The Teaching Research
In This Issue
Deafblindness: Educational Service
Guidelines: A Product of Our Strengthening Field
Home Visits with Families and Their Infants Who
Just Say No to Drive-bys
From Ignorance to Understanding: Adventures in
Outreach to Improve Early Identification in
Whats New at AADB?
For Your Library
Conferences and Online Learning
Deafblindness: Educational Service
A Product of Our Strengthening Field
Perkins School for the Blind
In the middle 1970s, the field of
deafblindness was young, as was the special education system that required that
all students receive a free and appropriate public education. During that time,
the federal program that supported the development of specialized teaching
approaches, personnel preparation, and associated programs to serve students
who were deafblind focused almost entirely on the needs of students born with
Congenital Rubella Syndrome. Teachers who were trained in specialized
university programs typically obtained work teaching classrooms of children
with deafblindness in schools for the blind or in state schools for children
with cognitive disabilities. They also moved into jobs in amply funded regional
centers offering services to children and youth with deafblindness.
Over the next three decades many significant changes influenced
the services that were provided for students who are deafblind. The two most
pronounced changes were a widening diversity within the population of children
and youth with this disability and an increased emphasis on serving children in
programs closer to their homes. Also during this time span, more of the
financial responsibility for educating students with deafblindness fell on
states and local education authorities, and less of this funding was directed
toward personnel preparation. The federal program rightfully shifted to a model
of technical assistance and information sharing.
During this period, we struggled as a field to provide students
and their families with quality educational programs. A severe shortage of
skilled professionals in deafblindness made advocating for childrens
rights to these services complicated, and creating a system to facilitate
educational teams access to experts in deafblindness was seen as a luxury
that few states could afford. Ironically, graduates of personnel preparation
programs in deafblindness often had difficulty finding jobs in the field. So,
we were in a real Catch-22 situation.
During the past several years, however, we have seen a wonderful
coalescence in our field, largely because of the commitment of professionals at
state, regional, and national levels who represent students with deafblindness
and of students family members and strong family organizations, who have
become very articulate advocates for the rights of students with this
disability to a truly appropriate education. Through efforts such as intervener
training programs, the creation of endorsements in deafblindness in some states
as a part of their credentialing systems, the formation of Council for
Exceptional Children specialized professional associations (SPAs) in
deafblindness, and the establishment of the Helen Keller Fellows Program, our
field has risen to face the challenges inherent in providing special education
services to students with one of the most complex disabilities. Providing a
free and appropriate public education to students with deafblindness requires
that state and local education agencies recognize their unique educational
needs and put into place systems that will ensure access to a quality education
that is equal to that of their sighted-hearing peers.
The publication Deafblindness: Educational Service Guidelines
(Riggio & McLetchie, 2008) was developed collaboratively by leaders in the
field of deafblindness who represented state deafblind projects, university
training programs in deafblindness, the National Family Association for the
Deaf-Blind (NFADB), the National Consortium on Deaf-Blindness (NCDB), and the
National Association of State Directors of Special Education (NASDSE). Its
purpose is to serve as a best-practice guide that educational administrators at
state, local, and program levels can use to better understand the impact of
combined vision and hearing losses on learning and to respond to the need for
specialized assessment, program planning, and service delivery.
Many people are familiar with the publications Meeting the
Needs of Students Who Are Deaf or Hard of Hearing: Educational Service
Guidelines (2006) and Blind and Visually Impaired Students: Educational
Service Guidelines (1999). Both of these are best-practice documents that
present foundational knowledge about the nature and needs of students with
hearing and vision losses, personnel issues, assessment methods, programs,
services, and placement options, as well as administrative considerations.
Deafblindness: Educational Service Guidelines (Riggio & McLetchie,
2008) addresses the same topics. Key themes are emphasized throughout the
- Deafblindness is a unique and complex disability. Educators who
serve students who are deafblind must have the necessary knowledge and skills
to provide adequate services.
- Students and educational teams require the guidance of a
deafblind specialist who has the knowledge and skills necessary to guide
planning and to provide technical assistance and direct services.
- Communication, the foundation for all learning and the building
of social relationships, is a primary need that must be addressed in a
thoughtful and comprehensive way in the development and implementation of
individualized educational programs for students who are deafblind.
- Most students require one-on-one communication support in order
to access their learning and social environments. This may be in the person of
an intervener, who is a paraprofessional with specific training to meet the
needs of students who are deafblind.
- Students who are deafblind require unique and creative skills
on the part of assessment team members, who must understand the impact that
deafblindness has on students development. They must also understand and
be able to use communication forms that are appropriate for students who are
deafblind, and they must be willing to work cohesively on teams to share
information that will result in fair appraisals of students abilities,
challenges, and priorities for instruction.
- While every special education team must by law include parents
and other family members as central team members, this is especially critical
for students who are deafblind. Family members possess a unique understanding
of their childrens communication and learning abilities that educational
teams must tap in order to complete appropriate assessments and to deliver
appropriate educational services.
- The design of services and placement for students with
deafblindness requires very thoughtful and personalized decision making. The
goal of placement in the least restrictive environment (LRE) will only be
realized when students have full access to the curriculum and educational
environment in their own communication forms, engage in authentic interactions
with both peers and professional personnel, and achieve according to the
highest possible performance standards. Services must be well coordinated and
implemented in a collaborative manner to meet the identified needs of
- It is important that state and local administrators work
collaboratively and creatively with existing resources and develop new
resources when necessary to expand state capacity and to ensure that students
who are deafblind receive the specialized services necessary for equal access
It is critical that the information contained in this publication
be supplemented by training for state and local service providers to guide the
development of services. Currently, representatives from state deaf-blind
projects, Perkins School for the Blind, NCDB, NFADB, and NASDSE are working
together to develop training modules on issues that must be addressed by state
and local systems. There is a focus on building a pool of trainers who have
expertise in the field and who are able to share their knowledge effectively.
Over the next several months, all of the partner agencies in this project will
work closely with the Department of Educations Office of Special
Education and Rehabilitative Services and the field, to develop an
implementation plan that will carry the message forward.
Blind and Visually Impaired Students: Educational Service
Guidelines. (1999). Watertown, MA: Perkins School for the Blind.
Meeting the Needs of Students Who Are Deaf or Hard of Hearing:
Educational Services Guidelines. (2006). Alexandria, VA: National
Association of State Directors of Special Education.
Riggio, M. & McLetchie, B. (Eds.) (2008). Deafblindness:
Educational Service Guidelines. Watertown, MA: Perkins School for the
Home Visits with Families and Their Infants Who
California State University,
Georgia State University
Families of infants and young
children who are deaf-blind are likely to receive home visits from multiple
service providers representing a variety of agencies. The main purpose of
home-based early intervention is to help families promote the development of
their children who have complex learning needs. To meet this goal, home
visitors individualize home visits according to each familys priorities
(Ridgley & OKelley, 2008), coach family members to use strategies
that help their child learn and develop (Chen & Klein, 2008), and provide
information and support (McWilliam & Scott, 2001).
Home visiting is a complex process that requires thoughtful
planning and skilled practices to ensure effectiveness. According to a recent
survey in California (Klein & Chen, 2008), early intervention professionals
use a variety of strategies when making home visits, including providing
information about learning strategies, child development, characteristics of
disabilities, and resources; listening to family members and offering emotional
support; working directly with children and demonstrating specific techniques
and interventions; and coaching caregivers as they interact with their
children. A survey of early interventionists in Australia revealed that similar
strategies were used in serving families of young children with visual
impairments and multiple disabilities (Chen, Griffin, & Mackevicius, 2009).
In this article we describe important elements of these home-visiting practices
and review research findings and current recommendations on conducting home
visits with families and their infants who are deaf-blind.
Promoting Learning and Development
A focused interview with mothers of infants with sensory
impairments and additional disabilities revealed they felt that learning
specific strategies to promote their childrens development was the most
helpful part of home visits (Klein & Chen, 2008). Similarly, parents of
young children with visual impairments and additional disabilities identified
getting suggestions that fit the home environment as most helpful
(Chen et al., 2009). Effective teaching of these strategies to parents and
other caregivers involve ensuring that professionals from different disciplines
work together, making use of items already found in the home, embedding
learning activities into everyday routines, and supporting infant-caregiver
Interdisciplinary collaboration. Professionals from
different specialty areas should share their expertise with the family and with
each other to effectively support an infants learning within the context
of family life. They should work together to identify effective strategies and
use them consistently when interacting with the infant and family members. This
is known as interdisciplinary teaming, and it is essential for high quality,
coordinated services (Horn & Jones, 2004; Rapport, McWilliam, & Smith,
2004). For example, the intervention team for an infant with low muscle tone,
moderate hearing loss, and total blindness may include service providers who
are certified in the areas of hearing loss, visual impairment, occupational
therapy, and physical therapy. The provider certified in hearing loss should
help the family learn about the type and severity of their infants
hearing loss, available communication options and amplification devices, and
ways to facilitate his or her listening skills. The service provider certified
in visual impairment should share information about the infants visual
impairment and teach the family how to encourage the use of other senses and
provide tactile input. The physical and/or occupational therapist should
provide information on the infants motor problems and skills, appropriate
positioning and handling techniques, and strategies to encourage movement and
Use of materials found in the home. Current
literature recommends using items and materials during home visits that
families already have at home, instead of the toy bag containing
toys and other items that many early interventionists have traditionally used
when working directly with infants. McWilliam (2007) has clearly articulated
the following problems associated with the toy bag approach:
- 1. A professional toy bag sends the message that the family
does not have useful items at home and that special materials are needed.
- 2. It gives the appearance that early intervention occurs only
when the home visitor works with a child using specific toys.
- 3. It may lead families to incorrectly attribute their
infants progress solely to the time and effort of home visitors.
Routine-based interventions. Embedding
interventions within everyday family routines takes advantage of natural
learning opportunities to help children develop skills within the context of
meaningful activities (Chen et al., 2009; Chen, Klein, & Haney, 2007;
Dunst, Trivette, Humphries, Raab, & Roper, 2001). For example, one of the
desired outcomes on the individualized family service plan (IFSP) for
34-month-old Henry is for him to walk independently. The home visitor asks his
mother, Jen, to describe times when Henry seems motivated to walk. Jen tells
her that Henry loves to eat and will often move toward his high chair.
Together, Jen and the home visitor develop a routine for Jen to use at
mealtimes that will help Henry achieve the goal of walking about 3 feet to his
high chair. They place a dark, high-contrast mat under his high chair to help
him see the chair better. When it is time to eat, Jen puts Henrys bib on
him and says time to eat to cue Henry that it is time to find the
high chair. When he reaches the high chair, she says up, up, up and
touches his shoulders before putting him in the chair. Before feeding Henry,
she touches his lips and does oral-motor stretches around his mouth as
recommended by his occupational therapist. During the meal, she says
Henry, look! Find the spoon!, holds the spoon about 9 inches in
front of his face, and waits for him to look at it before she moves it to his
lips. She also says take a bite and waits to see if Henry opens his
mouth. When the meal is finished, Jen says all done, signs
finish, and waits for Henry to respond by putting his arms up to be
removed from the high chair. By using the routine consistently, Jen is able to
promote Henrys development by integrating strategies related to physical
and occupational therapy, use of vision and hearing, and communication into a
common everyday activity.
Caregiver-infant interactions. Home visitors should promote a
familys confidence and competence in interacting with their child who is
deaf-blind and encourage a parents or other caregivers use of
specific strategies to support these interactions (Chen et al., 2007). The
caregiver-infant relationship is strengthened when the caregiver recognizes,
interprets, and responds to an infants communication efforts (Dunst &
Kassow, 2004; Kassow & Dunst, 2004), but caregivers need assistance to
recognize their infants subtle and unique signals and to respond in a
meaningful way. Thus, a significant focus of home visits should be to
facilitate caregiver-infant interactions and promote the childs
participation within the family routine (Chen & Klein, 2008; Keilty,
When an infant has both visual impairment and hearing loss and
other special needs, initial home visits usually involve sharing information
about relevant medical issues, explaining the causes of the infants
sensory impairments, and helping the family to learn about their infants
particular visual, auditory, and communication needs. The home visitor may also
provide information about agencies and professionals that conduct evaluations
(e.g., audiological, ophthalmological, or physical therapy).
Most families of infants with combined visual impairment and
hearing loss will be unfamiliar with the term deaf-blind and may not view the
label as appropriate for their infant, particularly if he or she has some
functional vision or residual hearing. Home visitors should explain the range
of combined sensory impairments described by the term and how this relates to
educational strategies, specialized services, and accommodations needed for a
particular infant. Families should also become familiar with relevant resources
such as state deaf-blind technical assistance projects, the National Consortium
on Deaf-Blindness (NCDB; http://nationaldb.org), and the National Family
Association for Deaf-Blind (NFADB; http://www.nfadb.org).
Use of functional vision and residual hearing. If
the infant wears glasses or contact lenses or hearing aids, the family may need
assistance to learn about the care and management of these devices, how to
introduce them to the child, and how to help the child make sense of what he or
she sees and hears. Families may also have questions about cochlear implants.
Depending on the infants sensory status, home visitors should help
families create opportunities for their infants to move towards sounds (e.g.,
searching for a family member who is calling the childs name or locating
a toy that makes a sound), to visually locate preferred items and people (e.g.,
looking around the room for mother or searching for a favorite blanket), or to
tactilely search for a favorite toy kept in a consistent place.
Communication options. Development of communication
skills is a primary need for infants who are deaf-blind. Families may need
encouragement to observe, interpret, and respond to their infants
communicative efforts. They will have questions about options in communication
modes (e.g., combined oral/aural, total communication, or American Sign
Language) and wonder if their child will be able to read print or Braille.
Families may ask whether their child will learn to speak and will need
assistance to develop and use concrete communication methods such as touch and
object cues and adapted sign language. Home visitors with expertise in
deaf-blindness should schedule joint visits with other service providers to
share information and strategies and to develop consistent use of communication
methods to encourage the infants communication development.
Home-based early intervention services must be family-centered and
tailored to each familys unique characteristics (e.g., beliefs, culture,
language, composition, social-economic level, attitudes toward disability) and
the infants developmental needs. The home visitor should create ways to
engage everyone who is involved in an infants care. In a large extended
family in which there are several caregivers, for example, the home visitor
should ask who should be involved in home visits rather than make assumptions.
If appropriate, siblings should participate in the visit and be invited to
share their points-of-view about the infants likes, dislikes, and
Information should be offered in a format that the family
understands and prefers. Some individuals like print materials, while others
prefer online resources or DVDs. If the family and home visitor do not share a
common language, an interpreter familiar with terminology related to early
intervention and the childs diagnoses should be used to translate
discussions. However, a common language, while essential, is not all that is
required to help families support their childs development. In a study of
non-English-speaking Mexican-American mothers of infants with developmental
delays, Perez (2000) found that even when home visitors were bilingual, they
tended to work directly with children rather than modeling and coaching
families in ways to promote their childrens communication
Home visitors should recognize that families are likely to
experience a range of emotions associated with the birth or diagnosis of an
infant with a disability. Feelings like shock, anger, and sadness have been
associated with adapting to having a child with a disability (Anderregg,
Vergason, & Smith, 1992; Moses, 1983). Home visitors should be sensitive,
compassionate, active listeners and understand that each member of the family
may experience different feelings at different times. These are natural
feelings that serve a healing purpose (Gallagher, Flalka, Rhodes, &
Arceneaux, 2002). Home visitors should also assist families to identify and
obtain the kinds of informal support (e.g., extended family members, friends,
or spiritual leaders) and formal help (e.g., parent mentors, mental health
professionals, or family support groups) that are likely to be needed.
Transition to Preschool
As a child approaches 3 years of age, families have questions
about preschool options and concerns about moving away from home-based early
intervention services. This transition is likely to be an emotional and anxious
time for families as they leave the security of family-centered home visits and
familiar service providers for unknown, child-centered preschool services. Home
visitors should assist families to learn about the transition from the
individualized family service plan (IFSP) process to the individualized
education program (IEP) process, their rights under the Individuals with
Disabilities Education Improvement Act (IDEA), advocating for their child, and
what they can expect when their child goes to preschool.
General Tips for Home Visiting
Although the nature and content of a home visit will vary
according to each familys priorities and concerns, the age and needs of
their child, and a variety of other factors (e.g., program policies or state
requirements), service providers must be prepared to make the best use of the
familys time. The following are general suggestions to guide home
- Remember that you are in the familys home; be respectful,
compassionate, and nonjudgmental.
- Explain that family involvement during home visits is
- Be flexible, listen to the family, and follow their lead.
- Follow-up on issues raised during previous visits.
- Focus on the infants and familys daily activities
and interests and provide suggestions that fit into their routines.
- If the child wears a hearing aid or amplification device, check
to make sure it is working.
- Discuss ways to promote the childs communication
- Consider recording videos of learning activities if the family
is comfortable with this (viewing videos provides great opportunities for
observation, learning, and discussion).
- Offer to make family-to-family connections if the family is
interested in meeting other families of infants who are deaf-blind.
- Find enjoyment in learning together. Explain that family
involvement during home visits is essential.
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visual representation of the grief cycle for use by teachers with families of
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Just Say No to Drive-bys
I am tired of drive-bys.
Ive had enough. I am the mother of a 6-year-old deafblind daughter. Since
entering the public school system, she has been bombarded with drive-bys. What
are drive-bys? The term drive-by is my way of describing the school
systems solution to her education. A deafblind child is placed in a
classroom full of children with multiple disabilities, where he or she is
usually the only deafblind child in the room. Then the drive-bys begin. A
vision teacher will drive by and spend 30 minutes with her, then a hearing
teacher will drive by and spend 30 minutes with her, and on and on. My
daughters day is fragmented by various therapists and their minute
My question is this, do drive-bys work? Is this the best a
deafblind child can hope for? Wouldnt my daughter be better off in a room
full of her peers with like disabilities? As I delve into these questions,
please remember that these are the opinions of a mother, and a teacher with 15
years of experience.
There are schools for the deaf and schools for the blind. Where
are the schools for the deafblind? This is a question that I have often asked.
The public school system always gives the same answerthere arent
enough deafblind children to start a classroom of their own. Is that to say
these children are insignificant? Even though they are few in number, do they
not deserve the same consideration as other children? Many children who are
deaf are immersed in language and communication all day. And many children who
are visually impaired are put in classrooms with like peers and surrounded by
the tools they need to succeed. But children who are deafblind are placed in
classrooms with children who have multiple disabilities and receive drive-bys.
As a mom and an educator, I believe that students who are deafblind should be
placed with their peers and immersed in language, communication, and vision
instruction for the entire time they are at school.
My daughter, Maddie, has light perception only and some peripheral
vision, but no central vision. She also has a cochlear implant. When she was
ready to begin kindergarten, I toured public school classrooms and was offered
the same option in all of them. They could serve my child in a classroom (where
there were no other deafblind children) and make sure she was seen by their
specialists (drive-bys), but I had finally had it. I did not want a fragmented
education for my child. Fortunately, I am blessed to live in a city that has a
very good private school for children with hearing and language impairments,
and the public school system offered this as one of my choices.
Usually, any student with visual impairment is considered for the
vision impaired class, but since my daughter had multiple disabilities, this
was not an option for her. This led me to think, yes, my daughter is deafblind,
however, because of her cochlear implants, hearing is one of her strengths. It
dawned on me that it made sense for her to attend a school that could help her
to hear with her implant and to communicate better. I loved the school, but I
was worried that a private school would not take a deafblind child. Would they
agree with my belief that deafblind children who have cochlear implants or
hearing aids should attend schools for children who are deaf or hard of
hearing? Luckily, they did. They had reservations because they had never taught
a child with such a severe visual impairment, but they accepted my sweet
daughter and have met all of her needs head on. Not only did they accept her,
but they have agreed to look into beginning a regional deafblind program for
children like my daughter because they see the amazing progress she is
My daughter is being educated with her peers. No, they are not
deafblind, but they are deaf, and there is another deafblind child in her
class. To me that is definitely a step in the right direction. The school has
agreed to look into opening a pilot program for students who are deafblind and
have implants or hearing aids, and they will provide all-day instruction by a
teacher who specializes in children who are deaf or hard of hearing. No more
drive-bys! The children will also have the services of an intervener and be
immersed in language and communication all day. And the school will hire a
vision consultant to train the staff to teach visually impaired children.
How did all of this happen? Well, I dont like to brag, but
it was me, a parent who had had enough. A parent who knew her child like no
other and was certain that a few minutes of instruction and support here and
there would not make enough of a difference. A parent who knew that if she
searched long enough, begged and pleaded, and finally got mad enough, she could
achieve her vision of deafblind education.
But, I cant take all the credit. In fact, my daughters
school deserves most of it. They agreed to everything I suggested. They are
dedicated to building a quality program for students who are deafblind. What
more could a parent and teacher ask for? Finally, a place where deafblind
children will be with their peers and immersed in learning that is focused on
them for the entire school day. I believe every deafblind child deserves to be
educated by a certified deaf educator, and if possible, a deafblind educator.
Can you imagine the progress these children are going to make? Can you imagine
the self-confidence and acceptance they are going to feel? I can.
As a parent, empower yourself. You know your child, and you know
what they deserve. Seek it out. Make it happen. Say it right now. Out loud.
No more drive-bys!
From Ignorance to Understanding: Adventures in
Robin Van Dusen
Six months ago I was a typical
interpreting student doing what I needed to do to become the best interpreter I
could be, when an opportunity arose to become a student worker for DB-LINK at
the National Consortium on Deaf-Blindness. DB-LINK is a center for information
on deaf-blindness, and I thought it would be a good place to work part-time
while I was going to school at Western Oregon University (WOU). I liked the
fact that the job related to my major, but I had already made up my mind that I
would never go into deaf-blind interpreting. I am sometimes uncomfortable
having people in my personal space, and I thought that the close proximity that
is required for deaf-blind interpreting would be difficult for me. My feelings
about that would soon change.
Not long after I began working at DB-LINK, I learned of an
opportunity for students fluent in American Sign Language to volunteer at the
30th Annual Deaf-Blind Retreat, a camp for adults who are deaf-blind held every
summer in Seabeck, Washington. The camp features many fun activities such as
bicycling, paddleboating, canoeing, rowing, and parasailing. There are also
arts and crafts activities, workshops on topics of interest to deaf-blind
individuals, and day trips to local attractions such as the Seattle Lighthouse,
the Seattle waterfront, and a local mall. Deaf-blind individuals are matched
with support service providers to ensure that they have the support they need
to participate in all of the activities that interest them. When I first heard
about the retreat, I wasnt sure if I wanted to volunteer, but after much
contemplation I decided that I would at least give it a try before I completely
dismissed the possibility of deaf-blind interpreting. I put my whole heart into
my application and the essay questions that went along with it.
While I was waiting to hear if I had been accepted as a volunteer,
I found out there would be a workshop on deaf-blindness at the Oregon School
for the Deaf. A friend and I decided to go. Ten minutes after the workshop
began, a deaf-blind woman arrived. The workshop paused while the interpreters,
the deaf-blind participant, and the deaf-blind presenter worked together to
create an environment that would provide equal access to information for
everyone. Chairs were moved, backgrounds changed, window blinds closed, and the
signing space was tested. After about fifteen minutes, everyone was settled,
and the workshop continued. I watched in complete awe as the interpreters
adapted their skills to their consumers needs, and I came home with a
completely different perspective on deaf-blind interpreting. I had noticed that
the deaf-blind individual did not use tactile sign language, but instead sat a
couple of feet from the interpreters for close vision signing. This was a new
concept to me. I had thought that deaf-blindness meant profound deafness and
total blindness. I hadnt realized that people who are deaf-blind have a
range of vision and hearing losses and use a variety of communication methods.
That day was a huge turning point for me, and I came home from that workshop
intrigued by deaf-blindness. In fact, I was convinced that deaf-blind
interpreting is the most challenging and rewarding setting in which to
interpret. Two weeks after attending the workshop, I was accepted to volunteer
In the spring of 2008, a group of 13 WOU students who planned to
volunteer at Seabeck, and two faculty advisors, met weekly to learn from each
other how to work with deaf-blind individuals. Together we practiced tactile
sign language and discussed assigned readings from the book Guidelines:
Practical Tips for Working and Socializing with Deaf-Blind People (Smith,
2002). We also practiced sighted-guide skills around campus, and we gained
experience by volunteering at a retirement community for deaf and deaf-blind
individuals. At our last meeting, the group held a deaf-blind simulation
activity at a local pizza parlor. Half of the group wore ear plugs and goggles
to simulate loss of both hearing and vision, while the other half served as
SSPs. Those in the SSP role guided the group members who were simulating
deaf-blindness into the pizza parlor and provided visual information about the
surroundings for the first half of the meal. Halfway through the meal, we
At the end of spring quarter we went our separate ways,
reconvening via conference calls twice over the summer to make sure we were all
on track getting ready for the retreat at Seabeck. During the summer, I also
had the experience of taking a deaf-blind man grocery shopping. This experience
affected me greatly. I had read that deaf-blind people often function at a
slower pace than hearing and sighted people, but I didnt exactly know
what that meant until I spent the afternoon with this man. I came to realize
how much longer it can take for deaf-blind people to do some of the tasks that
I take for granted everyday. I tend to be on the go all the time and to try to
squeeze more and more into my day. But when I went shopping with this man, the
experience was not about me. It was about him and making sure that he got
everything he needed, whether it was a can of olives or genuine friendship and
conversation. While I was with him, time wasnt important.
Before I left for the retreat, I felt I had done everything I
could to prepare. I continued to read about deaf-blindness, to practice tactile
sign language and guiding, and to practice strategies for interacting
respectfully with deaf-blind individuals. Despite my preparation, I was nervous
about whether my skills were good enough to enable the deaf-blind campers to
enjoy their vacation. However, as soon as I met the first camper I was assigned
to, my worries were alleviated.
I had a great experience at the Deaf-Blind Retreat. I learned and
experienced things that could not have been taught to me in any other way.
Before I left for the retreat, I had become book-smart, but once there, I
obtained hands-on experience and was able to apply many of the concepts I
learned from my reading. When I first started working with people who did have
some vision, I struggled with knowing exactly how much visual information to
share. There were so many things happening around us, and I felt it was my
responsibility to share everything I saw and heard. I soon found out that not
every deaf-blind person wants to know every single little thing that is
happening. I learned to ask questions and find out what each person wanted to
know. By asking about their needs and interests, I was able to become confident
in my ability to offer the right kinds of support.
One of the women that I worked with used a combination of ASL and
the Rochester Method, which involves the use of fingerspelling. I had never
interacted with anyone who used this particular combination of communication
methods, and it took me a while to realize what I was seeing. I was concerned
that some of my signs might not be clear and that the reason she fingerspelled
some words to me was because she could not always understand me. Despite our
initial struggles to communicate, by the end of the week I was able to
interpret for other SSPs who wished to chat with her. It made me feel good that
I was able to get past the communication barriers that existed when we first
While I was at the Deaf-Blind Retreat I met many people who live
isolated lives, and for them the retreat is very important. It provides an
opportunity to interact and socialize with people who understand and who have
experienced the same things they have. But it is an opportunity that only comes
around once a year, and many deaf-blind people are turned away each year
because there are not enough volunteers.
The most difficult, and yet most rewarding, part of the camp was
the last day. Saying goodbye to the wonderful people I worked with all week was
truly bittersweet. When I said goodbye to one of the women whom I had grown to
love over the course of the week, I put my hand over hers to let her know I was
there, and she signed my name before I could even identify myself. It was so
touching that she knew exactly who I was without my telling her. We gave each
other a huge hug, and neither of us wanted to let go. Unfortunately, letting go
also symbolized what might be another year of isolation for this amazing woman.
I will be volunteering at Seabeck for years and years to come if only to make
sure that more people are able to attend and experience the sheer joy of
connecting with people similar to themselves.
Since returning from Seabeck, I often catch myself touching people
on the shoulder more often or touching the top of someones hand to let
them know I want to tell them something. Clearly, I no longer have a problem
with people in my personal space. The experiences I have had in the past six
months have changed me as a person and pointed my professional life in a new
direction. I now know that I will always be involved in deaf-blind
Smith, T. B. (2002). Guidelines: Practical tips for working and
socializing with deaf-blind people. Burtonsville, MD: Sign Media,
Outreach to Improve Early Identification in
National Consortium on
Many children who are deaf-blind
have additional disabilities and complex medical needs and often begin their
lives receiving services from physicians and other health-care providers.
Recognizing the importance of medical professionals in the lives of children
with disabilities, the Kentucky Deaf-Blind Project developed an outreach
program targeting these professionals in an effort to increase their referrals
of children who are deaf-blind to the project.
The outreach program had its genesis in 2002 as part of a broader
Kentucky Department of Education (KDE) initiative to improve educational
services for children with sensory disabilities. The Kentucky Board of
Education invited the American Institute on Research to evaluate the
states current services and provide recommendations. As a result, the
Kentucky Deaf-Blind Project was asked to take the lead on initiatives to
implement recommendations specific to early intervention and early childhood
services for children with complex needsdeaf-blind, deaf-blind with other
disabilities, deaf or hard of hearing with other disabilities, and blind or
visually impaired with other disabilities. Two workgroups were formed, and the
National Technical Assistance Consortium for Children and Young Adults Who Are
Deaf-Blind (NTAC) played an integral role in facilitating group discussions to
identify needs and generate solutions related to the recommendations.
The need to improve early identification was one of the first
problems identified. Diane Haynes, the Kentucky Deaf-Blind Project coordinator
as well as the states coordinator, at that time, for Part C (Program for
Infants and Toddlers with Disabilities) of the Individuals with Disabilities
Education Act, says, I just knew that while there were ongoing efforts to
address this issue, there were significant pieces of information and resources
at our disposal that were not being used efficiently or were not giving us
maximum results. One untapped resource was the medical community. Haynes
wondered if improved outreach to health-care providers would increase the
number of referrals of children who are deaf-blind to Part C early intervention
services and the state deaf-blind project.
Initially Haynes spent a great deal of time reviewing
Kentuckys Part C Established Risk list. The list includes approximately
300 conditions that, once diagnosed, identify a child as immediately eligible
for early intervention services. In studying the list, she recognized many
conditions that placed a child at risk for vision or hearing loss, and after
reviewing the list with physicians from the Department of Genetics at the
University of Kentucky (UK), she learned that far more conditions were
associated with a risk for vision and hearing loss than she had originally
assumed. After reviewing files of children currently receiving early
intervention services, she found that many children diagnosed with these
conditions were not receiving services related to their hearing or vision and
those with combined hearing and vision loss were not always referred to the
Kentucky Deaf-Blind Project. She also became concerned, especially after
speaking to Dr. Neelkamal Soaresa developmental pediatrician at UK, that
pediatricians might not be aware that sensory losses were associated with these
conditions unless they specialized in genetics or other specialty areas.
Haynes and Soares both felt that a partnership between educators
and health-care providers was needed, not only for early identification
purposes, but also to enhance the overall delivery of educational services for
children with sensory losses. Together they began to discuss the identification
activities targeted by one of the KDE workgroups, as well as additional
activities on which educators and health-care professionals could
Haynes also met with Dr. Harold Kleinert, who, as director of the
UK Interdisciplinary Human Development Institute (IHDI), oversees programs
offering educational and medical services for individuals with disabilities. He
agreed that increasing health-care professionals awareness of the
distinct needs of children with sensory disabilities could positively impact
both their health and educational outcomes. To assist with her outreach and
networking efforts, Kleinert introduced Haynes to a member of his staff who
served as the liaison between his program and the UK College of Medicine.
Dr. Sarah Cawthon, a physician and parent of a young child with
deaf-blindness, suggested that Haynes give a presentation on deaf-blindness
during grand rounds at the UK College of Medicine. Grand rounds are a form of
continuing education for doctors, residents, and medical students. It
seemed to me, says Cawthon, that grand rounds presented an
opportunity to share information with the pediatricians of tomorrow. She
had specific recommendations regarding the presentation. It would be important
to place the information in the context of the medical systemdetails
about children who are deaf-blind, why they need services, and why early
identification of hearing and vision loss is important. She also felt that the
presentation would be strengthened by the participation of someone with a
medical background. Haynes realized that Cawthon herself was the perfect
partner in this endeavor because she understood on both a professional and
personal level the significance of appropriate services for children who are
deaf-blind. In the spring of 2005, they made their first presentation at grand
rounds at the medical school at UK.
In addition to the grand rounds presentation, the Kentucky
Deaf-Blind Project incorporated a number of other strategies into their medical
outreach endeavors. Many involve direct contact and collaboration between
project staff and physicians, which have been found to be the most effective
means of increasing physician referrals, particularly when they include
ongoing and frequent face-to-face contact that is paired with
written program materials to reinforce verbal information provided during
personal visits (Dunst & Clow, 2007). Specific outreach strategies
- Production of a brochure designed for annual mailing to
health-care providers and for use as a hand-out at presentations. It focuses on
the risk factors and implications of hearing and vision loss and includes
Kentucky Deaf-Blind Project information and other resources. A template is
available from the NCDB Web site (www.nationaldb.org/ISKyBrochure.php).
- Development of a presentation with information targeted to
health-care providers. The PowerPoint slides used in the presentation are
available from the NCDB Web site (www.nationaldb.org/ISKyMedOutreach.php).
- Presentations to medical school personnel and students during
grand rounds as described above.
- Presentations as part of a monthly brown bag
lecture series sponsored by the Interdisciplinary Human Development Institute
(IHDI) at UK, to which are invited students from the College of Social Work,
the College of Medicine, and the IHDI. Haynes has made two presentations on
meeting the needs of families who have children with disabilities. One
presentation was entitled Delivering Holistic Services in a Fragmented
Service System, and the other Addressing the Unique Needs of
Families Who Have Children with Disabilities.
- The development of opportunities for medical school students to
observe Kentucky Deaf-Blind Project staff members as they work with
Since initiating these activities in 2005, the number of children
referred to the Kentucky Deaf-Blind Project by health-care providers and Part C
programs has increased by 40%. In the spirit of true partnership, the state
deaf-blind project is now recognized by the UK College of Medicine as a
valuable resource for its shadowing program for 3rd and 4th year medical
students. Within a year of the first grand rounds presentation, nine students
had chosen to shadow state deaf-blind project personnel on their visits to
children. These students visited homes and schools, problem-solved with
educational teams and families, and saw, first hand, what life is like for
children with complex disabilities outside of a medical environment. Many
medical students have reported that the shadowing experience has been one of
the most beneficial and enlightening of their program.
Recognizing that both education and medicine share the goal of
enhancing the lives of all children is the key to improving the quality of
early intervention and educational services for children with disabilities.
If we are going to work collaboratively, says Diane Haynes,
we must build a bridge between the two disciplines. Part of
building that bridge involves understanding problems, priorities, and concerns
from the perspective of both educators and physicians and other health-care
providers and identifying and sharing methods and solutions. It is
important, Haynes continues, to come to the table with a clear
understanding that both parties have something to offer and that each share a
concern that once children are identified as deaf-blind, it is absolutely
critical that they receive the services they require and deserve.
Dunst, C. J., & Clow, P. W. (2007). Public awareness and child
find activities in Part C early intervention programs, Cornerstones,
3(1), 17. Retrieved March 3, 2009 from
www.tracecenter.info/cornerstones/ cornerstones_ vol3_no1.pdf.
Whats New at AADB?
American Association of the
Maybe you are a long-term member of the American Association of
the Deaf-Blind (AADB) and want to know the latest happenings. Or perhaps
youve heard about AADB but are not sure who we are or what we do. Then
this article is for you! AADB is a consumer advocacy organization of, by, and
for people who have both hearing and vision loss. We have been growing and
changing quite a bit within the last couple of years. Here are some
Lower Membership Dues
Any individual (including those outside the U.S.) can now join
AADB for $10 a year, down from $25 in the past. We also have new dues for
organizations: $50 a year for nonprofit organizations and $75 a year for
businesses and for-profit organizations. People who wish to join AADB can go to
our web site at www.aadb.org to print a membership form to send us, or contact
our office. We hope to have online membership registration available later this
Outreach to Teens and Young Adults
Are you a teen or young adult who is deaf-blind, or do you know
someone who is? What can AADB do for you? We can offer you the chance to meet
other teens and young adults who have both vision and hearing loss. One
exciting way is through AADBs s profile on Facebook. As of this writing,
369 members have joined us. To find AADB, just go to www.facebook.com and type
AADB in the search engine after you log in. There, you can find
other people, including teens and young adults, who are also deaf-blind, as
well as friends, supporters, and professionals. We also have a new brochure
describing our services to teens and young adults. Just contact the AADB office
to obtain a copy. In addition, we have a teen program at our national
conferences, where teens can meet and connect with each other.
Support Service Provider and Technology
AADB is focusing on two top needs that members identified at our
two most recent conferences: a need for more support service providers (SSPs),
and a need for affordable, accessible technology. With the help of support
service programs and technology providers we are exploring how AADB can help
make these services more accessible to Americans who are deaf-blind. When we
gather our findings, we will also include input that we received from our
deaf-blind members during the SSP and technology forums held at the 2006 AADB
AADB offers two major publicationsour e-newsletter,
AADB Today, and our magazine, The Deaf-Blind American. These
publications have changed recently. AADB Today was formerly
AADB E-News. It has expanded to include more news, and it
spotlights people who are deaf-blind who are making a difference in their
communities. AADB Today is free to anyone. People can go to our web
site at www.aadb.org to sign up or contact the AADB office to be put on our
distribution list. We also provide print and Braille copies to our members upon
The Deaf-Blind American, available to AADB members, is
published twice a year. It focuses on specific hot topics in the deaf-blind
community, such as interpreting, support service providers, technology, and
employment. This year, we will have a summer issue focusing on teens and young
We are now, for the first time, accepting ads in each publication.
For more information on how to place ads, please contact the AADB Office at
email@example.com. If anyone wants to contribute to or be interviewed for our
publications, please contact Elizabeth Spiers at firstname.lastname@example.org.
Outreach and Advocacy AADB strives to educate the public about
the needs of people with both vision and hearing loss by presenting,
exhibiting, and networking at national conferences, including those for teens
and young adults who are deaf-blind. AADB has been working with other
disability organizations to make sure that new legislation and initiatives
include the needs of deaf-blind people. For example, AADB participated in an
Obama-Biden transition team meeting in December 2008, along with other
organizations such as the National Association of the Deaf and the Hearing Loss
Association of America. Each organization was given two minutes to comment on
top issues. AADB advocated for national SSP services and accessible technology
and submitted written recommendations on how deaf, hard-of-hearing, deaf-blind,
and late-deafened people can be included in all aspects of civil rights,
housing, employment, health care, telecommunications, and
These are just a few highlights of what is happening and what AADB
can offer you. If you want more information, please visit our web site at
www.aadb.org, e-mail the AADB office at
email@example.com, or call us at
301-495-4402 TTY or 301-495-4403 Voice. You can also contact us by VP at
301-563-9107 or 866-761-5768, or write to AADB, 8630 Fenton Street, Suite 121,
Silver Spring, MD 20910. We would love to hear from you!
For Your Library
You Make the Difference: An Educator-Oriented Process for
Supporting High Quality Interactions with Students Who Are Deafblind
Craig Axelrod, Kim Conlin, & Tish Smith. Texas School for
the Blind and Visually Impaired, 2008.
The interaction training process presented in this DVD is designed
to help educators learn how to improve the quality of their interactions with
students who are deafblind, by changing their own interactive behaviors and by
adapting the circumstances in which interactions occur. Cost: $50.00. Available
from the Texas School for the Blind and Visually Impaired. Phone: 512-206-9427.
Assessing Communication and Learning in Young Children Who Are
Deafblind or Who Have Multiple Disabilities
Charity Rowland (Ed.).
Portland, OR: Oregon Health & Science University, 2009, 59 pages.
This guide is designed to help professionals conduct meaningful
assessments of young children who are deafblind and have additional
impairments. Parents may also find it helpful. The emphasis is on assessing
communication as the foundation for learning. Available on the web:
Print copies will be available from DB-LINK as long as supplies last. Phone:
800-438-9376. TTY: 800-854-7013. E-mail: firstname.lastname@example.org.
Data Summary: Validation of Evidence-based Assessment
Strategies to Promote Achievement in Children who are
Portland, OR: Oregon Health & Science University, 2009,
This document describes the major activities conducted under the
auspices of Grant #H324D030001, Validation of Evidence-based Assessment
Strategies to Promote Achievement in Children who are Deafblind. Data
collected through the grant's activities are summarized. Available on the web:
Teaching Children with Visual Impairments (an online video on
teaching physical activity)
Camp Abilities, The College at Brockport,
State University of New York, 2008.
This 35-minute-long free online video on physical activity
instruction for students who are blind, visually impaired, or deaf-blind,
includes information about instructional techniques, safety considerations,
running techniques, and equipment and game modifications. It is available
online in 2 parts from:
The information on deaf-blindness is included in the second part.
Suddenly Slow: Poems
John Lee Clark. Handtype Press,
Suddenly Slow: Poems, is a limited edition chapbook that showcases
sixteen poems by the award-winning deaf-blind poet, John Lee Clark. Clark was
born deaf and became progressively blind beginning in early adolescence. Cost:
$8.00. Available at www.handtype.com or www.amazon.com.
Practice Perspectives: Transition
Consortium on Deaf-Blindness (NCDB), January 2009.
This publication describes the importance of in-depth transition
planning to meet the unique needs of children and youth who are deaf-blind and
the requirements of the Individuals with Disabilities Education Act as measured
by Indicator 13. Standard and large print versions are available on the NCDB
Web site (nationaldb.org/NCDBProducts.php?prodID=62).
Print and Braille copies are available by contacting NCDB (800-438-9376 V;
800-854-7013 TTY; email@example.com).
Conferences and Events
Pacific Rim Conference on Disabilities
May 45, 2009
The PacRim Conference has several topic areas including native and
indigenous education and health issues, disability rights, youth leadership and
advocacy, autism, and universal design for learning. For more information,
visit www.pacrim.hawaii.edu or e-mail firstname.lastname@example.org or
Idaho Project for Children and Youth with
Deaf-Blindness Summer Institute
June 1819, 2009
The theme of this institute is The Emotional Heart of the
Child: Why Self-Regulation Matters So Much." The presenter is David
Brown, Educational Specialist, California Deaf-Blind Services. Cost: $30.00.
TREDS Summer Institute
July 810, 2009
Emerging Literacy for Children with Multiple Disabilities
Including Deafness: Techniques, Strategies, Interventions and
Implementation, is the topic of this summer institute, featuring guest
speaker Robbie Blaha from the Texas School for the Blind and Visually Impaired.
The program is open to all. For more information contact Jennifer Vick (email@example.com).
Registry of Interpreters for the Deaf National
August 16, 2009
This conference, hosted by the Registry of Interpreters for the
Deaf (RID), will include several presentations on deaf-blindness. RIDs
Deaf-Blind Member Section (DBMS) will also meet to review its achievements,
make plans for the future, and elect new officers. Web:
Deafblind International 7th European
September 2227, 2009
The title of the conference, Tides, Waves and Currents in
Research and Action, is intended to stimulate thinking and provide an
opportunity to reflect upon past, present, and future actions in the field of
Southeast Regional Institute on Deafness
September 27October 1, 2009
SERID focuses on educational and professional development for
individuals who work with consumers who are deaf, hard of hearing, deaf-blind,
and late-deafened. For more information contact Cassondra Holly at 601-853-5344
or Cassondra.Holly@mdrs.state.ms.us. Web:
WFDB Helen Keller World Conference & General
October 2227, 2009
This will be the 9th Helen Keller World Conference and the 3rd
World Federation of the DeafBlind (WFDB) General Assembly. The theme is the UN
Convention on the Rights of Persons with Disabilities and changing the lives of
persons with deafblindness. Web: www.wfdb.org.
See the NCDB web site for
information about other upcoming events (nationaldb.org) click on Conferences
News from State Deaf-Blind Projects
Kansas. As of October 2008, the Kansas Deaf-Blind
Project has moved from the Kansas State Department of Education to the
University of Kansas.The new director and project coordinator are Jean Ann
Summers and Megan Cote. For more information about the project visit the web
Tennessee. TREDS, the Tennessee Deafblind Project,
now has a Youth Speakers Bureau (YSB). The YSB is currently being used in
a local school district to support the transition of an elementary student to
his new middle school. The YSB is made up of a group of 9 of the students
peers who created a DVD to share information about their friend in the form of
personal stories and interviews with other students, school staff and
administrators, and community members. TREDS plans to use this model to support
transitions for other students with deaf-blindness in Tennessee.
NCDB is looking for Graduate Students!!
As part of a national effort to promote personnel training on the
implementation of IDEA, NCDB is looking to identify graduate students who are
specializing in deaf-blindness and are seeking certificates, masters
degrees, or doctoral degrees. NCDB supports evidence-based practices that
address the shortage of leadership and research in the field of deaf-blindness.
Contact Christina Reagle, Ed.D., NCDB Personnel Preparation Consortium
Coordinator, at firstname.lastname@example.org or
RID Deaf-Blind Member Section (DBMS) News
The Registry of Interpreters for the Deaf Deaf-Blind Member
Section (RID DBMS) has a new vice-chairperson, Mala Poe. In other news, the
DBMS will soon have a section on the RID web site and plans to host workshops
on deaf-blind interpreting during the spring of 2009 in various regions
throughout the country. For more information contact
National Task Force on Deaf-Blind
The National Task Force on Deaf-Blind Interpreting (NTFDBI) is
comprised of three national entitiesthe Registry of Interpreters for the
Deaf (RID), the American Association of the Deaf-Blind, and the National
Consortium of Interpreter Education Centers. Task force members include
interpreter practitioners, interpreter educators, and deaf-blind individuals.
NTFDBI plans to host its second face-to-face meeting in conjunction with the
RID National Conference in August. For more information contact
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