Volume 10 Issue 1
In This Issue
Editor’s note: A longer version of the following article was originally published in Deafblind Focus, the newsletter of the Indiana Deafblind Services Project, Vol. 13 (1), Fall 2001. It is reprinted here with permission.
Imagine that you are about to be interviewed for an important job. You prepare by anticipating questions, considering what the employer is looking for, and thinking about what makes you uniquely suited for the position. You arrive at the interview nattily dressed and confident. There’s some idle chat, and then the interview begins in earnest. You are asked, “How many days make a year on the planet Neptune? Name the currency of Myanmar. In what direction is the Leaning Tower of Pisa leaning?” When you look puzzled, the interviewer clucks and shakes her head, jots down a few notes, then continues with other questions that really have nothing at all to do with the job. You leave the interview feeling like “the weakest link,” knowing that you did not have a chance to demonstrate your competence.
As ludicrous as it sounds, this experience may not be so different from what students who are deafblind go through in traditional psychological evaluations. Such evaluations involve the use of formal tests to obtain information about a person’s intelligence, language skills, academic abilities, social competence, and emotional functioning. There are literally thousands of psychological tests. But unfortunately, most tests are not appropriate for use with individuals who have dual sensory impairments and other disabilities because they require normal vision and hearing and because they were developed for use with children in general education programs.
Yet, in schools across the country, the “competencies” of deafblind children and adolescents are often judged by tasks that are invalid because they have little connection to the students’ actual learning experiences, achievements, or educational needs and goals. When these tests are administered to deafblind students, whose curricula have been individualized throughout their school years, the students typically perform poorly. The “results” may reflect low IQ or achievement scores. They may focus on one’s delays and disabilities instead of true capabilities, leaving students and their families disheartened. Indeed, in one recent survey of parents and guardians of school-age children who are deafblind (Mar, 1998-1999), 43 percent of the respondents felt that the findings of recent psychological evaluations were not useful or did not accurately reflect the skills of their children.
Suppose that the job you are applying for is that of a store manager or an information technician or a home health aide, and suppose that the questions now have to do with work experience. No matter that you’re the perennial loser of Trivial Pursuit, the interviewer seeks to assess your competencies in the context of the work environment. What special skills and knowledge will you bring to the job? How will you identify and address problems? Will you be able to interact and communicate well with others? In this interview, there is close correspondence between the skills being assessed and the skills required for the job.
Similarly, an assessment that seeks to understand how a deafblind student actually performs functions, understands tasks, and responds socially is usually more meaningful to students, teachers, and their parents. Areas of evaluation, like communication and life skills, are relevant to the student’s educational goals. “Results” of the evaluation are viewed in terms of the student’s progress toward those goals and the degree of participation in tasks and routines, as opposed to failures or lack of knowledge. Instead of the use of formal intelligence tests, this type of evaluation may involve observations of the student in everyday school and classroom environments and routines; interviews of teachers, parents, and peers; or interactions between the evaluator and the student during typical learning activities.
So why don’t psychologists and other evaluators simply change their ways? There are several reasons. Many psychologists lack familiarity with the unique educational issues and challenges of students who are deafblind and resort to “standard” assessment procedures. Graduate schools and training programs may not teach alternative procedures for evaluating children with “low incidence” disabilities. School districts may insist on getting IQ scores or other quantitative data to qualify students for special educational services.
Several states and agencies have been acting to address these problems. One innovative program was designed by the Indiana Deafblind Services Project, which aimed to provide training and technical assistance to school psychologists, educators, families, university faculty, and other service providers. The program was called PHASES, an acronym for “Psychologists Helping to Assess Students’ Educational Strengths.” PHASES was designed as a systems change program that focuses on providing inservice training to psychologists across the state of Indiana. PHASES involved collaboration among the Indiana Deafblind Services Project, the Division of Special Education of the Indiana Department of Education, and the Indiana Association of School Psychologists.
The PHASES Project
PHASES grew out of a clear need that was voiced, in part, by school psychologists responsible for the assessment of students with deafblindness. In 1997, the Indiana Deafblind Services Project sponsored a statewide needs assessment of school psychologists’ practices, competencies, and training needs (Newman, 1997). A questionnaire was distributed to 373 school psychologists, of whom 158 responded. Some 87 percent of the respondents indicated interest in participating in a training program; 60 percent had not attended any inservice training programs on assessment of children with deafblindness and severe disabilities; and 41 percent considered themselves to have inadequate training to evaluate these students. Based in part upon these identified needs, the Indiana Deafblind Services Project designed PHASES.
PHASES, was designed not only to provide training to school psychologists, but also to develop or increase “state and local capacity.” By this it is meant that PHASES would seek to identify specific psychologists around the state who represented good “investments” for training. Prospective trainees would include those who were well established within their communities, were planning to stay in their present jobs, and/or had interest in and experience with serving individuals with disabilities. Once trained, these psychologists could then serve as valuable resources for deafblind children and their families within their own counties or geographic regions, as well as mentors or partners to other school psychologists who might be called upon to evaluate children with deafblindness.
School psychologists were recruited with the support of the Indiana Association of School Psychologists (IASP). This organization, which is affiliated with the National Association of School Psychologists, is divided into seven geographic regions. Psychologists from each region were invited to apply for participation in an extensive training program, with the understanding that if accepted, the applicant would be required to complete five full days of training, spread over several sessions during a three-month period. Eventually, a total of twenty psychologists were selected for participation, two from each of the seven IASP regions, and six others from special schools or programs serving students with deafblindness and other severe disabilities.
The training program was designed to involve a combination of teaching methods, including traditional lecture, interactive discussion, panel discussion, case analyses involving reviews of actual students in Indiana schools (resulting in educational recommendations), videotape analyses, small-group and team tasks, and “homework” between sessions.
The main program presenter was Harvey Mar, Assistant Professor of Clinical Psychology in Pediatrics of the College of Physicians and Surgeons of Columbia University. Other presenters included four parents of deafblind students who took part in a panel discussion, Melanie Davis, Coordinator of the Indiana Assessment System of Educational Proficiencies of the Department of Educational Studies at Purdue University, and Karen Goehl, Director of the Indiana Deafblind Services Project.
The content of the workshop focused on nontest approaches to psychological evaluation, which emphasized evaluation of deafblind students in natural contexts and situations. This approach has been termed “contextual” or “ecological” and presumes that observations of individuals across a sample of real-life school and home activities provide the most useful information about their communication, problem solving, adaptive, social interaction, and academic skills. In this approach, the “tools” of evaluation are not formal tests, but the evaluator’s ability to identify critical educational concerns, describe communication skills and behaviors, observe competencies, recognize specific challenges, and think creatively about solutions using psychological theory and knowledge.
Focus on Practical Skills
Whereas traditional psychological evaluations might generally suggest educational programs and classroom support for students, contextual evaluations result in specific recommendations that can be directly implemented in the classroom, school, and home. For example, recommendations might focus on how to increase or improve social interaction opportunities for the deafblind student, on how to adapt lessons so that they are meaningful, on what specific communication interventions should be considered, on how to promote the student’s attention and motivation, and on how to increase participation in functional skill routines. Throughout the workshop series, the emphasis was on development and application of practical skills.
Goals and Outcomes
The primary objective of PHASES was to provide training and support to school psychologists within Indiana to enable them to conduct meaningful evaluations of deafblind students. But unlike many training programs that simply provide participants with information through lectures and discussion, PHASES was also designed to yield three demonstrable outcomes:
A questionnaire was developed to evaluate school psychologists’ practices in evaluation of children with deafblindness and other severe disabilities. The questionnaire was administered at the beginning of the first workshop session and then again after the last workshop session several months later. Responses were informally reviewed and analyzed to examine changes in practices.
For one question, the psychologists read a brief description of a
student who is deafblind and has other multiple, severe disabilities. They were
then asked, “How confident are you that you could do a valid and
meaningful evaluation of this student?” Prior to beginning the workshop,
only 2 of 21 respondents reported feeling “very” confident. The
majority felt that they were “not at all” confident, and some felt
that they were “somewhat” confident. By the end of the workshop
series, attitudes changed. No psychologist responded “not at all”
with respect to confidence level, and 9 reported feeling “very”
Undoubtedly, the most significant change that took place over the course of the workshop was the increased sense of empathy and support for parents that each psychologist had developed. In the one-day follow-up to the workshop series, the school psychologists, nearly all of whom returned for the meeting, arose one by one to talk about their work with parents. One commented that she had made an effort to start visiting children in their homes and communities. Another reported that she viewed herself as the advocate for parents during team meetings. All of the psychologists agreed that they had come to understand and respect the challenges faced by parents of deafblind children.
PHASES was the first project of its kind. Its scope was statewide. Now–two years later–there are continuing efforts to share information among psychologists in Indiana. There is an active informal network of psychologists who participated in the training. Many of these psychologists have gained expertise and confidence to serve the needs of children within their own schools and communities.
Additional information about PHASES can be obtained by contacting
the Indiana Deafblind Services Project, Blumberg Center, School of Education,
Room 502, Indiana State University, Terre Haute, IN, 47809, (800-622-3035). The
PHASES Training Information and Videotape Multimedia Package can be checked out
through the project’s Resource Materials Center or through DB-LINK, The
National Information Clearinghouse on Children Who Are Deaf-Blind:
Mar, H. (1998-1999). Family survey on assessment. Psychoeducational Assessment of Students Who Are Deafblind, Winter 1998-1999, 1-2.
Newman, B. A. (1997). School
psychologists’ assessment practices and training needs in working with
children with dual sensory impairments. Unpublished master’s thesis,
Indiana State University, Terre Haute, Indiana.
Personal Perspectives is a column about deaf-blind people, their families, friends, and professionals in the field. This issue features Stephanie MacFarland who, over the past twenty years, has worked as a teacher, consultant, and assistant adjunct professor in the area of deaf-blind education. Currently, she is the coordinator of a master’s level teacher training program in severe and multiple disabilities, including deaf-blindness, at the University of Arizona, and recently she was awarded a teacher preparation grant for five years. She does consulting for the Arizona Deafblind Project and is on their advisory board. I talked with Stephanie about the development of her career and her thoughts about deaf-blind education and the current state of personnel preparation in the field.
Stephanie knew that she wanted to be a teacher as early as elementary school. And in the third grade, when she saw the movie The Miracle Worker, about Helen Keller’s education, she felt that she would especially like to teach deaf-blind children. Her educational background includes a bachelor’s degree in elementary education from the University of Arizona, a master’s degree in educating students who are deaf-blind and multiply disabled from Boston College, and a Ph.D. in special education with an emphasis in curriculum theory, design, and development from the University of Arizona.
After graduating from Boston College, Stephanie worked for two years teaching a segregated classroom of deaf-blind children. She found the experience somewhat frustrating because teaching methods in use for deaf-blind children in the area at that time did not emphasize teaching communication or functional skills, or adapting curricula. She says, “I realized that I wanted to learn more about the importance of communication and curricula development and help establish a curricular model that would enable teachers to work more effectively with deaf-blind children.”
She decided to learn more about the teaching approach of Jan van Dijk in The Netherlands. She had first heard about the van Dijk approach while at Boston College and had been struck by its strong philosophical basis that emphasized communication, language development, and individualized planning for each student. She returned to Arizona to continue her education and ultimately ended up studying with van Dijk in The Netherlands for a year on a Fulbright scholarship.
This path led Stephanie to her involvement in teacher training. She worked for five years in Boston in the early nineties: First, as co-coordinator with Barbara McLetchie of the Boston College Teacher Training Program and then with the Perkins National Deafblind Training Project, a federally funded project to establish a model for improving educational practices. She also worked for Hilton Perkins International in Portugal and Czechoslovakia. “This was a great time in my life,” she said, “because it was wonderful to be working with so many people all focused on the areas of deaf-blindness and multiple disabilities.” The influence of others on her career and thinking is a theme that she stresses. She has been greatly influenced by many people who have been mentors to her over the years, including Sherill Butterfield, an instructor when she was at Boston College, Barbara McLetchie, Jan van Dijk, and June Downing, with whom she worked at the University of Arizona.
Stephanie has been in her current position as a professor at the University of Arizona in Tucson since 1995. She sees the current system of personnel preparation facing a number of difficulties, largely related to financial considerations. Because deaf-blindness is a low incidence disability, the number of teachers wanting to be trained in this area is small. Therefore, most universities and colleges will not independently fund teacher training programs in deaf-blindness. The programs are primarily funded by the federal government, and obtaining continued funding is an ongoing struggle. An additional difficulty, she said, is that few professors have training in deaf-blindness, and because of the lack of stable funding for existing programs, universities do not usually support tenure-track positions for these professors.
Despite these difficulties, Stephanie believes that specialized teacher training programs in deaf-blindness are essential. She doesn’t feel that generic teacher training programs provide the education that teachers need to work with deaf-blind children, and she believes that maintaining the programs will require ongoing advocacy and collaboration. One important area of collaboration, for example, is to form strong connections with universities that have training programs in severe and multiple disabilities, visual impairment, and deafness to encourage them to provide in-depth training in deaf-blindness. She says that state deaf-blind projects can play a vital role in this regard by making connections with educational institutions in their states.
When asked about important issues to consider when thinking about educating deaf-blind children, Stephanie emphasized the need for open communication between parents and teachers. “It is important for teachers to understand families’ needs and to work with each family to establish a strong link between school and home. Because the world of school and life at home are so different, teachers need to look at the home situation in a functional way and find out what is reasonable for a particular family.” Her advice to parents is to be open and honest. Collaboration and cooperation with educators is essential. She said, “I tell parents to never give up, but to keep chipping away to find the information that meets their child’s needs.”
From her first inspiration in the third grade until she was 41, Stephanie was devoted to a career in deaf-blindness. She said, “I’m still devoted to my career, but I now have another devotion since meeting my true love, getting married, and having a beautiful baby.” She uses many of the teaching techniques that she learned with deaf-blind children with her own son Joseph, now one and a half, particularly communication strategies that make concepts clear. As with deaf-blind children, she watches and tries to see things from his point of view before trying to enter his world.
Stephanie believes that communication is
at the heart of all learning and that to communicate with a deaf-blind child or
any child, you need to relate to the child from his or her own perspective and
stay truly aware of what is happening. She says, “If you stop being
thoughtful and mindful about what you are doing, you can get into a stagnant
situation.” But by careful observation, you can learn so much because,
she says, “Children that I’ve taught and observed are the true
This year NTAC, The National Technical
Assistance Consortium on Children and Youth Who Are Deaf-Blind, sponsored two
annual workshops. One was for parents of children who are deaf-blind. The other
was a topical workshop for state projects serving children and youth who are
deaf-blind. The following reports summarize the 2002 workshops, held this past
August. The parent workshop was on the topic of self-determination and
assistive technology. The topical workshop was about methods for measuring and
reporting implementation and child or youth outcomes as a result of technical
Annual Parent Workshop: A Big Success
Being Self-Determined: What Does It Take? Skills + Knowledge + Attitude + Opportunity. This was the theme of the annual parent workshop sponsored by NTAC and the National Family Association for Deaf-Blind (NFADB) and held in Kansas City, Missouri, August 1-3. There were more than 125 participants, including 70 parents; state deaf-blind project family specialists; representatives from NTAC, NFADB, Helen Keller National Center, DB-LINK, and the Hilton/Perkins Program; and American Sign Language and Spanish interpreters. Thirty-three states, Puerto Rico, and the Pacific Basin were represented.
The group was welcomed by Kat Stremel, NTAC Project Director, Kathy McNulty, NTAC Assistant Project Director, and Ralph Warner, outgoing NFADB President. There were lively discussions throughout the conference. Dr. Brian Abery, from the Institute on Community Integration, University of Minnesota, led participants through a series of discussions and exercises exploring the meaning of self-determination, why it matters, and how it interacts with and affects individual and family values. Jack McCauley, Citywide Evaluation Team Facilitator for Boston Public Schools, explored the link between assistive technology and self-determination. Nancy O’Donnell, Coordinator of Special Projects at the Helen Keller National Center (HKNC) and a DB-LINK information specialist, described DB-LINK resources. Joe McNulty, Executive Director of HKNC and co-chair of the National Deaf-Blind Coalition ably connected national issues to the local level.
A lot of hard work was required in both
the planning and participation phases of this event. It was a wonderful
opportunity for participants who left Kansas City both exhausted and
Topical Workshop: Collecting Service Implementation and Child Outcome and Impact Data
The purpose of the topical workshop held in Atlanta, August 27 and 28, was to help state deaf-blind projects improve the methods they use to evaluate the influence of technical assistance activities on specific outcomes for children and youth who are deaf-blind and to increase the impact of technical assistance services. More than 100 participants representing approximately 50 state projects attended. Presentations and activities included the following:
Participants expressed excitement about
the many innovative evaluation strategies, methods, and data sources that may
be used to demonstrate increased accountability and performance standards for
their state projects. They also expressed a willingness to share many of their
data forms and analysis and reporting procedures, and they requested
DB-LINK’s assistance to collect and disseminate these valuable
Dr. Michael Steer
The Commonwealth of Australia, with a population of approximately 21 million, is a federation of six states, several territories, and a number of dependencies. Its seat of national government is Canberra, a city that, like Washington, DC, is located within its own territory. According to a recent census, 18 percent of Australians have some type of disability, but there are currently no reliable data on the number of Australians who are deafblind. This is primarily because deafblindness has not been perceived as a discrete area of disability in policy negotiations between federal, state, and territory governments. A rough estimate of the number, however, is approximately 1,500 people of all ages.
Australian disability policy is comprised of commonwealth (federal) laws that apply throughout the country as well as separate disability services acts in some states and territories. Because policies have been established at different levels of government, there are often tensions, generally creative, on such issues as resource provision and service boundaries between federal, state, and territory governments. The system is loosely coordinated, and because of this, the provision of comprehensive services to Australians who are deafblind has traditionally been in the “too hard” basket or the “fall between the cracks” category, with predictable results. As a first step to providing a much-needed solution to an abysmal situation, the Australian DeafBlind Council (ADBC) has campaigned, in recent years, for greater political awareness of the problems faced by people who are deafblind.
As part of this campaign, a National Deafblind Forum was held at the Royal Blind Society in Sydney in July 2001. Forty representatives of Australian deafblindness agencies and special interest groups, as well as commonwealth and state public officials attended the event. The department of the Commonwealth Minister for Family and Community Services provided $5,000 towards the cost of organizing the forum.
The purpose of the event was to prepare recommendations to present to the National Disability Advisory Committee, which would then bring them to negotiations that are held periodically between the commonwealth and the states to consider disability policy issues under an agreement called the Commonwealth-States Disability Agreement (CSDA). The CSDA focuses on eight discrete areas of human services provision: accommodation support services, advocacy services, community support services, community access services, employment services, information services, print disability services, and respite services.
The forum evaluated the current state of services for deafblind individuals in each of the Commonwealth-States Disability Agreement service areas. Following is a summary of their findings.
The National Deafblind Forum provided a wonderful opportunity to identify the service and support needs of Australians who are deafblind. Participants made the following formal recommendations, which were conveyed to the National Disability Advisory Committee.
1. That a coherent, combined national/states deafblindness policy be prepared and implemented. This should include the following:
2. That there must be
recognition by Australian governments of the grossly inadequate provision of
services for people with deafblindness in most states and territories. This is
an imbalance that must be rectified.
3. That an independent
advocacy service for people with deafblindness be established because the
uniqueness of deafblindness restricts access to generic advocacy.
4. That a funded national
training program be established to provide training courses for staff employed
in the deafblindness field at certificate, diploma, and tertiary levels and to
include distance education (the embryo of such a concept already exists).
5. That services in
Australia be funded to provide Australia-wide information and advice on
interpreter/communication services be included in CSDA categories and an
adequate level of funding be provided for this service.
7. That service be funded
in all states to enable people with deafblindness to better participate in
8. That policy be
established that people with common forms of communication, where desired, be
grouped together and staff with appropriate communication skills be employed
9. That there should be
wide recognition that people with deafblindness need flexible respite and
accommodation options that cater to their specific requirements.
10. That issues associated with aging and deafblindness (including acquired vision and hearing loss) be the subject of a major government review.
A complete report of the forum has been submitted to the National Disability Advisory Committee. The Australian DeafBlind Council awaits news of its impact.
Editor’s Note: Deaf-Blind Perspectives would be interested in receiving additional article submissions about the state of services for children and adults who are deaf-blind in other countries.
Homemade communication boards or calendar boxes
These examples demonstrate the range of assistive technology
devices. Whether high-tech or low-tech, assistive technology is used for
communication, computer skills, mobility, learning, play, independent living,
and much more. Some you can make yourself. Many others are commercially
available. Because needs and product options change frequently over the course
of a child’s life, it is important to have access to current information.
If you have questions about assistive technology (or any other topic related to
deaf-blindness), contact us at DB-LINK:
There are also a number of other
organizations and agencies that have information about assistive technology for
people who are disabled. The following sources provide information about
specific devices, training, funding resources, and policy issues.
Family Center on Technology and
State Assistive Technology
Policy Information Pipeline -
National Assistive Technology
Research Institute (NATRI)
American Foundation for the
Alliance for Technology Access
Closing The Gap
Jason Corning (Beloit, WI), received the 2002 Wisconsin Council for Exceptional Children “Yes I Can” award for Advocacy/Independent Living. Jason was one of four awardees. The ceremony took place during the Annual Awards Banquet on August 2, 2002. Jason, who is 17, is deafblind and attends the Wisconsin School for the Visually Impaired. He has shown wonderful leadership qualities in advocating not just for himself, but also for other students who are deafblind. Jason is not afraid to stand up for himself. He is independent and has the ability to communicate with people regardless of whether they know sign language or not! He finds a way to communicate. This semester Jason is working on a plan to educate others about deafblindness and thinks that this might be his vocational education plan for the semester or year. He is thinking of a career in law and has perhaps made a start already!
The “Yes, I Can” Award was
established by the Foundation for Exceptional Children in 1981. This award
honors and acknowledges the achievement of children and youth with special
needs, who have demonstrated outstanding personal integrity in overcoming
barriers caused by disabilities as well as public misconceptions of persons
with special needs. The individuals must have increased the public’s
awareness of the abilities and contributions that all persons make to society.
DB-LINK Information Packets
Information Packet for New
“Could You Please Tell My New
Teacher?” A Parent/Teacher Guide to Successful Transitions (2nd
Tips for Working and Socializing with Deaf-Blind People (Revised
National Curriculum for Training
Interpreters Working with People who are Deaf-Blind
Problem Solving Skills
Self-Determination for Children and
Young Adults Who Are Deaf-Blind
Strategies for Inclusion: A Handbook
for Physical Education
Understanding Deafblindness: Issues,
Perspectives, and Strategies.
Understanding Usher Syndrome: An Introduction for School
Texas Symposium on Deafblindness
Annual Conference on Disabilities
PAC RIM 2003
Vision Loss in the 21st Century:
CSUN Annual International
Conference: Technology and Persons with Disabilities
Western Symposium on Rehabilitation
American Association of the
Deaf-Blind (AADB) Conference
Deafblind International Conference
Call for Art Work
Digital Library Project
Including Students with Deafblindness
in Large Scale Assessment Systems
DB Techies E-mail Mailing List
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