
offer overview information for new families. This year, Meg Hefner, Sandra
Davenport, Kim Blake, and Rob Lastprofessionals well known in the CHARGE
communityteamed up to offer CHARGE 101: The Basics for New
Families. This years program also included presentations about
emotional health for parents and children with CHARGE and special sessions for
grandparents and siblings. With the support of the Lee E. Norbury Scholarship,
twenty families received financial support to attend their first CHARGE
Conference presentations covered a wide range of medical and
educational issues. Several sessions explored the impact of the recent
discovery of a gene (CHD7) for CHARGE Syndrome, including a presentation by
Conny van Ravenswaaij, who represented the group from The Netherlands that
first identified the CHD7 gene. She talked about the discovery and the function
of the gene. Other medical topics also emphasized recent research. Jeremy Kirk
spoke about the rate of growth in those with CHARGE Syndrome and the response
to growth hormone. Kim Blake shared information about her research into
adolescent and adult issues. Other presentations covered osteoporosis, balance
problems, puberty, and vision problems, including cortical visual
Several sessions dealt with behavioral issues, including behavior
as communication, repetitive behavior, and the impact of sensory and
neurological impairments on behavior. Educational topics addressed were
communication, literacy, orientation and mobility, gross motor development,
physical activity, and feeding and speech problems.
At each conference the CHARGE Syndrome Foundation presents the
Star in CHARGE award. Recipients this year were David Brown and Tim
Hartshorne. Each was acknowledged for his contributions to the literature and
knowledge base about the impact of CHARGE on children and their
The conference spanned two-and-a-half days and included a meeting
of the CHARGE Syndrome Foundation. In addition to keynote speakers and breakout
sessions, Camp Fiesta, an activity-packed camp experience, was offered for
younger attendees. Plenty of time was provided for participants to gather and
meet informally. People whose only previous connection had been via the CHARGE
Syndrome Listserv finally had a chance to meet face-to-face, families with
younger children met families of older children, and young people with CHARGE
shared their experiences with one another.
For many in attendance the most noticeable change in the program
was the significant presence of young adults with CHARGE Syndrome. These young
adult participants attended presentations, asked questions, and learned about
the latest research. Belinda Arnell gave an inspiring keynote address that was
both informative and humorous, and during a panel presentation, several young
adults offered insight into their experiences growing up with CHARGE. While the
majority of people who have CHARGE syndrome are still young enough to prefer
the activities offered at Camp Fiesta, the presence of teenagers and young
adults was a significant change.
With the discovery of the CHD7 gene and thus the establishment of
CHARGE as a syndrome and the impact of the presence of young
adults, the 2005 International CHARGE Syndrome Conference was a coming of
age event. The Miami gathering sets the bar very high for the next
conference in 2007, which is planned for a location in the western region of
Further information about the presenters, program, and handouts is
available from DB-LINK (800-438-9376, 800-854-7013 TTY, or
Persons Aging with Hearing and Vision Loss
B. J. LeJeune, Project Director
Research and Training Center on Blindness and Low Vision
The goals of the Persons Aging with Hearing and Vision Loss
Project are to identify the number of people over age 55 with both hearing and
vision loss, investigate issues that affect their independence and quality of
life, identify and evaluate assistive technology and service delivery programs
for these individuals, and explore psycho-social issues related to their
adjustment to hearing and vision loss. The project is focusing on the needs of
those who had one sensory loss prior to age 55 and then acquired the additional
loss after age 55. This five-year research and training project is a
collaborative effort by Mississippi State University, the Helen Keller National
Center (HKNC), and San Diego State University and is funded by the National
Institute of Disability Rehabilitation Research (Project Number
The project is currently in its fourth year. During the first
three years, a nationally representative study sample of 410 people over age 55
with both hearing and vision loss was developed. The major data collection
activities to date include analysis of national databases, such as the 2000 U.
S. Census and the National Health Interview Survey (a research effort by the
Centers for Disease Control and Prevention), informal interviews, focus groups,
and surveys of individuals in the study sample. Additional surveys will be sent
to service providers and assistive technology vendors.
Data analysis is in the preliminary stage since surveys and
interviews are still in progress, but a wealth of information has been
gathered. A few initial findings indicate:
- Affected individuals need much more information. As was
expected, individuals who were deaf first have very little information about
low vision, blindness, and assistive technology for persons who are blind.
Those who were blind first have limited information about and access to hearing
aids and cochlear implants.
- Service providers also need more information. One surprising
finding was that blindness staff in independent living programs are often aware
of hearing loss in program participants but do very little to accommodate for
it in group settings.
- There are too few trained professionals providing services and
guidance to seniors losing vision and hearing. Some participants felt that
since they were not eligible for vocational rehabilitation services, they had
no other options. Others felt that there are unique issues related to aging and
sensory loss that professionals are not equipped to address.
- Use of telecommunications, especially cell phones and email, is
difficult for many people with dual sensory loss, no matter when the
- Transportation is a critical issue for many people.
- Generally people interviewed felt that they had neither the
financial resources nor training that would allow them to access available
- There is a lack of resources to assist individuals with their
psychological and social adjustment to combined sensory loss.
- There is a related concern about limited housing options and
loss of independence. For some persons, moving in with working adult children
is their only option, and as a result, they feel very isolated and
Based on the projects research findings, a number of
training opportunities for professionals and consumers will be offered. The
project will host a national conference, Creating Roads to Independence for
Persons Aging with Hearing and Vision Loss in Atlanta, Georgia, February
810, 2006. For additional information about the conference, check the Web
contact Stacy Butler at email@example.com or
800-675-7782, or Roy Freeman at 662-325-8693 (videophone or TTY).
In April, May, July, and September, HKNC will offer week-long
training seminars on communication options, community integration, psychosocial
issues, and the enhancement of services. For more information, see the
Conferences and Events section of this issue of
B. J. LeJeune may be contacted at RRTC on Blindness and Low
Vision, P. O. Box 6189, Mississippi State, MS 39762; or at 662-325-2001
(Voice), 662-325-8693 (TTY/video phone),
New Deaf-Blind Research Listserv
NTAC and DB-LINK are sponsoring a new Listserv that is open to
persons interested in learning about or sharing information on all aspects of
research in deaf-blindness. To subscribe send a blank e-mail message to
or contact Randy Klumph at firstname.lastname@example.org.
New Research Articles
Dobbelsteyn, C., Marche, D. M., Blake, K., & Rashid, M.
(2005). Early oral sensory experiences and feeding development in children with
CHARGE: A Report of Five Cases. Dysphagia, 20, 89-100.
Horvath, L. S., Kampfer-Bohach, S., & Kearns, J. F. (2005).
The use of accommodations among students with deafblindness in large-scale
assessment systems. Journal of Disability Policy Studies, 16(3),
Lim, M. et al. (2005). Development of visual acuity in children
with cerebral visual impairment. Archives of Ophthalmology, 123(9),
Kono, E., & Oda, K. (2005). Favorite activities for deaf-blind
children. International Congress Series, 1282, 873-876.
If you have information that you would like to include in
"Research Update," contact:
Teaching Research Institute
Monmouth, OR 97361
National Task Force on Deaf-Blind
Susanne Morgan, MA, CI, CT
Interpreters for the Deaf, Deaf-Blind Special Interest Group
Jamie Pope, Executive Director
Association of the Deaf-Blind
At the Registry of Interpreters for the
Deaf (RID) National Conference in San Antonio, Texas, we submitted a motion for
the creation of a national task force to increase awareness of and improve
training in deaf-blind interpreting. The motion was passed unanimously. The
rationale for the creation of a task force is that RID, the leading
organization in the field of interpreting services, has yet to address the
urgent communication access needs for the countless number of individuals who
are deaf and have a vision loss. This lack of attention is in direct conflict
with RIDs philosophy to strive for no less than excellence in the
provision of interpreting/transliterating services. As a national body,
RID must address the lack of understanding, training, skills, and quality of
services currently provided that directly affect the constituents for whom this
organization was founded. The mission of the task force will be to raise the
standard of services to a level equivalent to that currently offered to the
deaf community. The Deaf-Blind SIG/Member Section and the American Association
of the Deaf-Blind Board are in support of this collaborative effort.
The task forces first step will be to compile a
comprehensive list of the issues that consumers, interpreters, and
interpreter-trainers face regarding deaf-blind interpreting. Then, a plan of
action will be developed that addresses these issues. If you would like to be
involved in this initiative or want further information, contact Susie Morgan
For Your Library
Bruce, Susan, & Conlon, Kim. (2005). Colbys Daily
Journal: A School-Home Effort to Promote Communication Development. TEACHING
Exceptional Children Plus, 2(1).
Daily communication journals are a powerful tool to promote
communication development in children with severe disabilities. This online
article describes the components of a communication journal created for Colby,
a 4-year-old boy with deaf-blindness, and includes a videotape of him using the
journal. Each page of the daily journal features three parts: a print or
braille label, a recording device, and a tangible symbol. The review of the
daily journal in the home creates opportunities for children to recall school
events and to share those events with family members. Includes a list of tips
for developing communication books.
Reaching Out: A Toolkit for Deafblind Childrens
London: Sense, 30 pages
In the United Kingdom, local authorities have legal
responsibilities to provide services for deaf-blind children. They are required
to provide specialist assessments, appropriate information, and services
designed to meet the needs of deafblind people. This guide was developed to
help agencies meet those requirements. Topics covered include identifying and
assessing deafblind children, services (e.g., one-to-one support, intervenors,
family support), service coordination, and resources. Available on the web:
Quality Standards in Education and Support Services for
Children and Young People who are
Boothroyd, Eileen, et al. London:
Sense, 22 pages.
These are educational standards for children who are deaf-blind in
the United Kingdom. They are arranged by the following categories: assessment,
early years, school years, transition to adulthood, beyond school, and
management (practice, professional skills, monitoring, and evaluation). Each
section sets out a series of recommended standards. Available on the web:
This newsletter, published by California Deaf-Blind Services,
includes articles that are informative to everyone in the field of
deaf-blindness as well as news specific to California. The theme of the most
recent issue was the brain, the senses, and cognition. The current and back
issues are available on the Web: http://www.sfsu.edu/~cadbs.
CVI Perspectives (Video or DVD)
House for the Blind (APH), 2005
Explores cortical visual impairment (CVI) from three perspectives:
medical, educational, and personal. Neonatologist Dr. Alan Lantzy presents a
medical perspective on the causes of CVI, APH CVI Project Leader Dr. Christine
Roman presents an educational perspective focusing on characteristics and
recommended approaches, and in the final segment, seven families talk about
their personal experiences from the difficulty of the diagnosis to finding help
and hope. Cost: $25.00. Available from APH, P.O. Box 6085, Louisville, KY
40206-0085. Phone: 800-223-1839. E-mail: email@example.com. Web:
Adapt My World: Homemade Adaptations for People with
J. Rose Plaxen. Santa Ana, CA: Seven Locks Press,
This book features simple homemade adaptations for children with
disabilities at home, school, and play. The home chapter includes adaptations
for mealtime, bath time, bedtime, and dressing to make children feel more
independent at home. The school chapter has accommodations to help children
study and socialize. The play chapter includes adaptations for all types of
play, including sports and fitness. Cost: $14.95. Available from Seven Locks
Press. Phone: 800-354-5348. E-mail: firstname.lastname@example.org. Web:
Conferences and Events
Jan van Dijk Conference
Greensboro, North Carolina
Dr. Jan van Dijk is a world renowned educator from the Netherlands
who has pioneered teaching approaches for individuals who are deaf-blind. This
national conference, sponsored by the North Carolina Deaf-Blind Project, North
Carolina Department of Public Instruction, and Western Carolina University,
will also include a panel of experts presenting information on innovative
educational practices from around the world.
For more information contact Chris Jones, Coordinator, North
Carolina State Deaf-Blind Project. Phone: 919-807-3991. E-mail:
American Association of the Deaf-Blind
Call for Papers
The AADB conference will be held June 1723, 2006 in
Baltimore. The theme is AADB on the Move: No Deaf-Blind Left
Behind. AADB is currently requesting submissions for presentations.
Possible topic areas include emergency preparedness; SSP Issues; employment;
self-determination; politics and advocacy; updates in laws, federal government
services, and medical research; technology advances; community resources;
interpreting; and aging issues. The deadline for submissions is February, 15,
2006. For more information go to http://www.aadb.org or contact Elizabeth Spiers
at AADB. Phone: 301-495-4403. TTY: 301-495-4402. E-mail:
Deafblind International 14th World
September 2530, 2007
The conference will be hosted by Senses Foundation. The theme is
Worldwide Connections: Breaking the Isolation and its goal is to
make progress toward breaking the isolation that people with deafblindness
experience by breaking down barriers and building worldwide connections and
networks amongst countries and organizations. For information see
Helen Keller National Center
National Training Team Seminars
Sands Point, NY
April 37 Communication Options for Persons
Aging with Hearing & Vision Loss
April 2428 Expanding the Arena: The Magic of
May 15 Community Integration for Persons
Aging with Hearing & Vision Loss
May 2126 Orientation & Mobility
Techniques for Deaf-Blind Travelers: Same but Different
July 2428 Addressing Psychosocial Issues
Faced by Persons Aging with Hearing & Vision Loss
August 711 Interpreting Techniques for the
Deaf-Blind Population: Touching Lives
September 1115, Enhancing Services for Older
Adults with Vision & Hearing Loss: The Best is Yet to Come
September 2529 Disability
Rehabilitation/Research Project Persons Aging with Hearing & Vision Loss
October 2327 Person-Centered Approach to
November 13-17 Technology Seminar: The Magic of
Contact HKNC: Phone: 516-944-8900, Ext. 233. TTY:
516-944-8637. E-mail: email@example.com.
DB-LINK Selected Topics Find information about...
Orientation and Mobility
One of the easiest ways to locate current, well-organized
information on a variety of subjects is to hitch a ride from the Selected
Topics section of the DB-LINK Web site: http://www.dblink.org. This month we
invite you to look at what is currently organized under the topic of
Orientation and Mobility. Here you will find links to full text publications
and other resources.
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