The Teaching Research
In This Issue
- Customized Employment: A Strategy for
Developing Inclusive Employment Opportunities
- Seattles Deaf-Blind Service Center: A
- Reaching out to the World
- Personal Perspectives: Angelyne
- Worldwide Connections
- Report from the 14th Deafblind International
- Research Update
- For Your Library
- Conferences and Events
Customized Employment: A Strategy for Developing
Inclusive Employment Opportunities
Idaho Deaf-Blind Project
Emily is going on a cruise to Mexico with
money she earned herself. When she was 19 years old, she used the process of
customized employment to find a job. She had transitioned out of high school at
age 18 and initially spent her days assembling flashlights in a production line
at a local developmental disability agency. Her family wanted to help Emily
find employment that allowed her to use more of her skills and was located in
an inclusive setting in the community.
The concept of customized employment was introduced in 2001 by the
US Department of Labors Office of Disability Employment Policy. The
strategy was designed to assist people with disabilities and other individuals
who have potential barriers to employment, such as senior citizens, veterans,
and people with complex health-related conditions. Customized employment is
. . . a means of individualizing the employment relationship
between employees and employers in ways that meet the needs of both. It is
based on an individualized determination of the strengths, needs, and interests
of the person with the disability, and is also designed to meet the specific
needs of the employer. It may include employment developed through job carving,
self-employment, or entrepreneurial initiatives, or other job development or
restructuring strategies that result in job responsibilities being customized
and individually negotiated to fit the needs of the individuals with a
disability. Customized employment assumes the provision of reasonable
accommodations and supports necessary for the individual to perform the
functions of a job that is individually negotiated and developed (U.S.
Department of Labor, 2002, p. 43156).
For individuals with significant disabilities, the creation of a
customized job increases the opportunities for their participation and
maximizes their competent performance (Callahan, 2002). The principles
and characteristics of customized employment are related to the concept of
supported employment but are different in significant ways. A customized
approach is initially guided by a job seekers profile. Getting to know
the job seeker at the beginning of the process is the key to developing a job
that meets the needs of both the individual and the employer. In contrast, the
typical supported employment approach is primarily driven by the jobs that are
available in a community. Additionally, customized employment does not include
group placements or subminimum wage positions as is often the case with
supported employment (Inge, 2006). A customized employment approach leads to
the development of a job based on the needs of the focus person rather than the
labor market at large.
The Customized Employment Process
The process of customizing a job starts with the development of an
employment plan for a job seeker based on his or her strengths, interests, and
complexities. Information gathered during this phase is more detailed than that
obtained from a typical vocational assessment. One method of capturing the
necessary detail is a process referred to as discovery (Callahan & Condon,
2007). Discovery seeks to answer the question Who is this person?
by observing and talking to the individual in a variety of familiar and
unfamiliar settings and by interviewing family members, friends, and service
providers to get their perspectives on the strengths, contributions,
performance, and needs of the job seeker.
The goal of the process is an understanding of the job seeker as
an individual and the conditions that are necessary for the person to be
successful in an employment setting. This includes not only the identification
of an individuals preferences, interests, and contributions, but an
understanding of the complex issues that might emerge to compromise
employment efforts (Callahan and Condon, 2007, p. 23). Factors such as an
individuals motivation to work and ways of learning a task are critical
pieces of information in the discovery process. Conducting this kind of
intensive investigation takes time but is well worth the effort to achieve
effective employment outcomes.
Once the information is collected, it is written into a vocational
profile that is used to develop an employment plan. The plan also includes a
prioritized list of targeted employers, generated by the job seekers team
and based on the information collected in discovery.
The information in the profile can subsequently be used to develop
a portfolio that presents the job seeker to potential employers. This strategic
marketing tool uses photographs and text to describe the skills and
contributions of the individual. It can be presented to an employer by the job
seeker, by a job developer, or by another employment professional who has been
involved with the individual during the discovery process. For individuals who
are interested in self-employment, the profile can be used to develop a
business plan that outlines the skills the individual will bring to a business
and describes his or her required resources and supports.
The discovery process can also be used in school-based settings to
guide transition planning, career exploration, and vocational preparation for
middle- and high-school students. Using the tools of discovery, team members
can prepare students with significant disabilities for transition by exploring
their preferences and interests and the conditions that allow the students to
perform at their best. The process can enable students to make more informed
choices and to advocate for themselves at IEP and transition meetings.
Beginning the discovery process while students are still in school gives teams
the time to really get to know them. The information they collect helps
students build needed skills for the future. School is an opportunity for
students to acquire work experiences in school-based jobs, participate in
volunteer work in the community, or explore self-employment options.
Customizing a Job for Emily
Idaho Deaf-Blind Project staff, together with a consultant from
the University of Montanas Rural Institute on Disabilities and NCDB,
facilitated an initial meeting to discuss customized employment with
Emilys family and service providers. They explained the discovery process
and how the information generated for the vocational profile would be used to
find a job for Emily. The participants in the meeting included Emily, members
of her family, staff from the developmental disabilities agency (DDA), her
service coordinator, and a representative from the local vocational
rehabilitation (VR) office. At the conclusion of the meeting, several members
of the team volunteered to conduct interviews and observe Emily in a variety of
The team members began collecting information by spending time
with Emily in her home and in the community. They watched her make her favorite
Mexican chicken soup and then ate dinner with the family later in the day. They
observed her on the computer as she looked up the balance in her checking
account. They went with her to an arts and crafts supply store and observed how
she maneuvered through the aisles and the types of support she needed to find
items and pay for them. They interviewed her parents, sisters, and other family
members about chores she did on a daily basis and how she acted in unfamiliar
settings. They asked if she ever initiated tasks on her own and discovered that
she would automatically hang up peoples coats when they came for a visit
and sit down to play with their children without being prompted. They visited
Emily at a DDA workshop and talked to the staff. They observed her at a bowling
alley where she bowled on a weekly basis. They also talked to Emily and former
teachers to find out how she learned new skills and how she had performed on
vocational tasks in high school.
After conducting in-depth interviews and observations, the team
compiled information and wrote it into a vocational profile. They included not
only information learned from observations and interviews, but also details
such as her family structure and social networks, transportation options in the
community, her performance on formal and informal work done at home and at
school, her favorite activities, her involvement in structured community
activities, her preferred holidays and family traditions, her recreational
likes and dislikes, her sensory challenges, and her academic, communication,
and social skills.
Through this process the team began to understand who Emily was
and the kinds of jobs that she might like and do well in. They learned that she
performed best when there was a structured, predictable routine. She liked to
use checklists and written instructions. She learned from modeling, verbal
instructions, repetition, and repeated practice. She was described by her
teachers as thorough and as someone who likes to complete a
task. She liked to be busy and to be around people, although the teachers
did not think that it was necessary for them to continually engage her. She
liked to do things with her hands (e.g., multipiece puzzles, pen drawings,
cooking, crafts) and loved to buy cookbooks.
The team also learned more about the supports Emily might need in
a work setting. They found out that she was uncomfortable in loud, echoing
environments and would leave a setting if the sound was bothering her. They
discovered that Emily had hearing aids but had chosen not to wear them, that
she did not see out of her left eye, and that she had issues with depth
perception. It was important to ensure that a worksite did not require her to
go down steps on a regular basis, climb a ladder, or navigate over uneven
terrain without assistance. When using a computer screen, she needed
contrasting print with limited glare. She could read 12-point type, but it was
easier and much less taxing on her vision if the print was larger. The team
also discovered that Emily learned best when she initially had a one-to-one
support person who provided systematic instruction and repeated practice on a
task. Once she was familiar with an environment and knew the particulars of a
task, she could do it on her own with intermittent support.
All of the information in the vocational profile was used to
develop Emilys employment plan. It described her ideal working conditions
and the terms for negotiation with an employer. The conditions included: (a) a
steady pace of work that would keep her busy; (b) routine steps for a job
(several tasks within a job would be all right); (c) clear rules and
expectations; (d) a work schedule of 3 to 4 days a week of up to 8 hours a day;
(e) avoidance of an extremely loud environment. The plan also listed
Emilys specific job skills and a list of employers whose businesses might
have a need for the tasks she could perform and match her conditions for
At the conclusion of the meeting, the team decided that it would
be beneficial for Emily to develop a portfolio for marketing herself to
employers. She then designed one as a pictorial and written representation of
her contributions and capabilities. It included a variety of photographs of her
playing the piano, making soup, using the computer, filing papers, working at a
grocery store, and using public transportation. It also listed her areas of
interest, the characteristics of her strong work ethic, and job tasks she could
perform (e.g., delivering items, stocking, taking inventory, making snacks,
sorting mail). The last slide of the portfolio asked the question Could
your business benefit from having any of these tasks performed?
Emily obtained a job at a local fabric store. The manager was
looking for a person who could work several hours a week and perform various
tasks. She wanted someone who was reliable, had a strong work ethic, and a
positive attitude. Emily, with the support of a job developer from the DDA,
used her portfolio to present information about her skills and interests to the
manager. She was subsequently hired to work four days a week for two hours a
day, folding cloth on bolsters and making sure that the bolsters were in the
proper order. Even though Emily had a number of marketable skills, she still
required support to help her learn the steps of the job and complete the tasks
in a timely manner. The funding for a job coach for Emily came from VR dollars
and was coordinated with staff from that agency.
Emily is now 24 years old and is still working in her community.
She no longer works at the fabric store, but she has used her portfolio to
secure jobs at other places, including a daycare center and a television
station. She now works at Kentucky Fried Chicken doing lobby work.
She loves it and was, in fact, the VR Client for the
Year for her region of the state. She works 12:00 to 2:00 p.m., Monday
through Friday, and receives intermittent support from a job coach. The job
coach was funded by a scholarship until recently but is now being paid with
Many customized employment services are supported by a blend of
multiple funding sources. The Social Security Administrations work
incentive programs, such as PASS (Plan for Achieving Self-Support) have been
one way to fund transition planning and career development activities for high
school students. PASS plans have funded a variety of supports including
assessments, job coaching, job development, transportation, and equipment for
people who are eligible. Other sources of funding include Medicaid waivers,
developmental disability council funds, state VR initiatives, and Medicaid
Customized employment is a strategy that strives to highlight an
individuals qualifications and interests in an effort to negotiate a job
that satisfies both the employer and the job seeker. Although service providers
and families who use the customized approach will likely encounter many of the
same challenges that occur with the use of more traditional job development
methods, those who decide to use it will discover a more innovative,
person-centered assessment and planning process. They will discover that
customized employment helps them to think outside the box as they
work to develop a job for a specific person in the community or generally to
expand inclusive employment opportunities.
Callahan, M., & Condon, E. (2007). Discovery: The foundation
of job development. In C. Griffin, D. Hammis, & T. Geary (Eds.), The job
developers handbook: Practical tactics for customized employment (pp.
2333). Baltimore: Paul H. Brookes Publishing Co.
Callahan, M. (2002). Employment: From competitive to customized.
TASH Connections Newsletter, 28(9), 1619.
Condon, E., & Brown, K. (2007, March). Introduction to
partnerships for transition. The Rural Institute Transition Project E-News,
4(1). Retrieved March 18, 2008 from
Inge, K. J. (2006). Customized employment: A growing strategy for
facilitating inclusive employment. Journal of Vocational Rehabilitation,
U.S. Department of Labor. (2002). Office of disability employment
policy; customized employment grants. Federal Register, 67(123),
Seattles Deaf-Blind Service Center:
The Deaf-Blind Service Center (DBSC) is a
community-based agency in Seattle committed to assisting Deaf-Blind people to
reach and maintain their highest possible quality of life and degree of
personal autonomy. The focus and vision of DBSC have evolved over its 20 years
of existence, and today we are closer than ever to the community we serve.
The DBSC Board has always required a minimum deaf-blind
representation of 50%, but I am the first Deaf-Blind executive director. This
is a significant step forward. It provides a concrete model of deaf-blind
leadership; it is not just an ideal or goal. It has become reality, and it
means that the director experiences the same barriers and issues facing all
deaf-blind people. The deaf-blind members of the staff, the clients who come to
the agency, and members of the DB community can look to the director as a peer.
In this article I describe our services and the new vision of our
agencythe DB Friendly Zone at DBSC and in the community. The
agencys services and activities are a response to current barriers and
reflect our vision of the future.
Most people use vision and hearing to know about the world, to
gather information and communicate, and to travel from place to place. DB
people do not have the same sensory means to achieve these goals, and they
encounter barriers to a high quality of life, including:
- lack of access to communication and efficient
- stereotyping (stigmatizing) of deaf-blind people, resulting in
inappropriately low expectations and rigid thinking, and
- the effects of years of neglect and isolation.
The barriers vary by context. For example, rural areas and cities
present different combinations of barriers and resources related to
transportation and communication. DB people need modifications in order to
access their environment. When DB people gather for conferences, camps, or
parties, everything is ready for them. The physical environment and the
communication or social environments have been modified, car traffic has been
eliminated, paths or trails are marked, the lighting is good, print materials
are on buff paper in large print and in Braille, and everyone can communicate
effectively. We have adopted this as our standard at DBSC, and we call it the
DB Friendly Zone.
The second, and often the biggest, barrier that DB people face is
the stereotype that many people have about what it means to be deaf-blind.
There is a stigma to being DB. People often do not understand how to partner
with us, be our allies, and share information with us. Instead, they try to
help by telling us what to do and how to fit into the
hearing-sighted world. We have adopted the motto DB to DB. We want
to partner with sighted and hearing allies, but first we look to each other for
advice about how to live as DB persons. We want to raise expectations, and we
want solutions to come from us and our community. Low expectations become a
The result of years of oppression is the third major barrier. When
DB people are isolated or marginalized for years, the effects add up and can be
huge. A DB adult who has been cut off for years will find it very difficult to
catch up and may begin to doubt his or her abilities. We need to work to change
the attitudes and systems that cause these problems. By observing DB senior
citizens at gatherings held at DBSC every month, I have come to understand the
damage that this oppression has done. Many of these adults had inadequate
education as children and limited choices as young adults. For most of their
lives they worked in sheltered jobs that provided a limited income. Their
energy, time, and creativity were spent in the struggle to survive. Once
retired, many became isolated and unaware of resources or potential hobbies
that they might enjoy. Some have been abandoned by their children or
grandchildren or have experienced the loss of a spouse.
The DB community is our foundation. DB people want and need access
to information, to communication, and to transportation systems so that we can
manage our own lives. DB adults do not want someone to do the shopping for
them; they want to have access to information and transportation to do their
own shopping. DB adults do not want someone to plan their employment; they want
the education, information, and transportation to get their own job and to have
the choice to make career changes as they go through life. DB people do not
just want to talk about themselves and have someone solve their problems; they
want to hear about you, your life, and your problems and successes too.
The change must begin with ourselves and our own sense of who we
are and who we can be. DBSC can promote this change by increasing opportunities
for DB people through:
- setting a clear example of a can do attitude as a
model for professionals, educators, families, and DB individuals;
- setting a high standard for working together and sharing life
experiences and information with which to make choices and decisions;
- developing DB leaders through education and training;
- providing role models for DB youth;
- educating the public;
- providing tools, systems, and strategies for access to
- establishing a DB Friendly Zone at DBSC.
In our new model, DBSC is continuing to offer case management and
support service providers, with an emphasis on informed choices. It is our hope
that professionals, family members, and DB people will be inspired by this
perspective and will follow our lead.
Society is not yet accessible. The case manager/advocate at DBSC
helps DB individuals to solve problems by providing them with information about
their legal rights and available resources and teaching them techniques and
strategies for communicating with members of the public such as landlords,
hospital personnel, or Social Security representatives. This staff person also
works with those same landlords, hospital personnel, and Social Security
representatives to teach them about legal mandates, available resources, and
techniques and strategies for communicating with DB people.
An important and even more popular DBSC service is the SSP
(support service provider) program. An SSP is a communication facilitator and
guide. With an SSP, a DB person can go shopping for food, clothes, gifts, and
household items without relying on friends or family. SSPs relay visual
information about what they seewhat is new and changing in the city, what
buildings are going up or coming down, what new products are being offered, and
what is on sale. SSPs do not interpret, but they relay information. They
provide incidental and informal information.
DBSC also provides a communication facilitator (CF) service. Deaf
people have used video phones to make calls, and now DB people can take
advantage of this opportunity. Communication facilitators are fluent in sign
language, and they copy for a DB person the signs made by a Deaf person or
interpreter at the other end of the video phone call. The Office of Deaf and
Hard of Hearing (ODHH) has contracted with us to provide this service. It is
one more way DB people can access information and be a part of the world.
Sharing Information in the DB Friendly Zone
Just like everyone else, DB people want to learn about things like
the growing interest in organic food and the reasons behind it, what is in the
news, and where people are going on their vacations and why. These things are
not learned by taking a class. This is the incidental learning that happens
day-to-day while chatting with others. When DB people have access to these
conversations, they come to understand the society in which they live. By
learning about others experiences, they are able to seek out new
experiences for themselves.
Just like everyone else, DB people want to learn about things like
the growing interest in organic food and the reasons behind it, what is in the
news, and where people are going on their vacations and why. These things are
not learned by taking a class. This is the incidental learning that happens
day-to-day while chatting with others. When DB people have access to these
conversations, they come to understand the society in which they live. By
learning about others experiences, they are able to seek out new
experiences for themselves.
Here at DBSC we start with touch and tactile communication. This
is the foundation upon which our community is built whether an
individuals first or primary language is English or ASL. Our doors have
pads on the floor so that when someone walks through the door and steps on the
pad, a signal is sent to our vibrating pagers. Our computers are ready with
ZoomText® or Braille printers, and everyone who works in the office is
fluent in tactile sign language. It is a comfortable place to be. The
arrangement of the furniture, the type of equipment, and the color of the walls
are all DB friendly. At DBSC, the DB way is the norm so that each DB person can
feel respected and included.
We embrace our deaf-blind identity and look to each other for
healthy role models. We look to sighted-hearing people to be our allies, not to
provide advice on how to succeed as a DB person. The following are examples of
how we apply this approach at DBSC.
DB to DB. We noticed that many DB people had started to
rely on interpreters to communicate with other DB people. We adopted the mottos
Deaf-Blind to Deaf-Blind and Pro-Tactile to emphasize
that we can develop the skills to communicate effectively with one another for
conversations or small meetings without the help of a sighted person. They also
underscore the fact that we know best how to be deaf-blind.
Tactile Sign Class. We offered a tactile sign language
class (taught by a DB staff person) that was open to all DB people regardless
of their first or primary language. Having a deaf-blind teacher emphasizes our
own expertise. Use of the tactile mode minimizes differences and emphasizes
similarities. The combination of small class size (four students) and
peer-teaching created a safe place to learn and build confidence. Students
shared experiences and explored different methods of signing tactilely. Each
student could explore and create his or her own method rather than conform to
one method intended for all.
Working together. DBSC deaf-blind staff and clients
encourage each other to use a white cane, tactile sign, and other tools and
approaches that give us the most information. We help each other find creative
solutions to problems. In this sense, we (agency and clients) are a team,
working together towards a common goal.
In the DB Friendly Zone we are able to take a deep breath, gather
information, and create solutions. Having good communication skills, access to
visual and environmental information, knowledge of resources, and the skills to
use different tools enables us to figure out together how to live. We are
developing our own expertise and learning to trust our own perspectives. We are
preparing for the future by involving DB youth in this process. Our goal is
nothing less than universal accessaccess to information, transportation,
For more information about DBSC, go to
Reaching out to the World
National Clearinghouse on
Exchange/Mobility International USA
Far from home, JennyLynn Dietrich
experiences a familiar feeling when a crying child reminds her of her own
frustrated childhood attempts to express herself and comprehend what others
were communicating. Cross-cultural and language differences between the United
States, where JennyLynn is from, and Guatemala, where she is now, drop away.
She understands this child. JennyLynn and other American social work students
from Gallaudet University have visited FUNDAL (Fundación Guatemalteca
para Niños con Sordoceguera), an education center in Guatemala City for
children who are deaf-blind or disabled. FUNDAL collaborates with the
Hilton/Perkins International Program and other international organizations.
During her visit, JennyLynn, who is deaf-blind, learned that the
tearful child had support from patient teachers to help her break through
communication barriers. I am overwhelmed by how nice the center is and
how well the children are treated, she says. FUNDAL builds
awareness in parents, showing how they can do more for their children. They
have a group of people who teach kids signing, so they can have a communication
method. Its incredible what they do.
JennyLynn visited FUNDAL as part of a 2-week-study-abroad graduate
course (http://academic.gallaudet.edu/courses/spa/CREPBerw.nsf). The visit to
Guatemala was her first trip outside the United States. I wanted to
experience going beyond the borders of myself . . . being able to do more than
I felt I could do, she says. [At FUNDAL] they are intrigued because
I am deaf-blind, visiting their school from America and getting a masters
degree. They are impressed, and now they know that these kids can do it
Over the course of history, deaf-blind leaders, such as Helen
Keller and Father Cyril Axelrod, have reached out to deaf-blind communities in
other countries, formed international organizations, and traveled abroad.
Future leaders of todays deaf-blind community are venturing overseas for
similar reasons, and at younger ages.
I stayed in Paris for an entire month mingling with kids my
age from 11 other countries and visiting the Musée du Louvre, Eiffel
Tower, Avenue des Champs-Élysées and more, says Christine
Roschaert, who traveled to France as a 12-year-old to participate in the
Childrens International Summer Village (http://www.cisv.org). That experience
profoundly changed me for life; from there on I knew I wanted to explore more
of the vast world.
Now 29, she has done just that. I found solace in
discovering the world, says Roschaert, who studied for a year at a school
for students who are deaf and hard of hearing in Oldenburg, Germany, on a
Rotary International high-school scholarship
(http://www.rotary.org/programs/youth_ex). After my stay in Germany, I
became quite fluent in German and went to the top of my class when it came to
speaking, reading, and writing German, she says.
International experience exposes travelers to cultural and class
differences and promotes awareness of global communities. Christine describes
the ways she has been changed by her international exchanges as more
complex than the universe. I know that I have become a better
person, more empathetic, and I have understood what it means to be privileged
and underprivileged, she says.
Many of these changes happened during an internship to the
Philippines, when she was a student at Gallaudet University
(http://cge.gallaudet.edu/). In the town of Jagna, Bohol, she taught at a
primary school with 900 students, 200 of whom were deaf or deaf-blind.
Reflecting on this experience, she says, I encountered many deaf and
deaf-blind children [who] were denied proper education. I felt a surge of
passion and I just knew that I was destined to do something on an international
level. Christine has dreams of working in other countries and eventually
at the World Federation of the DeafBlind in Europe. [I want to] change
how others perceive DeafBlind people and empower others for independence,
Practical Traveling Issues
The practicalities of traveling overseas with a specific purpose
require extensive planning. JennyLynn arranged for close-vision interpreters
and SSPs to travel with her on her current study-abroad program to Guatemala.
I was very concerned about the possibility that I could get lost or
trapped in certain areas where I couldnt get help from the U.S. Embassy
or my professors, says JennyLynn. As it turned out, the only difficulties
that she encountered were narrow, cobbled roads and cars that wouldnt
Drew Hunthausen, a student at Golden West College, California,
traveled abroad without his parents for the first time with sponsorship by the
Westminister Lutheran Church to volunteer at a boys shelter in Jamaica.
When I first got there I was nervous because I am blind and also have a
hearing impairment; I wasnt sure what I was able to do or how I was going
to fit in. But being there, just hanging out and spending time with the boys
was all they really wanted, he says. They had quite a few questions
about my disability. It was cool that after the first day the boys got to know
me and they all wanted to lead me places. The rocky terrain created a
challenge in getting around, so Hunthausen brought his long cane and, depending
on circumstances, asked other church volunteers to be his sighted guides.
Steven Frank, an avid traveler who is deaf-blind suggests
preparing for a lack of accessibility when sight-seeing at historic ruins.
You may need two SSPs, one on each side, to tackle uneven or slippery
steps, he says. Steven also has suggestions for air travel. When he
travels alone, he has an SSP go with him to check baggage and guide him to the
airport gate. He informs the airline to put instructions in their computer
system for an employee to meet him at the gate at the end of a flight and guide
him to the baggage claim. He brings a photo of his luggage so that it can be
Traveling without an assistant is permitted as long as the
individual can establish some means of communication with carrier
personnel, adequate to permit transmission of the safety briefing, as
stated in the Air Carriers Access Act (ACAA). A 1997 lawsuit, which ruled
against a U.S. airline in favor of a deaf-blind traveler, concluded that
airlines cannot require personal assistants by substituting their own judgments
about safety in place of the requirements imposed by the
regulations. A later 2005 consent order ruled that international carriers must
also comply with the ACAA when flying to and from the United States.
Steven suggests preparing in advance some communication notes on
index cards. For example, anticipating the following situations, he might write
- To communicate, please trace block letters on palm of my
- Please lead me to the closest exit.
- For a drink I would like cranberry juice, second choice
is apple juice or cola.
- Please call a flight attendant.
- Please lead me to the restroom.
- Please lead me to the baggage claim area where my friend
(or family) is waiting.
He includes the same message in Braille on the cards so that he
can identify them.
Steven also stresses the importance of becoming familiar with
common safety precautions for traveling abroad, such as wearing a passport and
money holder under ones clothes or finding other spots to keep valuables
safe. He always rests his foot against his luggage when waiting, to be able to
feel if it has been removed, and keeps copies of his passport in a place
separate from his actual passport.
With these preparations in place, the world becomes less
intimidating. I climbed to the top of the Mayan pyramids in Tikal
[Guatemala], which was very cool although exhausting, says JennyLynn.
The stairs were very steep, and I was crawling on hands and feet, but it
was worth it. Borders no longer limit JennyLynn. She knows that as she
reaches across them, others like Christine, Drew, Steven, and the people she
has met abroad will join hands with her, giving strength and leading the way.
Resources for Learning about International
The National Clearinghouse on Disability and Exchange (NCDE) is
sponsored by the U.S. Department of State and administered by Mobility
International USA. The NCDE is a comprehensive resource that provides free
information, tips, and referrals to people with disabilities about traveling
overseas for the purpose of international study, internships, and volunteering.
For information about learning a foreign language, read its tipsheet,
Foreign Languages and Students with Learning, Hearing or Vision
National Clearinghouse on Disability and
Mobility International USA
132 E. Broadway, Suite 343
Tel/TTY: (541) 343-1284
Fax: (541) 343-6812
Explorers, Inc., is an international organization dedicated to
providing travel and tourism experiences for people who are deaf-blind all over
the world. It provides the unique experience of exploring destinations that may
otherwise not be available to individuals who are deaf-blind. SSPs and
interpreters accompany all trips. Explorers, Inc., strives to raise awareness
of the needs of travelers, to remove barriers to access, and to expand travel
opportunities everywhere in the world.
P.O. Box 32015
Tel: (513) 242-4147
Fax: (513) 242-4287
Michele Scheib can be reached at
The time for leaving high school and moving
on to adulthood is an exciting stage of life for everyone, and this is
certainly true for 19-year-old Angelyne Thorning. Angelyne lives in Florida
where she is a senior in high school and currently making plans and gaining
experiences that will help her make the important transition to adult life. In
addition to the typical challenges faced by all teenagers, Angelyne has CHARGE
Syndrome, which can cause hearing and vision loss as well as a number of
medical problems. Angelyne has severe hearing loss, is blind in her left eye,
and has low vision in her right eye.
When Angelyne was born, very little was known about CHARGE
Syndrome. Her mother, Ruby, describes a time of trial and error as the family
worked to get for Angelyne the medical and educational services that she
needed. In addition to vision and hearing loss, Angelyne was born with a number
of the medical problems associated with CHARGE. She spent the first 4 months of
her life in a hospital and was in and out of the hospital frequently until age
6. As a teenager, she has had kidney problems that have required several
operations. Ruby says that, A lot of CHARGE children dont know
anything but pain. Because of everything Angelyne has been through, it was hard
for her to make friends when she was growing up. She is very confident, but in
some ways she had better relationships with adults than with kids her own age.
She grew up fast, but slow at the same time.
Angelyne uses oral speech, wears hearing aids, and uses an FM
system at school. She has her own computer and e-mail account. In 2006, she had
a poem published in The International Whos Who in Poetry. Outside of
school, her interests include NASCAR and country music. Ruby believes that part
of the reason that Angelyne has done so well is the influence of her sister
Amber, who is 4 years older than Angelyne. When Angelyne was an infant, Amber
watched Angelynes therapists work with her and later did the same types
of activities with Angelyne on her own. Angelyne had lots of practice and many
opportunities to learn!
At 19, Angelyne is thinking about her future. Last year she
attended a meeting for teenagers in Florida and Georgia who are deaf-blind. It
was the first time that she met other teens with deaf-blindness. She even met
another teen with CHARGE Syndrome. Angelyne has also been gaining work
experience. When she was a junior in high school, she worked in the mail room
and cafeteria of a local hospital for 3 hours a day, 4 days a week, and while
attending a summer transition program for teens at the Lighthouse of Central
Florida, she worked 2 days per week in the community. She learned how to use
public transportation and acquired independent living skills such as cooking,
cleaning, and washing clothes. The program also provided an opportunity to be
with other teens who face similar challenges.
Last fall Angelyne participated in a 2-week vocational and
independent-living skills evaluation at the Florida Lions Conklin Center for
the Blind, where she learned that she has many qualities that will help her in
the working world. She is focused, organized, a hard worker, and fun to be
around. Angelyne says that her goals are to live independently, have meaningful
work, and earn money. She is very interested in meteorology and is now trying
to discover what type of education and training she will need to work in this
field. After she graduates from high school, she plans to return to the Conklin
Center for more assessment and training.
Helen Keller National
When I first told my colleagues about my
plans to travel to Australia last September to attend the Deafblind
International World Conference, several of them questioned whether the trip
would be worth the cost, time away from family and work, and the physical toll
of a trip halfway around the world. After all, with e-mail and the Internet,
arent worldwide connections just as convenient from ones office as
they are in person? The answer is yes . . . and no.
Compared to the no-tech early days in the field of deaf-blindness,
we all accomplish an incredible amount of quality work via e-mail, listservs,
search engines like Google, and more recently, Internet-based video phone
calls. And yet, there really is nothing like face-to-face communication and the
energy generated in a room full of people who share a common interest. Perhaps
thats what those who created the theme for this conference,
Worldwide ConnectionsBreaking the Isolation, had in mind.
Its not just those who are deaf-blind who are isolated. Parents and
professionals working in this tiny microcosm of a field feel the isolation too.
A week of full-blown small- and large-group interactions was a great antidote
My main purpose for attending this conference was to launch the
newly formed Rubella Network. Although I later learned that network meetings
would not play a major role in the agenda, we were able to squeeze this one in
as a concurrent session. Those participants who had only met through online
listservs finally had a chance to meet in person. Adults with Congenital
Rubella Syndrome, parents of children with CRS, and the professionals who serve
them all packed into a small meeting room for an enthusiastic and encouraging
half hour. If there was one theme that emerged from that meeting, it was
Dont let rubella be forgotten. Although rubella has been
eliminated in many parts of the world because of better immunization policies,
it continues to wreak havoc in developing countries. Also, adults who are
deaf-blind from CRS continue to be reported worldwide as having additional
health concerns in later years. Questions about a link between rubella and
mental health have surfaced, not only in those who are deaf-blind from CRS but
in the deaf population as well. Degenerative processes leading to early death
continue to be reported. Fallout from the powerful and emotional MMR
vaccine/autism debate continues. And a new study on maternal health is being
piloted. There is plenty of work to keep us busy!
Presentations at the conference were quite diverse and filled with
hope. In one, the incredible futurist Ray Kurzweil (projected on a larger
than life screen via the Internet) explained how technological growth
occurs exponentially rather than linearly. He predicted that incredible strides
in technology will occur much more quickly than ever before. In another
presentation, it was shown that developing countries are proudly creating some
amazing new services through determination and ingenuity borne of necessity.
For one short week, those of us lucky enough to attend this
conference were immersed in inspiration and affirmation. If Ray Kurzweil is
right, we can only expect these positive experiences to grow exponentially.
Report from the 14th Deafblind International World
St. John Fisher
Rochester, New York
I was fortunate to attend the Deafblind
International World Conference in Perth, Australia, in September 2007. What a
wonderful week! I knew it would be easy to feel overwhelmed by all the
offerings, so I picked a focus areatransition from childhood to
adulthoodto help me decide which sessions to attend. But the conference
was so dynamic and the presentations so wonderful that, instead of staying with
this theme, I attended a wide range of presentations and thought about how each
related to transition issues. I came away with great respect for all of the
presenters and a deep appreciation for the international community. In this
article I review six sessions on a variety of topics.
Inclusion in Puerto Rico
Juanita Rodriguez of the University of Puerto Rico and her
colleagues presented information about a systematic process used in Puerto Rico
to include students who are deafblind in regular classrooms. To support the
process, the National Technical Assistance Consortium on Children and Young
Adults Who Are Deaf-Blind (NTAC) had provided training in 2003 on
deafblindness, authentic assessment, and best practices for inclusion.
To review how inclusive practices can and do occur, Rodriguez and
her colleagues presented the case study of a young girl, J, and described how a
systematic technical assistance model was used to successfully support her
transition from a self-contained classroom to regular school for the first
grade. The model used a person-centered process to explore Js interests
and communication, social, and academic skills and to revise her Individualized
Education Program. Her peers were taught sign language, and cooperative
learning was used to foster social interaction. J used accommodations in the
classroom but underwent the same evaluation process as her peers. She
participated in physical education and extracurricular activities and made
friends with classmates.
This presentation highlighted the reality that for every child in
a segregated setting there is a child somewhere with identical needs who is
fully included. This developmental twin idea can be powerful in
countering attitudinal barriers to inclusion in schools and in communities. It
demonstrates that with supports and services, there need be no barriers to
fully inclusive lives for people who are deafblind.
Accessing the Community in the UK
Jenny Fletcher of Sense UK discussed the background for
legislation supporting access to community resources and activities by children
who are deafblind. The legislation, which resulted in guidance for local
authorities called Social Care for Deafblind Children and Adults,
was due in part to lobbying efforts by older adults with deafblindness to
Parliament and the House of Lords for rights to access their communities
resources. The guidance includes processes for identifying people who are
deafblind, followed by assessments to determine their needs and the provision
of appropriate services. It also emphasizes the need for agencies to assign a
member of senior management to be responsible for deafblind services and to
provide information about services and activities in accessible formats.
The seniors lobbying efforts had a powerful effect on the
lives of young people who are deafblind. Jenny presented four cases of
children, ranging in age from 2 to 13, who participate in community activities
such as swimming and playing in a park. This presentation was inspiring because
it showed the direct, positive effect of advocacy efforts on the daily lives of
Music and Movement Therapy in Sweden
Mea Nordenfelt from Stockholm, Sweden, discussed music therapy
that she has used with two adults who are congenitally deafblind. She began by
asserting some standard rules to ensure that persons with disabilities
are integrated into and can participate in cultural activities on an equal
basis. She showed video clips to demonstrate how she engaged with her
clients through the use of songs, body movement, and props such as scarves and
pillows, and she talked about the importance of body awareness and the
interplay of touch, body movements, and emotions.
One of the individuals with deafblindness, T, had difficulty with
balance, so the therapy took place on a floor covered wall-to-wall with thick
mats. Mea worked with T by singing and moving in rhythm to a familiar tune.
They sat back-to-back and swayed from side to side while Mea led T through a
movement sequence. It was clear that he anticipated the movements and enjoyed
moving through the sequence.
Mea stressed the importance of play and enjoyment in therapy, and
she clearly practices what she preaches. It was absolutely clear that her
clients benefited in significant ways from this therapy. I left the session
with a strong sense of her passion for using movement and play not only as
tools for communication, but for enjoying life! It renewed my commitment to
understanding physical activity and body awareness as essential parts of any
service plan and inspired me to think about including physical activity and
movement as part of transition planning.
Young Adults in India
Dipti Karnad from Chennai, India, reviewed the cases of three
young people preparing for transition to adulthood at the Clarke School for the
Deaf, under the guidance of a vocational model designed to support the
development of communication, mobility, academic, and social skills during
participation in everyday activities. Karnad emphasized the important concept
of partial participation, in which skill development and activities are
individualized to meet each students needs. A focus on individual needs
and interests is an essential component of all transition planning. Once
interest areas have been determined, skill assessments guide transition teams
in the development of supports and services.
Making Connections for People with Usher Syndrome
in the UK
Marilyn Kilsby of Sense UK spoke about social connections for
people with Usher Syndrome. She described two groups in England, a social group
and an Internet-based e-group, and reviewed the challenges and characteristics
of each. Challenges for social groups include arranging transportation, finding
and paying communicator-guides and interpreters, locating suitable venues, and
procuring technical support equipment. Hearing and Sight Impaired UK (HSI UK)
has 337 people on its mailing list, 148 of whom live in London and Southeast
England. The group found a well-lit venue that was easily accessible by public
transportation and contacted SENSE (a local organization for people who are
deafblind), which organized volunteer communicator-guides and helpers.
Being part of a social group has benefited most of the
participants. Many have become more confident, have developed leadership
skills, or have lent their expertise to the group. Having a place where no
explanations are needed is a welcome respite from the challenges of daily life,
and one that most people enjoy.
The second type of group is an e-group, which takes place entirely
in cyberspace. One such group, the Usher Life E-group, has 72 members from
around the world. It grew out of the HIS UK social group and uses written
English to share information and facilitate discussions about matters affecting
those with Usher Syndrome.
Marilyn concluded her presentation by reminding us that while
there are challenges to organizing a social group, the benefits are well worth
the effort. She encouraged us to consider starting a social group in our own
Person-Centered Planning in the US
Clara Berg and Arnie Mejia from the United States spoke about a
wonderful way to think about person-centered planning: as a restaurant menu.
First comes the appetizer, a process of finding out who a person is and what
his or her likes, character, abilities, and preferences are. The appetizer
ingredients appear throughout the meal and set the stage for the rest of the
meeting. The second course is the entrée, which adds to the components
of the appetizer a circle of support, opportunities, contact people, natural
and paid supports, financial possibilities, and community settings. This part
of the meal cannot be rushed. It takes time to make a good meal and a good
personal plan for the future. For dessert, the plan is set in motion with
responsibilities and due dates, charts to stay on track, and an open chart for
new ideas. This way of thinking about planning reminds us that we can design
the menu we want based on our individual needs. The same appetizers may not
lead to the same entrée or dessert choices, and choice is what
person-centered planning is all about.
This was an incredible conference, and it was great to be exposed
to innovative ideas from around the world. After attending the conference, I
was excited about what I had learned and determined to work to increase
opportunities for people who are deafblind.
Hearing loss due to auditory neuropathy is
receiving increasing attention and research. The following list of materials
provides information about this important topic. The first two items are
overviews of the condition. The remaining items are research articles on the
use of cochlear implants for auditory neuropathy.
Berlin, C. I., et al. (2007). Auditory neuropathy/ dys-synchrony
(AN/AD). In S. Schwartz (Ed.), Choices in deafness: A parents guide to
communication options (3rd ed.), pp. 49-77. Bethesda, MD: Woodbine House.
Thierry M. Differential diagnosis of auditory
neuropathy/dys-synchrony and (central) auditory processing disorders.
Insights in Practice, June 2007.
Jeong, S. W. (2007). Cochlear implantation in children with
auditory neuropathy: Outcomes and rationale. Acta Oto-Laryngologica
Supplement, 558, 36-43
Miyamoto, R. T., et al. (1999). Cochlear implantation in auditory
neuropathy. Laryngoscope, 109, 181-185.
Shallop, J. K., et al. (2001). Cochlear implants in five cases of
auditory neuropathy: Postoperative findings and progress. Laryngoscope
Trautwein, P. G., Sininger, Y. S., & Nelson, R. (2000).
Cochlear implantation of auditory neuropathy. Journal of the American
Academy of Audiology, 11, 309-315.
For Your Library
Practice Perspectives: Children Who Are Deaf-Blind.
National Consortium on Deaf-Blindness, November 2007.
This publication provides details about the population of children
who are identified as deaf-blind, including the classification of vision and
hearing loss, the types of additional disabilities that may be present, and the
causes of deafblindness. Vignettes and photos of four children who are
deaf-blind illustrate the diversity of this unique group of children.
the web: http://nationaldb.org/documents/products/ population.pdf. Print
copies are available free of charge from NCDB (800-438-9376, 800-854-7013 TTY,
Early Interactions: Parent-Professional Perspectives in Early
Deborah Chen & Diane M. Klein. Paul H. Brookes
Publishing Co., 2007.
This 45-minute-long DVD is designed to prepare current and future
professionals to work effectively with young children with disabilities. It
includes footage of two young childrenRyan an infant with visual
impairment and cerebral palsy, and Michael, a toddler with visual impairment
and hearing loss. Cost: $89.95. Available from Paul H. Brookes, Publishing Co.
Bruce, S. M., Mann, A., Jones, C., & Gavin, M. (2007).
Gestures expressed by children who are congenitally deaf-blind: Topography,
rate, and function. Journal of Visual Impairment and Blindness, 101(10),
Bruce, S. M., & Vargas, C. (2007). Intentional communication
acts expressed by children with severe disabilities in high-rate contexts.
Augmentative and Alternative Communication, 23(4), 300-311.
Janssen, M. J., Riksen-Walraven, J. M., Van Dijk, J. P. M.,
Ruijssenaars, W. A. J. J. M., & Vlaskamp, C. (2007). Team interaction
coaching with educators of adolescents who are deaf-blind: Applying the
diagnostic intervention model. Journal of Visual Impairment and Blindness,
McKenzie, A. R., & Davidson, R. (2007). The emergent literacy
of preschool students who are deaf-blind: A case study. Journal of Visual
Impairment and Blindness, 101(11), 720-725.
Parker, A.T., Davidson, R., & Banda, D. R. (2007). Emerging
evidence from single-subject research in the field of deaf-blindness.
Journal of Visual Impairment and Blindness, 101(11), 690-700.
McKenzie, A. R. (2007). The use of learning media assessments with
students who are deaf-blind. Journal of Visual Impairment and Blindness,
New Personnel Preparation Project at Utah State
A preservice online training program in deafblindness is now
available through Utah State University. Based on the National Intervener
Competencies, the courses are designed to prepare paraprofessionals to work as
interveners with children and youth who are deafblind. It can also be useful to
teachers, parents, administrators, and adult service providers. For further
information, contact Linda Alsop, SKI-HI Institute, Utah State University.
Phone: 435-797-5598. E-mail: firstname.lastname@example.org.
SFSU and CDBS Teacher Training Program in
San Francisco State University has been awarded a four-year
personnel preparation grant from the U.S. Department of Education, Office of
Special Education Programs. The new programa partnership between
SFSUs Moderate/ Severe Disabilities Credential Program and California
Deaf- Blind Serviceswill prepare teachers to meet the needs of students
who are deaf-blind and develop the next generation of leaders in the field of
deaf-blindness. Students will be eligible to receive substantial stipends of
approximately $15,000. For more information, contact Dr. Pam Hunt, Professor
and Coordinator of the Moderate/Severe Disabilities Credential Program,
Department of Special Education, San Francisco State University. Phone:
415-338-7848. E-mail: email@example.com.
National Center on Severe & Sensory
The National Center for Low-Incidence Disabilities has changed its
name to the National Center on Severe & Sensory Disabilities (NCSSD). The
new name emphasizes the needs of children with severe and/or sensory
disabilities and the strategies to address those needs. NCSSD embraces the
mission of improving the nations capacity to teach children with severe
and sensory disabilities so that these children can realize productive and
fulfilling adult lives. Visit NCSSDs newly designed website or read the
Making Waves Newsletter (www.unco.edu/ncssd/news/news.shtml)
to learn more. NCSSDs 2008 Research in the Rockies Summit is scheduled
for the fall in Denver.
AADB Today: A New Electronic Newsletter
AADB Today is a monthly newsletter from the American Association
for the Deaf-Blind. Each issue updates readers about AADB, highlights hot
topics, and spotlights people in the deaf-blind community. Sign up for this
free newsletter at the AADB web site: www.aadb.org.
Conferences and Events
The following list includes only a small number of events that
will occur over the next six months. For a complete list, visit the National
Consortium on Deaf-Blindness web site (www.nationaldb.org) or call 800-438-9376.
Secondary Transition State Planning Institute:
Building for the Future May 78, 2008 Charlotte, North Carolina
The focus of this institute will be on needs identified through
analysis of SPP/APR data, targeting transition-related indicators 1, 2, 13, and
14. It will address states requests for technical assistance from the
National Dropout Prevention Center for Students with Disabilities (NDPC-SD),
the National Post-School Outcomes Center (NPSO), and the National Secondary
Transition Technical Assistance Center (NSTTAC). Web:
CHARGE Syndrome/Deaf-Blind Weekend July 1113,
2008 Kingsport, Tennessee
This conference is sponsored by the Tennessee and South Carolina
Deafblind Projects, and presented by David Brown, an internationally recognized
expert on CHARGE syndrome and deaf-blindness. David will focus on sensory
systems, obsessive-compulsive behavior, self-stimulation, and intervention
strategies, and he will be available to answer questions from parents and
professionals. For information contact Jennifer Miller at 615-322-7194 or
Combined Summer Institute in Special Education
July 1417, 2008 Yakima, Washington
This conference, sponsored in part by Washington Sensory
Disability Services, focuses on families and professionals working with
children who are autistic, blind/visually impaired, deaf/hard of hearing,
deaf-blind, or multiply disabled. The theme this year is Communication and
Language: Bridge to Success. For more information contact Jackie Messer at
509-665-2630 or firstname.lastname@example.org. Web:
Pathways to Possibilities August 1315, 2008
Virginia Beach, Virginia
This combined conference is for families and professionals who
work with students who are deaf, hard-of-hearing, blind, low vision,
deaf-blind, or multi-disabled. It is sponsored in part by the Virginia Project
for Children and Youth with Dual Sensory Impairments/Deaf-Blindness. For more
information, visit http://www.vcu.edu/partnership/pathways.
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