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Fall 2004

Volume 12 Issue 1

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Executive Editor
John Reiman
Teaching Research

Managing Editor
Peggy Malloy
Teaching Research

Production Editor
Randy Klumph
Teaching Research


In This Issue

Intervenor

Learning From Children Who Are Deafblind
“Throw Away the Toys”

Personal Perspective - Being More DeafBlind

Research Update

For Your Library

Conferences and Training Opportunities

Announcements


Intervenor Training

Joyce Olson
Coordinator
British Columbia Provincial Outreach Program for Students with Deafblindness

Deafblindness and intervention go hand in hand. Intervention may be called by different names and look different with each person who receives it, but the essential purpose is always the same, to provide individuals who are deafblind with the information they are unable to gather on their own. Deafblindness is an information-gathering disability, and intervention is essential for all people who are deafblind. Intervention equals information.

Sighted-hearing people gather information about the world largely through their senses of vision and hearing. Therefore, we may say that an intervenor acts as the eyes and ears of someone who is deafblind. It sounds simple, but in reality the process of intervention is very complex. An intervenor must constantly read the individual whom he or she supports to determine the information that is needed, the best way to convey it, and whether it has been clearly received. Intervention is a philosophy, not a nice neat program that can be easily taught and applied to every person who is deafblind. Proper training of intervenors is very difficult, and at the same time, absolutely essential.

This article describes the philosophy of and some of the strategies used for intervenor training by the British Columbia Provincial Outreach Program for Students with Deafblindness. The program is funded by the Ministry of Education and is mandated to work with children in their home schools in inclusive settings. In British Columbia there is a small population base spread over large distances, and this has shaped the development of the training program. First, the content of courses is focused on the needs of children and young adults who have been born with combined vision and hearing loss or who have acquired it early in life. Second, in most situations the person supporting the deafblind individual has already been hired, and it is then necessary for him or her to be trained as an intervenor.
Essential aspects of training include providing intervenors with a solid fundamental understanding of the nature of deafblindness through the use of simulations, emphasizing the unique role of intervenors and how it differs from other support roles, teaching the key components of intervention, and making training activities practical and readily applicable.

Using Simulations to Promote Understanding of Deafblindness

It is essential that anyone who supports a person with deafblindness have a keen understanding of the impact that combined vision and hearing loss has on an individual’s ability to learn. There is nothing more powerful or moving than a simulation activity to make this point. No description or instruction about deafblindness can compare to personally experiencing an activity with limited visual and auditory input. It has been my experience that students learning to be intervenors remember the simulation experience above all else. A carefully planned simulation will spark a student’s interest and encourage a better understanding of the challenges that a deafblind person faces each moment of every day. Simulations make students think about what it means to experience the world without the access to accurate information provided by vision and hearing, and they drive home the point that deafblindness is an information-gathering disability.

Many people argue that simulations create a false impression because they are not real and there is no way that a sighted-hearing person will ever be able to experience what the world is like for someone who is deafblind. This is true. My intent in doing simulations is to make people think, not to recreate the experience of someone who lives each day with deafblindness. I start every simulation by telling students that the experience is not real. It does not accurately depict the way that the people they support experience the world. For one thing, each sighted-hearing person brings a wealth of background information to a simulation that someone who has never seen or heard does not have. Another important point is that we are so used to relying on our distance senses to gather information that it comes as a shock to suddenly have those senses taken away. Relying on other ways of gathering information is a natural way of being for deafblind people, but it can be very frightening for a sighted-hearing person involved in a simulation. Simulations are also misleading because we know that we can take the blindfolds off. This tends to make us more patient and willing to put up with what is happening.

Having said all of these things, I still believe that simulations are important in helping us to better understand how to improve our interactions with someone who is deafblind. The simulation is a starting point for further discussion. It is not an experience that can be rushed through and then left for students to make sense of on their own. Discussion following a simulation is as important as the simulation itself. It is during the follow-up discussion that the trainer has an opportunity to correct any misconceptions that may have occurred and to share information about deafblindness and the techniques of intervention in a way that students will remember.

Unique Role of the Intervenor

It is often difficult for people to understand the difference between the role of an intervenor and that of other supportive positions. When training intervenors, it is essential to clearly emphasize the unique role that an intervenor plays in the life of someone who is deafblind. Intervenors may be asked to take on many tasks that are similar to those of a caregiver, a teaching assistant, or an interpreter, but the key difference lies in how they perform these tasks and in how they provide information to a deafblind person.

To stress this point, one training activity I have found to be very beneficial is to choose a seemingly simple task such as changing a diaper and exploring how this task would be performed differently by a caregiver, a teaching assistant, an interpreter, and an intervenor. I have my students do the brainstorming. They usually begin by describing a situation in which the caregiver simply changes the diaper. Then they look at how the same activity would be performed by a teaching assistant. In this scenario, the teaching assistant may give the child a cue for “washroom” and provide a running commentary during the activity. “Okay Sue, we are changing your diaper. There, all done.” The teaching assistant has described the activity to the child, but in the end she has still done it for the child. An ASL interpreter would sign the words to the child while the caregiver or the teaching assistant changed the diaper but would not be involved in the activity itself.

Finally, we explore how this activity would be carried out by an intervenor who understands the child’s visual and auditory needs. The activity would start at the child’s calendar box, and the intervenor would cue the child with voice, sign, and an object cue that they were going to the washroom. Once there, they would explore the cool tiles just inside the door to let the child know where they were. The intervenor would find a way for the child to help turn the light on and give language to describe it, “Lights on. Where’s the cord? Find it. Pull the cord. You turned the lights on.” Together they would gather all the necessary equipment from clean diapers to wipes. The intervenor would find ways to ensure that the child was actively involved in the whole process, from start to finish, in a way that was appropriate for the child. Intervention is about information and about providing children with opportunities to think for themselves and to solve problems whenever possible. A good intervenor understands this and builds these opportunities into every activity.

One of the biggest differences between an intervenor and other support positions lies in the nature of deafblindness itself. An intervenor is the deafblind learner’s link to the world, to information about the environment. The more successful the intervenor is, the more information the learner will want and need. We know an intervenor has been successful when the need for intervention increases rather than decreases as the learner grows and wants more and more information about the world. For all other supportive positions, success is measured by how independent the person becomes and how much support can be removed. It is the exact opposite for someone who is deafblind.

Key Components of Intervention

Deafblind learners have a great deal of difficulty interacting with other people and with their environments because they lack opportunities for anticipation, motivation, communication, and confirmation. When planning for any activity, an intervenor should ask:

• How will I let the learner know what is about to happen, both in the immediate and distant future? (Anticipation)
• What is the goal for the learner? Will I need to provide adaptations? (Motivation)
• How will I communicate with the learner during this activity, and where can I build in opportunities for the learner to be expressive? (Communication)
• How will I let the learner know the effects of his or her actions on the environment when the activity is over, and whether he or she has been successful? (Confirmation)

Anticipation
It is difficult for deafblind learners to anticipate events because they are unable to receive the same cues from the environment that sighted-hearing learners do. The intervenor must give the learner the information that he or she needs in order to understand what will happen in both the immediate and distant future. It is important to remember never to act upon a learner without letting him or her know what is about to take place.

Motivation
Feeling motivation is difficult because deafblind learners do not receive the same feedback from the environment that sighted-hearing people receive. A sighted-hearing learner is motivated to learn how to stack blocks in order to knock them over, to see the blocks go flying, and then to hear them crash as they fall. The only reason a deafblind learner might stack blocks is because he or she is asked to. Often an intervenor is the motivating factor for a child. Children may attempt new activities because they trust their intervenors and want to please them. Eventually the activity itself will become the motivator, but initially intervenors provide motivation through their interactions with the children. For this reason, it is so important that a learner and an intervenor establish a bond, a feeling of trust and mutual respect that serves as a foundation for social and emotional growth (see van Dijk, 1999, for more information).

Communication
Communication is integral to all of the key components. Communication is the key to all aspects of learning and living. It is what intervention is about. Intervenors must remember that it is not enough to tell a child about the world, they must also build in opportunities for the child to be expressive. Self-expression does not come easily to someone who does not clearly see or hear the results of his or her actions. Helping a child develop expressive communication is the ultimate goal for an intervenor. Communication is power, the power to be able to express wants and needs, to understand, and to be understood.

An intervenor should use a variety of techniques to communicate in a way the learner can understand. An intervenor is a learner’s link to the world, to information about the environment. The intervenor must help the learner to simultaneously expand his or her language and experience of the world by labeling new things in the environment. The intervenor should follow the child’s interests, share his or her world, be a communication partner, and remember that success is achieved when the learner wants and needs more information.

Confirmation
It is very difficult for learners with deafblindness to be aware of the results of their actions on the world around them because they are unable to get sufficient feedback through their distance senses. How do learners with deafblindness know when an activity is finished? How do they know if they have been successful? The intervenor must provide this information.

Memory Hooks and Practical Training

When training intervenors, it is useful to use memory hooks—catch phrases or mottos—to help them remember the goals and components of intervention. Present these hooks in a variety of fun and interesting ways until the students can repeat them in their sleep. These make learning fun and practical. Here are some useful memory hooks:

• The Role of Intervention: Intervention = Information.
My colleague, Dr. Linda Mamer, coined this phrase, and it succinctly describes the primary role of an intervenor.

• The Main Goal of Intervention: Always make sure that the learner you support is an active and informed participant in everything you do.
Intervenors provide deafblind people with information that they are unable to gather on their own. (For more information, see Gee, Alwell, Graham, & Goetz, 1994).

• The Intervenor’s Motto: Do With, Not For.
The key to assisting a learner with deafblindness is to provide direct hands-on experience. Deafblind learners do not learn by watching or listening to other people and then imitating them. In order to learn, they must be directly involved in an activity. The importance of doing every activity with rather than for a learner cannot be overemphasized. It sounds simple but can be difficult to put into practice. Doing an activity for someone takes a lot less time, but it does not allow an opportunity to learn.

• The Key Components of Intervention: Anticipation, Motivation, Communication, and Confirmation.
An intervenor should keep the key components in mind at all times to ensure successful intervention.

Intervenor training should be practical and fun. Stories about deafblind children and their intervenors that illustrate a point or reinforce a theory are much easier to remember than long lists of things to do or theories to memorize. Whenever possible, I ask the students to relate the information they have learned during the training to the people with deafblindness whom they know and support. Video clips of other intervenors can be very powerful in demonstrating what intervention is about and how it is done successfully. Role-playing and hands-on activities help students practice new techniques and strategies.

Conclusion

This article has described the philosophy and some of the strategies for intervenor training used by the British Columbia Provincial Outreach Program for Students with Deafblindness. It has emphasized what is at the heart of our training—the importance of helping intervenors to understand and internalize the nature of deafblindness and the role of intervention—but has only touched upon some of the content of the training. For more information regarding the full content of our courses, contact DB-LINK for an overview and outline:
800-438-9376; 800-854-7013 TTY;
dblink@tr.wou.edu.

References

Gee, K., Alwell, M., Graham, N., & Goetz, L. (1994). Inclusive Instructional Design: Facilitating Informed and Active Learning for Individuals Who Are Deaf-Blind in Inclusive Schools. San Francisco: California Research Institute, San Francisco State University.
van Dijk, J. (1999). Development Through Relationships. Entering the Social World. Paper presented at the World Conference on Deafblindness, Lisbon. Available online:
http://www.dblink.org/lib/topics/vandijk3.htm.


Learning From Children Who Are Deafblind
“Throw Away the Toys”

Sharon Barrey Grassick
Coordinator of Deafblind Education, Department of Education, Western Australia and Communication Specialist, Deafblind Specialist Services
SENSES Foundation

Toys can be fun and are often great for educational purposes, but sometimes toys should be left in the cupboard. Many children who are deafblind or have multiple disabilities are not yet able, or perhaps have not been given an opportunity, to choose toys or activities for themselves. If a child were free to choose any toy at all, he or she would probably choose you, the “human toy.”

We often forget the two things that are most important to children, especially to children with sensory impairments—effective human contact and interaction. Is time best spent trying to teach a child to use a particular toy, or is it better spent interacting on a personal, conversational level with a child, using voice and body language, especially the hands, to share experiences and acknowledge the child’s behavior as communication?

There is often too much emphasis on teaching children, particularly those with severe physical disabilities, to use toys by directing and controlling their hands and not enough emphasis on personally interacting with children to achieve the same kinds of skill development. Rather than manipulating a child’s hands to teach him or her how to use a toy, offering ourselves as human toys and making our hands available for the child to control can achieve remarkable conversations (Miles & Riggio, 1999). What better way to learn cause and effect, for example, than by playing a turn-taking game, pausing the activity, and then waiting for the child to indicate that the game should continue? A child may notice, “If I move my leg when Daddy stops swinging me, Daddy starts swinging me again!” “If Mummy stops bouncing me and I move my arms up and down, Mummy starts bouncing me again!”

A great deal of money and time can be spent looking for effective cause and effect toys—toys with bright shiny colors, good contrast, interesting sounds, and stimulating textures. These toys are designed to be motivating, but motivating to whom? Too often, they are far more attractive to an adult than to a child. Consider the following activities as alternatives to commercial cause and effect toys:

1. Instead of pushing a button to cause a toy to pop up, push against Dad’s arm to make his arm pop up (in a specific and predictable pattern every time).
2. Instead of touching a switch to cause a light to go on, touch Mom’s face and watch her eyes and mouth open wide, then shut again. (Brightly colored lipstick and eye shadow can help here.)
3. Instead of touching a toy to cause it to move, touch Mom’s hand to make it move in a particular way. (Brightly colored nail polish may add interest.)

If a child does something, the adult communication partner acknowledges and responds in a particular, meaningful way, keeping it fun and interactive. Depending upon the interests and abilities of an individual child, many variations to the above can be used.

During these activities, be sure to acknowledge when a child’s behavior, such as turning away or diverting the eyes, communicates a need for a break, time for processing, or self-regulation. These cues are often subtle, but it is important to learn to recognize them and understand the needs they express. These types of behaviors can be misinterpreted as noncompliance or disinterest in a person or activity. Just imagine the energy that is required by children who are deafblind, and who often have additional disabilities or complex medical conditions, to try to use what little vision or hearing they may have. The need for breaks must be recognized and respected.

The following example demonstrates the value of human interaction. A young deafblind child, “C,” would not accept her hearing aid. As soon as it was inserted, she would use her excellent fine motor skills to pull it out. Her parents had been using a special toy to motivate her to keep the hearing aid in, but it did not appear to interest C or offer her any auditory stimulation.

Because of the wonderful bond she had with her parents, a different approach was suggested—to use the parents themselves rather than a toy as the motivation for acceptance of the hearing aid. They used the following process:

1. They showed the hearing aid to their daughter and offered it under her hand for her to feel.
2. They used a touch cue (circle around her earlobe) before inserting the aid and made sure it was turned off before putting it in.
3. Immediately after inserting the aid, they turned it on and took turns using their voices to greet C in an interesting singsong way, using her name and their names (e.g., “Helllllllllooooooo CCCC. It’s Mummmy here!”), using a natural intensity but with lots of inflection and intonation.
4. After vocalizing to C, they would stop and give her time to locate the direction the voice was coming from.
5. If she started to move her hand towards the hearing aid in an attempt to remove it, they would gently intercept and redirect her hand using one of their hands under hers. They would divert her attention by offering an interesting game involving her hands, voice, and movement. They avoided physically taking her hand away.

The first time the parents tried this approach, it was maintained for over 10 minutes with lots of smiling from C and without her attempting to remove the hearing aid. When C finally turned her head away, this was acknowledged and interpreted as a need for a break or time to process the information. The hearing aid touch cue was given and the aid quickly turned off and removed before she had the opportunity to remove it herself. C is now wearing her hearing aid most of the day.

Using parents as motivating “human toys” empowers parents. What better way to motivate a child than to have a parent who responds to their child’s actions and behaviors in a positive and meaningful way? The important components are consistency, routine, predictability, understanding, and fun!

During activities, maintain conversations by using fingerplay and by singing songs with specific patterns. Always allow time for the child to initiate contact with you and to respond to your interactions. Significant people may have a special song or rhyme that they sing every time they greet a child, and this can become a type of “song signature.”

Allow the child to have access to your face, especially to your mouth. If a child’s hand or fingers make contact with your face, immediately respond by vocalizing, talking, or singing. “Chin to chin” is another technique that can be very effective. It involves talking or singing with your chin in contact with the child’s chin, allowing the child to feel the vibrations from your vocal chords and breath flow.

In summary, don’t throw away all the toys! There is definitely a time and place for some. However, stop and think before offering a toy. Maybe there is another way. We don’t always have the luxury of one-on-one time to spend with children. When we do, the most valuable activities are those that involve personal interaction, turn-taking, imitation, conversation, and the enjoyment of being connected with another human being.

Reference

Miles, B., & Riggio, M. (Eds.) (1999). Remarkable conversations: A guide to developing meaningful communication with children and young adults who are deafblind. Watertown, MA: Perkins School for the Blind.

A special thank you to Dr. Mike Steer of Renwick College, NSW, Australia, for his help with editing.

Editor’s note: A previous version of this article was published in the ADBC Beacon: The Newletter of the Australian DeafBlind Council, No. 25, February 2004.


Personal Perspective
Being More DeafBlind

John Lee Clark

“Which would you rather be, deaf or blind?” Deaf-blind literature has a long tradition of answering this question, discussing the relative values of hearing versus sight, with sides decisively championed and rarely changed. That there is such a question is significant, reflecting the belief that being deaf and blind is inferior. Which would I rather be? Both. I want to be DeafBlind. I would not change what I am for the world. For me, the joys of DeafBlind experience far surpass the conflicts caused by inaccessibility, ignorance, and bigotry. But responding to that question with “I want to be DeafBlind” should not be so rare. Barriers should not prevent one from full self-identification, from wanting to be as DeafBlind as one can be. Yet my attitude is rare, and people who are deaf-blind are ambivalent about their identity.

Why is this so? There are many factors, but I believe the most important one is that DeafBlind cultural knowledge and power is too fragile and fragmentary. While there are many resources and services for the “rehabilitation” of the deaf-blind, very little of it is cultural in nature. Only a slender slice of the deaf-blind youth population has deaf-blind peers at school. Of all deaf-blind people, only a small percentage is active in the DeafBlind community, or in any community for that matter.

This lack of community involvement affects in varying ways how people tend to cope with deaf-blindness. The classic sequence of a person adjusting to deaf-blindness begins with the discovery or experience of the fact that the person is, or will become, deaf and blind. Then, when enough denial or grief is experienced and then held at bay, the person will likely learn the necessary basic skills of being a functional deaf-blind person. But often the person will still be emotionally at odds with being deaf-blind, thus remaining shy of being fully and happily DeafBlind.

In such a pattern, denial is extremely prolonged, mainly because it is not a single adjustment but a succession of adjustments. This is especially true for people with progressive conditions in which the levels of hearing and sight change across long periods of time. It does not help when deaf-blind individuals are expected, by hearing and sighted society and sometimes even by each other, to cling to whatever is left of their hearing and sight. Such a stretched-out process breeds false self-representation and social withdrawal.

These conditions bewilder and isolate deaf-blind persons, and they make it harder for the DeafBlind community as a whole to have outgoing relationships with other communities. This difficulty means that the community mostly has passive relations where members of other communities come in, often as “professionals in the field.” Because of this imbalance, DeafBlind people are more alien outside of their community than they should be.
The answer to such problems is simple: Increase DeafBlind cultural knowledge and power. Discover more about the as yet uncharted features of DeafBlind culture: accept, practice, and promote them. Expose deaf-blind youth to DeafBlind role models. Encourage mentoring and training of the deaf-blind by the DeafBlind. Support ventures that will make it possible for the DeafBlind to gather more and evolve their culture.

I am living proof of such a solution. Although most of it was accidental for me, the components should be in place for every deaf-blind child, so they can experience the same ease and joy I had in becoming DeafBlind. I enjoyed unlimited access to DeafBlind role models and peers, I learned Braille and orientation and mobility early, and I was never allowed to use my deaf-blindness as an excuse. As a result, I started to listen to ASL tactually not because I had no visual alternatives but because I did not want to miss or misunderstand any information. I began to use my cane not because I could no longer watch the ground before me but because it provided safety, relief, and freedom. I started to read in Braille not because I no longer could read with my eyes but because reading Braille has its own literary rewards. I did not become a great pretender; instead, I became myself.

So I know from personal experience that when more authentic DeafBlind knowledge and power is established, the positive pattern of adjustment will be possible. A healthy DeafBlind culture will first invite a deaf-blind person to emotionally identify herself as DeafBlind, to go through the emotional adjustment but once. The emotionally, and now culturally, DeafBlind person will then value, not resist, DeafBlind skills training and other learning experiences. And when the eyes and ears fail, or already have failed, it will be no loss at all, for the person will be fully and happily DeafBlind.

To a Much Younger Myself
John Lee Clark

How can I blame you for being
sensible and not believing
unless you saw?

A seer of phantoms, you thought
pastures had castles
and clouds, were naked princesses.

But cannot you see how
my fingers are now bared,
keeping me so in touch?

The longhand that signs
my full name eluded you:
I have become blind, you see.

However well your dark irises
cartwheeled, you needed
insight more than sight.

Believe first and then see
how I blame you
for not seeing yourself sooner.

John Lee Clark, a DeafBlind Minnesotan, is the publisher of The Tactile Mind Press. He is an award-winning rhetor and poet and lives in St. Paul with his wife and their three sons. He can be reached by e-mail at ask@johnleeclark.com.


Research Update

Peggy Malloy
Managing Editor

“Research Update” is a regularly recurring feature consisting of announcements related to research in deaf-blindness. Researchers and other interested individuals or agencies may use this column to share information about new, ongoing, or recently completed research projects and new publications. If you have information about a research topic that you would like to include, contact:

Peggy Malloy
malloyp@wou.edu
503-838-8598 (V/TTY)
Teaching Research Institute
Deaf-Blind Perspectives
345 N. Monmouth Ave.
Monmouth, OR 97361

Assessment Project Update

Submitted by Dr. Charity Rowland
Oregon Health and Science University

Validation of Evidence-based Assessment Strategies to Promote Achievement in Children WhoAre Deafblind

Background. Children who are deaf-blind are often labeled “difficult to test,” implying that the fault lies with the children as opposed to the assessment instruments. Assessments developed for children without disabilities or for children with vision impairment, hearing impairment, or developmental disabilities may have some applicability for children who are deaf-blind, but they are unlikely to be completely appropriate without adaptations. Some assessments developed specifically for children who are deaf-blind are not supported by extensive reliability or validity studies. If we question the quality of the assessments conducted on children who are deaf-blind, then we must also question the quality of the educational decisions and the instructional programs that are based upon those assessment efforts. This five-year project was funded to address the problems related to assessment of 2–8 year old children who are deaf-blind.

Goals. The goals of the project are to:

1. identify instruments used to assess children ages 2–8 who are deaf-blind and the purposes for which they are used;
2. conduct validation studies on instruments that are used to generate instructional goals and to monitor student progress;
3. replicate the validation studies in multiple sites;
4. produce final products that summarize the descriptive and outcome data generated by these studies, translating the data into recommendations for the use of specific assessment instruments for children demonstrating specific characteristics.

The assessment instruments to be validated will be ones that address communication/social development and cognitive development. Project results are expected to promote high-quality assessment of children who are deaf-blind, which will generate appropriate educational goals related to communication, social, and cognitive development.

Current status. Surveys about assessment practices for parents and professionals were developed and distributed across the country over the summer with the help of many state deaf-blind projects. The data will be analyzed in the fall, and decisions will be made regarding which assessment instruments will be validated in the remaining years of the project.

Project co-investigators: Oregon Health and Science University (Dr. Charity Rowland, Philip Schweigert), University of Texas at Dallas (Dr. Robert Stillman), California State University-Northridge (Dr. Deborah Chen), St. Lukes-Roosevelt Hospital/Columbia University (Dr. Harvey Mar), and National Family Association for Deaf-Blind.

New Research Articles

Hartshorne, T. S., & Cypher, A. D. (2004). Challenging Behavior in CHARGE Syndrome. Mental Health Aspects of Developmental Disabilities 7(2), 41–52.

The primary purpose of this study was to identify typical behaviors in children with CHARGE Syndrome. One hundred parents completed a Web-based survey that listed 71 behaviors based on diagnostic categories that have been frequently reported anecdotally.

Giangreco, M. F., Edelman, S. W., & Broer, S. M. (2003). Schoolwide Planning to Improve Paraeducator Supports. Exceptional Children 70(1), 63–79.

This study evaluated the use of a process of planning for paraeducator supports. Findings indicated that the process outlined in a 27-page booklet, A Guide to Schoolwide Planning for Paraeducator Supports, assisted school teams in assessing their paraeducator practices, in identifying priorities, and in developing and implementing action plans. The guide is available at http://www.uvm.edu/~cdci/parasupport/guide.html.


books

For Your Library

We Have Contact! (Video or DVD)
Senses Foundation, 2004
We Have Contact! presents a sensitive and respectful approach to interacting effectively with individuals who are deaf-blind and have additional disabilities. Strategies for interacting with children and adults are shown using examples from Individual Communication Guides (ICGs). ICGs are specially produced videos demonstrating a particular deaf-blind individual’s personalized communication system, so that all who have contact with the individual can learn to interact effectively through consistent use of that system, and acknowledge and respond to that person’s communication efforts. Important concepts such as acknowledging behavior as communication are presented by the use of examples of children of a variety of ages and one adult. This 27-minute open-captioned video/DVD is available in both PAL and NTSC formats. Contact Senses Foundation for an order form.
E-mail: reception@senses.asn.au. Web: http://www.senses.asn.au.

Educating Children with Multiple Disabilities: A Collaborative Approach (4th Edition)

Fred P. Orelove, Dick Sobsey, & Rosanne Silberman (Eds.). Baltimore, Paul H. Brookes, 2004
This is a new edition of a widely used textbook for undergraduate and graduate education in special education and related fields. It is also useful for practicing special and general educators. It emphasizes research-based guidance and covers a wide variety of topics such as sensory impairments (including deaf-blindness), developing curriculum and instruction, adaptations to promote participation in inclusive environments, children with special health care and physical management needs, and communication, mealtime, and self-care skills. Publisher’s Web site: www.brookespublishing.com.

Perkins Panda Early Literacy Program
Perkins School for the Blind, 2004

This collection of materials is designed to teach fundamental literacy skills to children with visual impairments and to help parents and other caregivers support children’s literacy development. The kit consists of three interrelated storybooks, activity guides and cassettes; a resource guide; a story box; a Gund plush panda with a backpack that can hold a dual-speed tape player; and carry bags. All the storybooks have visually appealing high-contrast illustration, large print, and braille. Odds Bodkin, a well-established storyteller and songwriter, worked with Perkins to write the books and the stories and songs on the cassettes. The primary audience is families of children with visual impairments, ages birth to 8. In addition, the materials are valuable in program settings, to families with older children with multiple impairments, and to parents and grandparents with visual impairments for use with sighted (grand)children. All components are available as a kit or separately. Phone: 800-972-7671.
E-mail: Perkins.Panda@Perkins.org.
Web: www.perkinspublications.org.


Conferences and Training Opportunities

The following is a list of some upcoming conferences and other training opportunities. For a more extensive list, go to the DB-LINK Web site (http://www.dblink.org) or call DB-LINK. Phone: 800-438-9376. TTY: 800-854-7013.

2004-05 Colorado State Conference on Visual Impairment—Presymbolic Communication and Tangible Symbol Systems: Communication Strategies for Children with Sensory Loss and Significant Support Needs
November 11–13, 2004, Denver, Colorado

This conference includes a 2-day intensive workshop (Saturday and Sunday) on presymbolic communication and tangible symbol systems presented by Philip Schweigert, Oregon Health & Science University. It is open to participants from outside Colorado. There will also be Thursday evening sessions on topics specific to Colorado educators and parents. Contact: Tanni Anthony. Phone: 303-866-6681.
E-mail: anthony_t@cde.state.co.us.

Assessment and Interventions: Case Studies in Deaf-blindness
Online

This web-based distance education course sponsored by the Project for New Mexico Children and Youth Who are Deaf-blind is designed for families, service providers, and educators working with children and youth who are deaf-blind. Through the use of case tutorials, participants will discuss the delivery of appropriate services, alternate assessments, inclusion of students in natural settings, positive behavior supports, and transition issues. The course is offered once a year pending student enrollment. Projected date of next offering is winter 2004/2005. There is a $100.00 course fee for participants from outside of New Mexico.
Phone: 877-614-4051. E-mail: nmdb@salud.unm.edu.
Web: http://cdd.unm.edu/deafblind/training.

Texas Symposium on Deafblindness
February 25–26, 2005, Austin, TX

Top local and national presenters will discuss issues and strategies for educating and parenting young people with deafblindness. There will be opportunities to network and build communities of committed people with an interest in children and youth who are deafblind. Registration information will be available on the Texas School for the Blind and Visually Impaired Web site in early November. Contact: Beth Bible. Web: http://www.tsbvi.edu. Phone: 512-206-9103. E-mail: bethbible@tsbvi.edu.

Helen Keller National Center National Training Team 2005 Seminar Calendar
January 24–28 Professional Development for Employment Training Specialists
May 15–20 Orientation & Mobility Techniques for Deaf-Blind Travelers
July 11–15 Interpreting Techniques for the Deaf-Blind Population
September 12–16 Enhancing Services for Older Adults with Vision & Hearing Loss
October 17–21 Imagine the Possibilities: Person-Centered Approach to Habilitation
November 14–18 Expanding the Arena: The Magic of Technology

Contact: Doris Plansker. Phone: 516-944-8900, Ext. 233. TTY: 516-944-8637. E-mail: ntthknc@aol.com. Web: http://www.hknc.org.

Prematurity, ROP, and Cortical Visual Impairment
Online

This is an online continuing education course sponsored by the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER) Low Vision Rehabilitation Division. The course is available online 24 hours a day 7 days a week. The cost is $25.00 for non-AER members. Further information can be obtained by going to the AER web site at http://www.aerbvi.org and clicking on the area marked Continuing Education.


Announcements

Collaboration Achieves Travel Success (Project CATS)
Project CATS was created to develop strategies and tools to assist educational teams to promote the travel and environmental familiarization skills of students who are deaf-blind, including those with additional disabilities. The project was supported in part by a 4-year (1999-2003) matchmaker grant from the U.S. Department of Education and involved the participation of 5 state deaf-blind projects: Indiana, Illinois, Kansas, Kentucky, and Tennessee. Resources developed by the project include: a 10 phase Web-based online instructional process; a videotape highlighting the use of the online process; a DVD; an evaluation tool, Project CATS: Best Practices Evaluation of Quality Familiarization and Travel Indicators Related to Individualized Education Program (IEP) Objectives and Benchmarks (in press); and Journeys and Destinations, a compilation of student, family, and team success stories (in press).

Use of the Project CATS process will aid teams in the development and implementation of individualized, detailed student travel plans that maximize the use of residual vision and hearing during travel. The ultimate outcome for students will be increased access, opportunities, and participation in their homes, schools, and communities. An article about Project CATS will appear in the Winter 2005 issue of Deaf-Blind Perspectives. To learn more about Project CATS in the meantime, contact:

Karen Goehl, Project Director, Indiana Deafblind Services Project
812-237-2827(V)
812-237-3022 (TTY)
kgoehl@indstate.edu

Lisa Poff, Project Coordinator, Indiana Deafblind Services Project
812-237-7679 (V)
812-237-3022 (TTY)
lpoff@indstate.edu

Joan Houghton, Evaluation Consultant, University of Kansas
785-864-4268 (V)
785-864-3434 (TTY)
joan25@ku.edu
Web: www.indstate.edu/soe/blumberg/Deafblind.html

40th Anniversary of Rubella Epidemic: National Survey
During 1964 and 1965, a worldwide epidemic of rubella resulted in the birth of thousands of babies with congenital rubella syndrome (CRS). Many were born deaf, with cataracts, glaucoma, heart problems, developmental delays, and other medical concerns. In 1991, the Helen Keller National Center (HKNC) published the results of its first survey of the late onset medical manifestations being reported by individuals with CRS. The report provided families and service providers with valuable information that was shared with health care providers. Now, with the 40th anniversary of this epidemic upon us, HKNC is conducting a survey of individuals with CRS to identify any additional late onset medical manifestations. Over 800 surveys have been mailed. If you, or someone you know, has CRS and has not received a survey, you can print one at
http://www.hknc.org/HKNC_Rubella_Survey_2004.htm. For a print copy, send an email with your postal address to Nancy O’Donnell at hkncnod@aol.com or call 516-944-8900, Ext 326.

American Association of the Deaf-Blind (AADB) 2006 Conference
AADB is pleased to announce the long-awaited dates and location for the its next national conference. The Board of Directors approved a bid to host the conference on the beautiful campus of Towson University in Baltimore, Maryland, June 17–23, 2006. Mark your calendar! More details about the conference will be available through AADB’s Web site (http://www.aadb.org) and quarterly publication, The Deaf-Blind American, which is available to AADB members. Thank you for your patience and support for AADB. We look forward to seeing you in 2006!

Community of Practice Focused on Interveners and Paraprofessionals Working with Children and Youth who are Deaf-Blind
This community of practice is open to anyone who is involved or interested in the use of interveners and paraprofessionals for children and youth who are deaf-blind. Based on needs and activities previously identified and initiated by the National Intervener Task Force and others, the identification of recommended practices related to the use of paraprofessionals and interveners has been proposed as the initial focus of activities. Additional topics will be addressed as they emerge. A listserv hosted by the SKI HI Institute is the primary discussion board for the community.

To join the listserv, go to the following Web site:
http://lists.usu.edu/mailman/listinfo/intervener-para. Face-to-face meetings will be scheduled to coincide with naturally occurring opportunities such as the NTAC Annual Project Directors’ Meeting or topical workshops. For more information contact:

Linda Alsop

SKI-HI Institute

lalsop@cc.usu.edu

or

John Killoran
NTAC
killorj@wou.edu



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