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Malloy, Peggy, Ed.Deaf-Blind Perspectives, 2000-2001.Western Oregon State Coll., Monmouth. Teaching Research Div.Office of Special Education and Rehabilitative Services(ED), Washington, DC.2001-00-0050p.; Published three times per year.Deaf-Blind Perspectives, Teaching Research Division, 345 N.Monmouth Ave., Monmouth, OR 97361. Tel: 503-838-8885; Fax:503-838-8150; e-mail: dbp@wou.edu. For full text:http://www.tr.wou.edu/tr/dbp.Collected Works Serials (022)Deaf-Blind Perspectives; v8 n1-3 Fall 2000-Spr 2001MF01/PCO2 Plus Postage.*Deaf Blind; Elementary Secondary Education; *Federal Aid;Federal Programs; Helping Relationship; MultipleDisabilities; Parent Associations; Parent Participation;Peer Relationship; Pupil Personnel Services; ResearchUtilization; *Story Telling; *Student Needs; *TactileStimuli; *Teamwork; Visual Impairments*Ushers Syndrome

These three issues of "Deaf-Blind Perspectives" feature thefollowing articles: (1) "A Group for Students with Usher Syndrome in SouthLouisiana" (Faye Melancon); (2) "Simply Emily," which discusses a buddingfriendship between a girl with deaf-blindness and a peer; (3) "IntervenerUpdate" (Peggy Malloy and Betsy Bixler), which summarizes services providedby a person with special training in deaf-blindness who works one-to-one onan ongoing basis with a child or young person who is deaf-blind; (4) "Team

Structure for a Deaf-Blind Student" (Betsy J. Dunn), which discussessuccessful support teams and the different roles of team members; (5)

"Tactile Learning Strategies for Children Who Are Deaf-Blind: Concerns andConsiderations from Project SALUTE" (Deborah Chen; June Downing, and GloriaRodriguez-Gil), which discusses activities and outcomes of Project SALUTE(Successful Adaptations for Learning To Use Touch Effectively); (6) "ParentsUse a Research Technique To Help Their Children with Cortical VisualImpairments" (Karen Goehl and Georgia Hembrecht); (7) "NTAC Parent and FamilyActivities" (Kathy McNulty); (8) "Seattle Lighthouse for the Blind:Deaf-Blind Program Federal Funding" (Paula Hoffman); and (9) "InteractiveStorytelling for Deaf-Blind Children" (Keith Park), which provides fourexamples of storytelling activities that have been made accessible forchildren who are deaf-blind and have cognitive disabilities. (Some articlescontain references.) (CR)

DEAF-BLIND PERSPECTIVES

VOLUME 8ISSUES 1-3

FALL 2000-SPRING 2001

U.S. DEPARTMENT OF EDUCATIONOffice of Educational Research and Improvement

EDUCATIONAL RESOURCES INFORMATIONCENTER (ERIC)24i's document has been reproduced as

received from the person or organizationoriginating it.

0 Minor changes have been made toimprove reproduction quality.

Points of view or opinions stated in thisdocument do not necessarily representofficial OERI position or policy.

Peggy Malloy, Ed.

2BEST COPY AVAILABLE

EleaVolume 8, Issue 1 Fall 2000

A Group for Students wit Us ler Syndrome in Sout LouisianaFaye Melancon

o begin with, Usher syndrome among the Acadian French people in south Louisiana was something peo-ple knew the "about" of, but not the "what" or "why" of. They knew that generation after generation of chil-dren were struck mysteriously with deafness and eventually with partial-to-full blindness. Itwas somethingthat was dreaded, but had to be endured. Again and again, cousins, aunts, uncles, and sometimes twoor threechildren in a family were found to have the condition, but no one knew what to do, or what to call it.The "what" and "why" of it was that the Acadian parishes of south Louisiana havea far higher percentage ofUsher syndrome than anywhere else in the United States. This extraordinarily high percentage has been docu-mented in several studies (English, 1978; Kloepfer, Laguaite, & McLaurin, 1966; Smith et al., 1992; Walters,Quintero, & Perrigin, 1982;). For example, Kloepfer et al estimated that 30 percent of the deaf population in theparishes of Lafayette, Vermillion, and Acadia had Usher syndrome. This high incidence is a result of severalhundred years of intermarriage among this close-knit ethnic group. Inevitably two individuals, both carryinga recessive gene for Usher syndrome transmitted to them by a common ancestor, marry and have childrenwith this condition.

The Acadians, or Cajuns, as they are called, were originally from Acadia (Nova Scotia) in Canada. In the 1700sthey were expelled from that area by the English. They moved down along the east coast of America, finallysettling along the bayous of several south Louisiana parishes. At first they were not readily accepted by peoplein the area and were somewhat isolated both by language and culture. With time, however, the Cajuns cameinto their own and have won admirers around the world for their music, love of fun, and never-to-be-forgottencuisine.

Many students at the Louisiana School for the Deaf (LSD) come from the Acadian parishes resulting ina highincidence of Usher syndrome at the school. According to Joyce Russo, project director of the Louisiana Ser-vices to Children and Youth with Deafblindness at the Louisiana Department of Education, these parishes in-clude Acadia, Vermillion, Lafayette, St. Martin, Iberia, St. Mary, East Baton Rouge, Livingston, Ascension, andOrleans. Fifteen to twen ercent of children on the Louisiana deaf-blind census for children birth throu h

age 21 are known to have Usher syndrome (Usher 1) ascompared to an average of 3 percent for all other states inthe nation.

In This IssueA Group for Students with Usher Syndromein South Louisiana 1

Note from the Editors 4

Simply Emily 4

Miss(ed) Communication 5

Intervener Update 6

AADB Convention 2000 8

Team Structure for a Deaf-blind Student 9

Meet the NTAC Staff 11

Australia's Fifth National Deaf BlindnessConference 13

For Your Library 14

Conferences 15

New Deaf-Blind Education Listserv® 15

I

When I became the counselor at the Louisiana School forthe Deaf in 1974, I had no idea what Usher syndromewas. I wasn't aware that there was such a problem any-where, much less at our school. I was a new counselorfrom the northern part of the state where there were noreported cases of Usher syndrome.

As time went on, students would offhandedly point outother students to me and hold both hands on either sideof the face to describe them. It reminded me of how blind-ers on a horse would look. When I asked, "What do youmean?" they would answer, "You know, can't see on thesides."

At first I was confused and thought the students werewrong, but I found myself watching the ones they had

pointed out. I decided to bring them into my officeand do some informal testing, such as standing off toone side and waving my hands. It gave megoosebumps when I realized, "Yes! Those kids wereright!"

One of the good things about working at a school forthe deaf is that networking and sharing knowledgeis the norm. As I looked around, unsure of what todo, several people came to my aid. First and fore-most, I was steered in the right direction by the prin-cipal at that time, Jerry Stewart, who had originallybeen at the Florida School for the Deaf and Blind(FSDB). Because some of the Acadian people haddrifted down the east coast to Florida when the Brit-ish evicted sthem from Nova Scotia, there were deafstudents at FSDB who had Usher syndrome.

Next, I got in touch with Steve Barrett, who was theregional representative for the South Central Regionof the Helen Keller National Center. The ball startedrolling then. Steve was very helpful, flying overfrom Dallas several times in the fall of 1976 to helpassess the situation. It was apparent that aschoolwide visual screening program was needed.

Because interest was picking up around the countryregarding the probability of a high incidence ofUsher syndrome in Louisiana, we were able to getthe University of Houston College of Optometry,headed by Dr. James Walters, to come and test ourstudents over the next several years.

Fall 2000

After this, things started happening. New programswere suggested and genetic counselors came fromas far away as New York. We got our own socialworker especially for deaf-blind students, work-shops were conducted to teach parents and childrenabout Usher syndrome, and I started a studentgroup called "The Lucky 10" in 1978. The namecame from "lucky to get out of class." It consisted oftenth, eleventh, and twelfth graders who had Ushersyndrome. By 1981, there were 17 in the group.

The goals of the group included independent livingskills development, learning about resources avail-able for people with limited vision, proper eye care,understanding laws and civic responsibility, deci-sion making, consequences of actions, money man-a gement, development of self-worth, andcommunication skills. We met every two weeks.

Every Usher syndrome student group since thattime has focused on a combination of fun and seri-ousness. We have gone on picnics, swum at nearbyrecreation parks, and taken field trips to LakePonchartrain for the wild rides, the IMAX in NewOrleans, and the Observatory at Louisiana StateUniversity. We've skated, bowled, had cakewalks,exchanged gifts at Christmas, eaten at every restau-rant in town (almost), and had barbecues and craw-fish boils at my house. We saw the movie The Touchabout a man with Usher syndrome who was strug-gling to assert his independence, every year until itwent out of print.

Deaf-Blind PerspectivesVolume 8, Issue 1

Fall 2000

Executive Editor Managing Editor Production EditorJohn Reiman Peggy Malloy Randy KlumphTeaching Research Teaching Research Teaching Research

Consulting EditorsHarry Anderson, Florida School for the Deaf and Blind; Vic Baldwin, Teaching Research; Chigee Cloninger, University of Vermont;Mike Collins, Perkins School for the Blind; June Downing, California State University Northridge; Bud Fredericks, Editor Emeritus;Jay Gense, Oregon Department of Education; Karen Goehl, Indiana Deaf-Blind Project; Lori Goetz, San Francisco State University;Riche Ile Hammett, New Mexico Deaf-Blind Program; Gail Leslie, Teaching Research; Betsy McGinnity, Perkins School for the Blind;Barbara A. B. McLetchie, Boston College; Kathy McNulty, Helen Keller National Center; Nancy O'Donnell, Consultant; Marianne Rig-gio, Perkins School for the Blind; Art Roehrig, Gallaudet University; Rosanne Silberman, Hunter College.

Deaf-Blind Perspectives considers all unsolicited manuscripts and employs a review process to consider whether they will be published.Some manuscripts may receive anonymous peer review. Send both a printed copy and a disk copy (Windows format) to:

Teaching Research Division345 N. Monmouth Ave.Monmouth, OR 97361

Deaf-Blind Perspectives

www.tr.wou.edu/tr/dbp

4

Ph. (503) 838-8391TTY (503) 838-8821Fax (503) 838-8150

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rf-Slind Persp tive

The students planned the activities, took care of thepaperwork needed to get permission for activitiesfrom the school and parents, arranged for transpor-tation, planned meals through the cafeteria, andtook care of other necessary arrangements. Theygained good management and organizational skillsfrom these experiences.

An orientation and mobility trainer became a part ofour group and went with us on outings and activi-ties. The students were not required to have O&Mtraining, but it became natural to participate be-cause the trainer took them to Louisiana State Uni-versity to practice and then followed up with food ata nearby restaurant.

More serious activities included learning about ca-reer centers and schools for deaf-blind people. Wealso produced and participated in a number ofworkshops. The students were responsible for theworkshops. They wrote letters, designed programs,led groups, and, in short, ran the show.

One recent workshop called "Walk in My Shoes,"featured Sister Bernadette Wynne, from the Techni-cal Assistance Center at Helen Keller National Cen-ter in Sands Point, New York. The purpose was toraise the awareness level of other students at theLouisiana School for the Deaf, in order to help thembetter understand Usher syndrome, and stop the oc-casional teasing and bullying of students who hadUsher syndrome.

Another recent workshop, "Open Your Eyes andSee Us!" featured Dr. Bronya Keats from the Depart-ment of Biometry and Genetics at the LouisianaState University Medical Center in New Orleans. Itfocused on the students' feelings that others don'tunderstand the nature of Usher syndrome and whatpeople with Usher syndrome have to endure. HarryAnderson, who has Usher syndrome and is a guid-ance counselor at the Florida School for the Deaf andBlind, guided us through an Usher syndrome simu-lation experience. Each of the participants includingstudents, parents and LSD staff wore ear plugs andeye covers that simulated sight with increasinglysmaller and smaller degrees of central vision, culmi-nating in no vision at all. Consciousness raising wasimmediate. We all expressed feelings of extremefrustration, fear, awkwardness, and sadness. Themost significant result of the workshops was the em-pathy and respect that others developed for thosewho had Usher syndrome.

Another fun activity that we did for several yearswas to communicate with another Usher syndromestudent group in Sweden. The students became penpals. They exchanged letters, e-mail, pictures, andbrochures. Each side bragged about its own country.

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Each group invited the other to come and visit, andin fall of 1999, the Swedish group came to Louisiana.They stayed at the school for a week, and what aweek it was! There were 14 visitors, 9 students and 5adults. We showed them a Cajun good time. Wehope to visit them in the future and several studentsare working on projects to raise money, including awebsite explaining the project and asking for dona-tions.

The name of the student group changed twicethrough the years. In 1992, the group changed to"The Dice 12" because they said they had Usher be-cause of the luck of the draw. In 1999, the groupchanged names again to "The Bravehearts," partlybecause of the movie that was currently showing intheaters and partly because they felt they had bravehearts.

The student group has filled an important need atthe Louisiana School for the Deaf in this area of thecountry where there is such a high incidence ofUsher syndrome. Over the years, the group has pro-vided a wonderful opportunity for students de-velop skills, share experiences and support, andlearn planning and organizational skills. The stu-dents worked hard to make this happen. They alsoprovided an important service by educating othersin the community about Usher syndrome and issuesfaced by people who have Usher syndrome.

4,.Faye Melancon recently retired from the Louisiana School for theDeaf after 27 years. She is currently taking an extended trip acrossthe United States.

ReferencesEnglish, J. (1978). A five-state study of Usher's

syndrome: Incidence & service implications.American Annals of the Deaf, 123 (3), 361-4.

Kloepfer, H. W., Laguaite, J.K. & McLaurin, J.W. (1966).The hereditary syndrome of congenital deafness andretinitis pigmentosa (Usher's syndrome).Laryngoscope, 76 (5), 850-62.

Smith, R.J., Pelias, M.Z., Daiger, S.P., Keats, B.,Kimberling, W., & Hejtmancik, J.F. (1992). Clinicalvariability and genetic heterogeneity within theAcadian Usher population. American Journal ofMedical Genetics, 43 (6), 964-9.

Walters, J.W., Quintero S., & Perrigin, D.M. (1982).Vision: Its assessment in school-age deaf children.American Annals of the Deaf, 127 (4), 418-32.

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Note from the EditorsIn this issue of Deaf-Blind Perspectives we are pleasedto publish both a poem and a short story in additionto a number of other articles. We would like to ex-tend our thanks to all of the writers who have con-tributed articles for this and past issues. We wouldalso like to encourage others to submit articles forpossible publication in the future. Deaf-Blind Per-spectives is a forum for everyone to share theirthoughts, feelings, and expertise. We welcome sub-missions of a variety of types including professionalarticles, reports, practical tips, essays, poems, sto-ries, announcements, and letters. If you have an arti-cle or other item that you would like to submit, or ifyou have questions or comments, please contact:

Peggy MalloyManaging EditorDeaf-Blind PerspectivesTeaching Research345 N. Monmouth Ave.Monmouth, OR 97361

malloyp@wou.eduTel. (503) 838-8598TTY (503) 838-8821Fax (508) 838-8150

The following story was written by Deanna Baxter about hersister Emily. Emily was born deaf-blind. The story describes atrip that their family took from their home in Kansas to Mary-land, where Emily received some medical tests. It describesEmily's evenyday life, how people treat her, and how she dealswith her lifestyle. The story was written 2 years ago whenDeanna was 12 and Emily was 10. Emily has some vision andhearing. She wears glasses and hearing aids. Depending onthe situation, she may use either sign language or speech tocommunicate.

algOIV EN*Deanna Baxter

"Hello," said the doctor. I will be Emily's doctorfor the week. We are going to start by taking a sam-ple of Emily's blood."

"Emily, this man is going to take some of yourblood, " said her mother.

"If you will step this way please."

Emily walked clenching her mother's arm. She wasvery frightened. Emily may be deaf, but she still hasa brain.

Emily was born deaf-blind. Which is not in any waybad. Like they say, "Everyone is different in theirown little way." She is just like anyone else; she can

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Fall 2000

recognize a place if she has been there before. Or,like if there is a place you go quite often. Emily hasbeen to many places like this. She is so terrified ofhospitals, because so many things have been done toher in the past at these places.

"Ok, here we go, we are going to take your bloodnow," said the doctor.

Emily's mother says. "You're going to need a coupleof other doctors to hold her down. Trust me she isvery strong, when it comes to someone doing some-thing to her that she doesn't like." Right about nowEmily is screaming and kicking and trying to getloose. She cannot stand people holding her down,but there is no other way to get her blood taken.

She isn't a very big kid either. She is 10 years old andonly weighs 59 pounds, but when it comes to peoplemessing with her, and she doesn't want them to atthe moment, she becomes very powerful.

"Just a few more minutes, you're doing great Em-ily," said her mother trying to comfort her.

Emily cries, "I want Deanna."

"I'm right here, Emmy. Hang in there," said Emily'sbig sister Deanna.

c/ )i

L to R - Emily, Deanna, and their sister, Jessie (standing).

"Yes, you did it. Great job, Emily," remarked thedoctor.

Emily is not very happy at the moment, but in a fewminutes she cools off, and she is ready to continueher day in a good mood.

"Emily, come on let's go and get you some ice cream.You were so good," Deanna told Emily.

The next day Emily had to go back and they per-formed some other kind of test on her. She contin-

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De f.Blind Persp ctives

ued to go to the doctor for awhile. Just like any otherkid, she hated it with a passion.

On the plane on the way home, Emily and hermother were sitting by a young lady and her littlegirl who was 9 years old. She was so cute. Her namewas Rachel. She really wanted to know a lot aboutEmily and what was wrong with her. She was inter-ested to learn and try different things with her. Shethought it was cool when Emily's mother was sign-ing to her. Rachel told Emily's mother that shewould love to learn how to sign. So Emily's mothershowed Rachel how to do some simple signs.

Later during the flight, Emily and Rachel wereasleep on each other's shoulders. They had becomevery close friends. Their mothers had been talking alot about the two girls. Emily's mom told Rachel'smom that Emily didn't have very many friends. Shesaid that people just don't know what to say. Allthey know how to do is stare. Rachel's motheragreed. "They treat my daughter the exact sameway, but the only difference is that Rachel is a differ-ent color than them. She doesn't really understandwhy very many people don't like her. I have triedand tried to explain. It just doesn't work. I don'tknow if she is just too young to understand or if shedoesn't want to try to understand."

A voice over the intercom interrupted them, "Pleasestay seated until the plane is landed. Thank you forriding with us. I hope you enjoyed your flight."

The two families said their good-byes and said thatthey would keep in touch so that the girls could getto know each other a little more.

"Hey, would you and Rachel like to come down andgo to the fair with my family this year?" asked Em-ily's mother.

"Sure, that would be so much fun!"

The two families parted and they thought abouteach other constantly. They kept in touch and vis-ited each other a lot. Let this be a good lesson to peo-ple who think that just because people lookdifferent, it doesn't mean that they're a bad person.So, just as the golden rule still reads, "Do unto othersas you would like them to do unto you."

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Miss(ed) CommunicationLisa Kozlik

Everyday, strangers pass me bywithout saying a word.They use their voices to speak OF me,

but don't take the time to speak WITH me.I wonder why.

As I walk along the sidewalk, one person saysto another, "Look at her."

they are pointing at me.Suddenly, the voice disappears.Where did it go?I don't know.

While I'm in the mall shopping with friendsanother voice says, "Look at her."

they are talking about me.But who spoke those words?I never found out.

What I cannot see and hear,I experience through touch.Why isn't this good enoughfor those of you who pass me by?

Sign language is my communication with theworld,

just like the voices you use to speak of me.Braille is my "information highway" to theworld,just like the fingers you use to point at me.

The next time you see me,pleasejust don't look at me

get to know me.

About the Author

My name is Lisa Kozlik. I am a 29-year old collegestudent from Wisconsin. I am also deaf-blind. I havelight perception and a severe hearing loss. My blind-ness and hearing impairment were caused by pre-mature birth complications. I have been a dog guideuser for the past 8 years. My current guide is athree-year old yellow lab from Leader Dogs. Fiveyears ago, I sought training at the Center forDeaf-Blind Persons in Milwaukee, Wisconsin. Theirhelp and support have given me the strength to be-lieve in myself and to share this poem with you, thereaders of Deaf-Blind Perspectives.

D I.Blind Persp

lintervener UpdatePeggy Malloy, DB-LINK

Betsy Bixler, NTAC

he role of interveners in the education ofdeaf-blind children is receiving more and more at-tention these days. In February 2000 in San Diego, agroup of individuals interested in exploring thistopic met to discuss issues pertaining to the use ofintervenerswhat intervention is, what the role ofinterveners is, and how they should be trained andsupported.

The meeting was sponsored by Helen Keller Na-tional Center (HKNC) and facilitated by JoeMcNulty, Director of HKNC. Present at the meetingwere several individuals with expertise on the topicof intervention, parents of deaf-blind children, andrepresentatives from HKNC, DB-LINK, NTAC,NFADB, and several state deaf-blind projects. Themeeting focused primarily on the use of intervenersin early intervention and educational settings.

At the meeting, the status of interveners in both theUnited States and Canada was discussed. Much ofthe discussion about what is happening in theUnited States focused on a review of a briefing paperabout interveners written by Linda Alsop, RobbieBlaha, and Eric Kloos (2000) and recently publishedby NTAC. The paper provided an excellent basis fordiscussing the various issues of interest to thegroup. An overview of the Canadian system wasprovided by Linda Mamer.

This article summarizes some of the main points ofthe briefing paper. The paper itself goes into greaterdetail about each of these points as well as other rele-vant issues. A description of intervener services inCanada follows the briefing paper summary.

riefing Paper SummaryWhat is an intervener?

An intervener is a person with special training indeaf-blindness who works one-to-one on an ongo-ing basis with a child or young person who isdeaf-blind. The intervener is a consistent presence inthe child's life and helps the child gain access to theworld. Interveners do not work in isolation, but aremembers of Individualized Family Service Plan(IFSP) or Individualized Education Program (IEP)teams. In school settings they work under the direc-tion of the classroom teacher. In early interventionsettings they may be supervised by an early inter-vention specialist or other service provider.

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What is the role of the intervener?

Fall 2000 c==1

Intervention is a process that provides access to vi-sual and auditory information for a deaf-blind child.The role of the intervener is to facilitate that process.Deaf-blind children have unique needs that can beaddressed by the process of intervention. These in-clude

o Access to environmental information

o Communication

o Social and emotional well-being

Interveners provide clear and consistent access to en-vironmental information by using strategies tailoredto each child's unique capabilities to help them ac-cess information that is usually obtained throughhearing and vision, but is unavailable or incompleteto deaf-blind children. They facilitate communicationby being consistently available to the child to pro-mote the development and use of communicationskills. They serve as a link to help the child commu-nicate with others. Interveners develop a trusting,interactive relationship with the child that promotessocial and emotional well-being. This relationship canhelp motivate the child to be in contact with theworld outside his or her own body.

Interveners also have additional responsibilities asdetermined by the goals of the IFSP or IEP. These in-clude supporting the child during daily routinesand activities and vary depending on the needs ofthe child. For example, an intervener working withan infant in the home may be involved in activitiessuch as dressing and play. Responsibilities of an in-tervener working with an elementary school childmay involve academic work and social activities. Anintervener working with a high school-aged childmay be involved in job coaching. During these timesof additional responsibilities, however, the inter-vener's focus continues to be on promoting the pro-cess of intervention by meeting the child's needs ofaccess to environmental information, communica-tion, and social and emotional well-being.

Does the deaf-blind child become dependent onthe intervener?

Rather than create dependency, the intervener pro-motes the child's independence by facilitating ac-cess to information, providing opportunities thatallow the child to solve problems, make his or herown decisions and choices, and interact fully withother people. The intervener acts as a bridge, not abarrier.

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What type of training and skills do intervenersneed?

Training for interveners should occur at two levels.The first is training that provides basic informationabout deaf-blindness including characteristics of vi-sion and hearing loss, communication, concept de-velopment, and learning. The second level istraining tailored to the specific needs of individualchildren. Child-specific training varies dependingupon characteristics of the child, including age, se-verity of vision and hearing loss, presence of otherdisabilities, communication needs, and the setting(e.g., home, school, or community) in which the in-tervener's services are provided. Because interven-ers work as part of a team to develop and provideservices for deaf-blind children, they should also re-ceive training that will help them acquire teamingand collaboration skills.

How do you know if a child needs an intervener?The need for an intervener for a particular child is al-ways determined by the IFSP or IEP process. Thisfollows a thorough evaluation of the child'sstrengths and needs. An intervener is not automati-cally provided for a child or student who isdeaf-blind, but should be a valid option on a menuof services available to support the implementationof the specially designed instruction of the child'sIFSP or IEP.

Is the word "intervener" spelled with an "er" oran "or"?

The term intervenor originated in Canada where the"or" ending is used. The authors of this briefing pa-per use the same term, but with an "er" ending. Thiswas an outgrowth of practices in Utah where admin-istrators and service providers officially adoptedthe spelling as intervener.

Intervenor Services in CanadaAt the meeting in San Diego, Linda Mamer de-scribed intervenor services for students who aredeaf-blind. In Canada, intervention for people whoare deaf-blind has been a service delivery model formore than 25 years. The Canadian Deafblind andRubella Association (CDBRA) believes that everyperson identified as deaf-blind has the right to re-ceive lifelong intervention services (Mamer &Munroe, 1999). The term "deaf-blind" as used byCDBRA refers to individuals with congenital orearly-acquired deaf-blindness as this is the mainarea of their experience and expertise. McInnes(1999) defines intervention as a process that enables"the deafblind person to establish and maintain

Fall 2000

maximum control over his or her environment at alevel appropriate to physical ability and level offunctioning" (p. 76).

The Canadian Deafblind and Rubella Associationhas developed a working paper of national guide-lines for intervenors. The guidelines promote inter-vention as an appropriate and viable model fordeaf-blind individuals. CDRBA recognizes the sig-nificant impact that an intervenor can have on an in-dividual's learning and experience and emphasizesthat an intervenor enables the individual to accessinformation, communicate, and fully participate inmaking choices (Mamer & Munroe, 1999). Theintervenor should facilitate the deaf-blind individ-ual's needs and desires.

School intervenor services are individualized andavailable for deaf-blind students throughout the ed-ucational years in many parts of Canada. In some ar-eas, intervention services are also availableafter-school, weekends, and summers.

Future ActivitiesCrucial needs identified by participants at the meet-ing in San Diego included development of a list ofcompetencies for interveners and formalized train-ing opportunities on a national level. A subgroup ofthe participants plans to pursue these objectives inthe future. Another subgroup is developing a val-ues /mission statement on the need for interventionservices for deaf-blind children and youth. Partici-pants at the meeting also identified a need for morewidespread information about interveners andhope to promote awareness through publicationslike Deaf-Blind Perspectives.

ReferencesAlsop, L., Blaha, R., & Kloos, E. (2000). The intervener in

early intervention and educational settings forchildren and youth with deafblindness. Monmouth,OR: National Technical Assistance Consortium forChildren and Young Adults who are Deaf-Blind,Teaching Research, Western Oregon University.Available at http:/ /www.tr.wou.edu/NTAC or fromDB-LINK, 800-438-9376, TTY: 800-854-7013,dblink@tr.wou.edu.

McInnes, J. M. (1999). Intervention. In J.M. McInnes(Ed.), A guide to planning and support forindividuals who are deafblind (pp. 75-118). Toronto:University of Toronto Press.

Mamer, L., & Munroe, S. (1999). Developing nationalguidelines for intervenors in Canada: A workingpaper by CDBRA. Brantford, Ontario: CanadianDeafblind and Rubella Association.

De fllind Perspe lives

Attendees at the San Diego Meeting

Joe McNulty - Director, Helen Keller National Cen-ter

Linda Alsop - SKI*HI Institute, Utah State University

Betsy Bixler Area Director, NTAC, Helen KellerNational Center

Robbie Blaha - Education Specialist, TexasDeaf-Blind Project, Texas School for the Blind andVisually Impaired

Cathy Kirscher - Regional Representative, HKNCSouthwestern Regional Office

Eric Kloos - Project Director, Minnesota DeafblindProject

Peggy Malloy - Information Specialist, DB-LINK

Linda Mamer - President, Canadian Deafblind andRubella Association

Carrie Masten - Parent; Family Support Partner,Washington State Services for Children withDeaf-Blindness; Representative, National Family As-sociation for Deafblind

Loretta McGraw - Project Director, Connections Be-yond Sight and Sound

Pearl Veesart - Parent

AAD 1r,

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Convention 2000Roma Vanduzer,

Chairperson, Arizona Association of theDeafblind of Tucson

he American Association of the Deaf-Blind con-vention held in Columbus, Ohio this year from July29th to August 4th was, in my opinion, a tremen-dous success. Considering that more than 1000 peo-ple attended, things went along relatively smoothly.There were numerous well-presented, educationalworkshops. Many provided Braille handouts. Therewere also many enjoyable tours. So many activitieswere offered that it was difficult to choose amongthem. The only problem, from my personal view-point, was that most of the places selected for tourswere so filled with fun things to do and see that Icould have spent a whole week in each place!!

There were two big parties. The first, on Sunday,July 30th, was a celebration of the 25th anniversary

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Fall 2000 ===1

of the first AADB convention held in 1975. Thetheme of the second party, on Wednesday evening,August 2nd, was "Let's Swing into the 21st Cen-tury." Large crowds attended both parties. Every-one danced exuberantly, ate and talked, and madenew friends.

On Sunday, there was an opening ceremony in theafternoon. All who attended enthusiasticallycheered the roll call of the states. Wednesday wasentirely given over to business meetings. The newAADB bylaws were reviewed, discussed, and put toa vote. Late in the afternoon they were unanimouslyaccepted. Considering that a large number of peopleattended the convention, I was surprised and disap-pointed that there were not more people at the meet-ings. Exhibits and crafts displays, however, wereheld at the same time. There was a great deal to see,including interesting product displays, beautifulcrafts, and souvenirs like t-shirts. Despite all of theexcitement, business was very competently takencare of and concluded, and that's what is important.

Overall, it was a great convention. The housing wascomfortable, private, and very clean. The food wasdelicious and the transportation conveniently avail-able at all times. Shuttle buses conveyed people toand from points of interest and other places theyneeded to go.

It is important to keep in mind that one of the majorreasons for the success of the convention was thelarge number of volunteers (support service provid-ers) who gave a whole week of their time, skills, andservices with selfless dedication to assist us withanything at all when we needed help. We extend ourheartfelt thanks to all of them!!

The banquet on the last evening was great. The foodwas excellent and expertly catered. Many awardswere given and many people were recognized fortheir services to AADB. President Harry Andersonwas his usual cheerful and amusing self.

On Friday, August 4th, transportation to the airportwas well organized and efficient. Hey, no one in ourgroup even lost any luggage!!

1 0

D I.Blind Perspective

The following article is reprinted with permission from the March2000 issue of VIEWS, a monthly publication of the Registry of Inter-preters for the Deaf.

Team Structure for a Deaf-blindStudent

Betsy J. Dunn, CSC, California

he successful educational experience of a stu-dent who is deaf-blind is always the result of a teameffort. It would be impossible for any parent,teacher, support staff or administrator to single-handedly ensure the educational/social success of astudent requiring extensive support. The complexand multi-layered educational and social needs,preferences and styles of a deaf-blind student man-date a sophisticated network of support that canonly be provided by a team of professional individ-uals who listen carefully and respond appropriatelyto the deaf-blind student.

The individual needs of a deaf-blind student are asvaried as each student, and yet, the structure of thesupport team needed by this widely varying groupis very similar. A successful support team for adeaf-blind student includes the following individu-als:

0. Student

Parent

O Administrator/Case ManagerPrimary Support Teacher

0. Interpreters

.0 Vision Teacher

* Mobility Instructor

Team success requires that each team member havea clear understanding of their own role, the role ofother team members, and how each member inter-acts and supports the other. Team members must ac-tively share information and seek assistance fromothers. Equally important, they must be willing andable to put the needs of the student ahead of any per-sonal issues or agendas. On-going team success re-quires constant communication, respect andcompetency in each and every role.

Role IDefinifionsThe first and most important member of the team isthe student. The student's individual needs, prefer-ences, and styles as they relate to communicationand education must be addressed and accommo-dated by the support team's efforts. Individual pro-

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Fall 2000 1==

files of interest, potential and skills provide neces-sary direction for the student's educational goals.As the student matures and is able to participate inhis or her own IEP with increasing awareness andresponsibility, the success of the support team willbe reflected in the educational ownership andself-awareness of the student.

The parent is the driving force of his/her child's ed-ucational experience. Without strong advocacyfrom the parent, it is too easy for a deaf-blind stu-dent to be under-served or not served at all. The par-ent provides essential input and direction in the IEP.Some educators might prefer the parent simply rub-ber stamp decisions made by school personnel. This,however, is not the most effective relationship forstudent success. The parent is able to bring a wealthof background information to school personneland through this information, the school staff canbetter understand and guide the student to aca-demic/social success. Even when a full ensemble ofprofessionals has been brought together to provideeducational support, the parent still continues to bea vital team member. The need for parent input anddirection is never-ending.

The administrator or case manager acts as theschool site coordinator for the services and person-nel providing support to the deaf-blind student.From the student's perspective, the administra-tor/case manager may seem like a "silent partner"on the team. Although the case manager may not bethe most visible team member, experience hasproven that the case manager's support, guidanceand administrative skills interfacing with the schooldistrict is a vital element necessary for the team'ssuccess. A good administrator can listen and learnabout the issues of deaf-blindness and effectivelyoversee and coordinate these services.

The support team "teacher" may be called many dif-ferent names: primary teacher, primary supportteacher, teacher of the deaf, point person, or specialeducation teacher. Whatever the name, this"teacher" is a pivotal team member who not onlyprovides 1:1 teaching and tutoring, but also inter-faces and coordinates with the general educationteachers, interpreters, parents, and administration.Additionally, the primary support teacher mustmodify, adapt, and create materials necessary forthe student to participate, understand and masterthe information presented in the general educationand during 1:1 instruction periods. The teachermust work closely with the student and parent to en-sure that the educational direction and needs of thestudent are represented in the IEP document.

To the general school population, the interpreterprovides the most visible support to the deaf-blind

11

D IBruld Per pe twes

student; it is also a complicated and often misunder-stood position on the team. The school district em-ployee title of "interpreter" is generally inadequateand does not represent the variety of duties requiredby this position. The interpreter's daily responsibili-ties are a blur of interpreter, tutor, social facilitator,and Service Support Provider (SSP) duties.

Functioning as the "interpreter," this team memberfacilitates and creates the information and commu-nication bridge necessary for social opportunitiesand educational experiences to occur. Deaf-blind in-terpreting requires specific knowledge and skills be-yond those necessary for sign languageinterpreting. The interpreter literally brings theworld to the student and the interpreter's ability toclearly and accurately convey visual and auditoryinformation as well as social nuances will deter-mine the level to which the student can rise. Sensi-tivity, awareness, and training in deaf-blind issuesand needs are required for the interpreter to success-fully support the deaf-blind student. The individualneeds, desires, and preferences of the student mustbe respected and accepted during interpreting situ-ations.

Educational interpreters sometimes find them-selves in the dual job description of interpreter/tu-tor. This blurring of roles can be confusing not onlyto the student, but also to the interpreter and generaleducation teacher. Clear definition and distinctionare necessary for the successful blending of theseroles.

While interpreting in a social setting, the interpreterfor a deaf-blind student is called upon to "facilitate"social interaction with the general school popula-tion. This is an appropriate and necessary role to em-brace, and yet it adds additional confusion of theinterpreter's roles and responsibilities. Continuedprofessional development and growth are vital forthe development of skills necessary to discern whenand how to function as a facilitator while also main-taining respect and regard for the deaf-blind stu-dent's social/emotional development and abilities.

In addition to functioning as interpreter, tutor, andsocial facilitator, the interpreter for a deaf-blind stu-dent also serves the student as a Service SupportProvider (SSP). As an SSP, the interpreter will act asthe deaf-blind student's guide, lunch partner, orcompanion. The student's personal needs or prefer-ences for support will determine how and when theinterpreter functions as an SSP.

Deaf-blind interpreters work under unusually closeand intimate conditions with the deaf-blind student.This unusually close working relationship as wellas the intensity, which often accompanies it is im-

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Fall 2000 ===

portant to acknowledge and support. Too often, in-terpreters reach "burn-out" because these issueshave not been anticipated, addressed, or supported.For this reason, it is preferable for the deaf-blind stu-dent to receive alternating services from at least 2 in-terpreters throughout the day.

The Braille and Mobility Instructors both providespecific training and expertise for the student andother team members. Their input regarding specificskills and strategies related to deaf-blindness arebeneficial to all team members.

Communication of Role Definitions

Various methods may be used to define, establishand communicate the role of each team memberwithin the team as well as to the general educators orother persons who are part of the larger support net-work. The roles and responsibilities of team mem-bers may be introduced to the general educationteachers through an orientation meeting, whichtakes place before the beginning of each school se-mester.

During an orientation meeting, or in a 1: 1 setting, aone to two-page "fact" sheet can be utilized to pro-vide information addressing these questions/top-ics:

* Who is the student? What does s/he like to do?

* Functional aspects of vision and hearing: Howmuch can s/he see or hear?

* Types of educational materials used: does s/heread Braille or print or both?

Communication options in the classroom: signlanguage through the interpreter, writing, orgestures/body language.

* Define the interpreter's role, responsibilities, andduties: Visual and auditory information is re-layed and tutoring assistance is provided as nec-essary. Classroom behavior management is theresponsibility of the teacher.

* Identify special space/environmental consider-ations: What seating arrangement is appropri-ate? Use of the over-head projector and movies.

* Describe how the student will complete class as-signments: describe the 1:1 study support s/hereceives.

* Indicate who and how the student will begraded.

* Provide a list of the names and phone numbers ofall team members.

Role-playing may also be successfully employedduring a teacher orientation as a means to demon-

12

e hIlling Persp titres

strate and clarify the role of the interpreter/tutor inthe classroom setting.

Due to the fact that team members will naturallychange over the years, and substitute teachers and in-terpreters will also require orientation information, abasic interpreting/teaching guide of practical infor-mation which addresses deaf-blind interpreting ingeneral, and the individual student's needs specifi-cally, should be disseminated to facilitate the smoothtransition of new or substitute team members.

Topics addressed in the interpreter/instructor guide-lines for a deaf-blind student may include:

o Interpreter dress: Clothing which contrasts theskin tone of the instructor/interpreter. If a particu-lar color is preferred, this should be clearly stated.

o Getting started: What to do when first meetingwith the deaf-blind student.

o Sign Language: Preferences of the student.

o Lighting: Optimal conditions and alternatives.

o Interpreting: Guidelines, techniques, and strate-gies for deaf-blind interpreting; defining the ex-panded deaf-blind interpreter's role as an "SSP"for the student; as well as identifying the lan-guage and communication preferences of thestudent.

o Mobility: Strategies, techniques, and studentpreferences.

o Social Etiquette: Student preferences /needs;general deaf-blind courtesies.

Technical support and assistance available throughvarious national organizations, and schools serve asinvaluable resources to the professional develop-ment and role definition of the student's supportteam. Team members should be encouraged andchallenged to define, communicate, and nurturetheir professional skills so that they may better pro-vide the support structure needed for student's suc-cess.

Some parents may dream of finding an "AnneSullivan" for their deaf-blind child; a person whomight magically bring the "world" to their child.However, the strength and knowledge of a teamprovides a more powerful and dynamic educationalexperience than any single parent or teacher couldever dream of giving an individual who isdeaf-blind.

[Copyright 2000, VIEWS, the Registry of Interpreters forthe Deaf]

1/

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Fall 2000

Meet t NTAC Staff

NTAC, the National Technical Assistance Con-sortium for Children and Young Adults who areDeaf-Blind provides technical assistance to familiesand agencies throughout the United States. NTAC'smission is to provide assistance that enables peopleand agencies in each state to work together to im-prove the quality of early intervention and educa-tional services provided to children and youngadults who are deaf-blind. NTAC's ultimate goal isto assist states to improve outcomes for deaf-blindstudents to meet challenging standards and bebetter prepared for adult life. Technical assistanceactivities include setting up training opportunitiesfor families and service providers, consultations,and facilitating collaboration among agencies andorganizations within a state.

Technical assistance activities are planned througheach state's deaf-blind project and are provided toagencies and organizations that provide services forchildren and youth who are deaf-blind (birth to 28years). These include state deaf-blind projects, fam-ily or consumer organizations, and state education,early intervention, and adult service agencies.

NTAC combines the resources and expertise of twoorganizations, Teaching Research at Western Ore-gon University and the Helen Keller National Cen-ter (HKNC) in New York. NTAC is funded by agrant from the U.S. Department of Education toTeaching Research.

Staff are located in four regions. Each office pro-vides technical assistance for the states in their re-gion.

Region 1 (AK, AZ, CA, CO, ID, HI, MT, NV, NM,OR, Pacific Basin, UT, WA, WY), Teaching Research,Monmouth, OR

Region 2 (IA, IL, IN, KS, MI, MN, MO, NE, ND, SD,OH, WI), Shawnee, Mission, KS

Region 3 (AL, AR, FL, GA, KY, LA, MS, NC, OK,Puerto Rico, SC, TN, TX, Virgin Islands), Atlanta,GA

Region 4 (CT, DE, DC, MD, MA, ME, NH, NJ, NY,PA, RI, VA, VT, WV), HKNC, Sands Point, NY

%

D trBlind Persp fives

Administrative Staff

Administrative staff are located in both the Oregonand New York offices. The principal investigators ofthe NTAC grant are Joe McNulty, Director of HelenKeller National Center and Vic Baldwin, former Di-rector of Teaching Research.

Kat Stremel (Oregon), the Director of NTAC has amaster's degree in speech pathology and audiology.She has written and directed 15 federal grants andhas served as a federal grant reviewer. She has alsoserved on disability task forces, the Mississippi Par-ent Training and Information Board, and as a gover-nor-appointed chair of the Mississippi InteragencyCoordinating Council. Kat is an expert in the area ofcommunication development and has written nu-merous publications and taught extensively on thistopic.

Kathy McNulty (New York) is NTAC's Associate Di-rector and the Area Director for Regions 3 and 4.Kathy has a master's degree in education andworked as a classroom teacher for 7 years. She beganworking at HKNC in 1986 on the HKNC-TAC (Tech-nical Assistance Center) grant. Her initial responsi-bilities included a parent survey project andcoordination of a national workshop on advocacyfor parents of deaf-blind children. She later becamea program associate, providing technical assistanceto states in the area of transition, and then assistantproject director.

Betsy Bixler (New York), Area Director for Regions 1and 2, has a master's degree in education fromBoston College, with a focus on the education ofdeaf-blind and multihandicapped students. Prior tojoining the NTAC staff she was the program admin-istrator for Overbrook Friedlander Programs, a pri-vate nonprofit agency that provided group home,community living arrangements and vocational andcommunity-based programs for persons with de-v e 1 op mental disabilities and blindness ordeaf-blindness.

John Killoran (Oregon), NTAC's evaluation andearly childhood specialist, has a master's degree ineducation and over 20 years of professional experi-ence in public and higher education. John previ-ously worked as an early intervention coordinatorin both Oregon and Utah and was the co-director ofthe Utah Project for Children with Dual Sensory Im-pairments prior to moving to Oregon. His teachingexperiences range from preschool to graduateschool and he has directed numerous federal per-sonnel preparation and model demonstration pro-jects.

Nancy Flax (New York) serves as liaison betweenNTAC and the HKNC regional representatives.

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Fall 2000

Technical Assistance Specialists

Technical assistance specialists in the four regionaloffices each work directly with approximately sixstates to coordinate assistance.

In the Oregon office are Paddi Davies and ShawnBarnard Paddi has a degree in business administra-tion and international studies. Her training indeaf-blindness has come through many years ofsummer institutes and workshops, as well asself-study. She has worked in the field of deaf-blind-ness for 9 years. Paddi is currently enrolled in a dis-tance learning design and development certificateprogram through the University of Washington.Shawn has undergraduate degrees in sign languageinterpreting and psychology and a master's degreein rehabilitation counseling with the deaf. She previ-ously worked as a mental health counselor with deafhigh school aged students and as a living, voca-tional, and interpersonal skills teacher with youngdeaf-blind adults.

In the New York office are Susie Morgan and KristenLayton. Susie has a master's degree in rehabilitationcounseling for the deaf from Gallaudet University.She is also an RID certified interpreter and has de-veloped materials on tactile sign language andworked as an interpreter for individuals who aredeaf and deaf-blind. She previously worked atHKNC as a rehabilitation counselor, placement spe-cialist, and counselor for the summer teen program.Kristen has a bachelor's degree in elementary edu-cation and a master's degree in special educationwith a concentration in severe disabilities, includingdeaf-blindness, from Hunter College. She has previ-ously worked both as a preschool teacher in Califor-nia and as an instructor of independent living skillsat HKNC.

John Eisenberg in the Georgia office, also has a mas-ter's degree in special education with a focus on se-vere disabilities and deaf-blindness from HunterCollege. Before coming to NTAC he worked as ateacher for young adults who are deaf-blind, as ateacher for young adults with behavior disordersand severe disabilities, and as a vocational coordi-nator for school-to-work programs including transi-tion planning.

In the Kansas office are Jamie McNamara and Jon Har-ding. Jamie, who is deaf-blind, has a master's degreein social work. Prior to coming to NTAC she workedwith deaf children in an inclusive school setting andwith deaf adults in a community living setting. Shehas also worked closely with local deaf-blind com-munities and is on the board of directors of theAmerican Association of the Deaf-Blind. Jon has abachelor's degree in social studies and a master's

14

De I.Blind Perspe tines

degree in learning disabilities. He previouslyworked for 4 years in the field of assistive technol-ogy on a project that provided information andtraining to local school district personnel in Mis-souri.

Support Staff

Bernie Samples has worked at Teaching Research inOregon for more than 30 years on a wide variety ofprojects. At NTAC she is responsible for much of thecoordination of and arrangements for the annualProject Director's Meeting as well as other topicalworkshops. Her other responsibilities at TeachingResearch include assisting with preparation of grantproposals.

Robbin Hembree, in the Oregon office, is NTAC'sDeaf-Blind Census Coordinator and Data Specialist.She is currently working on .a Master of Educationdegree with a focus in information technology. Shehas managed the National Deaf-Blind Census forthe past 10 years. She maintains all project evalua-tion data and performs analysis procedures on thecensus and project evaluation data.

Randy Klumph and Peggy Malloy also work in the Or-egon office. Randy provides computer and technicalsupport to staff in all four regions. He has a bache-lor's degree in psychology and brings a unique com-bination of skills to the project including computerexpertise, social service experience, desktop pub-lishing, and technical illustration. Peggy providesassistance with NTAC's publication projects. She isa librarian and in the past has also worked as awriter and as a registered nurse. Both Randy andPeggy also work for DB-LINK.

Additional support is provided by Kathy Michaelsand Nancy Ganson. Kathy is the administrative assis-tant in the New York office. She has a wide variety ofresponsibilities including assisting with budgetingand accounting details and materials preparation.She has worked at HKNC for 10 years. Nancy is a re-search assistant in the Oregon office and NTAC'stravel coordinator. She has a bachelor's degree intheater and communications and, prior to coming toNTAC, worked in the travel industry. Additionalpart-time clerical support is provided by MaryMcInerney in Kansas and Tammy Halloran in Geor-gia.

4.4.4.++

Fall 2000

Australia's Fift -a NationalIDeafblinctness Conference

Dr. Michael SteerRenwick College,

Royal Institute for Deaf & Blind Children

Sharon Barrey GrassickWestern Australian Deafblind Association

he Australian National Deafblind Conference,Deafblindness: Keeping in touch beyond 2000, was heldat the Esplanade Hotel in Fremantle (one of theworld's most remote cities) April 7-10, 2000. It washosted by the Western Australian Deafblind Associ-ation (WADBA). The event drew a record number ofparticipants, including 22 delegates who have vary-ing degrees of deafblindness. New Zealand wasstrongly represented.

Provision of best possible access for all participantswas a priority of the conference organizers. Therewere 24 professional interpreters available duringall formal sessions. Support was also provided fordeafblind delegates during breaks and social activi-ties. These arrangements involved a massive under-taking for WADBA, a tiny organization with theequivalent of only 1.4 full-time staff.

Each participant who required interpreting wasmatched with two interpreters who supported eachother throughout the event. Communication meth-o ds used included two-handed tactilefingerspelling, short-cut signs, Braille, and Auslanread through close vision, tracking or tactile sign-ing. Six volunteer typists rotated, to make presenta-tions accessible to delegates using Telebrailles orcomputer monitors with enlarged print.

Intensive Volunteer Support Provider (VSP) and in-terpreter training for the event commenced in thepreceding November. There were 22 VSPs, eachavailable throughout the conference to support thespecific communication and guiding requirementsof the individuals with whom they had been care-fully matched.

The conference began with a "Welcome CocktailParty" on the first evening, sponsored by the Na-tional Relay Service and was formally opened thenext morning by the Hon. Paul Omedei, WesternAustralian Minister for Disabilities.

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VDe liBlind Perspectives

Professional ProgramKeynote speakers included Graham Hicks, ofSENSE in the United Kingdom, who spoke on indi-viduality and the need for appropriate supports andservices. Dr. George Williams from New SouthWales addressed the importance of what we say andhow we say it, with regard to the skills involved incommunicating information about a child's condi-tion to parents.

An array of concurrent sessions on such topics asemployment, technical devices, communication,and education was offered in the afternoons. Theseincluded a session on cortical vision impairment byCaroline Palmer of Flinders University in SouthAustralia, a session by Dr. Rod Beattie of RenwickCollege in Sydney on action planning, and a work-shop on equipment for vision stimulation byAynsley Kingstone from the Western Australian Vi-sion Impairment Service.

Six papers were presented by deaf-blind delegates,including a session on The Link, an exciting com-puter access initiative in the state of Victoria. IreneMcMinn, President of the Australian Deaf BlindCouncil presented an update on the work of theWorld Federation of the Deafblind.

Copies of all conference papers are available on theAustralian Deaf Blind Council's web site athttp:/ /internex.net.au/-dba

Other EventsSunday was designated a Social Day, starting withbrunch at the poolside. Other social events includeda jazz cruise on a paddle steamer and a wine andcheese cruise on one of eight luxury power launchesor sailing yachts, organized through the RoyalFreshwater Bay Yacht Club. All skippers offeredtheir boats and time without cost to the organizers.

It was unanimously agreed that the event was Aus-tralia's best-ever deafblindness conference. NewSouth Wales will host the 6th National DeafblindConference in Sydney in 2002.

An open-captioned video of conference highlightsand impressions is available at a nominal chargefrom:Western Australian Deafblind AssociationPO Box 14MAYLANDS Western Australia 6931Tel. (08) 9272 1122TTY (08) 9370 3524Fax (08) 9271 3129wadba@nw.com.au

14

Fall 2000

For Your LibraryCommunication at Home and in the Community:Helpful Strategies & Suggestions From Parents &Families With a Child Who is Deaf-Blind. The Na-tional Technical Assistance Consortium for Children andYoung Adults Who Are Deaf-Blind (NTAC). This bookletcontains suggestions from parents and family mem-bers who attended the 1999 National Parent Workshopsponsored by NTAC and the National Family Associa-tion for Deaf-Blind (NFADB). Available on the web(http://tr.wou.edu/ntac) or by contacting:NTAC-HKNC, 111 Middle Neck Rd., Sands Point, NY11050, Ph: 516.944.8900 x311, TTY: 516.883.9059,Email: ntac@wou.edu

Creative Constructions: Technologies That MakeAdaptive Design Accessible, Affordable, Inclusiveand Fun. Campbell, M. & Truesdell, A. Cambridge, MA:Creative Constructions, 2000. This book presents ideasand plans for simple, custom-made assistive technol-ogy items. Includes concrete suggestions, photos, andcase studies. Available from Creative Constructions,659 Green Street, Cambridge, MA 02139; 617.972.7520.Email: mollycampbell@mediaone.net

A Guide to the Individualized Education Program.Office of Special Education and Rehabilitative Services,U.S. Department of Education, 2000. This guide in-cludes information about how to develop an indi-vidualized education program (IEP). Topicsinclude: IEP contents, IEP team members, and howto write and implement the IEP. It also describes thespecial education process under the Individualswith Disabilities Act (IDEA). Available on the webwww.ed.gov / offices /OSERS /OSEP /IEP Guide) orfrom ED Pubs, Editorial Publications Center, U.S.Department of Education, P.O. Box 1398, Jessup,MD 20794-1398; Tel. 877 4-ED-PUBS; TTY877.576.7734; Fax 301.470.1244. Available in alterna-tive formats.

Promoting Learning Through Active Interaction:A Guide to Early Communication with YoungChildren Who Have Multiple Disabilities. Klein,M. D., Chen, D. & Haney, M. Baltimore: Paul H. BrookesPublishing Co., 2000. The Promoting LearningThrough Active Interaction (PLAI) curriculum isdesigned primarily for infants, preschoolers, andyoung children with severe or multiple disabilities(including deaf-blindness) who are not yet initiatingsymbolic communication and who have a limited

1.6

De 1.81ind Perspectives

repertoire of communicative behavior. It can also beused with older children who have not yet devel-oped intentional communication. The curriculumconsists of a Caregiver Interview to identify a child'scurrent communication abilities and 5 modules. Italso provides handouts and recording sheets in bothEnglish and Spanish. A video (Promoting LearningThrough Active Interaction: An Instructional Video) isalso available in English and Spanish. Availablefrom: Paul H. Brookes, P.O. Box 10624, Baltimore,MD 21285-0624; 800.638.3775;http:/ /www.brookespublishing.com

Conferences

World Congress & Exposition on DisabilitiesNovember 10-12, 2000

Atlanta, Georgia

Contact:210 Route 4 East, Suite 403Paramus, NJ 07652Tel. 877.923.3976Fax 201.226.1236wcdinfo@wcdexpo.comhttp:/ /www.wcdexpo.com

Zero to Three 15th National Training InstituteBecause Babies Are Our Future

December 1-3, 2000Washington, DC

Contact:Meeting Management Services1201 New Jersey Ave., NWWashington, DC 20001Tel. 202.271.1296http:/ /www.zerotothree.org

2000 Annual TASH ConferenceMoving the Edge

December 6-9, 2000Miami Beach, Florida

Contact:Kelly Nelson29 W. Susquehanna Ave., Suite 210Baltimore, MD 21204Tel. 410.828.8274 ext. 105Fax 410.828.6706knelson@tash.orghttp:/ /www.tash.org/2000Conference

15

Fall 2000

5TH Deafblind International EuropeanConference On Deafblindness

Self Determination: A Life Long ProcessJuly 24-29, 2001

Noordwijkerhout, The NetherlandsContact:Anneke BalderStichting 5th DbI European Conference onDeafblindnessP.O. Box 222, 3500 AE UTRECHTThe NetherlandsTel. +31 30 2769970Fax +31 30 2712892sdg@wxs.nlhttp:/ /www.deafblindinternational.org

+:*:++++

New Deaf-Clind EducafionListserv®

eaching Research, NTAC and DBLINK are theco-sponsors of a new Listserv on the topic ofDeaf-Blind Education. The idea for this list devel-oped from inquiries from participants at several dif-ferent conferences, including the DeafblindInternational Conference in Sydney, Australia. Con-ference members were looking for a a place to dis-cuss the latest information on best practices, newideas, problem solving, and other issues. The list isopen to all persons interested in deaf-blind educa-tion.

To subscribe to the Deaf-Blind Education Listserv(DBED-L) send the following command as an e-mailmessage

SUBSCRIBE DBED-L firstname lastname

Leave subject line blank if possible and do not in-clude a signature. Send the e-mail to

LISTSERV@TR.WOU.EDU

You will then receive an e-mail asking you to con-firm your subscription request. Save that messageuntil your subscription is confirmed. If you have anyproblems, contact Randy Klumph atdb ed-l-reques t@tr .wou.edu.

17

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All issues of Deaf-Blind Perspectives are available on the Internet at www.tr.wou.edultrldbp 0800

Deaf-Blind Perspectives is a free publication, published three times a year by the Teaching Research Division of Western Oregon University. The po-sitions expressed in this newsletter are those of the author(s) and do not necessarily reflect the position of the Teaching Research Divisionor theU.S. Department of Education. DB-LINK and NTAC contribute staff and resources for content, editing, and publication.

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Volume 8, Issue 2 Winter 2000/2001

Tactiie Learning Strategies for Children who are Deaf-Iflind:Concerns and Considerations from Project SALUTIE

Deborah Chen, Ph.D.June Downing, Ph.D.

Gloria Rodriguez-Gil, M.Ed.California State University, Northridge

'Without reliable access to clear visual and auditory information, children who are deaf-blind must rely onadditional modes of learning, such as learning through touch. For many of these children, touch is a primarymode of communication. Although a variety of tactile strategies are frequently used with children who aredeaf-blind, there is little research-based evidence that validates their use. Identifying effective tactile strate-gies for deaf-blind children who also have cognitive or physical disabilities is particularly challenging. ProjectSALUTE (Successful Adaptations for Learning to Use Touch Effectively), a federally funded model demon-stration project, is addressing the need for a more informed approach to the use of these methods. The goal ofthe project is to identify, develop, and validate tactile instructional strategies for children who have hearingloss and no functional vision, plus additional cognitive and physical disabilities.

This article discus'ses key issues and concerns regarding the use of tactile strategies based on Project SALUTE'sinitial activitiesa review of publications and input from focus groups. This preliminary examination hasidentified that there are large gaps in what is known about tactile methods and has revealed more questionsthan answers regarding the use of touch with children who are deaf-blind. For example, what are the most ef-fective ways to present information in this mode? How should children be taught to use their hands for explo-ration, learning, and communication? What adaptations are needed for the child who requires tactileinformation, but has severe physical disabilities and cannot easily control hand movements?

The following literature review and focus group findings serve as a basis for the work of the remaining threeyears of Project SALUTE. We hope that it also stimulates discussion and sharing of ideas and resources amongfamilies and professionals who are interested in this topic and encourages those who are using tactile strate-gies to analyze their use in a systematic way.

Literature ReviewWe identified a number of tactile strategies commonly used with children who are deaf-blind by reviewingpublications in the areas of visual impairment and blindness, deaf-blindness, occupational therapy, develop-mental and biological psychology, and related topics. For the most part, these strategies are not based on re-

search, but rather on the experiences or opinions of theauthors or on anecdotal reports. Few research studieshave focused on tactile adaptations for children who are

In This IssueTactile Learning Strategies for Children who areDeaf-Blind: Concerns and Considerations fromProject SALUTE 1

Research-to-Practice 7

DBLINK: A Special Library 9

Personal Perspectives 10

NTAC Parent and Family Activities 12

Book Review 14

For Your Library 14

I

blind with additional disabilities (one excep tion isRowland & Schweigert, 2000) . Consequently, there is lit-tle empirical evidence validating tactile strategies thatare used frequently with children who are deaf-blind.The specific strategies we identified are discussed below.

Hand-over-hand guidance. Hand-over-hand guidanceis a common strategy in which an adult puts his or herhand over a child's hand to help the child explore an ob-ject, act on an object, or make a gesture or sign (Freeman,1985; McInnes & Treffry, 1982). This "hand-over-hand"

19

strategy should be used only when necessary andwith sensitivity to the child's reactions. Some chil-dren dislike having their hands manipulated andfeel threatened by the lack of control. Others becomepassive and prompt-dependent. They learn to waitfor an adult's hand on their own as a prompt to initi-ate an action (Downing, 1999; Miles, 1998). How-ever, hand-over-hand guidance may be an essentialstrategy for children who have severe physical dis-abilities because they often need assistance to ma-nipulate and explore objects.

Hand-under-hand guidance. This is an alternativeto hand-over-hand guidance. Using this method, anadult places his or her hand slightly under thechild's as they explore objects together (Dote-Kwan& Chen, 1999; MacFarland, 1995; Miles, 1998). Theadult may also gently rest a hand underneath thechild's and wait for the child to initiate an interac-tion. One strategy for introducing unfamiliar ob-jects using the hand-under-hand method involvesplacing the child's hand on top of the adult's handwhile the adult grasps an object. The adult thenslowly rotates his or her hand so that the child isgradually introduced to the shape of the object. An-other strategy involves gradually withdrawing theadult hand until the child's fingers touch the surfaceof the object or texture being explored (Dote-Kwan& Chen, 1999). In order for hand-under-hand strate-gies to be effective, the child must be willing and

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able to keep his or her hand on top of the adult'shand.

Adapted signs. Adapted signs are tactile adapta-tions of visually-based manual signs (Chen, 1995).Adaptations involve how the sign is made (handshape, orientation of the hands in relationship to thebody, movement of the hands from one point to an-other, and area of the body where the sign is pro-duced) and received by a child who is deaf-blind.This is a developing area of knowledge and the ter-minology can be confusing. Some methods of adapt-ing signs include the following:

o Tactile signing. The receiver places his or herhands on the signer's hands in order to per-ceive the signs (Reed, Delhorne, Durlach, &Fisher, 1995). This is a hand-under-handmethod. It is also called interactive signing(Alsop, 1993; Watkins & Clark, 1991). Tactileor interactive signing provides a means ofcommunication input (receptive communi-cation) for the child who is deaf-blind.

o Coactive signing. A type of adapted signing inwhich an adult physically guides the child toproduce signs using a hand-over-handmethod (Watkins & Clark, 1991). This is ameans of communication output (expressivecommunication).

Deaf-Blind PerspectivesVolume 8, Issue 2Winter 2000/20011)

Executive Editor Managing Editor Production EditorJohn Reiman Peggy Malloy Randy KlumphTeaching Research Teaching Research Teaching Research

Consulting EditorsHarry Anderson, Florida School for the Deaf and Blind; Vic Baldwin, Teaching Research; Chigee Cloninger, University of Vermont;Mike Collins, Perkins School for the Blind; June Downing, California State University Northridge; Bud Fredericks, Editor Emeritus;Jay Gense, Oregon Department of Education; Karen Goehl, Indiana Deaf-Blind Project; Lori Goetz, San Francisco State University;Richelle Hammett, New Mexico Deaf-Blind Program; Gail Leslie, Teaching Research; Betsy McGinnity, Perkins School for the Blind;Barbara A. B. McLetchie, Boston College; Kathy McNulty, Helen Keller National Center; Nancy O'Donnell, Consultant; Marianne Rig-gio, Perkins School for the Blind; Art Roehrig, Gallaudet University; Rosanne Silberman, Hunter College.

+++++++Deaf-Blind Perspectives considers all unsolicited manuscripts and employs a review process to consider whether they will be published.Some manuscripts may receive anonymous peer review. Send both a printed copy and a disk copy (Windows format) to:

Teaching Research Division345 N. Monmouth Ave.Monmouth, OR 97361

Deaf-Blind Perspectives

www.tr.wou.edu/tr/dbp

Ph. (503) 838-8391Try (503) 838-8821Fax (503) 838-8150

azilakitittallu

o Body signing. The signer produces signs onareas of the child's body other than the hands(Joint, 1998). For example, the sign for EATmay be placed against the lips. Body signsare based on manual signs that are symbolsor words. The child may perceive the sign asa touch cue, however, and not recognize aparticular sign as a word.

o Key word signing. The use of selected signs(e.g., nouns and verbs) to communicate mainideas or messages (Chen, 1999). Many chil-dren who are deaf-blind with additional dis-abilities have very short attention spans andlimited communication. The majority ofhearing adults who communicate with themare usually limited in their sign languageskills unless they have a background in deaf-ness. For these reasons, most children whoare deaf-blind who have additional disabili-ties are exposed to key word signs ratherthan to American Sign Language (with itsown grammar) or manually coded English(uses English syntax). For example, WANTPLAY are key word signs for "Do you wantto play?"

A common terminology and systematic study of themethods used to adapt manual signs for childrenwho are deaf-blind is needed. Questions that need tobe answered include: How should manual signs beadapted to encourage receptive and expressivecommunication? What criteria should guide deci-sion-making when considering whether adaptedsigns are an effective communication option for aparticular child?

Tactile representation. Tactile representationsmust make sense to a child in order to convey mean-ing (Downing & Eichinger, 1990; Rowland &Schweigert, 1998). For example, using a toy car torepresent "going for a ride in a car" may be com-pletely nonsensical from a child's tactile point ofview. A seatbelt may be a more meaningful associa-tion based on the child's experience. Adults shouldthink from a tactile rather than a visual perspectivewhen selecting tactile representations.

Touch cues. Touch cues or tactile signals are an im-portant communication strategy to use with youngchildren who are deaf-blind during the early stagesof communication development (Klein, Chen, &Haney, 2000; Rowland, Schweigert, & Prickett,1995). The intended meaning of a touch cue is de-rived from the specific context and situation. Theuse of touch cues should be consistent. A child willnot be able to decipher the meaning of a touch cue if

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different people use it for a variety of messages. Forexample, patting or tapping a child on the shouldermay express any of the following:

o positive feedback ("Great job")

o a request or directive ("Sit down")o information ("Your turn")

o comfort or reassurance ("Don't cry, you'reOK")

A child will not be able to discriminate the meaningof a touch cue if there is competing tactile input or ifhe or she does not like being touched. For example,touching a child's lips while patting his or her handis confusing if the message is " here is your drink."Touch cues should be used selectively, conserva-tively, and consistently so that the child can developan understanding of what they represent. Our litera-ture review and focus group discussion raised anumber of questions regarding touch cues. What isthe difference between a touch cue and an object cuefrom the child's perspective? Is touching the childwith the nipple of a bottle a "touch cue" or an "ob-ject cue" if what the child's perceives is pressure onthe lip? What is the difference between a "touchcue" and a "body sign" from the child's perspective?Is making the sign for CANDY on the child's cheek a"body sign" or a "touch cue" if what the child per-ceives is pressure on the cheek? How should touchcues or body signs be made (place on the child'sbody, type, and duration of touch) to help the childassociate a cue with its meaning?

Object cues. Object cues are objects or parts of ob-jects used in activities or associated with a particularperson. They are used to give information, make re-quests, and provide feedback. Initially object cuesshould be used during activities and selected so thatthe child can easily make an association between anobject and the activity it represents (Chen, 1995;Rowland, Schweigert & Prickett, 1995). For exam-ple, a small cardboard container of juice may beused to represent "time for snack." As the childlearns to associate an object with an activity, objectcues can become smaller and more abstract. An ob-ject other than the one used in the activity (e.g., anempty juice container), a piece of the object (e.g., lidof the container), a partial representation of the ob-ject (e.g., piece of cardboard), an associated object(e.g., a straw), or a model of the object (e.g., a minia-ture juice box) may be used instead.

Object cues are meaningful only if the child can rec-ognize what they represent. For example, minia-tures usually provide visual representations thatcannot be seen by a blind child. In addition, verysmall objects provide limited tactile information

32 1

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and may be more difficult for a child who has aphysical disability such as cerebral palsy to handleand explore. Sometimes arbitrary object cues areused if there is no logical object related to a specificactivity. For example, if a child changes from oneclassroom to another every day, a piece of felt on theclassroom door may be used as an arbitrary objectcue. With experience, the child learns to associatethe piece of felt as a landmark for that particularclassroom (Rowland, Schweigert & Prickett, 1995).

Essential considerations in selecting object symbolsor tangible symbols (Murray-Branch & Bailey, 1998)include the following:

* Tactile saliency (ease of recognition)

* Types of objects preferred by the child (en-courages exploration)

* Whether the objects or tangible symbols canbe reduced in size so that they are portableand can be used in a variety of settings

* How easily the object or texture can be dis-criminated from others used in a group oftangible symbols

Textured materials such as sandpaper orbubblewrap, are often used as abstract tangiblesymbols to promote communication with nonverbalchildren and adults who are blind or deaf-blind(Murray-Branch & Bailey, 1998; Rowland,Schweigert, & Prickett, 1995). These tangible sym-bols are used on communication boards to give in-formation, elicit requests, and provide choicemaking opportunities. Selection of materials is typi-cally based on the saliency of tactile characteristics.Little is known about effective strategies for assist-ing a child who is deaf-blind with additional disabil-ities to associate meaning with abstract tactilesymbols.

Focus Group Findings: CurrentPradices and issues

Four focus group meetings were conducted in Cali-fornia. The 33 participants included English-speak-ing and Spanish-speaking family members andservice providers (both English-speaking and bilin-gual) of children who were deaf-blind or blind withadditional disabilities. Although SALUTE focuseson children who are deaf-blind with additional dis-abilities, we also wanted to learn from individualswho interact with children who are totally blind andhave cognitive or physical disabilities.

Participants were asked to identify the tactile strate-gies that they use and to discuss their successes,

4

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challenges, and needs. Many of the strategies and is-sues identified by the literature review were alsoraised during the focus group meetings. In addi-tion, the participants shared their own experiencesand suggestions for enhancing tactile methods ofteaching and communication. They also identifiedareas where more information, guidance, and clar-ity regarding this topic are needed.

Individualized approach. Each child who isdeaf-blind has unique needs and preferences. Par-ticipants stressed the importance of using an indi-vidualized approach when determining the bestteaching practices and when selecting specific activ-ities and materials. Several reported that childrenpreferred tactile input that had a functional pur-pose, a simple design, and a concrete form (e.g., awooden box with a lid or uncooked beans). Many re-ported that in general, their children tended to dis-like tactile input that was unpredictable, indistinct,complex in form, light, sticky or that was extreme intemperature or texture (e.g., sand, feather dusters,water paint). On the other hand, a few indicated thattheir children liked to handle these types of materi-als. Overall, participants said that they used a trialand error approach to determine what works bestfor a particular child. They identified a need for thedevelopment of guidelines and other tools to helpthem determine effective tactile strategies.

Meaningful instruction. The importance of mean-ingful instruction emerged as another overridingtheme. Participants felt that children who aredeaf-blind learn most effectively when instructionoccurs within familiar routines, activities, and envi-ronments. The use of real items that have a usefulpurpose instead of fabricated or artificial ones (e.g.,a real orange rather than a plastic one) was men-tioned repeatedly as essential for enhancing conceptand language development.

Supportive and positive instruction. The impor-tance of using a very positive and respectful ap-proach when interacting with children who aredeaf-blind was also emphasized. Participants feltthat children should not be forced to manipulate ob-jects or engage in other tactile learning activities.They should be approached with sensitivity andgiven ample time to receive tactile information. Re-peated use of words such as "rapport building" and"non-intrusive" underscored the importance of thisapproach.

Awareness of what motivates a child and how topair that motivation with an unfamiliar tactile itemwas identified as an effective strategy. For example,some children are motivated by an activity such asmusic or movement, in which the tactile explorationof objects could be encouraged. Preschoolers who

22

have some hearing and enjoy music may cooperatewith handling playdough if the adult sings "This isthe way we roll the playdough, roll the playdough,roll the playdough . . . " Consideration regarding thetype of touch and where on the body the child likesto receive tactile information was also stressed. In-stead of demanding that a child hold and examinean item, participants felt that they should follow thechild's lead, offer opportunities for the child to comeinto contact with materials, and invite the child tohandle items in shared activities.

Systematic instruction. Participants stressed theimportance of routines and repetition to supportlearning. Consistency in the presentation of infor-mation across different settings (e.g., both at homeand at school) enable children to generalize con-cepts and skills. They seem to better understand ac-tivities that have a clearly marked beginning,middle, and end. Participants also indicated that theuse of instructional prompts (e.g., holding the childby the wrist to encourage exploration of an object)and cues (e.g., touching the child's hand with an ob-ject) help children use tactile strategies. Promptsshould be withdrawn gradually as the child learnsto respond to natural cues.

Adapting from the visual to the tactile mode. De-spite their acknowledged expertise, comments frommost participants suggested that adapting visualmaterials is very challenging. It is difficult to conveyadequate information about many concepts or ob-jects through tactile adaptations alone. For example,information about objects that are very large (e.g., acar) or very small (e.g., an ant) or that move quickly(e.g., a bird flying), require explanation. Partici-pants indicated that in these cases they provided aspoken or signed explanation about the tactile adap-tation to the child.

Concepts that are easy to understand when seen,such as identifying facial expressions or recognizingfeelings, are much more difficult to recognizethrough touch. The imitation of physical actions isanother visually-based learning strategy that is dif-ficult to adapt to a tactile mode. Typical tactile adap-tations in these situations are to guide the childthrough specific actions or movements(hand-over-hand guidance) or to let the child feelanother person's movements or actions (hand-un-der-hand guidance). At best, these strategies pro-vide tactile modeling or demonstration. Imitationrequires that the child use tactile information tomimic what he or she has experienced.

Although tactile learning often refers to the use ofone's hands to learn, focus group participantsviewed this as a very narrow interpretation. Theyadvocated an expanded definition to include the use

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of the feet, chest, stomach, face, and the whole bodyin addition to hand use. While this may be particu-larly critical for children with significant limitationsin hand use, participants also indicated that learn-ing through other body parts was helpful for chil-dren whose hands were hypersensitive to tactileinput.

Confusing terminology. Throughout the focusgroup meetings, participants used many differentterms to describe tactile strategies. Some terms suchas tactile signals, touch cues, motoring, physicalprompting, and tactile signing were defined in dif-ferent ways. This variety and confusion in terminol-ogy also emerged from the literature review. Forexample, as broadly defined by Rowland andSchweigert (2000) the term "tangible symbols" in-cludes both two- and three-dimensional symbols(pictures, textures, and objects). However, in the tra-ditional augmentative and alternative communica-tion literature, "tangible symbols" are restricted tothose symbols that can be discriminated on the basisof shape, texture, or other tangible properties; there-fore excluding pictures and other two-dimensionalsymbols (Beukelman & Mirenda,1998; Downing,1999). The use of vocabulary from multiple disci-plines has produced similar terms with differentmeanings and multiple terms with similar mean-ings. This is an area where standardization isneeded.

ConclusionOur review of the literature and comments from fo-cus group participants have raised complicatedquestions regarding the use of touch with childrenwho are deaf-blind. In the next three years, SALUTEwill address these questions through the systematicuse of individualized tactile learning strategies withchildren who are deaf-blind and have additionaldisabilities. We would like to invite readers to sharetheir questions, concerns, and resources related tothe use of tactile strategies with children who aredeaf-blind.

ReferencesAlsop L. (Ed.) (1993). A resource manual for understanding

and interacting with infants, toddlers, and preschool agechildren with deaf-blindness. Logan, UT: Ski-Hi Institute,Utah State University.

Beukelman, D.R., & Mirenda, P. (1998). Augmentative andalternative communication: Management of severecommunication disorders in children and adults (2'd ed.).Baltimore: Paul H. Brookes.

Chen, D. (1995). Guiding principles for instruction andprogram development. In D. Chen & J. Dote-Kwan

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(Eds.), Starting points. Instructional practices for youngchildren whose multiple disabilities include visualimpairment (pp.15-28). Los Angeles: Blind ChildrensCenter.

Chen, D. (1999). Beginning communication with infants.In D. Chen (Ed.), Essential elements in early intervention:Visual impairments and multiple disabilities (pp.337-377).New York: AFB Press.

Dote-Kwan, J. & Chen, D. (1999). Developing meaningfulinterventions for infants whose multiple disabilitiesinclude visual impairments. In D. Chen (Ed.), Essentialelements in early intervention: Visual impairments andmultiple disabilities (pp.287-336). New York: AFB Press.

Downing, J. (1999). Teaching communication skills tostudents with severe disabilities. Baltimore: Paul H.Brookes.

Downing, J., & Eichinger, J. (1990). Instructional strategiesfor learners with dual sensory impairments inintegrated settings. Journal of the Association for Personswith Severe Handicaps, 15, 98-105.

Freeman, P. (1985). The deaf-blind baby: A programme of care.London: William Heinemann Medical Books.

Joint, S.A. (1998). Body signing: A functional strategy forintroducing language to students who are deaf-blind.DBI Review, 21,10-11.

Klein, M.D., Chen, D., & Haney, M. (2000). Promotinglearning through active interaction. A guide to earlycommunication with young children who have multipledisabilities. Baltimore: Paul H. Brookes.

MacFarland, S.Z.C. (1995). Teaching strategies of the vanDijk curricular approach. Journal of Visual Impairments &Blindness, 89, 222-228.

McInnes, J.M., & Treffry, J.A. (1982). Deaf-blind infants andchildren: A developmental guide. Toronto: University ofToronto Press.

Miles, B. (1998). Talking the language of the hands to thehands. Monmouth, OR: DB-LINK, The NationalInformation Clearinghouse on Children who areDeaf-Blind.

Murray-Branch, J. & Bailey, B.R. (1998). Textures ascommunication symbols. Blumberg, IN: Blumberg Centerfor Interdisciplinary Studies in Special Education,Indiana State University.

Reed, C.M., Delhome, L.A., Durlach, N.I., & Fischer, S.D.(1995). A study of the tactual reception of sign language.Journal of Speech and Hearing Research, 38, 477-489.

Rowland, C. & Schweigert, P. (2000). Tangible symbols,tangible outcomes. Augmentative and AlternativeCommunication, 16, 61-78.

Rowland, C. & Schweigert, P. (1998). Enhancing theacquisition of functional language and communication.In S.Z. Sacks & R.K. Silberman (Eds.), Educating studentswho have visual impairments with other disabilities(pp.413-438). Baltimore: Paul H. Brookes.

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Rowland, C., Schweigert, P.D., & Prickett, J.G. (1995).Communication systems, devices, and modes. InK.M. Huebner, J.G. Prickett, T.R. Welch, & E. Joffee(Eds.), Hand in hand: Essentials of communication andorientation and mobility for your students who aredeaf-blind (pp. 219-259). New York: AFB Press.

Watkins, S., & Clark, T.C. (1991). A coactive sign systemfor children who are dual sensory impaired. AmericanAnnals of the Deaf, 136, 321-324.

Project informationWorking with a National Advisory Committee, fo-cus groups and selected children in California, Pro-ject SALUTE staff will identify, develop, document,and validate tactile learning strategies for children,infants through elementary school age. One focusgroup was conducted with Spanish-speaking fami-lies in order to produce materials that are culturallyresponsive. Materials will include a manual andvideos (closed captioned and in English) demon-strating activities in both home and school environ-ments. The video of home activities will also be inSpanish. Project SALUTE is a model demonstrationproject funded by the U.S. Department of Educationgrant #H324T990025 to California State University,Northridge.

Contact:Co-DirectorsDeborah Chen, Ph.D.deborah.chen@csun.edu818-677-4604

June Downing, Ph.D.june. d owning@csun. edu818-677-5261

Bilingual CoordinatorGloria Rodriguez-Gil, M.Ed.gloria.rodriquezgil@csun.edu818-677-4532

Web Site for Post-SecondaryDeaf-Blind Studentsh t tp ://www .peersupport db. co m

This is a resource for students who are deaf-blindattending post-secondary institutions, such ascolleges, universities or technical schools. It isprimarily intended for students in British Co-lumbia, Canada, but contains information thatmay be of use to others as well, including causesand types of deaf-blindness, how to accesspost-secondary services, funding, an overviewof resources, and using adaptive technology.

4

pers

Research-to-Practke

Parents Use a Research Technique toHelp Their Children with Cortical

Visual ImpairmentsKaren Goehl

Georgia Hambrecht

IIn the truest sense of the idea of "research-to-prac-tice," the Indiana Deafblind Services Project devel-oped and co-sponsored a program to train parentsto use a single-subject research design to improvespecific skills of their children with cortical visualimpairments (CVI). The single-subject design is a re-search method well known to behavioral scientistsand clinicians. It is used to examine a specific behav-ior of an individual (the "subject"), introduce someform of intervention, and evaluate any resultingchange in behavior. This design is often used in situ-ations where it is important to reduce or eliminatebehaviors that interfere with a student's ability tofunction, such as self-stimulation or hitting others.Alternatively, it may be used to increase desired oruseful behaviors such as paying attention to tasks orparticipation in social activities.

There are several different types of single subject de-signs. One common type, applied behavior analysis,begins with taking baseline measures. A baseline isthe frequency (e.g., number of times in a day) or in-tensity that a target behavior (e.g., tantrums) occursprior to any intervention. An intervention strategy(e.g., communication training) is then implemented.Target behaviors continue to be charted on graphsduring and after the period of intervention. Thegraphs depicting behavior change are reviewed todetermine whether a change occurred due to the in-troduction or withdrawal of the intervention strat-egy.

Sixteen families (28 family members) participated inthe Indiana project. All had children with CVI whowere six years old or younger. Eight of the familieshad deaf-blind children. The family members at-tended a workshop where they learned about newstrategies to promote the development of functionalvision that are proving to be effective when usedwith infants and toddlers who are visually im-paired. Family members were also taught to use aformal process to select and apply these strategies tohelp their children acquire specific skills and behav-iors. Essentially, the families learned to become ac-tive participants with research teams.

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Several weeks prior to the workshop, eight educa-tion professionals received training as facilitators.The role of each facilitator was to help family mem-bers take their ideas and turn them into doable sin-gle-subject studies. They helped each familyinterpret technical language, go through the processof designing a study, develop an intervention, un-derstand how to observe their children's behaviors,and develop a method to collect and record, data.

Facilitator training was conducted by GeorgiaHambrecht of the Department of CommunicationDisorders and Special Education at Indiana StateUniversity, and Karen Goehl, Project Director of theIndiana Deafblind Services Project. They reviewedseveral topics with the facilitators including sin-gle-subject research designs, data collection meth-ods, and strategies for encouraging use of functionalvision in young children with CVI.

During parent training, the 16 families were dividedinto 8 groups (2 families per group). Each was as-signed to one of the facilitators. Most of the familieswere accompanied by one or more of the serviceproviders who worked with them (e.g., develop-mental therapist, occupational therapist, speechtherapist). Parents were guided through a specificprocess that began with describing their children'svision and hearing abilities, and concluded with adescription of their baseline and training proce-dures.

Each family submitted a completed research designby the end of the workshop. Parents and familymembers determined which behaviors of the childwere important to focus on (e.g., visual tracking,reaching, lifting head, scanning objects, attending toother people), and specific tips or procedures to useat home to help improve or change the behaviors.Family members had to describe how they wouldrecord the targeted behaviors, and what form ofdata (percentages, rates) they would use to examinechanges over time. (See next page for an example of a de-sign created by one familythe child's name and otheridentifying information have been changed). The fami-lies then used specific data reporting forms to charttheir children's progress.

Family-centered programs such as this one give par-ents and care providers a sense of control and in-volvement, realistic expectations, and the directexperience of shared success. This project providesan example of a commitment to empower familiesby giving them access to tried-and-true methods topromote skill development in their own children.The Indiana Deafblind Services Project is continu-ing to gather data that family members submitabout their progress. For additional information,contact Karen Goehl at 800-622-3035.

f.tlind'Persp twes Winter 2000/2001 ,==.

Cortical Visual Impairment: Linking ffnformafion to StrategiesTo Do Form

Name of Child: Kevin

Age of child: 2 years 6 months

1. Write a brief description of your child's vision and hearing abilities.

o Vision: Light sensitive, more in left eye; seems to turn to light, no tracking, no functional visiop. Right eye toodamaged.

o Hearing: Mild loss left, moderate right. He can localize; discriminates words, voice discrimination.

2. Expand the definition of the behavior you wish to change.o Behavior: Roll to favorite toy (Elmo toy squeaky worm) and reach for it.

o Definitions: The caregiver will be 3-5 ft. from Kevin and the toy will be presented visually & auditorily andwith verbal encouragement; with tactile cue/sign.

o Example: Kevin will roll to the toy when it is presented visually and auditorily and with verbal encourage-ment and he will reach for it.

o Iffy instances: Auditorily or visually attends, or complains without moving toward the toy; rolls in wrong di-rection.

3. Write the three "tips" you are considering.

o Facilitate graduated steps through the activity.

o Use song/exaggerated intonation when we describe his act.

o Allow him time to process auditory information.

4. Write the one "tip" you want to try.Sing command to London Bridge Tune, "You are rolling to the toy."

5. What are some reasons (examples or facts) why you picked that "tip"?He loves music.

6. Write your "Best Guess" idea. (Start with a general "Best Guess" idea in the following form:If I use (tip) then (child's name) will (behavior)

If we use this individualized song, Kevin will localize and roll & reach for the toy/person.

7. Decide how you will count the behavior.Rolls to toy and reaches for it (3-5 ft).

8. Select the data form (percentage, duration, rate).Percentage.

9. Describe in detail how you will implement your "Best Guess" idea (who, what, when).

10. Describe your procedure for Baseline and Training including time for each (number of days you planto do "old way" and with new "tip").o Baseline 3 consecutive days lay him down, squeak toy 3 ft away and observe response.

o Training

11. Identify who will be responsible for sending the data to the Deafblind Project.

26

D Blind Persp five

DB _LINK

A Special LibraryGail Leslie

Peggy MalloySusan is a special education teacher. In twoweeks, a 5-year old deaf-blind boy will be enrolledin her class. She has never worked with adeaf-blind child before. She is anxious to learn asmuch as she can about deaf-blindness and teach-ing strategies for this student.

David is 17 and has Usher syndrome. He is plan-ning to go to college and needs information abouthow to make sure the school he attends is able tomeet his needs.

Annette and Robert are the parents of a 3-monthold son, Danny. Danny was born prematurelyand has severe vision and hearing loss. Theywant to make sure that Danny gets the best possi-ble education and know how important it is tostart early. They need information about earlylearning and communication.

Jennifer is a graduate student. She is writing aresearch paper about the impact of deaf-blindnesson learning. She needs help locating what hasbeen written on this subject.

hese examples show the range of information re-quests that DB-LINK staff receive on a typical day.When the federal government launched plans for aclearinghouse specific to deaf-blindness in 1992, itsintent was to make information about this disabilitywidely available. Today, DB-LINK responds to re-quests from people throughout the United Statesand is nationally recognized as the central source forthe collection and distribution of information aboutdeaf-blindness.

Two aspects of information management have beenessential to our success. First, DB-LINK was de-signed to combine features of both clearinghousesand libraries to create a service that makes us uniqueamong information providers. Second, we were for-tunate that our development occurred at the sametime that information technology was expanding.This made it possible for us to take full advantage ofcomputers and the Internet.

Clearinghouse/Library Design

A clearinghouse is an information center that tradi-tionally functions by making general informationabout a specific topic available to anyone. Clearing-houses usually maintain a small selection of publi-cations and resource lists, and are often expert at

Winter 2000/2001 ,==

providing their customers with referrals to meetmore specific needs. As a clearinghouse DB-LINKhas developed topical publications that meet the

eneral needs of our customers and we maintain in-formation about a network of service providers forreferral. These include agencies, support groups,schools, and consultants. We have also developed alevel of service and a focused, deep collection of ma-terials that is not typical of most clearinghouses. Inthis way, DB-LINK functions more as a special li-brary.

A special library is a library that has a unique focusand develops a comprehensive, in-depth collectionof materials about a specific topic. Special librariesare found in government agencies, private compa-nies, museums, hospitals, and other similar organi-zations. The mission of a special library is toorganize and manage a body of information notreadily available anywhere else or to meet the needsof a particular group of people.

Prior to the establishment of DB-LINK, it was hardto find in-depth information about deaf-blindness.State deaf-blind projects had small resource librar-ies, but they were not comprehensive or widelyavailable to parents and teachers. Becausedeaf-blindness occurs in a small number of people,it is a topic rarely included with the education or dis-ability information found in most libraries. BeforeDB-LINK, much of what was written about educa-tional methods and research in the field had no visi-ble network for distribution. For these reasons, itwas important that DB-LINK comprehensively col-lect all available useful information aboutdeaf-blindness and make it easily accessible.

Currently, our library includes books, articles, vid-eos, newsletters, conference proceedings, researchfindings, and catalogs. By using such standard li-brary practices as collection development, databasecreation, centralization of resources, and referenceservice, DB-LINK has created greater visibility andaccessibility for information about deaf-blindness.We also collect information from other subject areasthat deepen our ability to support the specific infor-mational needs of our customers. Topics in these ar-eas include special education, disability law,medicine, assistive technology, and funding oppor-tunities.

Most important to our customers, is the responsivenature of our service. DB-LINK information special-ists research and deliver specific responses to ques-tions. We provide articles, resource and curriculalists, and locate information online. Our customersinclude parents, deaf-blind individuals, teachers,researchers, IEP teams, and technical assistance pro-viders. We support families and teachers with infor-

2

mation that can make a difference for their child orstudent. Our ability to respond uniquely to each re-quest makes it possible for anyone, regardless ofgeographic location, to access our library.

The Influence of Technology

Emerging technologies have allowed us to formatinformation and provide a range of services thatwere not even a twinkle in the federal government'seye when they initially planned this project. Wewere fortunate to begin in 1992, when few peoplewere anticipating the information explosion thatwould follow in the next few years. As we devel-oped, the fact that we were unburdened by a historyof established practices made it very easy to take ad-vantage of computers and advancing technologies.

Timing, knowledgeable staff, and supportive insti-tutions have been key to integrating our use of tech-nology, affording us the opportunity to moveinformation into the hands of a much wider cornmu-nity of users. Our web site offers full access to ourdatabases and publications, and current informa-tion about research projects, training opportunities,and conferences. It also provides a starting point forlocating additional information on the web. Famil-iarity with computers and the Internet is not neces-sary to access DB-LINK, however. The majority ofour customers still contact us by phone.

DB-LINK also uses technology to manage a varietyof e-mail discussion groups. These give families,professionals, and consumers an opportunity to ex-change personal experience and knowledge viae-mail.

Additionally, technology has made it possible forDB-LINK to operate as a consortium. Three primaryagencies work together on DB-LINK: Teaching Re-search at Western Oregon University, PerkinsSchool for the Blind, and the Helen Keller NationalCenter. Electronic databases, a rotating 800 tele-phone number, and the ability to move largeamounts of information via the Internet has made itpossible for us to remain geographically separate,yet provide unified service delivery.

Technology has helped to create a network that ex-tends the impact of information and is transformingthe field of deaf-blindness. DB-LINK is now part of acommunity that is developing information re-sources and increasing awareness about deaf-blind-ness throughout the world.

What You Can Do

At DB-LINK, we collect information in a variety ofways. We subscribe to journals and newsletters. Weattend conferences and collect proceedings. We

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Winter 2000t2001

search online databases and the Internet. We collectinformation produced by research projects and statedeaf-blind projects. At every step of the way, yourpartnership is critical to our mission to provide ser-vice and access to quality information. You can help.Send us notices or copies of new products such asbooks, articles, manuals, and videos, so that we canadd these to our collection and publicize their avail-ability. Send us materials you develop for trainingprograms or conferences. If you run support groupsor work for schools, agencies or organizations thatprovide services to deaf-blind individuals, help uskeep our resource database up-to-date. Call us orcheck the resource database on our web site to see ifyour organization is currently listed and the infor-mation is accurate. Contact us if you have expertisein deaf-blindness and are interested in being listedas a consultant in our database.

Think of us as your special library and spread theword about DB-LINK. Let families, teachers andother people who work with deaf-blind childrenand youth know that we are available by phone,11Y, e-mail, fax, and on the web, to assist in meetingtheir information needs. Tel: 800-438-9376,TTY: 800-854-7013, dblink@tr.wou.edu,http: / /www.tr.wou.edu / dblink

0:00:00:00:00:00:00:0

Personall PerspectivesPeggy Malloy

With this issue of Deaf-Blind Perspectives we beginwhat will hopefully be an ongoing column aboutdeaf-blind people, their families, friends, and thepeople who work with them. In each column we willprofile one to two individuals to find out about theirlives, their work, and what they think is importantfor the field of deaf-blindness. The purpose is to givereaders an opportunity to learn more about eachother and to give individuals an opportunity toshare their personal views about deaf-blindness. Iwant to thank Barbara McLetchie at Boston Collegefor suggesting this idea. For this first column, Italked to Barbara Miles, a private consultant whospecializes in communication issues, and JanieNeal, a private consultant, teacher, and speaker inSeattle.

Barbara Miles

Through her work as a consultant, teacher, andwriter, Barbara Miles helps deaf-blind childrenlearn and communicate by teaching their parents,teachers, and other professionals effective teachingmethods. As a private consultant with expertise in

28

lind Pers19;41---,..

communication issues, she provides training aboutindividual deaf-blind children to teachers and par-ents. Her goal is to inspire the people that she workswith and give them perspective on their teachingmethods. She sees her role as supportive and saysthat the real heroes are the parents, and the teacherswho work directly with deaf-blind children.Barbara also does presentations at conferences andworkshops and works for the Hilton/Perkins Pro-gram in Asia (mainly Indonesia and Malaysia) andLatin America, helping to establish classrooms fordeaf-blind children.

Prior, to starting her consulting business, Barbarawas a teacher of deaf-blind children at PerkinsSchool for the Blind. She developed an interest indeaf-blindness when working as a volunteer at aschool for disabled children in Rutland, Vermont.She was fascinated by the challenge of making genu-ine contact with deaf-blind children and found thatshe needed to learn to experience the world differ-ently in order to communicate with them. This expe-rience inspired her to obtain a master's degree indeaf-blind education at Boston College.

Barbara told me that her work is very important toher because she believes that deaf-blind childrenhave important things to teach us about ourselves.She said that deaf-blind children, "Teach me tovalue every person, to slow down, to notice reallysmall things, to pay attention to my hands and theirhands, to value nonverbal communication, to beaware of the miracle of language, and to not pity my-self." She quoted Martin Prechtel, a Mayan teacher,who spoke at a workshop she recently attended. Hesaid, "If you want to be blessed, you should go to aperson in the society who is shunned or discountedand ask them to bless you." Barbara says that everytime she meets a person who is deaf-blind, she re-ceives a blessing.

Barbara is a wonderful writer. She has written threefact sheets for DB-LINK: Overview of Deaf-Blindness,Talking the Language of the Hands to the Hands, andmost recently, Literacy for Persons who are Deaf-Blind.She said that writing Talking the Language of theHands to the Hands, about how deaf-blind childrenlearn about the world and communicate with theirhands, was particularly important to her. It gave heran opportunity to express her feeling thathand-over-hand teaching techniques don't work.She believes that controlling children's hands is nothelpful. Writing the fact sheet gave her an opportu-nity to think and write about alternative teachingmethods. Along with Marianne Riggio, Barbara alsoedited and contributed to a book called RemarkableConversations: A Guide to Developing Meaningful Com-munication with Children and Young Adults who are

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Winter 2000/2001 =

Deafblind, published in 1999. She is grateful to havehad the opportunity to work with Marianne on thebook. She also wanted to mention that she is alsograteful for the influence of Sara Gaar who firstmade her aware of the importance of genuine con-versations with deaf-blind children.

When asked how educational and other services fordeaf-blind children and adults could be improved,Barbara said that as a society we need to show thatwe value deaf-blind children. One way to do this isto start paying teachers, paraprofessionals, and allother service providers excellent salaries. Good sup-port services for parents, families, and teachers arealso important. Additionally, professionals must re-ally listen to deaf-blind people, ask them again andagain what they need, and question assumptionsthat professionals know what is best for deaf-blindpeople.

Barbara has a dog named Rosie who has been withher to many important deaf-blind events. Barbarawanted to take this opportunity to say thanks toRosie, Uncle Steve, Marianne, and all of Rosie'sfriends in the deaf-blind community. She says thatthe community of deaf-blind people and the peoplewho work with and for deaf-blind people is reallyamazing and she feels fortunate to have met somany wonderful people.

Janie Neal

Janie Neal, a consultant, teacher, and speaker, hasbeen incredibly active in raising awareness aboutdeaf-blindness and improving services fordeaf-blind people. She was diagnosed with UsherSyndrome Type 1 when she was 13 years old (six ofher cousins also have Usher 1). She attended theTennessee School for the Deaf and then went on toreceive a bachelor's degree in psychology fromGallaudet University and a master's degree in spe-cial education from Georgia State University.

In the past, Janie worked as a teacher for deaf chil-dren. More recently, her efforts have focused ondeaf-blind issues. She has taught workshops atschools, colleges, and conferences about communi-cation methods and adaptive equipment used bydeaf-blind people and has spoken to interpretingstudents about deaf-blind interpreting. She alsoconsults with agencies that need information aboutdeaf-blindness and provides peer support to otherpeople with Usher syndrome. She has worked as avocational rehabilitation teacher, was Project Coor-dinator for a Seattle Deaf-Blind Service Center recre-ation and leisure project, and twice served asDirector for the Seattle Lighthouse for the Blind an-nual Deaf-Blind Retreat. She currently serves on theboard of the American Association for the

D f.Blind 'Perspe fives

Deaf-Blind and is a member of numerous commit-tees for agencies such as Seattle Deaf-Blind ServiceCenter, King County Sound Transit, and HelenKeller National Center. She is a past president (twoterms) of Washington State Deaf-Blind Citizens.

Janie believes that deaf-blind adults can serve as rolemodels for deaf-blind children and that it is very im-portant for deaf-blind children to be in contact withdeaf-blind adults on a regular basis. Parents ofdeaf-blind children can also benefit from socializingwith deaf-blind adults. She also has a number ofsuggestions for improving education for deaf-blindchildren. She suggests hiring deaf-blind adults fa-miliar with educational objectives as consultants toassist with Individualized Education Program (IEP)development for deaf-blind children. She advocatesthe use of intervenors and/or support service pro-viders beginning early in life to help deaf-blind chil-dren develop their potential to the fullest. Sheencourages parents to explore the use of all types ofcommunication including sign language (visual andtactile) to communicate with their children.

Janie says that she uses humor to deal with the mi-nor and major challenges that deaf-blind people faceevery day when encountering things that other peo-ple take for granted. She believes that it is importantto enjoy your life to the fullest and never lose yoursense of humor.

NTAC Parent and IFamilyActivitiesKathy McNulty

NTAC Associate Director

ne of the main objectives of NTAC (The Na-tional Technical Assistance Consortium forChildren and Young Adults who are Deaf-Blind) isto provide technical assistance to parents and fami-lies. During the past 4 years of our current 5 yearfunding cycle, this objective has been met in severalways: an annual national parent workshop in col-laboration with the National Family Association forDeaf-Blind (NFADB), cooperative work with keygroups and agencies on activities that provide par-ent and family related technical assistance in spe-cific states, and production of resource materialsdesigned by and for parents and family members.

With the requirements set by the Individuals withDisabilities Education Act (IDEA'97) regarding par-

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Winter 2000/2001 =

ent/family participation in all aspects of the educa-.tion of children who have disabilities, the year 2000found NTAC searching for ways to maximize andexpand its parent/family technical assistance activi-ties. This article summarizes these efforts and hope-fully captures our strong commitment to workingwith and for families of deaf-blind children andyouth.

WorkshopsNTAC supported three family-focused workshopsin 2000. The first, Family Specialists: Self-DiscoveryImpact on Families, was held June 24-25, in Minneap-olis. This workshop, jointly sponsored by theHilton-Perkins National Program and NTAC, wasdesigned for family specialists who work for statedeaf-blind projects and the 10 Regional Directors ofNFADB. The Regional Directors are parents who siton the NFADB board and are responsible for work-ing with families and parent organizations in theirassigned regions. The primary planners and pre-senters of the conference were Marlyn Minkin(deaf-blind consultant), Cathy Kirscher (HelenKeller National Center Regional Representative),Nancy O'Donnell (Helen Keller National Center),and Steve Perreault (Hilton-Perkins). The goal wasto help each participant gain knowledge and aware-ness of conflict resolution strategies and greater un-derstanding of the interrelatedness of power andposition in relationships. Viewed as a follow-up to afamily specialist workshop offered in 1997, it helpedto enhance and strengthen an emerging networkamong the participants.

The second workshop, Negotiating the Maze: Strat-egies for Effective Family Technical Assistance, also inMinneapolis, was held June 26-27. The need for thisworkshop, attended by professionals from statedeaf-blind projects throughout the United States,was identified by a survey of state project personnelearlier in the year. The program agenda included astrong blend of related topics that artfully combinedthe academic and human aspects involved in deliv-ering technical assistance to families. Gwen Beegle(Beech Center, University of Kansas) spoke abouthow to translate current research on parent and fam-ily issues into effective practice. Kate Moss (TexasDeaf-Blind Outreach Project), Kathy McNulty(NTAC), and Sally Prouty (Minnesota DeafblindProject) gave a presentation on the who, what,where, when, and how of providing technical assis-tance to parents and families. Minnesotan parentsSusan Smith, Liz McDevitt, Karen Wojcik, and SallyProuty, and Arizona parent, Kim Lauger, partici-pated in a panel presentation on parent perspec-tives. Gwen Whiting, family trainer and mental

30

health consultant, spoke about grief and how tomaintain both professional and personal balancewhen working with families.

The third workshop, Transitions They Happen All theTime, held August 10-12 in Salt Lake City, wasco-sponsored by NTAC and NFADB. The topic,transition planning, was chosen based on the resultsof a national parent/family interest survey con-ducted by NTAC during the winter of 2000. Theterm transition is most often associated with youngadults preparing to leave school, but NTAC andNFADB recognized that there are additional,equally important stages of transition. We designeda workshop to address different types of transitionsthroughout the educational years of children withdeaf-blindness. The agenda focused on: issues thatarise and stresses that may be experienced duringany time of transition, strategies to alleviate stressand conflict, IDEA and effective transition practicesfor different age groups, and resources and servicesneeded for a successful transition. To make theworkshop more meaningful for parents, partici-pants were divided into groups according to the ageof their child: Early Intervention to Early Child-hood, Early Childhood to School Age, School Age toSecondary, and Secondary to Adult Life.

To help offer training on transitions across a varietyage ranges, we assembled what we considered the"dream team of presenters:" Marlyn Minkin, adeaf-blind consultant on mental health issues; Dr.Gene Edgar, a consultant on transition and specialeducation and a professor at the University of Wash-ington; Linda Alsop, an early childhood consultantfrom the Ski-Hi project at Utah State University; SueOlsen, an early intervention specialist in Utah; Da-vid Wiley, a transition specialist with the TexasDeaf-Blind Outreach Project; and Dr. JenniferGrisham-Brown, a consultant on alternate assess-ment and functional curriculum for students whoare deaf-blind, and a professor at the University ofKentucky.

The results of the workshop were extremely gratify-ing. Nearly 100 parents from over thirty states andstaff from twelve state deaf-blind projects attended.Networking among parents%egan almost immedi-ately and, with the knowledge and guidance pro-vided by the excellent presentations, action planswere developed by each parent before leaving forhome. As one parent wrote on an evaluation form, "Iloved the networking with other parents! I learnedso much. I can hardly wait to take it back to mystate."

Winter 2000/2001

State-Specific Technical AssistanceIn addition to conducting workshops during thepast year, NTAC has also worked cooperativelywith people involved in deaf-blind education in nu-merous states to provide parent/family relatedtechnical assistance. This included such activities asworking with parent/family organizations, helpingindividual state deaf-blind projects provide effec-tive family technical assistance, and encouragingthe inclusion of parents in state-wide trainingevents that involve NTAC participation.

Resource MaterialsNTAC has developed a number of resource andtraining products during the past year. Two werespecifically designed by and for parents and fami-lies, Communication at Home and in the Community:Helpful Strategies and Suggestions from Parents andFamilies with a Child who is Deaf-Blind and TransitionTool Kit for Parents.

Future ActivitiesAs NTAC moves into the fifth and final year of thecurrent funding cycle, new activities under the par-ent objective are already under way. Work withinindividual states will continue and it is anticipatedthat a workshop for new family specialists will be of-fered. A set of communication fact sheets for par-ents and a fact sheet on family issues are in progressand scheduled for distribution this year. And last,but not least, something new and exciting is beingplanned for the National Parent Workshop in 2001.On August 2-4 in Miami, Florida, NTAC, NFADB,and the Hilton-Perkins International Program willhost an International Parent/Family Workshop.Thirty parents from Latin America will join parentsfrom across the United States to share their experi-ences of parenting and educating a child who isdeaf-blind. As always, this coming year will findNTAC continuing its efforts to provide technical as-sistance to parents and families.

4' 4:0' 4,44

Looking for information about conferences?We ran out of room in this issue. Please contactDBLINK for a current listing. Tel. 800-438-9376,ITY 800-854-7013, dblink@tr.wou.edu, or go tohttp: / /www.tr.wou.edu /dblink / data

3113

akarinleXttulx

ook ReviewCharlotte Cushman, M.Ed.

Catholic Charities Maine/New England CenterDeafblind Project

Creative Constructions: Technologies that MakeAdaptive Design Accessible, Affordable, Inclu-sive and Fun. Molly Campbell and Alex Truesdell,2000.

"Think creatively. Plan collaboratively. Build eco-nomically." That's the philosophy of the authors ofCreative Constructions, a new book that offers awealth of practical information about creating adap-tive materials and equipment for individuals whohave special needs. This helpful book is a resourcefor therapists, teachers, parents, and others lookingfor light technology options to solve problems orcreate opportunities for individuals who have dis-abilities. The authors share their views about work-ing as members of a team, assessing assistivetechnology needs, and establishing adaptive designworkspaces. The materials and techniques used tomake customized assistive devices are described in.

a clear, straightforward manner. Topics includecardboard carpentry, paper-based technology,woodworking, fabric and foam use, plastic con-struction, and basic electronics. Examples of suc-cessful projects from their personal experiences areincluded to stimulate the reader's own creativeideas.

Alex Truesdell and Molly Campbell have extensiveexperience in the field of adaptive design. Both haveworked as coordinators of the Adaptive Device Cen-ter at Perkins School for the Blind in Watertown,Massachusetts. Each brings a different perspectiveto their work. Alex is an education consultant spe-cializing in teaching adaptive design. Molly is anoccupational therapist with extensive experience inpediatrics, developmental disabilities, and adaptivedesign. They have taught workshops on the basictechniques of adaptive design around the UnitedStates and abroad.

Creative Constructions contains something for every-one. Educators and speech therapists will be inter-ested to find information about tangible symbolcards based on the ideas of Dr. Jan van Dijk and thetangible symbol systems he developed for deafblindchildren in the 1960s. The purpose and function oftangible symbol cards are included as well as spe-cific directions on how to make them.

There are numerous ideas for seating and position-ing equipment that physical and occupational thera-pists will welcome, such as step-by-step instructionsfor building a corner chair. There are suggestions

14

Winter 2000/2001

for sensory motor equipment including sensoryexploration boards and weighted blankets. Orienta-tion and mobility instructors will find directions formaking the Connecticut pre-cane. A range of activ-ity centers are described, using many different typesof materials. The authors outline some of the thera-peutic benefits students gain from inviting andstimulating environments.

One of the greatest qualities of Creative Constructionsis a friendly and approachable style that makes iteasy to use. It is full of clear line drawings, lists ofsuggested tools and equipment, and photographs ofmaterials and projects. The tone is inviting. It em-powers the reader with a "can do" attitude. Thisbook is equally valuable to novices needing gentleencouragement and to more experienced readersneeding a quick review or suggested resources.

Creative Constructions is a practical, straightforwardresource book that is a must for anyone looking forcreative, low-cost ways to design and make custom-ized materials for individuals with disabilities. It isa welcome addition to the field and highly recom-mended for anyone with an interest in adaptive de-sign.Creative Constructions is available for $24.95, plus $5.00 shipping andhandling for one book and $2.00 for each additional book. Makechecks payable to Molly Campbell.Creative Constructions659 Green StreetCambridge, MA 02139617-972-7520mollycampbell@mediaone.net

+

For 'Your LibraryTangible Symbol Systems, 2"d Ed.Rowland C. & Schweigert P., Portland, OR: OregonHealth Sciences University, 2000.Describes how to teach people who are unable tocommunicate using speech, manual sign languageor other abstract symbol systems to use two-andthree-dimensional symbols to communicate. Thebook has been revised based on recent research in-volving individuals with deafblindness, mental re-tardation, autism spectrum disorders and multipledisabilities. A companion 75-minute video (2"d ed.,published in 1996) is also available. Order via theweb at http: / /www.designtolearn.com or contactMayling Dixon, OHSU Center on Self Determina-

32

'ElifiallarthEWs

tion, 3608 SE Powell Blvd., Portland, OR 97202; Tel.503-232-9154, ext 108, dixonma@ohsu.edu Cost:$25.00 (book); $15.00 (video).

The Intervener in Early Intervention and Educa-tional Settings for Children and Youth WithDeafblindness (NTAC Briefing Paper)Alsop, L., Blaha, R. & Kloos E. Monmouth, OR: NTAC,The National Technical Assistance Consortium forChildren and Young Adults who are Deaf-Blind, 2000.This paper includes: a discussion of the needs ofchildren who are deaf-blind and how intervenerscan meet those needs; how to determine the need foran intervener during the IFSP or IEP process; logisti-cal issues such as training, supervision and support;and commonly asked questions. Available on theweb (http:/ /www.tr.wou.edu/ntac/publica-tions.htm) or through DB-LINK: Tel. 800-438-9376,TTY 800-854-7013, dblink@tr.wou.edu

The Preemie Parents' Companion: The EssentialGuide to Caring for Your Premature Baby in theHospital, at Home, and Through the First YearsMadden, S.L. Boston: The Harvard Common Press,2000.This book includes information about caring for pre-mature infants, parenting in the hospital, home care,infant development, and financial issues common topremature births. It also reviews common medicalcomplications and discusses how to cope with diffi-cult situations. Appendices include growth charts,infant CPR, immunization schedules, and other re-sources for parents. Available through bookstores.

Where Do I Begin? Developing CommunicationWith Children Born Deafblind (Video)Open-captioned. 23 minutes. West Australian DeafblindAssociation, 2000.Focuses on key communication development strate-gies including making contact, building rapport, ac-knowledging communication efforts, tactile cuesand symbols, tactile signing, routines, andchoice-making. Available in both PAL (Australianformat) and NTSC (US and Canadian format).Available from: WA Deafblind Association, 6th Ave-nue and Whatley Crescent (PO Box 14), MAY-LANDS, Western Australia 6051, Australia; Tel. (08)9 272 1122, TTY (08) 9 370 3524, wadba@nw.com.auCost: $27.50 (PAL) plus $5.00 postage within Aus-tralia or $10.00 outside; $35.00 (NTSC) format, plus$10.00 postage outside Australia. Checks or moneyorders in Australian currency only are accepted.

Charge Syndrome: A Management Manual forParentsHefner, M. & Davenport S.H.L.(Eds.) Columbia, MO:CHARGE Syndrome Foundation, Inc., 1999.Contains a history of the CHARGE Syndrome Foun-dation, stories from families, a brief section on de-

Winter 2000/2001

velopment, extensive information on the medicalproblems of CHARGE, a glossary, and resources.Available from: CHARGE Syndrome FoundationInc., 2004 Parkade Blvd., Columbia, MO65202-3121, Att. Marion Norbury; Tel. 800-442-7604or 573-499-4694, http:/ /www.chargesyndrome.org,marion@chargesyndrome.org Cost: $20.00 (in-cludes postage).

3 315

Born deaf, Winnie began to lose her vision atage 31. She gained new skills at the HelenKeller National Center and graduated withhonors from Callaudet University. LikeWinnie, who now works as a teacher andceramicist, other people who are deaf-blindcan lead independent and fulfilling lives. Asan employer, neighbor, classmate, or friend,YOU CAN MAKE A DIFFERENCE.Call 1-800-255-0411, x270 for information.

Share Helen Keller's Vision

Helen Kelm NaionaCenter torDestaind Youths ad Adulbs111 Middle Neck Rood, Saxis Point, NV 11050

&Vend OnusAtlanta Boston Clahugo Dam Dwar Kansa CItysie owes we Yoh Sadtla Watlirgtoo, DC

New LISTSERVO for Deaf-Blind Teensand Young Adults

DBTeens A Private Deaf-Blind DiscussionList for Teenagers and Young Adults. Thepurpose of this list is to share information, in-quiries, ideas and opinions about deaf-blind-ness and other issues. This is a private list forteenagers and young adults. To subscribe,contact owner Randy Klumph<klumphr@wou.edu>.

_

;

O I enjoyed this issue of Deaf-Blind Perspectives but I am not on your mailing list. Please send future is-sues to the address below.

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All issues of Deaf-Blind Perspectives are available on the Internet at www.tr.wou.edultrldbp 1200

Deaf-Blind Perspectives is a free publication, published three times a year by the Teaching Research Division of Western Oregon University. The po-sitions expressed in this newsletter are those of the author(s) and do not necessarily reflect the position of the Teaching Research Division or theU.S. Department of Education. DB-LINK and NTAC contribute staff and resources for content, editing, and publication.

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Volume 8, Issue 3 Spring 2001

'Your Perspedive on Deaf- lind Perspectives

We are considering reducing Deaf-Blind Perspectives from 3 issues to 2 issues per year. We need toknow what you think of our publication as we consider its future. Do you look forward to receiving it?Do you ever refer back to it? Do you find it to be of value? How? Does it contribute to your family, work,and thinking? In short is DBP useful or important to you in any way?

Without the feedback of our readership we are left to only imagine DBP's utility. Please let us knowwhat you think either by email (malloyp@wou.edu or reimanj@wou.edu), fax (503-838-8150), phone(800-438-9376 voice or 800-438-7013 TTY), or letter (Attn: Peggy Malloy or John Reiman at Teaching Re-search, 345 N. Monmouth Ave., Monmouth, OR 97361).

Seattle Lighthouse for the ;RindDeaf-Blind Program Federal Funding

Paula Hoffman

or nearly 30 years, the Seattle Lighthouse has provided a wide range of services and support to Deaf-Blindpeople in the areas of employment, skills training, social activities, leadership development, interpreting, andmuch more. Over the years, the Deaf-Blind community in Seattle has grown significantly, and demand forser-vices has increased. To enhance and expand our current program, we requested funding from the federal gov-ernment and in June 2000 received a federal appropriation of $1,849,000 for services for Deaf-Blind people. Inthis article I will share with you the process involved in obtaining the funding and how the money will beused.

Previous 'Funding SourcesThe Seattle Lighthouse Deaf-Blind Program was initially funded for three years in the early 1970s by seedmoney from the Helen Keller National Center The program later grew to be self-sufficient through Light-

house business operationsthe sale of products manu-In This Issue factured at the Lighthouse and business -service con-

tracts. For example, we have a large aerospace contractSeattle Lighthouse for the Blind Deaf-Blind with the Boeing Company to manufacture over 10,000

parts. We also have manufacturing and business serviceInteractive Storytelling for Deafblind contracts with the General Services AdministrationChildren (GSA) to make a variety of products including easel

Personal Perspectives 9 boards, paper trimmers, canteens, and safety clothing.Personal Retrospective 10 And we have a custom business product line that in-NTAC Update cludes awards, certificates, rubber stamps, and business

cards. The sales of these products and services pay forsuch business expenses as machinery, payroll, buildingspace, and until recently, our services. Another small

Workshops and Conferences 13 source of funding comes from state rehabilitation andAnnouncements 14 telecommunications access program dollars.

Program Federal Funding

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Access to Multimedia on the Web 13

For Your Library 13

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As the Deaf-Blind community grew, largely becauseof the relocation of Deaf-Blind people to Seattle fromother states, demand for our services increased be-yond the capacity of the funds received throughbusiness operations and other sources. We also feltthat it was not wise to have our services so largelydependent on business operations funds, which canfluctuate if there is a lull or downturn in business. In1996 the Lighthouse made a commitment to seekfunding to support growth in services, augment op-erations dollars, and protect services throughdownturns in business cycles.

The Funding Request ProcessIn the late 1990s, I attended two national confer-ences that focused on legislative education. One wassponsored by the National Industries for the Blind,and the other, the Josephine L. Taylor Leadership In-stitute, was sponsored by the American Foundationfor the Blind. Both conferences, held in WashingtonDC, emphasized the importance to organizationsserving blind individuals of meeting with and edu-cating legislators about their organizations' activi-ties and needs. The conferences covered topics suchas how to make appointments with and talk to legis-lators and included visits to Capitol Hill. Using thisinformation, our staff at the Lighthouse began tovisit our legislators every time we traveled to Wash-

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ington, DC, for conferences, business, or personalvacations.

We began by meeting with senators and representa-tives from Washington State. Many were already fa-miliar with the Lighthouse name but were amazedto learn about the variety and scope of our trainingprograms and support services. Congressional staffexpressed great interest in and support of our pro-gram and understood that, although the serviceswere located in Seattle, they had a national impact.In 1999, two of Senator Patty Murray's staff visitedthe Lighthouse. At the end of the visit we werethrilled when one said, "The Lighthouse rocks!!How can we help?"

We were fortunate that both of our senators fromWashington State (one Democrat and one Republi-can) were on the Senate Appropriations Committeeand on the Labor, Health, and Human Services(LHHS) subcommittee. They introduced our re-quest and supported it during committee discus-sions. Our team, led by Mark Landreneau, includedDeaf-Blind people from Seattle and other states.Our program has always embraced and lived a phi-losophy of empowerment. Therefore, it was criticalto us that visits to legislators include blind andDeaf-Blind people who were employees, staff, orparticipants in our programs. We deeply appreci-ated the support of Janie Neal, Maria Garden, JeffFoster, and others, who made personal visits to theoffices of all the committee members. We provided

Deaf-Blind PerspectivesVolume 8, Issue 3

Spring 2001

++++++.1+

Executive Editor Managing Editor Production EditorJohn Reiman Peggy Malloy Randy KlumphTeaching Research Teaching Research Teaching Research

Consulting EditorsHarry Anderson, Florida School for the Deaf and Blind; Vic Baldwin, Teaching Research; Chigee Cloninger, University of Vermont;Mike Collins, Perkins School for the Blind; June Downing, California State University Northridge; Bud Fredericks, Editor Emeritus;Jay Gense, Oregon Department of Education; Karen Goehl, Indiana Deaf-Blind Project; Lori Goetz, San Francisco State University;Richelle Hammett, New Mexico Deaf-Blind Program; Gail Leslie, Teaching Research; Betsy McGinnity, Perkins School for the Blind;Barbara A. B. McLetchie, Boston College; Kathy McNulty, Helen Keller National Center; Nancy O'Donnell, Consultant; Marianne Rig-gio, Perkins School for the Blind; Art Roehrig, Gallaudet University; Rosanne Silberman, Hunter College.

Deaf-Blind Perspectives considers all unsolicited manuscripts and employs a review process to consider whether they will be published.Some manuscripts may receive anonymous peer review. Send both a printed copy and a disk copy (Windows format) to:

Teaching Research Division345 N. Monmouth Ave.Monmouth, OR 97361

Deaf-Blind Perspectives

www.tr.wou.edu/tr/dbp

Ph. (503) 838-8391TTY (503) 838-8821Fax (503) 838-8150

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training and practice sessions to our team memberson how to give effective presentations. The teamvisited congressional offices on both the Senate andthe House sides. Overall, we made more than 60personal visits, all with Deaf-Blind people makingpresentations.

We used interpreters from the Seattle area whoknew the people making the presentations, whoknew about our community and our organization,and who understood the signs and acronyms wecommonly used. There were at least six interpreters,both Lighthouse staff and freelance, who providedincredible interpreting, guiding, and support ser-vices for Deaf-Blind team members.

Our team knew that we had to be flexible. Congressis a place where things happen at the very last min-ute, and there were many things that we could notcontrol. Sometimes we weren't able to meet with thepeople we expected to meet. We were often in envi-ronments where we couldn't control factors that af-fected communication, such as lighting, glare, andseating arrangements. We were working with peo-ple who were not used to communicating via inter-preters and who talked quickly and asked lots ofquestions. Meetings were sometimes very short butwere always important, and we learned to say whatwe needed quickly. We let them know who we wereand what we did, and we asked for their support forour funding request. Often, the people we spokewith became so interested in what our Deaf-Blindpresenters were saying that they extended the ap-pointment time.

We developed printed materials to give the legisla-tive staff more details about our request, back-ground information about the Lighthouse, andcontact information. We also brought "props" withus to demonstrate some of the products we makeand the unique adaptive technology that we utilize.

During the time that we were making our fundingrequest) we also contacted supporters of the Light-house (Deaf-Blind people, family members, friends,and interpreters) from other states who had sena-tors and representatives on the appropriations com-mittees. We asked them if they would be willing towrite letters of support to their senators. Because theLighthouse has always included Deaf-Blind peoplefroin other states and nations in its services, we hada large network to draw from. We also received let-ters of support from national organizations. Wewere able to show members of Congress that weprovided a valuable national service through ourprograms.

Once the deliberations of the subcommittee towhich we had made our request were completed,

Spring 2001

we had to wait throughout the summer and earlyfall while the entire Senate Appropriations Commit-tee made its final decisions.

Finally the Senate finished its work on the appropri-ations budget and supported our request for 4 mil-lion dollars. The budget then went to the House fordiscussion and approval, and there our request wasreduced to 2 million dollars. In November 1999 theappropriations budget was finalized, and Congressdecided to award 2 million dollars to the SeattleLighthouse for its services for Deaf-Blind people.Congress also decided that the appropriate depart-ment to oversee this funding was the Department ofEducation under the Rehabilitation Services Ad-ministration. As part of later overall budget cuts, theamount was reduced to $1,849,000. We have fiveyears in which to use these funds.

How the Federal Funds Will e UsedSeventy-five percent of the new federal funds willbe used to hire new staff, expand existing services,and fund new projects. Twenty-five percent will beused to maintain existing services. We currentlyhave 15 staff members and serve between 175 and200 Deaf-Blind people annually through our com-munity-based services. Prior to receipt of the federalfunds, our annual operating budget was just over amillion dollars.

It has become necessary for us to expand our ser-vices for two reasons. First, we have experienced asteady growth in the number of people requestingand receiving our services, without having experi-enced an increase in staffing. Second, a large propor-tion of Deaf-Blind people in Seattle have UsherSyndrome, a condition in which vision loss is pro-gressive. As vision decreases, so does each individ-ual's need for more training and new technologicaladaptations. For the Lighthouse, this requires in-creased services, staff, interpreters, and time.

The type of new and expanded services was deter-mined by direct feedback from Deaf-Blind people,and they include services that Deaf-blind peoplehave repeatedly requested. The purpose of some ofthe new projects is to share information with agen-cies and organizations outside of the Seattle areathat would like to replicate our service models aswell as other service models in the SeattleDeaf-Blind community. We have received numer-ous requests for this from Deaf-Blind people fromother states. Until now, our ability to assist others indeveloping their own community services has beenhampered by insufficient funding.

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The following sections describe some of our preex-isting services, services that are being expanded,and new projects.

Preexisting Services

Employee Support. The Lighthouse currently em-ploys 300 people. Forty-three of these employees areDeaf-Blind. Employee support includes vocationalassessment and training, technical assistance on thetopic of deaf-blindness, and provision of informa-tion about work-related. issues such as co-workercommunication.

Independent Living Training. We have a variety ofindependent living classes that teach such skills asbanking, cooking, managing personal documents,and home buying.

Other Services. Other preexisting services includeinterpreting, orientation and mobility training, andtelecommunications and equipment support. Wealso offer training and skill-building activities to in-terpreters and other professionals.

Expanded services

Deaf-Blind Community Class. This class meets ev-ery two weeks during the school year and is at-tended by between 25 and 35 Deaf-Blind people,who select and develop the topics. The new federalfunds will be used to increase staffing, to train andsupport volunteer interpreters and other volun-teers, and to provide some summer class activities.We are also now able to fund a core interpretingteam, and we have added a much neededDeaf-Blind Community Class assistant position.

Dog Guide Support Groups. This is a new programoffered through our orientation and mobility ser-vices. It will give dog guide users an opportunity toget together to review responsibilities, learn moreabout caring for their dog guides, and to commiser-ate and laugh about daily experiences. Twelve sup-port groups will meet over the duration of the grant.The initial groups will each have five members andwill grow as additional dog guide users join thegroup.

Internship Coordination. We have provided inter-preter internships for two decades, but during thelast few years we have only been able to providethem infrequently because of other demands on ourinterpreting staff. We will now be able to offer morefrequent internships, which will make it possible totrain more interpreters skilled in the specialty areaof deaf-blindness. The service also has the potentialto offer internships to Deaf-Blind people who are in-terested in teaching or coordinating events such asretreats, large meetings, and community classes.

Spring 2001

Computer Training. There has been a high demandfor classes on personal computer use. As part of ourindependent living training program, we will nowoffer computer training that will focus on homecomputer use, troubleshooting, setting up equip-ment, and learning about e-mail, the Internet,on-line banking and grocery shopping, and trans-portation planning. Further expansion of this pro-gram, pending funding, will concentrate onwork-related computer training.

Deaf-Blind Weekend Retreats. Our annualDeaf-Blind retreat is usually only able to accommo-date approximately 50 to 55 people and we have al-ways had more applicants than we have been able toaccept. For the last 23 years it has been open toDeaf-Blind people throughout the United States andfrom other countries. This year we have already had45 out-of-state and international applicants. Our lo-cal community has grown so large that more recre-ational and peer support opportunities are nowneeded. We are adding two weekend retreats peryear, plus an additional weekend retreat designedto meet the needs of developmentally disabledDeaf-Blind adults.

Health, Exercise, and Nutrition Classes. Weeklyexercise classes will be offered beginning in March2001. Six to ten Deaf-Blind participants will join theinitial exercise class. A water aerobics class isplanned later in the year.

Research and Development of Adaptive Equip-ment. The Lighthouse has unique needs for adap-tive technology in our production and businessservices departments. Much of what we need doesnot exist elsewhere. For example, machinists use ameasurement tool called a caliper. The ability to usecalipers skillfully is one of the steps toward upwardmobility for machinists. Calipers generally comewith a digital display, which cannot be read easilyby people who have low-vision or are fully blind.Calipers have been adapted by the Lighthouse to in-corporate voice read-out, so that blind people areable to utilize them. Now, we are researching anddeveloping new technologies to also enableDeaf-Blind people to use calipers. In addition toneeding a Braille display, they must be lightweightand portable. Braille displays are exceedingly sensi-tive to dust, grease, and other environmental fac-tors. This new technology is being designed andtested with Deaf-Blind people.

New Projects

Louisiana Deaf-Blind Community LeadershipProject. We have had repeated requests from mem-bers of the Louisiana Deaf-Blind community in theLafayette area to provide training and support to

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help them replicate some of our service models intheir state. The Louisiana community has the largestpopulation of individuals with Usher SyndromeType 1 in the country. Members of this communityhave made frequent trips to Seattle for theDeaf-Blind retreat, job evaluations, and other ser-vices. They are comfortable with the way our ser-vices are designed and implemented. Training forpeople from Louisiana is a high priority for us be-cause of the potential positive impact for a largenumber of Deaf-Blind people.

Washington, DC Interpreter Training inDeaf-Blindness Project. In response to requestsfrom Deaf-Blind people in the Washington, DC,area, and added to our own observations and thoseof Congressional staffers regarding a need for inter-preters skilled in the specialty of deaf-blindness, wehave developed an intensive training course inDeaf-Blind interpreting. The first course took placein February 2001. Two interpreters from Washing-ton, DC, participated in workshops and providedinterpreting in supervised settings including ourDeaf-Blind Community Class, large employeemeetings, and a weekend Deaf-Blind retreat.Deaf-Blind people served as presenters and pro-vided support to those trainees. Videotaped andprinted materials were developed to support thetraining. We are working with the Metro Washing-ton Association of the Deaf-Blind (MWADB) to pro-vide future training opportunities.

Leadership Training. Training similar to that beingoffered to the Louisiana group will be offered to asmall number of Deaf-Blind individuals from otherareas. The format of the training will be an extendedweekend and will involve skills training, observa-tion, and peer support. Due to the high volume of in-terpreting and other supports needed to providethese trainings, the number of participants will besmall.

Community Support Projects. Projects in Seattlethat we are supporting include support service pro-vider training offered by the Deaf-Blind ServiceCenter, and web site development for WashingtonState Deaf-Blind Citizens.

Next StepsThe Seattle Lighthouse Deaf-Blind Program is partof a coalition of individuals and agencies in the Seat-tle Deaf-Blind community working together as partof a Deaf-Blind task force to develop future federalfunding opportunities. The other task force partici-pants include Parents and Friends Together for Peo-ple with Deaf-Blindness, the Deaf-Blind ServiceCenter, Washington State Deaf-Blind Citizens, the

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Helen Keller National Center Regional Office, aswell as other organizations.

The Seattle Deaf-Blind community and theDeaf-Blind Program at the Lighthouse have awell-deserved national reputation for quality ser-vices, expertise, leadership by Deaf-Blind individu-als, and employment opportunities that drawDeaf-Blind individuals, service providers, and in-terpreters from throughout the United States. Weare honored to have this distinction and this won-derful national treasure in our own backyards. Webelieve that our community-based model deserveslong-term support from government sources, aswell as from private individuals and foundations.We will continue to work together toward pursuingfunding from these sources.

Seattle Lighthouse web site:http:/ /www.deafblindlh.com

Paula Hoffman is the Director of External Affairs and Reha-bilitation Services at the Seattle Lighthouse for the Blind.She has managed the Deaf-Blind Program for 12 years.Paula first became involved in the Deaf-Blind Communityin 1980 when she was an interpreting student and volun-teered at the Deaf-Blind Retreat and Deaf-Blind Commu-nity Class. She joined the Lighthouse staff in 1984 and hashad wonderful opportunities to learn from Deaf-Blind peo-ple. She is an honorary lifetime member of Washington StateDeaf-Blind Citizens.

4.++lInteractive Storytelling for

Deafblind ChildrenKeith Park

Meat of the Tongue, a Swahili story from AngelaCarter's collection of fairy tales (1991), tells of a sul-tan whose unhappy wife grew leaner and more list-less every day. The sultan saw a poor man whosewife was healthy and happy, and he asked the poorman his secret. "Very simple," answered the poorman, "I feed her meat of the tongue." The sultan im-mediately ordered the butcher to buy the tongues ofall the slaughtered animals of the town and fed themto his wife. The queen became even thinner andmore melancholy. The sultan then ordered the poorman to exchange wives. Once in the palace, the poorman's wife grew thin and pale. The final part of thestory goes as follows:

The poor man, after coming home at night, wouldgreet his new (royal) wife, tell her about the things hehad seen, especially the funny things, and then told

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D f.Blind Per p rives

her stories which made her shriek with laughter. Nexthe would take his banjo and sing her songs, of whichhe knew a great many. Until late at night he wouldplay with her and amuse her. And lol the queen grewfat in a few weeks, beautiful to look at, and her skinwas shining and taut, like ayoung girl's skin. And shewas smiling all day, remembering the many funnythings her new husband had told her. When the sul-tan called her back she refused to come. So the sul-tan came to fetch her, and found her all changed andhappy. He asked her what the poor man had done toher, and she told him. Then he understood the mean-ing of meat of the tongue. (p. 215)

Storytelling, it seems, is a vital ingredient of humanexperience. But if this is so, how can we do storytell-ing with people who have sensory losses and addi-tional disabilities? Why should we bother? JeanWare (1994) provides an answer when she suggeststhat, in choosing activities for people with profoundand multiple disabilities, the aim should be "en-abling the child to participate in those experienceswhich are uniquely human" (p. 71). Storytelling isone of these uniquely human experiences. Whetherit is legend, myth, folktale, fairy story, poem, novel,film, or play, the principle is the same: everyone ev-erywhere enjoys stories. According to the storyMeatof the Tongue, this need is universal.

Enteractive StorytellingI work as an advisory teacher for Sense (the NationalDeafblind and Rubella Association of the UnitedKingdom) in Greenwich and Lewisham (South Lon-don). As part of my work, I support children andyoung people between birth and 19 years of age whohave a wide range of sensory losses, includingdeafblindness, and who may also have cognitive orphysical disabilities. I began to adapt stories and po-ems for interactive storytelling for two main rea-sons. First, classroom teachers were asking me tosuggest activities that could be used with theirwhole group. Second, I was considering the implica-tions of the story Meat of the Tongue and wondering ifit were possibleat a time when so much of an indi-vidual education program is based upon meetingthe different needs of each personto developgroup activities based upon what people have incommon: being human. Although children who aredeafblind and have cognitive disabilities may not beable to understand the actual words of a story, theycan still participate and be involved in the activity ofstorytelling. Introducing their adaptation ofHomer's Odyssey for individuals with severe andprofound disabilities, Grove and Park (1996) ask,"How necessary is verbal comprehension to the un-derstanding of poetry and literature? We know thatpeople with profound learning disabilities can enjoy

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music, so why not the music of words? Do we haveto comprehend before we can apprehend? Does the'meaning' of a poem or story have to be retrievecLthrough a process of decoding individual words, orcan it be grasped through a kind of atmosphere cre-ated through sound and vision?" (p. 2). How cansuch an atmosphere be created for deafblind chil-dren, who have incomplete access to sound and vi-sion? One possible way is to make the interactivestorytelling percussive: to use stamping and clap-ping or musical instruments to accentuate thevibro-acoustic element of the activity.

Grove (1998) states that "Meaning is grounded inemotion, or affect, which provides the earliest andmost fundamental impulse for communication" (p.15). The basis of interactive storytelling is to empha-size meaning by generating an emotional responseto the story.

Following are four examples of storytelling activi-ties that have been made accessible for children whoare deafblind and have cognitive disabilities. All ofthe stories are were written specifically for the chil-dren mentioned and for the group they are in at theirvarious schools. For these children, rhythm, repeti-tive patterns, and percussive methods are used toemphasize the meaning and feeling of each story.Participants in the story include the children, theirteachers, other staff members, and parents or visi-tors who wish to be involved.

Little Red Riding Hood

A version of this famous folktale was designed forJoe who is four years old and deafblind, although hehas some useful vision. The story consists of threegames in which the children take turns acting outthe parts of the Wolf, Little Red Riding Hood, andGrandmother. Each game tells a part of the story us-ing a call-and-response method. This means thatone person or part of the group calls out one line andthen the others call out the response line or carry outan activity such as knocking. The first game is called"Grannie To Go."

Game 1: Granny To Go

Storyline: Little Red Riding Hood has gone to see herGranny, but the Wolf has gotten there first.

The children and staff sit in a circle. The Wolf playedby one of the children, prowls around the inside ofthe circle. He pretends to be Little Red Riding Hoodand has a dialogue with the rest of the group, whoare all Grannies, as follows (all call-and-responsesare chanted as the rhythm is stamped on the floor orpounded on drums):

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Call Response

"I knock on the door." (knock four times)

"She says 'Who's there?" "Who's there, who'sthere?"

"Red Riding Hood.""Red Riding Hood."

"And I go IN."

At the beginning of the last line, the Wolf points to avictim, approaches him, and then "gets" him. Thegroup can be divided into call-and-response parts inany combination, so that each child can have a turndoing the call line (initiating the communication)and the response line (responding to a communica-tion). Each call line and response line is of equal du-ration (four beats). Although Joe does not verballyparticipate in the call-and-response, what is impor-tant for him is not the verbal comprehension of thestory itself, but the rhythm of communicationwithin the context of the story. By being involved inthe storytelling activity, he learns important com-munication skills: awareness of others, anticipatinghis turn, developing an awareness of rhythm, anddeveloping an anticipation of the end of each sectionof the story, when he is either caught or "got" (a par-ticular favorite for Joe) or does the "getting" himself(as the Wolf, for example). When Joe takes his turn atbeing the Wolf, he is supported in moving aroundthe circle.

The Three Little Pigs

Daniel is six-years old. He is totally blind but has alittle hearing. Before this storytelling activitystarted, he was very tactile defensive. He wouldthrow objects, but he didn't like to handle them. Oneof the aims for Daniel was to encourage him to reachfor, feel, explore, and release objects. I decided to ex-plore this activity within the context of a popularfolktale. When enacting the story of The Three LittlePigs, Daniel and the children in the group each havea small box of objects and a basket. The box is placedto the left of each child and contains some bits ofstraw, several sticks tied together (for the roof ofsticks), some pieces of brick for the house of brick, apiece of fake fur for the wolf, and a sprayer for a staffmember to use with the group as the wolf falls in thecooking pot. At the beginning of each activity, thechildren are encouraged to reach and grasp the ap-propriate pieces of material, hold them, and then re-lease them into the baskets placed on their right side,and then activate, with the same movement, a com-munication aid (a switch device containing a prere-corded message) that has a crash sound recorded onit. The narrator speaks the introductory line, and therest of the story follows in call-and-response style,each line of which (apart from the final section) istwelve beats. The strong repetitive rhythms, com-

Spring 2001

bined with the call and response, encourage chil-dren to become more engaged in the activity. Aswith all the other story activities, the aim is not anunderstanding of the storyline, but an engagementin the communication implicit within the storytell-ing. Following is the first of the four episodes of thestory:

Once upon a time there were three little pigs. Thefirst pig built a house of straw. The wolf came to thedoor, and said:

Little pig, let me in, little pig, let me in! (mimeknocking on the door)

No, no, no, by the hair on my chinny chin chin!(signing "no, no, no")

Little pig, let me in, little pig, let me in! (mimeknocking on the door)

No, no, no, by the hair on my chinny chin chin!(signing "no, no, no")

Then I'll huff, and I'll puff, and I'll blowyour housedown (holding then releasing the straw)

And he huffed (gasp), and he puffed (gasp), andhe blew the house down! (Everyone falling side-ways to drop the object and activate their switchthat says "crash1")

The Story of Joseph (from Genesis 39-45)

Several years ago while on holiday in Denmark, Iparticipated in a "circle dance." This, I was told, wasa traditional Scandinavian method of storytelling(and not really a dance at all) where the storytellerstands in the middle of a circle of people and chantsa story. The story itself usually has a strong rhythmand quite often an eight beat line. The storytellerchants two or three lines, and then the participantsreply with an equally rhythmic chorus. As the storyprogresses, the circle of people moves around andaround the storyteller. My enjoyment of the socialactivity was not affected by my almost nonexistentDanish. I was able to witness and experience thehypnotic power of the rhythm of the story, the repe-tition of particular phrases, and the responses of theparticipants.

In 1855 Henry Wadsworth Longfellow read a trans-lation of the epic myth cycle of Finland, The Kalevala,and he was inspired by its pounding rhythm towrite his poem Hiawatha, using a similar technique:

Should you ask me, whence these stories,Whence these legends and traditions,With the odors of the forest.With the dew and damp of meadows,...

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He continues to the introduction of the main charac-ter:

There he sang of Hiawatha,Sang the Song of Hiawatha,Sang his wondrous birth and being,How he prayed and how he fasted,...(Longfellow, p.13-15)

Like its inspiration, The Kalevala, this is a poem forreading aloudfor performance and participation.So, back in Greenwich and Lewisham, I adaptedsome of these techniques of traditional storytellingto use in the classroom, using the three R's: rhythm,response, and repetition.

Jon is 16-years old and has severe vision and hearingloss. He needs support when walking because he isvery unsteady on his feet, but he does enjoy walk-ing. Since Jon seems more alert when walking, wedecided to try to develop his communication skillswithin the context of a story and while "on themove": moving round in a large circle during thestory. This version of the story of Joseph, written forJon and his group, is taken from Genesis 39-45 (us-ing, with only slight adaptations, the language of theKing James Bible) and uses this same Hiawatha me-ter (plus a fourth line of six beats as the response) toprovide the rhythm for the step dance. It uses acall-and-response techniquea rhythmic exchangeof commentary between the storyteller and the storyparticipants. This is the first of six sections, therhythm of which should be apparent on reading outloud:

Joseph was the son of Jacob

Jacob dwelt within the country

Where his father was a stranger

In the Land of Canaan

Born to Jacob in his old age

Jacob loved his son called Joseph

More than all his other children

In the Land of Canaan

All the brothers hated Joseph

With his coat of many colors

For his dreams and for his stories

In the Land of Canaan

"What is this dream that thou hast dreamed?

Shall we bow down ourselves to thee?"

And so his brothers envied him

In the Land of Canaan

Then they said to one another

Look this dreamer cometh to us

Shed no blood but let us sell him

In the Land of Canaan

Took the coat of many colors 428

Dipped the coat in blood of goat and

Brought it to their father Jacob

In the Land of Canaan

"This have wefound" and Jacob saw

"Joseph has been rent in pieces"

Thus his father wept for him

In the Land of Canaan.

Macbeth

Spring 2001

Three years ago I went to the newly opened Shake-speare's Globe Theatre to see a performance ofHenry V. Before the play started, all the actors cameout onto the stage, faced the audience, and then be-gan, slowly and rhythmically, to beat woodenstaves on the stage floor, summoning the attentionof everyone in the audience to the beginning of theplay. The effect was dramatic in every sense of theword. The wooden stage is 40 feet (13 meters) longand resonated very loudly. The thought came tomind: Why not try a Shakespeare workshop, usingthe vibro-acoustic properties of the stage at theGlobe Theatre?

Nicole is 13-years old and deafblind. To include herin the group, an ocean drum is placed on her laponto which the rhythm of the storyline is tapped. Anocean drum is a large tambourine with ballbearingsinside it. When moved, it produces a sound effectsimilar to waves breaking on a beach. Staves, firstheard in the Henry V production, are used to drumthe rhythm of the call-and-response exchanges ontothe stage. Here is an extract of poetry from theMacbeth poetry workshop that we stamp out on-stage. Like all of the examples, this is easier to dothan it is to describe, so I would recommend thatreaders try it for themselves. A steady beat (one beatper second) combines with the words to create apowerful atmosphere. Nicole enjoyed her experi-ence of conducting the group in the recital, and theparticipants demonstrated a greater awareness ofher as a member of the group.

Double, double toil and trouble

Fire burn and cauldron bubble.

Fillet of a fenny snake,

In the cauldron boil and bake:

Eye of newt and toe of frog,

Wool of bat, and tongue of dog,

Adder's fork, and blind-worm's sting,

Lizard's leg, and howlet's wing,

For a charm of powerful trouble,

Like a hell-broth, boil and bubble.

Double, double toil and trouble,

Fire burn and cauldron bubble.

D f.Blind Perspectives

Shakespeareworkshop at theGlobe Theatre

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E7ir

,

ReferencesCarter, A. (1991). The Virago book of fairy tales. London:

Virago Press.

Grove, N. (1998). Literature for all. London: David FultonPublishers.

Grove, N., & Park, K. (1996). Odyssey now. London: JessicaKingsley Publishers.

Longfellow, H.W. (1901). The Song of Hiawatha. Boston:Houghton Mifflin Company

Ware, J. (Ed.). (1994). Educating children with profound andmultiple learning difficulties. London: David FultonPublishers.

ConclusionWe are experimenting with many other adaptations ofstories and poems, including traditional folktales, po-etry, and literature. Anyone who would like more in-formation is welcome to contact me at the e-mailaddress below. We would particularly like to hearfrom anyone in the United States who would like tocollaborate on adapting American stories and poetry.

Angela Carter suggests that "for most of human his-tory, 'literature,' both fiction and poetry, has been nar-rated, not writtenheard, not read" (1991, p. ix). Theliterature of fiction and poetry from around the worldhas existed in oral form for many thousands of years,long before the development of the comparatively re-cent forms of writing, printing, radio, TV, cinema, andthe Internet. The oral narration of stories was, and of-ten still is, a social event in which the story was sung,spoken, or chanted, or in other words, performed. Justas storytelling has been the precursor of reading andwriting, the starting point for the appreciation of liter-ature may be in the performing of stories. For peoplewith sensory impairments and for those with cogni-tive disabilities, the challenge is finding a means of ac-cess.

Email: keith@busheyhillrd.demon.co.uk

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Persona' PerspectivesPeggy Malloy

"Personal Perspectives" is a column about deaf-blind people,their families, friends, and the people who work with them.This column features John Reiman, director of DB-LINK andexecutive editor of Deaf-Blind Perspectives. Also in this issue is anarticle by Dr. Mike Steer that gives a historical perspective of Al-ice Betteridge, a deaf-blind Australian woman who lived from1901 to 1966.

ohn Reiman first became involved with deaf-blindpeople when he lived in Tallahassee in the early 1970s.While working as a therapist at the Florida State Hos-pital, he was in contact with many deaf patients but atthat time did not know how to sign. Through the Tal-lahassee Association of the Deaf, John met Nora and

D taind Perspe rives

David Lawrence (deaf and deaf-blind respectively),who subsequently invited him to live with them. Dur-ing the two-plus years he lived at the Lawrence'shome (a hub of the deaf community), he learnedAmerican Sign Language and met, worked, and so-cialized with many deaf and deaf-blind people. Thoseearly experiences led to years of involvement withdeaf-blind people and work related to deaf-blindness.

John has had an interesting and varied career. He hasmaster's and doctoral degrees in counseling and hasworked as a therapist in private practice and for publicand private agencies. He has also worked as an inter-preter and as a director of educational programs andprojects. He was director of the first associate of artsdegree program in interpreting for hearing students atGallaudet University, director of Oregon's ResidentialMental Health Program for the Deaf (WoodstockHouse), and later, director of the Rehabilitation Coun-seling in Deafness Program at Western Oregon Uni-versity. Currently, he works at Teaching Research,also at Western Oregon University, where he is direc-tor of the National Information Clearinghouse onChildren Who Are Deaf-Blind (DB-LINK) and is in-volved with other research and service projects.

In recent years, John has established a private practiceas a mediator, focusing on mediation in family, specialeducation, and-Americans with Disabilities Act com-pliance situations. He also works as a mediation spe-cialist on a federally funded technical assistancemediation project called CADRE (Consortium for Ap-propriate Dispute Resolution in Special Education).Throughout his career he has been involved withhearing, deaf, and deaf-blind people, and he hopesthat this trend will continue in his mediation work.

John met his wife, Carol Hennessy, at an American As-sociation of the Deaf-Blind convention in Seattle in1984 when they both attended as interpreters. Theyhave two children, Nathan and Kayla, and a golden re-triever puppy named Nikki. Everyone in the familyplays an instrument and enjoys music. John beganlearning to play the mandolin several years ago andsays it is one of his favorite activities.

John has several suggestions for improving servicesfor deaf-blind people. First, he believes that the integ-rity of deaf-blind language and culture must be main-tained and respected. Deaf-blind children shouldlearn about and be included in this culture. Second,more deaf-blind adults should be working in profes-sions related to helping deaf-blind children, includingteaching, technical assistance, research, and personnelpreparation. Third, he would like to see the establish-ment of an information center, similar to DB-LINK,that focuses on the information needs of adults whoare deaf-blind.

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John told me that he has been fortunate, that through-out his life, many work and other opportunities hayeseemed to open up for him at just the right time. Hehas been involved in a number of different types of ac-tivities, but through it all there has been a thread link-ing him to deaf and deaf-blind people. He says this hasbeen a wonderful opportunity to learn about and par-ticipate in unique cultures that he would not other-wise have experienced.

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Personal RetrospectiveAlice Betteridge

Australia's Helen Keller

Dr Mike SteerRenwick College

Royal Institute for Deaf and Blind Children

n Australia, the Royal Institute for Deaf and BlindChildren at North Rocks, a suburb to the north of Syd-ney, is widely regarded as one of the nation's majorprivate-sector special educators. It provides a wide ar-ray of educational services and supports to childrenand young people who have significant hearingand/or vision loss, including children who have addi-tional disabilities. It is also one of Australia's oldestmajor charitable organizations, founded in colonialSydney, New South Wales, in 1860.

Alice Betteridge, sometimes affectionately referred toas Australia's Helen Keller, was an outstanding stu-dent of the Institute's school, then called the NewSouth Wales Institute for the Deaf, Dumb, and theBlind, from 1908 to the 1920s. She was born in 1901 atSawyer's Gully in the Hunter Valley, a majorwine-producing district. As a child, she lost both hersight and hearing as a result of meningitis. Her teacherwas Roberta Sinclair Reid, a Sydney University gradu-ate (1904), whose role and career are in several waysanalogous to those of Anne Sullivan, Helen Keller'steacher.

In 1903, Roberta, or Berta as she was affectionatelyknown, was appointed teacher at the New SouthWales Institute for the Deaf, the Dumb, and the Blind,at that time located in Darlinghurst, next door to Syd-ney University, in a very handsome building that hassince become university property. No other school ex-isted in the colony at that time to educate children whowere blind, and there were no teacher-training courseswith the necessary content. So, untrained the new mis-tress at the institute certainly was. At the age of 20, shefound herself in charge of the "Blind School," as it wasknown, and of its 13 pupils.

4 4

She tried hard (mostly perhaps by trial and error) andlearned quickly. Early in 1905, Alice arrived with hermother for an interview. Alice was just four-years old.She was several years younger than the age at whichmost girls were admitted to the school and three yearsyounger than the age at which Helen Keller was ap-proached by teacher Anne Sullivan. She returned withher mother to her home near Maitland in the HunterValley and was finally admitted to the school whenshe was seven.

This was the beginning of a remarkable relationshipbetween Berta and Alice. Because of the school'steacher-student ratio, Alice was educated in a classwith the other children, unlike Helen's education,which was generally undertaken by Anne on aone-to-one basis.

Readers familiar with the Helen Keller story will recallthat the major breakthrough in Helen's education oc-curred when Anne ran water over her hands. With Al-ice, it was when a shoe was one day presented to her,after many years of repetition, and a pattern tappedonto her hand. Repetition had made the pattern recog-nizable. She first tapped the pattern onto her ownhand, then reached to touch the shoe. The all-impor-tant connection between pattern and shoe had beenmade.

Alice's education was a triumph. She became an avidreader. Her range of interests widened, and she even-tually graduated from the school in 1920 as its Dux(top student of the year). The gold medal she receivedis still in the possession of her family. Those who knewAlice testified that she was extremely well informedon current affairs. She was rarely idle and was highlyindependent. She kept her room and its possessionstidy and also helped with household chores. Shelearned to type and won prizes for her work in opencompetition. In 1930 she left Darlinghurst and movedback to her family's farm at the small township of Den-man. Little is known about her life there.

In 1939, Alice married a Victorian (a resident of theneighboring state of Victoria) named Will Chapman, aman who had been deafblind since the age of 21. Shemoved with Will from New South Wales to Victoria,where they lived happily for several years. In 1948,Helen Keller visited Australia and met Alice and Bertaat what was then called "The Blind School" at Wah-roonga, one of Sydney's most affluent suburbs. Threeweeks after the historic meeting, Alice's husband,Will, died.

In 1966, Alice herself died at Helen Keller House in theSydney suburb of Woolahra, aged 65. One of the fewjournalists who had interviewed her during her latteryears described her as "a fine woman of marked intel-lect." According to the matron of Hellen Keller House,

Spring 2001

she was "the most unusual woman I ever met."Valerie Thompson, her biographer (1990), stated thatwithout exception all who knew Alice found her "ahappy well-adjusted person and a joy to be with" (p.134). In 1990 the Royal Institute named its specialschool for children with multisensory disabilities TheAlice Betteridge School.

The Legacy

The Royal Institute's Alice Betteridge School (ABS) isnow a leading special school for children (aged 3 to 18)who have a sensory disability as well as, in some in-stances, an intellectual or a physical disability. It is lo-cated on the Institute's campus at North Rocks andprovides a wide range of educational, specialist, andtherapy services to approximately 80 students withhigh support needs. The school is recognized nation-ally and internationally for the high quality of its cur-riculum and staff. Each student at ABS receives ahighly individualized educational program throughwhich families and staff work in partnership. Thosewho visit the school are invariably impressed withwhat they see and hear. Its excellence is a fitting tributeto the memory of a truly remarkable Australian.

ReferenceThompson, V. (1990). A girl like Alice: The story of the

Australian Helen Keller. Sydney: North Rocks Press.

Special thanks to Alan Baynham, manager of the Royal Insti-tute's VisionEd Departnient for advice in writing this article.

.1.. + 0:0

_Jo

NTAC UpdateNTAC, the National Technical Assistance Consortiumfor Children and Young Adults Who Are Deaf-Blindprovides technical assistance to state deaf-blind pro-jects, families, and agencies throughout the UnitedStates. This column describes some recent state and re-gional activities, a national workshop for statedeaf-blind project staff, and the National Deaf-BlindCensus.

State and Regional ActivitiesArizona (Shawn Barnard)

In 1999, the Arizona Deafblind Project staff began astatewide intervener initiative. Under this initiative,students who are deaf-blind will have access to skilled

and knowledgeable interveners as determined by hisor her IEP team. In 2001, the first group of trained in-terveners and a group of trainers will receive certifi-cates of completion. A second group of intervenerswill complete the first phase of training. In October2000, a strategic planning meeting was held betweenNTAC, Arizona project staff, and project consultants.The meeting resulted in a three-year activity plan toestablish further state and local support, recruit addi-tional groups of interveners, and create a statewidenetwork to support interveners who currently workwith deaf-blind students.

Maine (Susanne Morgan)

Educators at Baxter School for the Deaf and other pro-fessionals throughout Maine have indicated a grow-ing need for information about Usher Syndrome. Tomeet this need, an Usher Syndrome awareness work-shop co-sponsored by NTAC is scheduled for April10, 2001. The workshop will provide introductory in-formation to educators and service providers. Addi-tionally, an interdisciplinary team will be created toestablish a statewide screening process for children atrisk for Usher Syndrome. Charlotte Cushman withCatholic Charities and the New England Center forDeaf-Blind Services will lead in coordinating theseevents.

Area 2 (Jon Harding, Jamie McNamara)Area 2 states: IA, IL, IN, KS, MI, MN, MO, ND, NE,OH, SD, WI

In the past, state deaf-blind project personnel have ex-pressed a desire to share information about technicalassistance (TA) issues with neighboring or regionalstate projects. Interest in holding a regional meetingwas again expressed at the Project Director's Meetinglast October in Washington, DC. As a result, NTAC of-fered to assist in arranging regional meetings during2001. Interest from Area 2 states has been strong. Aplanning committee with representatives from sevenstates is currently developing desired outcomes andselecting topics for a regional meeting to be held thissummer.

The meeting will consist of facilitated discussions ontopics including sharing resources across state lines,improving technical assistance delivery to families,and meeting the needs of an increasing deaf-blindpopulation with limited resources. States will have anopportunity to share successes as well as obstacles todelivering effective TA. The hope is that by coming to-gether, state projects in Area 2 can learn how tostrengthen their ability to better serve deaf-blind indi-viduals and families. All project staff, regardless ofgeographic size or political structure, have the samedesire to improve the lives of those whom they serve.Perhaps by sharing ideas and strategies in an Area 2

12

Spring 2001 =

regional meeting, NTAC can assist state projects toutilize existing resources more efficiently.

National ActivityAccessing the General Education CurriculumWorkshop

This past February, NTAC sponsored a workshop onhow to make general education curricula accessible todeaf-blind children and youth. The workshop, held inSan Diego, was attended by state deaf-blind projectpersonnel and other colleagues from approximately20 states. Mike Burdge from the University of Ken-tucky gave the keynote presentation. The main part ofthe workshopwas led by Kathy Gee of St. Mary's Col-lege in California. Dr. Gee presented specific strategiesto adapt local educational curricula to meet the needsand capabilities of individual deaf-blind children. Par-ticipants had an opportunity to practice using this in-formation and to share their own expertise whileworking in groups on sample case studies.

Annual Deaf- Cind Census is a GreatTool and Resource

Robbin Hembree

The submission date for the National Deaf-Blind Cen-sus is May 1', 2001. Each state and multi-statedeaf-blind project will submit specified data giving a"snapshot" of the deaf-blind population (birththrough age 21) in its service area as of December 1,2000. Information reported will include such items asdegree of vision loss, degree of hearing loss, educa-tional setting, age, and other data. The census willcompile data into a national summary, which can beused to identify national and regional areas of need.TeChnical assistance can then be geared toward pro-viding improved services based on these needs.

Because of the unique issues faced by individuals ex-periencing combined hearing and vision loss, organi-zations must provide services that take the specialdevelopmental and educational needs of deaf-blindchildren and young adults into account. When indi-viduals are not identified appropriately, they oftenwill not get services that meet their specific needs. Thestate and multi-state projects work very hard to iden-tify children and youth who are deaf-blind. They re-ported a total of 10,198 on the December 1, 1999,National Deaf-Blind Census. This compares to 1,609identified as deaf-blind age 6 through 21 (data are notavailable for ages birth through 5 years) on the Part BSpecial Education count that was reported in theTwenty-second Annual Report to Congress (U.S. De-partment of Education, 2000, p. II-20).

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P r fives

Not only does the National Deaf-Blind Census pro-vide a nationwide picture of children and youngadults who are deaf-blind in the United States, it is alsouseful for analyzing such things as the impact of Uni-versal Newborn Hearing Screenings on early identifi-cation, trends in etiologies resulting in deaf-blindnessacross the years, and disabilities in addition to hearingand vision losses that individuals who are deaf-blind,their families, and their service providers must ad-dress.

Our leap into the 21' century finds us continuouslyseeing significant changes that have an impact on thispopulation. Changes in such things as technology,medicine, and transportation systems all influencetypes of services and how services are provided. Datareported for the National Deaf-Blind Census are im-perative to help us keep up with the changing needs ofthis population and to provide information about thepotential impact of current and past services.

Reference

U.S. Department of Education. (2000). Twenty-secondAnnual Report to Congress on the Implementation of theIndividuals with Disabilities Education Act. Jessup, MD:Editorial Publications Center.

Note: For more information on the National Deaf-Blind Census contactRobbin Hembree, Deaf-Blind Census Coordinator, (503) 838-8806 orhembrr@wou.edu.

44+4444

Access to Mulltimedia on t le WebAndrew Kirkpatrick

Technical Project CoordinatorWGBH National Center for Accessible Media

Alternative ways of presenting information usingvideo, audio, animation, and interactive content arebecoming much more common on the Web. Much ofthe technology used to create and play these types ofmedia, however, present significant barriers to peoplewith disabilities. A new project that will address thesebarriers was recently started at The Corporation forPublic Broadcasting/WGBH National Center for Ac-cessible Media (NCAM). The project, NCAM's AccessSolutions for Rich Media: Tools, Pathways, and Re-sources, is funded by a three-year grant from the Na-tional Institute on Disability and RehabilitationResearch (NIDRR), U.S. Department of Education.NCAM will work with researchers, technology devel-opers, Web designers, and consumers to find solu-tions that enable deaf, blind, deaf-blind,hard-of-hearing, and low vision Web users to benefitfrom Web sites that use multimedia.

13

Spring 2001 ,===

For more information about specific resources andtechnblogy, visit NCAM's Rich Media AccessibilityWebsite (http: / /ncam.wgbh.org/webaccess / arm).The purpose of the site is to serve as a centralizedsource of information and tools for multimedia accessissues. It will offer user-friendly tutorials, showcasesolutions, and maintain a library of other access solu-tions to make rich media accessible to blind and deafWeb users.

Andrew Kirkpatrick can be reached by e-mail atandrew_kirkpatrick@wgbh.org

For Your libraryMeeting Physical and Health Needs of Childrenwith Disabilities: Teaching Student Participationand ManagementHeller,K.W. Forney, P.E., Alberto, P.A.., & Goeckel T.Wadsworth Publishing, 2000.A text for pre-service special education teachers abouthow to teach children with physical disabilities andhealth impairments (e.g., orthopedic impairments, vi-sual impairments, deaf-blindness).

The Transition Process: Early Intervention to Pre-schoolAlsop, L., Olsen, S., & Risk, T. Logan, UT: HOPE, Inc.,2001.Resource materials for service providers and inter-vention teams involved in transitioning children withspecial needs from early intervention to preschool set-tings. Includes a training manual with accompanyingvideo tape, and a DVD to use for self-study. Prices:Training Manual $50.00, Video Tape $40.00,Self-Study DVD $40.00, Complete Set $110.00.Available from HOPE, INC., 1856 North 1200 East,North Logan, UT 84341. Tel./Fax 435-245-2888,http: / /www.hopepubl.com

Wor <shops and ConferencesWorkshops on Communication Strategies forChildren with Severe and Multiple Disabilities

A two-day workshop presented by Charity Rowland,Ph.D. and Philip Schweigert, M.Ed. from OregonHealth Sciences University will be held at three loca-tions this summer and fall. The workshop, is designedto teach professionals and parents how to help non-

4 7

De 1.1:11ind Persp ctives

verbal children with severe disabilities communicatetheir needs to care givers and teachers. It addressesPre-symbolic Communication and Tangible SymbolSystems. A special half-day seminar for parents is alsooffered, free of charge.

Charleston, SC, July 26-27, 8:30 a.m. 5:00 p.m.,Registration deadline: June 25 or until filledParent seminar: July 28, 9:00 a.m. - 1:00 p.m.

New Orleans, LA, Sept. 13-14, 8:30 a.m. 5:00 p.m.,Registration deadline: Aug. 15 or until filled.Parent seminar Sept. 15, 9:00 a.m. - 1:00 p.m.

Baltimore, MD, Oct. 25-26, 8:30 a.m. 5:00 p.m.,Registration deadline: Sept. 25 or until filled.Parent Seminar Oct. 27, 9:00 a.m. - 1:00 p.m.

Also offered this summer cooperatively with PortlandState University is the second annual OHSU Seminaron Communication Intervention, covering similartopics at the following location:

July 9-10, 2001Mt. Bachelor Village Resort, Bend, OR8:30 a.m. 5:00 p.m.,Registration deadline: June 15 or until filled.

Contact:Alexandra Dorinson800-410-7069 ext. 102dorinson@ohu.eduhttp:/ /www.designtolearn.com

5th DbI European Conference on DeafblindnessSelf determination a life long process

July 24-29, 2001Noordwijkerhout, The Netherlands

Contact:Stichting 5th DbI European ConferenceDeafblindnessAnneke Balder,c/o Unit Deafblindness of sDGPO Box 2223500 AE UTRECHTTel: + 31 30 2769970Fax: + 31 30 2712892sdg@wxs.n1http:/ /www.deafblindinternational.org

Spring 2001

Box 7150TikipungaWhangareiNew ZealandTel: 0064 9 437-6639Fax: 0064 9 437-6601jscahill@ihug.co.nzhttp://www.deafblind.org.nz/hkeller.html

5th Annual International CHARGE SyndromeConference

July 20-22, 2001Indianapolis, Indiana

Contact:CHARGE Syndrome Foundation, Inc.2004 Parkade BoulevardColumbia, MO 65202-3121800-442-7604marion@chargesyndrome.orghttp://www.chargesyndrome.org

For information about additional conferences and workshops, see theDB-LINK web site: http://www.tT.wou.edu/dblink (click on "Data-bases" from the home page) or call DB-LINK at 800438-9376 (voice),800-854-7013 (TTY).

Announcements

Two Usher Syndrome ResearchProjects

Hereditary Hearing Loss Study

on This study is evaluating hearing ability in familieswho have one or more children with hereditary hear-ing loss. Families of children with hearing loss sincebirth or Usher syndrome qualify as participants. Theproject is especially interested in families of Acadian(Louisiana) descent. Testing will be done on normalhearing parents and siblings rather than the affectedchildren.

7th Helen Keller World ConferenceWhat it Means to be Deafblind: Identity, Rights,

UnityOctober 7-12, 2001

Auckland, New Zealand

Contact:Mrs. Jan ScahillInternational Conference Committee

14

For more information contact:

Dr. Linda Hood, Principal Investigator, orMs. Sonya Tedesco, AudiologistKresge Hearing Research LaboratoryDepartment of Otorhinolaryngology andBiocommunicationLouisiana State University Medical Center533 Bolivar Street, 5th FloorNew Orleans, LA 70112Tel. 504-568-4785 Fax 504-568-4460lhood@lsuhsc.edu or stedes@lsuhsc.edu

48

D lind Per Frau Spring 2001

Study to Find Genes Responsible for UsherSyndrome in Ashkenazi Jews

Individuals of Ashkenazic heritage who have Ushersyndrome, or both hearing loss and vision loss that hasno other known cause, or family members, may be eli-gible to participate.

For more information contact:

Judith WillnerDepartment of Human GeneticsBox 1497Mount Sinai School of MedicineOne Gustave L. Levy PlaceNew York, NY 10029212-241-6947nesssOlgdoc.mssm.edu

New Email Discussion List RegardingCongenital Rubella Syndrome

his discussion list has been established as a vehiclefor parents, consumers, and professionals to share in-formation about any aspect of rubella and to providesupport to those living or working with someone withcongenital rubella syndrome.

. If you are already registered with Yahoo-groups youcan subscribe by sending a blank email to HKNC_Ru-bella-subscribe@yahoogroups.com. If you are not reg-istered with Yahoo-groups, go tohttp:/ /www.yahoogroups.com/register. Forassistance, contact the ownerHKNC_Rubella-owner@yahoogroups.com

Camp Abilities

Camp Abilities is a developmental sports camp forchildren who are blind, deafblind, ormultihandicapped, held at the State University ofNew York at Brockport. The Summer 2001 session isfrom June 24-30. The camp serves children from age 9to 19. Activities include: track and field, swimming,goal ball, beep baseball, tandem cycling, gymnastics,canoeing, judo, archery, bowling, dancing, camping,and horseback-riding. The camp is totally accessiblefor children who are deaf-blind and all deaf-blind chil-dren have 1:1 intervenors. Early registration is encour-aged. Camp Abilities will also be held in 2 additionallocations this summer, at the Iowa Braille School inJuly and at the New York Institute of Special Educa-tion in August. For information contact:

Lauren LiebermanSUNY BrockportDepartment of Physical EducationBrockport, NY 14420Tel. 716-395-5361, Fax 716-395-2771llieberm@brockport.eduhttp:/ /www.brockport.edu/campabilities

Sense Launches Deafblind Manifestoon National TV

Sense, the UK's leading charity for people who aredeafblind, launched Deafblind Vote 2001 including amanifesto by deafblind people on a television showcalled See Hear on Saturday, March 3rd.

Deafblind Vote 2001 is a major national campaign bySense to make sure prospective parliamentary candi-dates and political leaders understand the needs ofdeafblind people and their families.

The campaign follows a Sense report that revealed onein four deafblind people in the UK felt they were pris-oners in their own homes as they have such little sup-port.

According to Benedict Lewin-Leigh, Sense's Head ofCampaigns and Policy,

Deafblind people, their families and careershave joined forces to create the first everDeafblind Manifesto. It's a clear set of aims forthe next government and is set to be the focusof Sense's pre-election 'hustings' [a type of po-litical meeting] around the UK.

At the hustings deafblind people and their fami-lies will meet and question local candidates,making them aware of deafblind constituents,the problems they face and the changes thatwould improve their lives. Deafblind Vote 2001is fantastic for the deafblind community. Wesee it as a significant step towards making posi-tive changes to the lives of the people we workwith. We hope Deafblind Vote 2001 will ulti-mately lead to equal democracy for every-onenot just the hearing and sighted.

For further media information contact:Natalie PritchardPress & PR OfficerSenseTel. 020 7272 7774 After Hours 0370 580 843npritch@sense.org.uk

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lino\\111/4c

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