The Teaching Research
In This Issue
Improving Education for Children with
Deaf-Blindness Following Hurricane Katrina
Remembering Charlie Freeman
Shaping Collective Wisdom in the Field of
Intervener Competencies Training Program in
Reflections from the Field
Our Life in Music
Striving for Excellence: New Standards for
Deafblind Services in Ontario
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New on the NCDB Website
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Improving Education for Children with
Deaf-Blindness Following Hurricane Katrina
National Consortium on Deaf-Blindness
Louisiana Deaf-Blind Project
This article describes an intensive technical
assistance initiative in which the Louisiana Deaf-Blind Project (LADB) and the
National Consortium on Deaf-Blindness (NCDB) collaborated with local personnel
of the school district serving New Orleans over a period of two-and-a-half
years, to help rebuild its capacity to provide services for students with
deaf-blindness and other significant disabilities following Hurricanes Katrina
Shortly after the school year began in
August and September 2005, Hurricanes Katrina and Rita hit the state of
Louisiana, causing devastation so far reaching that schools in a seven-parish
area were closed for all or part of the remaining school year. The New Orleans
area was one of those hardest hit, with most of the infrastructure of the city
being heavily damaged or destroyed. Many of the city's school buildings,
already in a state of disrepair, were damaged beyond use. Academic records,
birth certificates, court documents, and banking records were destroyed or
damaged in much of the southern part of the state.
Because of this unprecedented catastrophe, the Louisiana
Department of Education decided to designate a large number of the public
schools in Orleans Parish as part of the state's Recovery School District
(RSD). The RSD is a special school district administered by the Louisiana
Department of Education. It was created by a legislative act in 2003 and
designed to transform underperforming schools throughout the state into
successful places for children to learn (Recovery School District, n.d.).
Following Hurricane Katrina in 2005, its scope was enlarged to include numerous
schools in New Orleans.
The Recovery School District in New Orleans opened the doors to
three schools in the Fall of 2006. It began its first full school year during
the fall of 2007 as residents who had fled the city began to slowly return.
Trying to rebuild a school system under conditions where there was little or no
infrastructure presented numerous challenges. One of the most daunting was how
to provide services to students with disabilities, especially those with very
significant disabilities like deaf-blindness. For help meeting this challenge,
the RSD requested technical assistance from the Louisiana Department of
Education based in Baton Rouge.
Technical assistance (TA) can be thought of as a way to help an
agency, organization, or even an entire system obtain the skills and resources
it needs to solve specific problems. It is useful in situations in which the
entity needing help lacks the internal means to solve the problems on its own,
and it involves outside participation by individuals or agencies with expertise
in finding solutions to the types of difficulties presented. In response to the
RSD's request for assistance, Joyce Russo, the director of the Louisiana
Deaf-Blind Project, and Nanette Olivier, program consultant for significant
disabilities at the Louisiana Department of Education, met with Margaret Lang,
the director of the RSD's Office of Intervention Services, which oversees
special education services, to discuss the district's concerns and explore
technical assistance options. Following this meeting, a request for additional
assistance was made to NCDB, and in October 2007 Joyce Russo and Nancy Steele,
a Tennessee-based NCDB TA specialist, met with Margaret Lang and other special
education administrators in New Orleans for a strategic planning meeting. The
goal of the meeting was to discuss how the combined resources of LADB and NCDB
might assist the district in resolving the major problems it faced. Not
surprisingly, the problems were extensive:
- There was a severe teacher shortage, and few of the available
teachers had certification or experience teaching students with significant
- Principals and other school administrators had limited
understanding of this population of children.
- Most of the district's five special education cluster leaders,
who were responsible for providing expertise and support to teachers and
principals regarding students with disabilities, had limited knowledge or
expertise in significant disabilities.
- The whereabouts of many children with deaf-blindness who had
previously been on the Louisiana Deaf-Blind Project (LADB) Census were unknown,
and district administrators were unfamiliar with procedures that could be used
to identify them.
Working together, the LADB/NCDB TA providers and members of the
RSD's special education administrative team developed a technical assistance
plan to address the multilayered, complex needs of the district. Its primary
goal was to build the capacity of the school district to identify and educate
children who are deaf-blind, but educational personnel working with children
with other types of significant disabilities were also included in many of the
The TA initiative was conducted from October 2007 to April 2010,
and its activities were designed to build on one another from year to year. The
first year focused on building relationships with administrators, finding and
correctly classifying children with deaf-blindness, and providing training to
large numbers of personnel. The second year focused on in-depth coaching for
school teams working with students with deaf-blindness. The third year
emphasized building the capacity of the administrative team to take over the
role of technical assistance to teachers and schools.
Year 1: Getting Started
When the initiative first began, many residents were living in
trailers throughout the metro New Orleans area and the homeless resided in
tents under the I-10 overpass that runs through the heart of the city. The
RSD's earliest-opened schools were concentrated in parts of the city where
buildings could be repaired quickly. Children were allowed to attend any school
regardless of where they lived. The RSD's central office was housed at a former
social service agency near the Lower Ninth Ward, a section of the city that had
been almost totally destroyed, and a number of RSD staff members were living in
FEMA trailers. Despite these adverse conditions and even though they themselves
had been profoundly affected both personally and professionally, the school
personnel of the RSD were dedicated and resilient in their efforts to rebuild
the devastated system. Helping the administration learn how to find and assess
children who are deaf-blind and conducting workshops and other personnel
training events were the primary activities during the first year.
Finding Children with Deaf-Blindness
LADB, like deaf-blind projects in other states, maintains a census
of children and youth who are deaf-blind. However, as a result of the confusion
following Katrina, previously collected information was no longer accurate. The
RSD needed to determine which students with deaf-blindness had returned to the
city, where they lived, and if they were attending school. Because the
district's assistive technology specialist was the person on the administrative
team who was most familiar with where students with significant disabilities
were located, she was assigned to lead efforts to find children with
deaf-blindness. She enlisted two teachers of the visually impaired to assist
her. LADB and NCDB provided training and guidance to the group to help them
understand and implement the assessment process for new children in the
district suspected of having hearing and vision loss and also in applying
criteria for including them on the Louisiana Deaf-Blind Census.
In response to a critical need for professional development on
evidence-based practices for children with significant disabilities and
deaf-blindness, a series of training events were conducted in April and May of
2008 for educational personnel in New Orleans and the surrounding parishes.
These included introductory workshops on deaf-blindness for teachers; for
related service providers such as occupational therapists, physical therapists,
and speech-language pathologists; and for paraprofessionals. A separate
workshop was held for 25 school principals, during which a "Toolkit for
Administrators" was distributed, which described effective classroom
environments for students who are deaf-blind and instructional strategies that
should be used by their teachers. Because the RSD was committed to raising
awareness of educational strategies for children with significant disabilities
and to expanding the inclusion of this population of children in regular
classrooms, the events were open to both general and special educators.
The last large training event of the year was a 3-day summer
institute on communication for children who are deaf-blind, attended by
approximately 75 teachers and related service providers. This large
professional development event, hosted by the RSD at the University of New
Orleans, was an essential component of the overall TA plan. All subsequent
coaching, consultation, and training activities provided in Years 2 and 3 of
the initiative built on specific communication practices and strategies taught
during this institute.
Targeted Training for Cluster Leaders
Special education cluster leaders who work for the RSD provide TA
and training to principals and school personnel who work with special education
students. Because of their key role in providing support to schools, the
cluster leaders received targeted technical assistance during the initiative.
The goal was to improve their ability to provide TA related to deaf-blind
education once LADB and NCDB were no longer closely involved in the district.
This was essential to sustaining achievements gained during the initiative.
During the first year, training and coaching were provided to five
cluster leaders and other central office administrators, including the
coordinator of speech and related services, on how to promote effective
teamwork and facilitate conversations with school administrators. This helped
to prepare them for one of the biggest challenges they face, getting teams of
teachers and related service providers who work with students with significant
disabilities to collaborate in ways that result in consistent and effective
instruction for students.
Year 2: Building Expertise
Technical assistance during the second year was designed to raise
the skill level of teams of teachers and other educational personnel by
offering on-site coaching in classrooms and other types of training. The goal
was to create a pool of expertise in deaf-blind education that would be
available in the district once the TA initiative was completed. The Recovery
School District also hired two additional cluster leaders with backgrounds in
speech and communication and in significant disabilities.
Coaching Educational Teams
The classroom-based TA involved intensive coaching for educational
teams responsible for children with deaf-blindness. It built on knowledge that
team members acquired at the summer institute on communication development.
Although essential learning can result from large-group training events like
the institute, research indicates that unless training is followed by on-site
coaching, any acquired knowledge and skills are unlikely to be effectively
implemented with children in classrooms (Joyce & Showers, 2002, p. 78).
Five teams serving a total of seven students were selected to
receive coaching during Year 2 (a sixth team was added during Year 3). The
teams typically included the school principal, a special education teacher, a
regular education teacher, a paraprofessional, an occupational therapist, a
physical therapist, a speech-language pathologist, and a teacher of the
visually impaired. Classroom visits were scheduled monthly.
Coaching provided to team members while they were engaged with
their student in the classroom included the following:
- demonstrating ways to interact with children and then offering
guidance while team members tried the same things,
- facilitating discussions and helping resolve problems
- giving assignments and providing feedback, and
- providing emotional support.
Throughout the process, the TA providers and team members worked
together as partners, with the team members taking the lead. The content of the
coaching sessions focused on specific strategies that teams could employ to
promote their students' communication development, such as the use of calendar
boxes and routine-based instruction. A team for a student who was fully
included in a pre-kindergarten classroom also worked on how to help the child
participate in classroom activities.
In January of 2009, all of the teams, a total of 75 participants,
came together for an in-service training on how to assess children's
communication skills and develop strategies to teach communication based on
assessment findings. As with the summer institute, the information provided at
this event was used as a basis for further coaching during classroom
A Core Group of Experts
As noted above, the primary purpose of on-site TA was to help the
RSD develop a core group of educational personnel with expertise in the
education of children who are deaf-blind. These personnel, who work in
different schools and represent a variety of roles and specialty areas, can
serve as resources to other educators. Examples of this occurred when several
related-services team members, independently of coaching or training sessions,
assisted teachers to set up classrooms for two young children with
deaf-blindness, one of whom had been recently enrolled in an inclusive
Year 3: Planning for the Future
The 2009 to 2010 school year was the last year of the initiative.
The main goal for the year was to move the administrative team at the RSD's
Office of Intervention Services into the lead role in providing technical
assistance and, thus, sustain the procedures that had been put in place during
the first two years. Preparation for the administrative team to take over began
in the first year of the initiative, when procedures were established to ensure
shared decision making and regular high-quality communication between the
LADB/NCDB TA providers and the administrative team. Over the course of the
initiative, regular meetings were held to evaluate progress, discuss what had
been accomplished, identify where improvement was needed, and go over, in
detail, the plans for each step of the initiative. In addition, every classroom
visit during the second year was attended by the district's assistive
technology specialist, the significant disabilities specialist, and the
augmentative communication speech-language pathologist, all of whom represented
the administrative team.
A New Strategy
During the third year, classroom visits to coach educational
teams continued, but their frequency decreased to once every 6 weeks. During
this time, a new strategy was introduced to help the teams become more
comfortable developing instructional routines for their students. The lead
teachers on each team were given video cameras to tape their students engaged
in key routines. The video clips were sent to the LADB/NCDB TA providers and
were used for discussion during the next classroom visit. The clips were also
reviewed with the administrative team members so they could learn to identify
and analyze instructional strategies and student interactions. By the end of
the year, the administrative team members were able to review the clips and
give solid recommendations to educational teams. The use of video clips was an
effective strategy to maximize the limited time available to spend with
teachers and other team members and increase the ability of administrators to
do classroom coaching.
In January 2010, the administrative team and the LADB/NCDB TA
providers met to discuss the progress of the initiative that had been made up
to that point and to begin work on a sustainability plan. The plan detailed
professional development and coaching activities that would occur in the year
following the completion of the TA initiative and indicated who would be
responsible for the activities and for providing support to schools and
A great deal was achieved over the two-and-a-half years of this
initiative. The RSD developed the infrastructure necessary to provide support
and training to classroom teachers and educational teams for students with
deaf-blindness. Occupational therapists, physical therapists, and
speech-language pathologists increased their leadership capacity to support
students in inclusive settings, and more than 200 teachers and other
educational personnel developed knowledge and skills in areas essential to
improving educational outcomes for students who are deaf-blind or have other
A final training event in April 2010 showcased the
accomplishments of educational personnel to reestablish services for students
with significant disabilities and their resilience in working under incredibly
difficult circumstances. The scope of this initiative was unusually extensive,
but it was necessary given the catastrophic conditions that were present in the
aftermath of Hurricanes Katrina and Rita. It illustrates how an educational
system and external technical assistance experts can work together to resolve
major challenges and improve services for children who are deaf-blind.
Joyce, B., & Showers, B. (2002). Student achievement
through staff development. Alexandria, VA: Association for Supervision and
Recovery School District. (n.d.). Recovery school district:
Frequently asked questions. Retrieved from the Louisiana Department of
Education website: http://www.rsdla.net/InfoGlance/FAQs.aspx.
Top of Page
Remembering Charlie Freeman
It is with great sadness that we
acknowledge the passing of Charlie Freeman, who died of leukemia at age 70 on
June 6, 2010 in North Carolina. All of us at NCDB extend our deepest sympathies
to his family.
As OSEP's project officer for the deaf-blind projects from the
early 1980s until his retirement in 2006, Charlie was enormously influential in
developing and sustaining educational services for children who are deaf-blind
and he touched the hearts of all who knew him. Over the more than two decades
that he was at OSEP, Charlie worked with all of the state deaf-blind projects,
the national projects (TRACES, NTAC, DB-LINK, and NCDB), dozens of model
demonstration projects, and many teacher training programs. Following his
death, professionals in this network of deaf-blind projects shared their
memories of Charlie via an e-mail discussion group. He had been a friend and
mentor to many and his unwavering support and encouragement helped those who
worked on the projects develop strong services and supports for children who
are deaf-blind and their families. He made everyone feel welcome in the
community of deaf-blind projects and is remembered as an intelligent, sincere,
humorous man who cared deeply about his work and treated everyone with kindness
Charlie was a strong champion and advocate for children who are
deaf-blind. His commitment to improving their lives and his skill as a project
officer left an indelible mark on services for children with deaf-blindness in
the United States. He will be greatly missed, but his work lives on through the
projects he led and the many people he inspired. He made the world a better
place, and we will be forever grateful.
Top of Page
Shaping Collective Wisdom in the Field of
D. Jay Gense, Director
Consortium on Deaf-Blindness
Many readers may be aware that NCDB is
working closely with the Department of Education's Office of Special Education
Programs to implement a technology initiative to enhance and systematize the
national deaf-blind project network and expand opportunities for technical
assistance at state, local, and classroom levels. As this exciting initiative
moves forward, I find myself reflecting on the current and future value of
Deaf-Blind Perspectives (DBP), as well as on ways that information about
deaf-blindness and the broader field of special education can best be shared
among families, consumers, educators, and other service providers within our
field. That reflection leads me to a conclusion that a "dual reality" exists
relative to information infrastructures that the deaf-blind network can and
should exploit to make information and content available. While recognizing and
very much supporting that information dissemination efforts are increasingly
influenced by the technical, dynamic world of web-based information and
resources, as well as by increasingly popular blogs and tweets that deliver
"sound-bites" of information, I believe it's important that we not lose sight
of the inordinate value and purpose of more traditional publications like
DBP provides to its audience a dedicated mechanism to highlight
current issues in and explore content about deaf-blind education. It focuses
deeply on the specialized instructional strategies and methodologies required
by students who are deaf-blind and provides families and schools a means to
maximize this specialized knowledge by helping to integrate it with other
information and resources within the broader field of special education. That's
important. We should all offer our thanks for the significant time and
dedication each contributing author gives to ensure that readers are provided
with valuable information, and we should acknowledge and applaud the
significant time and talent of DBP's editorial staff. It's extraordinary how
much behind-the-scenes work is required to produce each issue in a way that
meets consistently high standards. The high quality of content and the expert
articulation of "message" are evident, and we are grateful.
All of us in the deaf-blind network should be cognizant of the
opportunities that this publication provides and take advantage of them. To
that end, I'd like to highlight the importance of DBP readers' direct
participation in the published content. While most articles published in DBP
address specific content from the field of deaf-blind education, some offer
more personalized perspectives on service delivery models, theories, and
approaches that may or may not be familiar to or supported by all readers.
While readers all share a personal or professional focus on striving for
improved outcomes for and achievement by infants, children, and youth who are
deaf-blind, we also have different backgrounds and points of view and can
increase our knowledge base by learning from each other. Exposure to and
reflection on differing perspectives help to shape our own. Such reflection
should be encouraged because the sharing of views and wisdom gained through
experience strengthens the accumulated knowledge of our field.
As noted above, there are a variety of ways in which we can share
our perspectives and experiential wisdom, and I challenge our readers to take
advantage of them, whether in traditional publications like DBP or through
newer technology-driven options such as discussion blogs or social media sites.
This sharing of information is particularly important during these times in
which the United States is engaged in significant educational reform efforts.
For example, many readers are aware of pending efforts to reauthorize federal
legislation, the Elementary and Secondary Education Act (or No Child Left
Behind Act), and presumably to reauthorize the Individuals with Disabilities
Education Act. Concurrently within the field of special education, a number of
initiatives in the overall design and delivery of both general and special
education services are becoming increasingly important, including Response to
Intervention (RTI) and Universal Design for Learning (UDL). It is critical that
we in the fields of deaf-blindness and other low-incidence disabilities engage
actively in conversations about these and other educational reform efforts to
ensure that they reflect the needs of children who are deaf-blind and their
families, as well as the systemic needs of the field of deaf-blindness. We each
have a responsibility to help with the clear articulation of these
In summary, I encourage you to recognize the value of Deaf-Blind
Perspectives and take advantage of opportunities to contribute to the
literature of the field. In the coming months, as NCDB moves forward with its
technology initiative, other opportunities for active contribution will become
available. Taking advantage of them will allow us to use the collective wisdom
of professionals, families, and consumers to increase our knowledge base and
our ability to serve infants, children, and youth who are deaf-blind.
Contributing to Deaf-Blind Perspectives
If you would like to submit an item to be considered for
publication in a future issue or if you have ideas and suggestions for future
issues, contact Peggy Malloy at NCDB (email@example.com; 503-838-8598 or 800-438-9376
Voice; 800-854-7012 TTY).
Deaf-Blind Perspectives publishes articles, essays,
poems, and announcements about topics related to deaf-blindness. Its primary
focus is on educational issues for children and youth who are deaf-blind.
Top of Page
Intervener Competencies Training Program in
Virginia Project for
Children and Young Adults with Deaf-Blindness
Delaware Program for
Providing a child with deaf-blindness
access to his or her educational environment requires thoughtful planning as
well as the involvement of educational team members who understand the impact
of dual sensory impairment on learning. Most special educators have never had a
student with a combined vision and hearing loss in their classroom, and many
states, including Virginia, struggle to recruit and retain teachers who have
the knowledge and skills to provide educational services to these students.
The Virginia Project for Children and Young Adults with Deaf-Blindness (VADB)
and the Virginia Department of Education (VDOE) are working to address the need
for trained individuals to work with students who are deaf-blind. They have
created a program designed to provide training and build local expertise in
intervention strategies for teams that consist of one paraprofessional and one
teacher who work together with a student who is deaf-blind. After completing a
year of online coursework through the program, teams receive an additional year
of support that includes on-site coaching.
The term intervener refers to a person who has received training
to learn specialized skills related to deaf-blindness and who works
consistently with an individual who is deaf-blind (Alsop, Blaha, & Kloos,
2000). Core competencies have been established in the field of deaf-blindness
that describe the knowledge and skills that a highly qualified intervener
should possess (Alsop, 2004; Council for Exceptional Children, 2009, p.
Federal and state special education regulations currently do not
recognize interveners as related service providers, and this lack of regulatory
recognition has led many states, including Virginia, to seek alternative ways
of ensuring that students who are deaf-blind get the supports they need to
access their educational environments. One alternative has been for local
education agencies to hire staff to serve in the role of dedicated one-on-one
teacher aides or paraprofessionals. While this meets the "consistency" part of
the intervener definition, it does not necessarily ensure that the person has
received training or has the skills to meet the needs of a student with
deaf-blindness. Intensive training is necessary for the acquisition of
sufficient skills to assist students to gain access to educational and
environmental information and, at the same time, promote their independence.
Intervener training is one of the main focus areas of the National Intervener
Task Force, which was formed in 2002 to work toward a common understanding of
the issues, needs, and goals related to interveners (Alsop, Killoran, Robinson,
Durkel, & Prouty, 2004). A member of VADB has been on the task force since
Development of the Training Program
Mark Campano, the VADB director at the time the training program
was developed, and Deborah Nickerson, president of Dreamcatchers, a statewide
deaf-blind family support group, worked in partnership with Dr. Debbie
Pfeiffer, the VDOE educational specialist in sensory impairments, to create the
Professional Training Program in Deaf-Blindness (PTPDB). The program provides
teachers and interveners with the knowledge and skills needed to encourage
communication and create access to educational environments for their students.
PTPDB uses existing resources to implement a train-the-trainers model that
relies on research-based training principles, which includes the elements
In 2008, VADB staff members selected the first group of trainees
from professionals and paraprofessionals who were known to the project. These
individuals already had some experience working with children who are
deaf-blind and were interested in sharpening their skills and understanding of
deaf-blindness. In both 2009 and 2010, applicants were recruited through the
VADB's project newsletter, electronic mailing lists, and announcements at
professional conferences. To be eligible for the program, applicants had to be
currently working with a child on the state's deaf-blind census.
Although individual applicants have been accepted, preference has
been given to those who apply as teacher/paraprofessional teams. This promotes
teamwork and mutual understanding of the needs of each student and gives
participating teachers, who may eventually serve as deaf-blind educational
consultants upon completion of the program, a deeper understanding of
deaf-blindness and the role of interveners.
Rather than develop a new training program, VADB decided to use a
nationally accredited online training program for deaf-blindness offered by
Utah State University, which is based on recommended core intervener
competencies (Alsop, 2004; Council for Exceptional Children, 2009, p. 195).
Trainees take courses in their homes or schools at times that are convenient
for them. They complete two four-credit online courses at the undergraduate or
graduate level. In addition to covering the full cost of tuition, VDOE provides
participants with all course materials.
Once the trainees are enrolled in the training program, a staff
member from VADB visits each trainee's classroom to observe their
implementation of the intervener competencies and provide suggestions to
further improve their skills. Each trainee receives an average of four coaching
visits during the program. VDOE pays the travel expenses for these visits, a
portion of VADB staff salaries, and the costs of monthly conference calls to
facilitate networking among the trainees and to provide support while they are
completing their coursework.
Evaluation of Trainees
After the trainees pass both online courses and receive a
certificate of completion from Utah State University, VADB personnel assess
their skills based on the previously mentioned intervener competencies.
Prior to entering the program, all trainees are required to obtain
permission from their administrator to participate in the coursework and other
training activities. The administrators must also agree to allow VADB project
staff to provide coaching in the classroom and to allow their personnel to use
professional development time to provide coaching to others serving children
Teachers who complete the program and meet the competencies are
eligible to be added to Virginia's Network of Consultants (VNOC) as trained
consultants in deaf-blindness and are considered qualified to share with others
the intervention strategies they have learned. VNOC is a VDOE program that
reimburses school divisions who hire consultants from an approved network of
professionals with expertise in the education of children who are deaf and hard
of hearing. Prior to the establishment of the Professional Training Program in
Deaf-Blindness, the network did not include consultants with expertise in
deaf-blind education. When trainees are selected as members of VNOC, additional
training on consultation techniques and report writing is provided to them.
During the first year of the program, four paraprofessionals and
three teachers completed the coursework. Three paraprofessionals and six
teachers completed the coursework in the second year. The effectiveness of the
training program was evident to VADB personnel during coaching visits to the
first group of trainees. It was obvious that the trainees were competent in
ensuring that their students with deaf-blindness were actively engaged in
classroom activities. Most remarkable was the quality of their communication
with their students.
The trainees themselves also noticed positive outcomes as a result
of the PTPDB. In a program evaluation questionnaire, they were asked to
anonymously list the changes in their own behaviors and their students'
behaviors that occurred as a direct result of the training. The questionnaire
was completed by 15 of the 17 trainees, and 100% reported positive outcomes for
themselves and their students. The three most frequently reported outcomes for
the trainees were: (a) increased use of objects and/or calendar systems for
communication with students (50%), (b) provision to students of more
opportunities for choice making (50%), and (c) increased use of strategies to
reduce the impact of visual impairments on access to materials and the
classroom environment (40%). The three most frequently reported child changes
were: (a) increased expressive communication (80%), (b) increased time in a
calm, receptive state (decreased frustration) (70%), and (c) increased time
spent in exploration (50%). Overall, participants overwhelmingly reported that
the coursework was worthwhile because it helped them to better understand their
students' needs and behaviors and provided them with strategies to more
effectively communicate with them.
While the program is already showing positive results, there have
been challenges along the way. As stated earlier, the first-year participants
were handpicked professionals and paraprofessionals known to VADB. Since then,
professionals and paraprofessionals working with children on the deaf-blind
census have been openly recruited to apply. Because of the intensity of the
training and the time commitment involved, it has not always been easy to
recruit and retain enthusiastic participants. The time commitment required to
take two four-credit classes seems to be less of a deterrent for teachers and
service providers who can use the credits toward recertification. However,
finding paraprofessionals who are willing and able to commit to the coursework
is challenging. Offering a stipend or credential to paraprofessionals who
complete the training may serve as an incentive for participation.
Another difficulty with recruitment is the uncertainty about
whether potential participants will be able to work continuously with one
student with deaf-blindness for the entire two years of the program. Working
closely with school administrators can address this concern to some degree, but
there is always a chance that a student will relocate or change schools.
Finally, unforeseen events in the participants' personal lives have caused a
couple of participants to withdraw from the program. Still, the program has
more than an 85% completion rate.
The positive outcomes reported by participants and observed by
VADB staff are the result of significant commitments made by everyone involved.
Trainees spend hours each semester completing coursework and implementing the
strategies they learn. The VDOE continues its strong support of the program
through its funding of the coursework, training materials, a liaison to oversee
the program, and on-site coaching visits from VADB. Local education agencies
encourage trainees to participate and to accommodate on-site coaching visits,
training activities, and potential work with VNOC. A great deal of time and
effort is required from the state deaf-blind project to recruit trainees,
coordinate activities, and provide on-site coaching. As we enter the third
year, we are planning ways to expand the program further by facilitating
opportunities to educate parents and team members who are not in the training
program about the strategies that have been implemented successfully by
training program participants. While the program continues to be a work in
progress, we are pleased to say that in view of the positive outcomes, our
efforts have been more than worthwhile.
Alsop, L. (2004). Competencies for training interveners to
work with children and students with deafblindness. Logan, UT: SKI-HI
Institute. Retrieved from
Alsop, L., Blaha, R., & Kloos, E. (2000). The intervener
in early intervention and educational settings for children and youth with
deafblindness (Briefing Paper). Monmouth, OR: NTAC, The National Technical
Assistance Consortium for Children and Young Adults Who Are Deaf-Blind.
Retrieved from http://nationaldb.org/NCDBProducts.php?prodID=50
Alsop, L., Killoran, J., Robinson, S., Durkel, J., & Prouty,
S. (2004). Recommendations on the training of interveners for students who
are deafblind. Retrieved from
Council for Exceptional Children. (2009). What every special
educator must know: Ethics, standards, and guidelines (6th ed. rev.).
Arlington, VA: Council for Exceptional Children.
Fixsen, D. L., Naoom, S. F., Blase, K. A., Friedman, R. M., &
Wallace, F. (2005). Implementation research: A synthesis of the
literature. Tampa, FL: University of South Florida, Louis de la Parte
Florida Mental Health Institute, The National Implementation Research Network
(FMHI Publication #231). Retrieved from
Top of Page
Reflections from the Field
"Reflections from the Field" is a column in
which we ask experts in the field of deaf-blindness to share their thoughts on
important issues. This column features Donna Gilles, Ed.D., associate director
of the Partnership for People with Disabilities at Virginia Commonwealth
University and the principal investigator for the Virginia Project for Children
and Young Adults with Deaf-Blindness, as well as a number of other projects.
Throughout her career as a teacher, researcher, and technical assistance
provider, Donna has been a strong advocate for people who have significant
disabilities, including serving as president of TASH from 2000 to 2003. We
asked her to respond to the following questions:
What is your perspective on the availability and quality of
services for children who are deaf-blind and their families? How do you think
things have changed for better or worse over the past ten years, and what, if
anything, do you think needs to be done to improve services in the
When I became a teacher a long time ago, my passion was to work
with children with significant disabilities—children who were nonverbal,
had autism or multiple disabilities, and severe cognitive disabilities. Over
time, I moved from teaching to providing technical assistance and training
through a variety of projects, including projects for children with
deaf-blindness. Since 1995, I have been the director or principal investigator
for two state deaf-blind projects, first in Florida and now Virginia. It wasn't
until I became a director of a state deaf-blind project that I realized how
much need for assistance existed then and continues to exist among families of
children who are deaf-blind and schools and community services working with
children who are deaf-blind. And although the projects concentrate on a
"low-incidence" population, there is enough work for them to last a
I am now in my fourth deaf-blind project grant cycle spanning two
states, and the Office of Special Education Programs' (OSEP's) message all
along, has been, "We want the biggest bang for our buck delivered in the most
efficient manner possible." With each iteration of announcements inviting
applications for funding for the projects (1995, 1999, 2003, 2008), the message
has been restated, strengthened, and refined. The ever-evolving requirements
have included creating and sustaining stakeholder partnerships, using a
multifaceted advisory board as a mechanism for needs assessment, building
capacity for sustainability, demonstrating impact on other populations,
developing communities of practice, reporting effort and effect equally,
prioritizing effect over effort, leveraging resources, collaborating with the
OSEP Technical Assistance and Dissemination (TA&D) Network (and not just
NCDB), improving literacy instruction, and training interveners to enhance
In the 2004 reauthorization of IDEA, the regulatory language
authorizing the work of the state and multistate deaf-blind projects (formerly
34 CFR 307.11) was eliminated, and although the funding for the projects was
maintained, their vulnerability became salient as they were relegated to equal
status with all other Part D programs. This means that their existence is now
truly discretionary instead of comfortably authorized. Without specific
language in the regulations, the push to prove the worth of the projects has
become increasingly important. Those of us who work on the state deaf-blind
projects can no longer live in our silos of individual projects; we have had to
become active members of the national OSEP TA&D Network. We can no longer
just say that we did what we promised; we must demonstrate that what we did
worked. We can no longer spend money on activities that are not going to lead
to the development of the next generation of knowledgeable professionals; we
must make sure that our work will be sustained when we are gone.
A very wise person asked me recently if I thought that the
services provided by the deaf-blind projects would be sustained if the funding
dried up. The speed with which I said "No" surprised me as much as it did her.
There are a myriad of challenges to sustaining the work of the state projects.
First, there are very few classrooms in the country that are dedicated to
students who are deaf-blind, as we define it. So, one challenge is how to train
enough teachers to provide an appropriate education for students who are
deaf-blind when students may be in a different classroom every year and/or
teachers we have trained may not have eligible students in their classrooms
every year. A similar challenge is how to protect students from receiving all
of their instruction from a well-trained paraprofessional instead of the
majority of it from a certified teacher. A more recently recognized challenge
is how to ensure that literacy instruction is delivered to children who are
deaf-blind with equal frequency to that of children without disabilities when
so few educators know how to teach literacy skills to children with multiple
disabilities, let alone to those needing Braille. Because this is a highly
specialized field, meeting these challenges may fuel a false sense of
invincibility. That is, the vast need that project staff see everyday can lull
us into thinking that the need for targeted services for children who are
deaf-blind will always be recognized and funding provided. But, it is important
to remember that in the big scheme of all things federal, in an economy that is
not likely to recoup to its past level, 10,000 children might one day be viewed
Looking to the future and recognizing both the vulnerability and
the potential collective power of the state deaf-blind projects may help us
become more aware of what we need to accomplish our mission to provide quality
educational services for children who are deaf-blind. I was at a recent
conference in D.C. where several offices of the U.S. Department of Education,
including the TA&D projects, collaborated around the topics of leveraging
resources and technology. It was my first meeting with national projects, and I
was surprised by the number of them that are layers removed from the child
level. The deaf-blind projects are the only projects in the OSEP TA&D
Network that can come close to producing measurable child change. They are also
the only TA&D programs that have a national project (NCDB) that supports
state projects, which, in turn, ensure that technical assistance and
dissemination is locally relevant and reliably available. For these reasons,
the work of NCDB and our state projects is critical to keeping the TA&D
Network alive. Yet the deaf-blind projects are vulnerable because they target
an extremely low-incidence population. In order to develop a national presence,
our projects need social capital—the kind of relationships where the
national TA&D projects can go to bat for us because we have connected with
them, done something for them, asked them to do something for us. We need to
start a dialogue about how individual state projects can be seen, heard,
recognized, respected, and accessed. We need to figure out how to make what we
have to offer an asset beyond deaf-blindness, recognizing that what we know is
relevant to the larger group of infants, toddlers, school-aged children, and
young adults with disabilities. The days of being perceived as being important
only to children who are deaf-blind have to end. I really believe that the
survival of the deaf-blind projects, and the essential services they provide
for children who are deaf-blind, depends on it.
With all of that said, one area of expertise we have to offer is
the teaching of augmentative and alternative communication methods. The most
common characteristic among the students I taught was that adults communicated
for them. It was assumed they would never be able to do it for themselves. To
this day, I feel that providing people with disabilities a means of
communicating a more sophisticated message than requesting food, drink,
bathroom, and break is the single most important thing we can do in our field.
Deaf-blind projects have led the way on some major strategies. For example, the
popular use of visual schedules for children with autism spectrum disorders as
a foundation on which to build better communication skills followed the
long-established use of calendar systems in the field of deaf-blindness.
Another concept that we recognized long before others is that activities have
beginnings, middles, and ends and that children need to experience all parts of
them to succeed in adding skills to their repertoire. We have expertise to
offer others, we just need to figure out the pieces of our expertise that
others will value and get the word out that we really do know what to do with
children who have complex learning needs. I am not suggesting that we work with
other groups on an ongoing basis; we don't have the resources for that. I am
just suggesting that power comes from looking as if and behaving as if our work
in the field of deaf-blindness can have an impact on more than 10,000
Top of Page
Our Life in Music
Crystal and Danielle Morales
We are 27-year-old twin musicians from
Austin, Texas. We were born three months premature, and since birth we have
lived with hearing and vision loss. Our vision impairment is due to a number of
conditions—cortical visual impairment (affecting visual processing in the
brain), nystagmus, amblyopia, severe myopia, and severe strabismus. We also
have sensorineural hearing loss as a result of ototoxic medications that we
received at birth, and we use high-power hearing aids. We have been playing and
composing music since the age of 6, and this article describes our musical
background and interests.
We are self-taught musicians who learned by playing songs we heard
on the radio, one note at a time, on a small Casio keyboard with 8-bit sounds
and small keys. As we grew older, we progressed to more advanced keyboards and
synthesizers. We used the same process to learn to play other instruments as
well, such as the dulcimer and cello. Currently, we create our compositions
using the piano, synthesizer, electric bass, cello, violin, and hammered
Synthesizers—electronic instruments that are designed to
create a variety of sounds—are an important part of our work. Depending
on the type of synthesizer, programming is executed by using knobs, sliders,
and controls or by entering numbers into the CPU. Programming synthesizers
gives us the freedom to create any sound imaginable. We can completely control
every aspect of a sound from its beginning to its end. The basic structure of a
synthesizer consists of a signal generator, which emits a sound; a filter,
which shapes the waveform; and an amplifier, which controls how loud the sound
is over time. Our first "real" synthesizer was a Casio CZ-1000 programmable
synthesizer. It uses numbers to alter aspects of a waveform to change its
overall shape and create a completely new sound.
Our band name is Jumelle, meaning twins in French. This name was
given to us by our Grandmother Danielle, who is a native of France. We compose
music every day, and our style ranges from jazz, new age, and classical to
retro 80s synth-pop and techno. We enjoy experimenting with new ways to create
music that is unique and fun. We have two CDs, All Things Possible, and
Meditations. The latter was a collaborative project with our local Baha'i
Center. These CDs are our older compositions. Our newer ones can be heard on
YouTube, a website that allows users to watch, upload, and share videos
worldwide. You can link to our music channels by going to
www.youtube.com/user/TheSynthFreq and www.youtube.com/user/MsMotif6. We are
also members of online forums such as the Association of Adult Musicians with
Hearing Loss and the Deaf Musicians section of AllDeaf.com. These forums
provide opportunities for us to discuss hearing loss issues, such as the most
useful kind of hearing aids, with other musicians.
Although performing live gives us great joy, YouTube is our
current venue for sharing our music. As every visually impaired person knows,
finding adequate transportation is difficult, and this is a major obstacle for
us. Although public transportation is wonderful in Austin, it is not possible
to transport our equipment and synthesizers from place to place on the city
bus. We hope to solve this problem and return to playing live music again in
the city we love so much. In the past we performed at local coffee shops,
bookstores that sold our CDs, a radio station, a few local colleges, and at the
Arts Council in Denton, Texas, which features artists with disabilities. We
also made an appearance on a local morning news show.
To play and compose music in our studio, we use a variety of
assistive devices. We cannot hear high or low frequencies. On a piano, low
notes just sound like noise and we can't hear higher notes at all. Our hearing
aids are designed to shift these frequencies into the audio range that we can
hear. In order to write a bass line, for instance, we shift lower notes to a
higher octave that we can hear better. We then memorize the notes in the higher
octave and shift them back to the original octave when making a recording. The
Phonak iCom device is very helpful. It streams audio directly from a
synthesizer's amplifier to our hearing aids using Bluetooth. We both wear
Phonak Naida V UltraPower hearing aids.
To modify our studio for our vision needs, we have arranged our
equipment in a way that allows easy access to switches and controls and we try
to keep all wires out of the way. Our sequencer is on a music stand so that its
screen can be viewed more easily, and a magnification sheet, taped to the
screen, is used to minimize eyestrain. We use Braille and large-print reference
sheets that have technical information describing how to operate and program
Our synthesizers have Braille labels to identify switches,
controls, connection ports, and parameter buttons. We have placed the labels
for the connection ports upside down so that we can identify them without
having to move the keyboard. The light source in a room or on stage is an issue
for most visually impaired performers. Braille labels allow us to find switches
and controls quickly and ensure that we can accurately locate important
functions. They are the most effective type of labels since large-type ones do
not fit on a synthesizer's complex and crowded control panel. Having to put on
reading glasses to search for a switch or control would not be ideal during a
rehearsal or on stage. We also use bright green packing tape on small items
that are difficult to see, such as SD (secure digital) memory cards, small
metal jack adapters, and cables.
To read the LCD displays on our
synthesizers during the programming process, we use tinted magnification lenses
and high-power reading glasses. Fortunately, all of our synthesizers have
high-contrast dot matrix LCD displays, which were very popular in the 1980s
(most of our synthesizers are over 20 years old). They are easier to read
because they have a 36-point font size and were designed to accommodate
performers on stage in low lighting. When naming synthesizer programs, we use
all capital letters to make the display easier to read.
Another technological application that we use in our studio is the
BrailleNote mPower. This is a small Braille computer that functions like a
laptop with a word processor. We use the BrailleNote for concert notes,
programming terminology, song ideas, and notes.
Our hearing and vision
impairments affect us as musicians in many ways, but we don't let them stop us.
We would love more than anything to make music our main career, although we
have Bachelor of Arts degrees in vocational rehabilitation counseling/human
resources and have that choice of a career as well.
We have been composing music for 20 years and will continue to so.
We can't imagine ourselves being truly happy doing anything else. Our goal is
to work in the music industry in some capacity. Being musicians and composers
means everything to us. We don't know life without writing music, listening to
music, and being inspired by other musicians. Being a musician takes you on a
personal quest to write new and better music and to challenge yourself to
become more skilled at what you do. Performing a successful concert and knowing
that your audience enjoyed it with you is the best feeling in the world.
Top of Page
Striving for Excellence: New Standards for
Deafblind Services in Ontario
In the province of Ontario there is a wide
range of services offered to people with deafblindness, including residential
programs, community intervenor (the Canadian spelling of the term) programs,
accessible housing, and education. Although a variety of agencies and
organizations provide these types of services, until recently there were no
formal standards to evaluate their consistency and quality. To address this
need, in the Fall of 2009 DeafBlind Ontario Services embarked on a project,
funded by the Ontario Trillium Foundation, to develop standards to ensure
consistent quality of service to people who are deafblind. Standards put
organizational values and principles into practice, provide a blueprint for
effective and efficient operations, and act as a tool for continually
evaluating and improving service.
Development of the Standards
Initially, the plan was to create standards that focused solely
on intervenor services. Intervenors facilitate interactions between people who
are deafblind and their environments. They are trained in a variety of
communication methods and in the use of assistive devices, and they act as
sighted guides and communication partners. They provide information using the
deafblind person's preferred mode of communication. The goal of intervention
services is to promote an individual's independence across his or her
In Ontario, the use of intervenors is an essential part of
services for people who are deafblind. For example, adults and children who are
deafblind may live at home independently or with family and receive assistance
from an agency that provides intervenor services in their homes and
communities. There are also specialized residential programs exclusively for
deafblind adults that provide intervenor services 24 hours a day, 7 days a
week. In Toronto, there is a fully accessible, adapted apartment complex that
provides people who are deafblind with affordable housing staffed with
intervenors available on an as-needed basis. Because intervenor services often
occur in the context of these other types of direct services to people who are
deafblind, we soon realized that the standards had to be broad enough to cover
a range of services, not just intervenor services.
The first step in the development of the standards was to form an
advisory committee. The Standards Advisory Committee consisted of
representatives from nine organizations that provide intervenor services in a
variety of settings, including schools for children who are deafblind, a
community college that has an intervenor-training program, a national advocacy
organization for people who are deafblind, and several agencies that provide
residential or community services. It was crucial to the success of the project
that the committee consist of a diverse range of people, agencies, and
Throughout the process, the committee struggled with the question
"How can we ensure that people who are deafblind have services that meet their
individual needs?" This was a difficult question to answer. People with
deafblindness are not a homogeneous group. Their needs, dreams, and lives are
unique and diverse. Our task was complex because no single formula or checklist
could be developed to determine what quality intervention looked like.
Everyone on the committee had direct connections with intervenor
services, and most had worked as intervenors. However, because none of the
committee members had previous experience developing standards, we hired a
consultant to provide guidance throughout the process. We decided that our
first step should be to conduct a comprehensive literature review to identify
existing standards. As the project coordinator, I worked with the consultant to
review standards and best practices developed by sister organizations such as
Deafblind International (n.d.) and Sense (Lewin-Leigh, n.d.). We also consulted
with accreditation bodies around the world to learn how data associated with
standards should be measured and reported. Our full committee then used this
information as a starting point for developing our own standards.
The committee worked to make standards specific, but also broad
enough to apply to a variety of programs and encompass the diverse needs of
people who are deafblind. In addition to covering intervenor services and other
types of direct services, they cover management characteristics (governance,
financial arrangements, and human resource policies) that are an essential part
of the functioning of any organization. The result is a set of standards
entitled Standards of Excellence for People Who Are Deafblind.
The standards document is divided into four sections: (a)
governance—assessing the quality of an agency or organization's
management practices; (b) human resources—assessing the quality of human
resource policies and procedures for recruitment, retention, and training of
employees and volunteers; (c) financial accountability—best practices for
the management of finances; and (d) direct services/intervenor
services—provision of services in a way that respects the rights of
people who are deafblind and meets their needs. Each of these sections contains
specific standards. For example, the direct service standards for client rights
include the following:
- The organization has policies and procedures in place to
inform people who are deafblind and/or their family or advocate about their
- The organization supports the right of people who are deafblind
to have services that are accessible.
- The organization respects the right of individuals who are
deafblind to have intervenor services.
- The organization recognizes the right of the person who is
deafblind to develop and express their individuality through choice, freedom,
- The organization recognizes that people who are deafblind are
at risk of being isolated and supports and/or facilitates community involvement
Quality indicators are provided for each standard, and the
document includes space for organizations to indicate whether a standard has
been met fully, partially, or not at all and a column to list supporting
evidence that elaborates on the extent to which a standard has been met.
Examples of possible types and sources of supporting evidence are provided. The
quality indicators provide a way to monitor and evaluate progress, but not all
will apply to every organization.
The purpose of the standards is to provide a tool to
facilitate discussion and inquiry into what an organization does well and
identify areas where improvement is needed. The committee resisted creating a
template for "cookie cutter" organizations. Organizations are encouraged to
adapt the standards to meet their needs and the needs of their clients. They
can also use them to compare their practices against those of other agencies in
the field, share new ways of doing things, and learn from each other. The
standards publication is a living document and will likely change with time as
it is adapted to meet the distinctive needs of each agency that uses it.
Pilot Testing and Implementation
It took approximately one year to develop a first draft of the
standards. Two 3-month pilot projects—one at an agency representing
people with congenital deafblindness and one at an agency representing people
with acquired deafblindness—were conducted to test the initial draft.
Feedback was gathered from intervenors, management personnel, administrative
staff, volunteers, and most importantly, people who are deafblind. The feedback
from the pilot projects was very positive, and we found that the standards
worked well in both agencies. Not all of the standards applied to both types of
agencies, but this had been anticipated. Standards that do not apply to a
particular agency can simply be ignored.
Each of the agencies found the pilot-testing process to be an
enriching and team-building experience that uncovered many hidden strengths. As
a result, they were inspired to share what they know with others. They
developed several new policies and put some of their best practices in writing
for interagency use.
As a result of feedback from the pilot, the committee made minor
changes to the standards and developed a how-to guide that describes the goals
and parameters of the standards and tips for their successful use. Resource
binders and CD-ROMs containing the standards and the how-to guide have been
distributed to all agencies represented on the committee and all other agencies
supporting people who are deafblind in Ontario. It is the goal of the Standards
Advisory Committee to make these materials available to all agencies that
provide services to people who are deafblind, in order to promote consistency
in services across the province of Ontario.
For more than a year, DeafBlind Ontario Services and the
Standards Advisory Committee worked to develop and implement holistic standards
of practice for organizations that serve people who are deafblind. Along the
journey, we confirmed what anyone working with people who are deafblind already
knows, that the uniqueness of communication with people who are deafblind
cannot be simplified or compartmentalized. What we can do as organizations is
create a culture of consistency, responsibility, and accountability to our
clients, the people who are deafblind who touch our lives each day. It is our
belief that the Standards of Excellence for People Who Are Deafblind is an
important contribution to this ongoing process.
For more information about the Standards of Excellence Project or
to obtain a copy of the standards, contact DeafBlind Ontario Services:
Deafblind International. (n.d.). Guidelines for best practice
for service provision to deafblind people. Retrieved from
Lewin-Leigh, B. (n.d.). Standards for services for adults who
are deafblind or have a dual sensory impairment. Retrieved from
Top of Page
New Evidence Standards for Single-Case Design
The What Works Clearinghouse (WWC) recently released evidence
standards for single-case design (SCD) studies. Because the low incidence of
deaf-blindness makes it difficult to use traditional research designs that
require a large number of participants, this is an important advance for
researchers who study interventions for children and adults who are deaf-blind.
Like random assignment studies, well-designed single case designs can attain
the highest WWC rating, "meets standards." The publication What Works
Clearinghouse: Single Case Design Technical Documentation (http://ies.ed.gov/ncee/wwc/pdf/wwc_scd.pdf).
includes an overview of SCD studies and the types of questions they are
designed to answer.
New Research Study: Understanding Sleep Apnea in
Children with CHARGE Syndrome
Currently, there is very little information available concerning
symptoms or treatment options of sleep apnea in the CHARGE Syndrome population.
The principle investigator of this study, Dr. Kim Blake, is hoping to gather
information in this area, as well as determine the effects of tonsil and
adenoid removal. Participants in the study will be asked to complete a short
series of questionnaires regarding their child’s sleep habits. The child
must be between birth and age 14 and have a confirmed clinical or genetic
diagnosis of CHARGE Syndrome. A previous diagnosis of sleep apnea is not
necessary. For more information, contact the research assistant Carrie-Lee
Trider at firstname.lastname@example.org.
New Research Articles
The number of research articles on important topics in
deaf-blindness continues to grow, adding to the knowledge base of the field.
The following is a selection of research studies published in a variety of
peer-reviewed journals over the past year.
Arndt, K. (2010). College students who are deafblind: Perceptions
of adjustment and academic supports. AER Journal: Research and Practice in
Visual Impairment and Blindness, 3(1), 12-19.
Bashinshki, S. M., Durando, J., & Stremel Thomas, K. (2010).
Family survey results: Children with deaf-blindness who have cochlear implants.
AER Journal: Research and Practice in Visual Impairment and Blindness,
Fellinger, J., Holzinger, D., Dirmhirn, A., van Dijk, J., &
Goldberg, D. (2009). Failure to detect deaf-blindness in a population of people
with intellectual disability. Journal of Intellectual Disability Research,
Hartmann, E. S. (2010). Understanding teachers' self-efficacy to
support children with deaf-blindness. AER Journal: Research and Practice in
Visual Impairment and Blindness, 3(3), 91-97.
Ingraham, C. L., & Andrews, J. F. (2010). Hands and reading:
What deafblind adult readers tell us. British Journal of Visual Impairment,
Janssen, M. J., Riksen-Walraven, J., van Dijk, J. P. M.,
Ruijssenaars, W. A. J. J. M. (2010). Interaction coaching with mothers of
children with congenital deaf-blindness at home: Applying the diagnostic
intervention model. Journal of Visual Impairment and Blindness, 104(1),
Johansson, M., Gillberg, C., & Rastam, M. (2010). Autism
spectrum conditions in individuals with Möbius sequence, CHARGE syndrome,
and oculo-auriculo-vertebral spectrum: Diagnostic aspects. Research in
Developmental Disabilities, 31, 9-24.
Johnston, D. R., et al. (2010). Ophthalmologic disorders in
children with syndromic and nonsyndromic hearing loss. Archives of
Otolaryngology Head Neck Surgery, 136(3), 277-280.
Lina-Granade, G., Porot, M., Vesson, J.-F., & Truy, E.
(2010). More about cochlear implantation in children with CHARGE Association.
Cochlear Implants International, 11(1), 187-91.
Narayan, J., Bruce, S. M., Bhandari, R., & Kolli, P. (2010).
Cognitive functioning of children with severe intellectual disabilities and
children with deafblindness: A study of the perceptions of teachers and parents
in the USA and India. Journal of Applied Research in Intellectual
Disabilities, 23, 263-278.
Nelson, C., Janssen, M., Oster, T., & Jayaraman, G. (2010).
Reliability and fidelity of the van Dijk assessment. AER Journal: Research
and Practice in Visual Impairment and Blindness, 3(3), 71-80.
Pizzo, L., & Bruce, S. M. (2010). Language and play in
students with multiple disabilities and visual impairments or deaf-blindness.
Journal of Visual Impairment and Blindness, 104(5), 287-297.
Prain, M., McVilly, K., Ramcharan, P., Currie, S., & Reece,
J. (2010). Observing the behaviour and interactions of adults with congenital
deafblindness living in community residences. Journal of Intellectual and
Developmental Disability, 35(2), 82-91.
Rowland, C., Stillman, R., & Mar, H. (2010). Current
assessment practices for young children who are deaf-blind. AER Journal:
Research and Practice in Visual Impairment and Blindness, 3(3), 63-70
Top of Page
For Your Library
New Publications and Products
Practice Perspectives: Authentic Assessment
National Consortium on Deaf-Blindness, 2010, 4 pages.
publication describes an authentic approach to the assessment of communication
and learning that emphasizes gathering information about children in their
everyday environments during normal activities. This is the sixth in series of
publications called Practice Perspectives. This and previous issues of Practice
Perspectives are available on the web (standard print, large print, and
For print or Braille copies, contact NCDB at 800-438-9376 (Voice), 800-854-7013
(TTY), or email@example.com.
Victory and Fragrance: Kai Hsin's Story [DVD]
Pacific and Hawai'i Deaf-Blind Projects, 2010, 17 minutes.
tells the story of Kai Hsin, a girl who has CHARGE Syndrome. The video is
narrated by Kai Hsin's mother who describes her daughter's history of medical
problems and surgeries, the educational and other special services that helped
her learn and develop, and how she and her husband have cared and advocated for
Kai Hsin throughout her life. At the end of the video, Kai Hsin (now 11 years
old), who communicates via sign language, tells her own story of her family,
her school, her interests, and what she would like to be when she grows up.
Cost: $10.00. To order go to www.cds.hawaii.edu/main/store
or call 808-956-5861.
Timothy S. Hartshorne, Margaret A.
Hefner, Sandra L. H. Davenport, & James W. Thelin. Plural Publishing, Inc.,
2010, 381 pages.
This book provides comprehensive information about the
sensory, physical, and psychological challenges faced by children with CHARGE
syndrome and ways to overcome these challenges. Available from the publisher
AER Journal Special Issue: Current Practices with Children Who
Deborah Chen, Guest Editor.
The Summer 2010
issue of AER Journal: Research and Practice in Visual Impairment and Blindness
contains seven articles about the education of children with deaf-blindness
(four original research articles and three practice or theory-based articles).
The fall issue of the journal will be a special issue on deaf-blindness in
adults. An annual subscription to the journal costs $109 for institutions in
the U.S. and $135 for institutions outside the U.S. Single issues can be
purchased for $30.00 (in the U.S.) and $40.00 (outside the U.S.). To order call
800-627-0326 (e-mail firstname.lastname@example.org).
Child-Guided Strategies: The van Dijk Approach to Assessment
(Guidebook and DVD)
Catherine Nelson, Jan van Dijk, Teresa Oster,
& Andrea McDonnell. American Printing House for the Blind, 2009.
This guidebook describes the assessment of children who are deaf-blind using an
approach developed by Dr. Jan van Dijk. Assessment techniques and general
intervention strategies are provided for a child's behavioral state, orienting
response, learning channels, likes and dislikes, memory, social interactions,
communication, and problem-solving skills. Video clips of two children
demonstrating the concepts described in the book are provided on a DVD.
Available from the American Printing House for the Blind. Phone: 800-223-1839.
E-mail: email@example.com. Web:
Let's talk Limbic: The Role of the Emotional Brain in the Well
Being of Persons with Multiple Sensory Impairment [DVD]
Dijk, Catherine Nelson, Arno de Kort, Johannus Fellinger, & Rick van Dijk.
This DVD is for professionals and paraprofessionals
who want to understand the deep emotional motives of a person with multiple
sensory impairment. It describes the functioning of a major part of the human
emotional brain, the limbic system and illustrates how sensory deprivation
affects emotional well-being. Available from Vision Associates: 295 NW Commons
Loop, Suite 115-312, Lake City, FL 32055. Phone: 407-352-1200. Web:
Providing and Receiving Support Services: Comprehensive
Training for Deaf-Blind Persons and Their Support Service Providers
Seattle DeafBlind Service Center, 2010.
This curriculum is designed
to be used to train support service providers (SSPs) to work with people who
are deaf-blind and to train people who are deaf-blind to work with SSPs.
Available free of charge at
Deafblindness: Educational Service Guidelines [Now available
Marianne Riggio & Barbara McLetchie (Eds.). Perkins
School for the Blind, 2008.
These guidelines, first published in 2008,
are now available for free online at
The guidelines offer state and local education agencies a framework from which
meaningful, appropriate programming for students who are deafblind can be
developed. Bound copies of the guidelines can still be purchased from the
Perkins store (www.perkins.org or
Environmental Description for Visually and Dual Sensory
Riitta Lahtinen, Russ Palmer, & Merja Lahtinen.
A1 Management UK, 2010.
This book presents techniques to provide
real-time environmental description of everyday experiences ranging from life
activities to artistic interpretations. It focuses on both the describer's and
receiver's perspectives and gives practical examples and exercises for
professionals who work with people who are deaf-blind or have visual
impairments. Available from the Ear Foundation in the UK (www.earfoundation.org.uk/shop).
New Perkins Webcasts
Perkins School for the Blind has developed a variety of informative webcasts
presented by experts in the field of visual impairment and deaf-blindness and
more are planned for the future. Recently added presentations include
"Reflections on Deafblindness: Hands & Touch," and "CHARGE Syndrome:
Teaching Strategies for Sutdents." These and previous webcasts can be viewed
free of charge on the Perkins website.
Who's Who on My Child's Team Videos
California Deaf-Blind Services (CDBS) is developing a series of online videos
that highlight the roles of specialists often included on educational teams for
students who have both hearing and vision problems. Currently two videos
("Teacher of the Deaf/Hard of Hearing" and "Occupational Therapist") have been
completed. Six additional videos are planned.
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Invitation to Apply to NLCSD Fellows Program
Applications for fellowships for the second and
final cohort of the National Leadership Consortium in Sensory Disabilities
(NLCSD) are now being accepted. NLCSD Fellows participate in a structured
added-value enrichment program in addition to their individual Universities'
doctoral programs of study. Sponsored by the U.S. Department of Education,
Office of Special Education Programs, the consortium consists of 25
universities with doctoral programs that have an emphasis in one or more of the
three sensory impairment areas: blind/visually impaired, deaf/hard of hearing,
and deafblindness. Applications will be accepted until December 31, 2010. The
cohort will begin their studies in the fall of 2011. Information about the
application process and the application are available at
New Interpreting Task Force Website
The National Task Force on Deaf-Blind Interpreting
is pleased to announce their new website! Visit the site at
www.deafblindinterpreting.org to learn more about the task force and find links
to the recently updated Annotated Bibliography on Deaf-Blind Interpreting and
New on the NCDB Website
The NCDB website is an excellent resource for in-depth,
high-quality information about deaf-blindness (nationaldb.org) and it is widely
used by people in the United States and throughout the world. Last year there
were 1,736,266 visits to the site. Listed below are some of our new website
features. If you would like more information call 800-438-9376 and we would be
happy to give you a tour of the range of resources that are available.
DB 101 is designed to provide an introduction to educational
issues for children who are deaf-blind. It provides links to a selection of
introductory materials on the nature of deaf-blindness, the impact of combined
vision and hearing loss on communication and social interactions, and the
importance of individualized educational strategies and supports.
This section of our website contains family stories, important
information that families need about educating children who are deaf-blind,
advocacy resources, and a description of the work of family specialists at
state deaf-blind projects.
These graphic map displays of National Deaf-Blind Child Count
data provide a geographical presentation of state data organized and displayed
by a variety of criteria including age, race/ethnicity, and educational
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Conferences and Events
We had so much great information in this issue of Deaf-Blind
Perspectives, that we ran out of room for announcements of upcoming events. For
a list of upcoming conferences and trainings, go to
nationaldb.org or call DB-LINK Information
Services at NCDB. Phone: 800-438-9376. TTY: 800-854-7013. E-mail:
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Do you need information about deaf-blindness or
to help a child or youth who is deaf-blind?
Contact DB-LINK Info Services at the National
Consortium on Deaf-Blindness
Visit our web
Together We Make The Connections
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