1

April 2003

Volume 15

Number 2

Clinical NewsSocial Networks:What is it? Why use it?

The CCP paradigmCircles of communication partners

Modes of communicationEverything counts

Types of communicationA communication continuum

The SN InventoryStep-by-step

Case examplesThree examples

AAC-RERCNothing about us without usContinued on page 2

Continued on page 2

Social Networks: Whatis it? Why use it?

Social Networks (SN) offers a way togather and organize importantinformation from family members,from professionals and other paidworkers, and from individuals withcomplex communication needs. SN isnot a standardized test. Informationis obtained during interviews that areconducted according to specificinstructions provided in the SNManual. SN can assist AAC teams intheir assessment and interventionplanning processes and can helpmeasure progress over time.

This issue shines the spotlight onSocial Networks: A CommunicationInventory for Individuals withComplex Communication Needs andtheir Communication Partners(SN).1 SN is a new assessment tooldesigned to help practitioners tocollaborate with people who havecomplex communication needs andtheir family members in settingrealistic communication goals,planning specific interventions andtracking progress over time. SN canalso help researchers answerspecific questions about the impactof AAC interventions on people withsevere communication impairments.

SN uses a structured interviewformat to address a variety offactors involved in communicationand can lead to interventions thatenable people with severe communi-cation impairments to communicatemore effectively, in ways that matterMOST to them and to their primarycommunication partners.

I asked David R. Beukelman,Professor of CommunicationDisorders at the University ofNebraska-Lincoln, to comment onthe practical relevance of the SNapproach. His response follows:

A high quality of life presupposesextensive positive interactions withinone’s social milieu.2 Social networkschange across our life span. During thepreschool years, networks includemembers of our families, family friends,caregivers, and perhaps, health careworkers. During elementary, secondary,and college years, our social networksexpand to include classmates, teachers,

personal friends, neighbors,and people in the commu-nity. In adulthood, peoplefrom our jobs, as well aspeople from our volunteer,recreational, professional,

and community experiencesare added to our networks. Late in lifeour networks again undergo extensivechange as a result of retirement, theemancipation of our children, expandedvolunteerism, changes in residence,death of family members and friends,health concerns, and so on.

At each stage, we attempt to remainresilient by countering the changes,threats and risks we face, using thesupports and protections that emergefrom a range of personal and socialfactors. To a considerable extent, oursocial networks assist us to develop andsustain these protections and supports.

Persons with chronic disabilities faceunique threats and challenges; and theyneed robust social networks to support

SN injects severalparadigms and theoreti-cal frameworks intothe interventionprocess. By highlight-

ing the family’s role insuccessful communication interven-tions, SN helps focus the attention ofprofessionals on the distinctiveneeds, priorities and preferences ofthe people who are the “end users”of AAC strategies and their familymembers. Importantly, SN helps toclarify the distinctions between anindividual’s various communicationpartners and the particular strategiesused to communicate with each. Italso captures the multimodal natureof communication, enabling practi-tioners to collect information aboutthe use of various modes of commu-nication across contexts, activities

2

Clinical News, Continued from page 1

Upfront, Continued from page 1

Figure 1. Cover of the SN Manual

them so they can remain resilient andexperience a high quality of life. Forpersons with severe communicationdisabilities, the tasks of developing andsustaining social networks can be daunting.

Augmentative and alternative communica-tion (AAC) strategies have beendeveloped to support the interactions ofpersons with complex communicationneeds. Technological developments,funding support, and intervention serviceshave evolved over the past 30 years. Thisprogress is encouraging. However, theacquisition of appropriate AAC technologyand the development of technical compe-tence do not automatically result in fullydeveloped social networks. Rather, carefulcollaboration among persons who useAAC, their communication partners, andthose who assist them is required.Unfortunately, efforts to develop andmaintain social networks are ofteninformal and disorganized.

Social Networks: A CommunicationInventory for Individuals with ComplexCommunication Needs and Their Commu-nication Partners provides the AAC fieldwith tools to assess, develop, and sustainsocial networks. Blackstone, Hunt Bergand their colleagues have designed SocialNetworks such that it addresses theconcerns of persons across the age spanwith a range of different communicationneed profiles.3

SN offers clinicians and re-searchers a way to collect informa-tion more systematically and moreeasily, using a structured interviewformat. Clinical News gives anoverview of SN. The CCP para-digm, Modes of communicationand Types of communicationdescribe three of the major para-digms incorporated into SN. The SNInventory gives a summary of thetool; and Case Examples illustratesits clinical uses. Finally, this issuehighlights the roles people who relyon AAC play in the RehabilitationEngineering Research Center onCommunication Enhancement(AAC-RERC.)

Sarah W. Blackstone, Ph.D.,CCC-SP

and partners in a way that is bothmore systematic and more helpfulthan available alternatives.

By defining three clear stages ofcommunicative competence alongthe road to “communicative inde-pendence,” SN helps clarify aperson’s “intervention path” in thesame way a map helps people plan aroute from one place to another. Byincorporating features of Light’smodel of communicative compe-tence and Beukelman and Mirenda’sparticipation model, SN can helpclinicians pinpoint specific areasthat require skill development, aswell as identify barriers and oppor-tunities across a person’s social

networks. Social Networks can alsoplay a valuable role in illuminatingdistinct sociocultural contexts.

As a person-centered planningtool, SN links the assessment andplanning processes to the outcomessought by individuals with complexcommunication needs and theirfamilies. SN can also heightenawareness of the multidimensionalchallenges in AAC interventions andhelp practitioners better understandthe similarities and differencesamong the populations and acrossthe age groups of people whobenefit from AAC.

Social Networks: A Communica-tion Inventory for Individuals withComplex Communication Needs and their Communication Partners

includes a manual and an inventorybooklet.

The SN Manual

The SN Manual (Figure 1) has 51pages, five chapters and an Appen-dix, as described below.

I. Concepts. The rationale for SocialNetworks and the theoretical frame-works underlying it.

II. Inventory Booklet Instructions.Detailed instructions for administeringthe Social Networks Inventory.

III. Circles of Communication PartnersOrientation Forms. Forms that can becopied, laminated and used when givingthe Social Networks Inventory.

IV. Case Examples. Seven caseexamples. Each illustrates the assess-ment process and shows how SN canhelp a team establish clinical goals,facilitate intervention planning andbuild team consensus.

V. Pilot Studies. A summary of resultsfrom four research studies conducted aspart of the development of SN.

Appendices: (1) A resource list to assistwith communication partner trainingand (2) a sample informed consentform for researchers and clinicians.

3

Continued on page 4

The SN Inventory Booklet

The SN Inventory Booklet has 27pages and is used to record informa-tion during each interview. Theinterviewer, typically a speech-language pathologist, gives the SNInventory over one or more sessionsto two or three informants: (1) afamily member, (2) a paid workerwho is familiar with the individual’sdaily communication experiencesand (3) whenever possible, theindividual with complex communi-cation needs. [When this occurs, itmay be unnecessary to interviewothers.]

Interviews may be conducted aspart of a collaborative process orwith each individual separately.Interviewers may elect to omit asection or change the order in whichsections are administered. However,such decisions are made in advance;and the rationale for omittingsections is stated and understood.

Why use Social Networks?

SN is already being used inclinical practice, for teachinggraduate students and to conductresearch with (1) children withcerebral palsy; (2) children who aredeaf with concomitant problems,e.g., visual impairment, autism,motor and developmental delays; (3)children who use AAC and aremainstreamed in regular schools and(4) adults with aphasia.

We asked several people tocomment on their utilization ofprototype versions of SN. Thanks toCarmen Basil from Spain, LenaThunstam from Sweden, HilaryJohnson from Australia, ElisaKingsbury, Chris Toomey, Mary HuntBerg, Liz Hanson and Gloria Sotofrom the U.S. for their responses,which are summarized below.

[Note: Carmen Basil, a professor fromBarcelona University is translating SN intoCatalan (the language used in all the ordinaryschools in Catalonia) and Castilian Spanish.

Lena Thunstam, a researcher from the SwedishInstitute for Special Education, has translatedSN into Swedish.]

Research questions. Researchersare using SN to help answer severalquestions. Lena Thunstam from theSwedish Institute for SpecialEducation is asking:

What is the daily communicationsituation for children who are deaf orhard-of-hearing and have additionaldisabilities?

What modes of expression do thesechildren use?

How do the circles of communicationpartners look for these children?

What contextual factors must be inplace for these children to communi-cate effectively?

Is SN a useful assessment andintervention planning tool for childrenwho are deaf or hard-of-hearing andmultiply handicapped?4

Carmen Basil from the Univer-sity of Barcelona is using SN as oneof her assessment tools in tworesearch projects. The first projectstudies Catalonian children between5 and 18 years of age who are AACusers and mainstreamed in ordinaryschools. Her questions include:

What AAC systems are being used?

What are features of the educationalservices being provided?

What are the communication outcomes,for social and academic purposes, ofthese children?

What are the possible relationshipsamong the different variables beingmeasured?

Her second research projectfocuses on adults with aphasia. Sheis using SN as a pre/post interven-tion assessment measure, and as ameans for establishing interventiongoals for each participant.5

Mary Hunt Berg, who directs TheBridge School’s research program, isconducting longitudinal studies witha range of students with severespeech and physical impairments.6

A retrospective study is measuringformer Bridge School students’long-term outcomes. A prospectivestudy is tracking current studentprogress over time. Elisa Kingsbury7

and Chris Toomey8 at the BridgeSchool are administering SN tostudents (current and former) andtheir family members.

Clinical applications. HilaryJohnson from the Spastic Society ofVictoria in Australia is doingperson-centered planning with anumber of people with complexcommunication needs who are justentering the community fromresidential environments. She thinksSN may assist staff who supportthese individuals to find better waysto meet each person’s needs. SN mayalso help reveal how staffperceive each person’s use ofcommunication strategies, and howtheir perceptions might influence theuse of these strategies.9

Liz Hanson from the University ofNebraska reports that SN can provideclinicians with a systematic approachto documenting and describing thecommunication modes and strategiespeople with complex communicationneeds use across allenvironments. She writes, “SN offersa way to study the efficacy of anintervention and provide ecologicalvalidation.” Liz believes that SN maybe especially helpful to clinicianswithout much experience and canalso provide a valuable frameworkthat seasoned clinicians can use toorganize their evaluations:

The “circle” procedure, which allowsthe clinician to identify and documentthe range of communication partners ina person’s life, is important and helpful.It’s been an eye-opening experience formany of our team members and maylead to a more balanced approach toservice provision (e.g., focusing onproviding opportunities for contact withpeople in empty circles.)10

4

Clinical News, Continued from page 3

Bridge School staff are using SNfor student assessment and specificintervention planning. Elisa Kings-bury recounts:

During the current school year, SN wasadministered to all current students inorder to systematically document skilllevels, communication modes, topics,partners and strategies that supportinteraction with multiple partners.Perspectives from both home andschool are being documented.7

Personnel preparation pro-grams. Professor Gloria Soto of SanFrancisco State University reportsthat she uses SN to help graduatestudents gain practical insights intoa number of critical AAC issues,including:

Observing the multi-modal nature ofAAC and how the AAC user maychoose to use one mode over another,depending on the situational contextand the intimacy shared with theinterlocutor.

Gaining appreciation for the value oflow-tech and unaided AAC options asequally valid tools and making acommitment to provide clients with awide range of communication options.

Deepening the students’ understandingof the social isolation many peopleexperience as a result of their commu-nication challenges.

Deepening the students’ understandingof the relationship between socialcloseness and quality of life.

Giving students a clearer picture ofdifferences in social participationdepending on the user’s age, educa-tional/vocational placement, etiology,onset of disability, and culturalbackground.

Reinforcing the importance ofincluding the family and significantothers as critical members of theintervention team.11

Benefits of using SN

Based on their experiences,these professionals provided anoverview of some of the benefits ofSN for family members, paidworkers and individuals with

complex communication needsthemselves. [See Table I.]

In addition, they made commentsabout the interview process witheach group of informants.

Family members (1st circle).Elisa Kingsbury, Chris Toomey andMary Hunt Berg are using SN tointerview parents of both currentand former students. Elisa is inter-viewing parents of students, ages 3to 12, with a diagnosis of cerebralpalsy. She noted:

One mom said, “SN gave a goodbaseline of my child’s abilities. I likethe idea of using SN to comparesituations over time.”

Another mother felt SN was “useful”and compared it to standardized tests,which were “not very useful or valid.”

A grandmother felt the interviewprocess was a great way of “building apartnership between professionals andcaregivers.”

One mother said she liked the modesand strategies sections because they gotat the “subtleties of my child’scommunication.” However, she did notlike being asked about her child’s skillsand abilities, because she felt it focusedon her child’s deficits.

Another mom called SN a “legacy.” Shesaid it captured so much informationthat she wanted it for her child’s bio-book. “Traditional baby books don’treflect what children with cerebralpalsy learn to do.”

While one parent liked the topicssection because it pointed out herchild’s “real needs for intervention,”another felt it “showed I don’t knowwhat my child wants to talk aboutbecause he can’t speak.”

Elisa also reported that familymembers seemed to enjoy theinterview process.7

Chris Toomey, who is interview-ing family members of formerBridge School students (now 12 to25 years old) as part of a retrospec-tive research study, reported:

Parents of older children/young adultsthought identifying people in the circleswas an interesting learning experienceand enjoyed the process.

Many had difficulty identifying whobest understood a certain mode ofexpression. It became clear, however,that the intelligibility and effectivenessof a mode was often dependent uponthe familiarity of the partner.

One parent commented that questionsabout strategies supporting interactionwere particularly helpful, and shehoped to use the information to trainnew attendants and team members.

Several said identifying topics a familymember would like to talk about waschallenging. One mother said, “It gaveme a bigger picture of how many of mydaughter’s topics are centered aroundfamily issues. She really doesn’t havemany topics she can talk about withpeople in other circles.”8

In her research, Lena Thunstam,who is interviewing parents ofchildren who are deaf or hard-of-hearing, as well as autistic, visuallyimpaired and/or motor impaired,reported:

Several (parents) believed the inter-views might lead to improving thecommunication situations of theirchildren.

Parents had difficulty answering someof the questions, but didn’t find theinterview process threatening. 4

Paid workers (4th circle). Kings-bury and Toomey said people in thiscircle were interested in SN andwere looking forward to using itthemselves.7,8 Thunstam reportedpaid workers had reactions quitesimilar to the parents she inter-viewed.

An assistant thought the interview wasexciting and that it was “good to sit anddiscuss what I do.”

A preschool teacher said SN gave her away to look at things more holisticallyand from the view of both the preschoolsituation and the family.

The keeper at the boarding house saidSN information must be summarized soas to be easily understood and not tootheoretical.4

Individuals who rely on AAC.During the development of SN wesought input from several individualswho rely on AAC. In addition, we

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learned that children and adults whocan spell or have access to largevocabularies can easily participate ininterviews and complete sections ofthe SN Inventory. Some individualswith more limited communicationskills also can participate actively. Forexample, Elisa Kingsbury described ayoung boy who indicated whethereach of his assistive technologies were“helpful” or “not helpful.” He alsofilled out his own Circles of Commu-nication Partners (CCP) by pointing to

pictures/names of people and then tothe appropriate circle.

Summary

Each person’s social networksreflect who they are and create thecontexts within which they liveamong their fellow human beings.12

Communication skills are essentialto establishing and maintainingsocial networks, and, needless to say,social networks play a defining rolein one’s quality of life.

Social Networks: A Communica-tion Inventory for Individuals withComplex Communication Needs andtheir Communication Partners is anassessment and intervention plan-ning instrument that can help guidepeople with complex communica-tion needs, across age spans anddisability groups, to access thecommunication approaches theyneed to interact effectively withpeople in their social networks.

Table I. Perceived benefits of Social Networks as reported by family members, paid workers and persons with complex communication needs

6

Circles ofCommunicationPartners (CCP)

In 1991, Blackstone proposedadapting Circles of Friends13 (devel-oped by Forest, Snow and others) tothe area of AAC to help bring intofocus the role communicationpartners play in the AAC interven-tion process. The resulting para-digm, Circles of CommunicationPartners (CCP), singles out impor-tant interactants, identifies strongerand weaker circles of communica-tion, shows partners who couldbenefit from training, facilitates aperson-centered planning approachand more.1,14,15

[Note: Circles of Friends consists of fourconcentric circles: Circle #1 represents familymembers; Circle #2, friends; Circle #3,acquaintances; and Circle #4, paid profession-als. It is extensively used to promote inclusionin classrooms.13]

The Circles of CommunicationPartners (CCP) paradigm consists offive concentric circles, with theperson with complex communica-tion needs at the center, as shown inFigure 2.

FIRST CIRCLE: The person’s life-long communication partners. Thefirst circle includes family membersand others with whom an individualresides or is related. For children, theseare typically parents/guardians andsiblings. For older individuals, “family”may mean a parent, spouse and/orchildren, as well as a domestic partneror the residents in a group home.

SECOND CIRCLE: Close friends/relatives. The second circle representsindividuals with whom someone spendsleisure time, shares mutual interests,plays and confides. Children’s secondcircles often include friends from theirneighborhood, schoolmates andrelatives who live nearby. Adults’second circles incorporate relatives,people they enjoy spending time with,as well as friends from their past with

whom they keep in touch. There is adegree of closeness and familiarity tothese relationships.

THIRD CIRCLE: Acquaintances. Thiscircle includes people with whom anindividual is acquainted but does notsocialize on a regular basis. Examplesare schoolmates, colleagues, busdrivers, storekeepers, co-workers andcommunity helpers.

FOURTH CIRCLE: Paid workers.These are people who are generallybeing paid during the times they areinteracting with the person. They mayinclude therapists, physicians, teachers,instructional assistants, personalassistants, babysitters, job coaches andso on. Even though some paid workersmay become friends, as long as they arebeing paid they are listed in this circle.[Foster parents are an exceptionbecause their role places them in thefirst circle.]

FIFTH CIRCLE: Unfamiliar partners.The fifth circle represents “everyoneelse.” When filling out this circle,informants do not identify specificindividuals. Rather, they are instructedto think of categories of individuals

who are potential interactants.Examples include storekeepers, waiters,public transportation workers, people ina local coffee shop, listserv partici-pants, community helpers and so on.

The CCP paradigm is a dynamicconstruct. Over time and across aperson’s life span, each individual’sCCP changes. New partners comeinto one’s circles and other partnersmove out. Such is the nature ofhuman relationships. Also, commu-nication partners may changecircles. Unfamiliar partners maywell become friends; a relationshipwith a friend may evolve intomarriage, and so a friend becomesfamily. As people’s social networksevolve over time, so do their com-munication needs and the communi-cation technologies, techniques andstrategies they may require.

Using the CCP paradigm tochart communication partners is acritical step in the Social Networks

Figure 2. Circles of communication partners

The CCPParadigm

PERSON

Family

FriendsAcquaintances

Paid Workers

Unfamiliar Partners

7

Figure 4. Page from Inventory BookletFigure 3. Page from SN Manual

Modes ofCommunication

Inventory. Figure 3 shows a pagefrom the SN Manual, which pro-vides instructions for collecting thisinformation. Figure 4 is the corre-sponding page from the InventoryBooklet, where data are recorded.

Summary

Completed CCP charts identifythe partners in each circle, as wellas the person’s primary partners(e.g., favorite, most willing to learn,spends most time with). These dataare useful in developing goals thatcan increase successful interactionswith diverse partners.

Everything Counts

Social Networks (SN) enablesprofessionals to systematicallycollect and organize informationabout the use of various communica-tion modes. It also allows practitio-ners to account for the modes anindividual prefers across contexts,activities and partners prior tomaking decisions about AACtechnologies and training approaches.The interviewer first collects infor-mation about all the modes anindividual uses. See Figure 5. Then,the informant is asked to identify theperson’s primary mode in each circleand the frequency, effectiveness,efficiency and intel-ligibility of eachmode used.

In pilot studies conductedbetween 1998 and 2002 (which aresummarized in the SN Manual), theresearchers found a strong correla-tion between circles and communi-cation modes.1 For example, allindividuals (including those whowere competent users of AAC

devices) tended to rely on theirimpaired speech, body language andgestures as primary modes forcommunicating with family mem-bers (Circle 1). Also, everyone usedvocalizations and gestures across allcircles. With friends and acquaintan-ces, people used a greater variety ofAAC techniques. Low-tech aids andAAC devices were the mode ofchoice with paid workers.

Participants in these studies useda range of AAC technologies tocommunicate with unfamiliar part-ners (5th circle) and acquaintances(3rd circle). However, those who didnot have access to AAC devices, orwere not able to use devices effec-tively, could not interact with thesepartners without direct support fromskilled partners. We also learnedthat, although AAC devices were

seen as essential for individuals todevelop relationships with peopleoutside their family and to commu-nicate effectively with strangers,they were rarely used with familiarpartners. Also, e-mail and theInternet played an important role inthe lives of individuals who wereliterate and had AAC systems thatenabled them to go “online.” Accessto these tools was highly valued.

Pilot studies revealed that eachindividual’s use of communicationmodes seemed to reflect culturalpatterns, as well as his/her commu-nication competence and languageskills. Most importantly, a person’seffectiveness often depended on his/her ability to use a variety ofcommunication modes and to knowthe situations in which each modewould be most successful.

Figure 5. Page from Inventory Booklet

8

A communicationcontinuum

In an effort to describe the range ofindividuals who benefit from AACinterventions, Dowden16,17 hasdifferentiated three communicationgroups. The groups are based onobservable expressive communica-tion behaviors, not on perceivedreceptive language abilities, cogni-tive abilities or communicationneeds, whether presumed or known.The groups are not discrete; rather,they comprise a continuum. Thecontinuum ranges from (1) thosewho do not yet have any means ofsymbolic expression, to (2) thosewho can, without assistance, com-municate some messages, in somecontexts, to some partners, to (3)those who have an ability to com-municate any message, to anypartner, in any context. The con-tinuum is based on a form of“communicative independence”described by Fox and Fried-Oken,where effectiveness is determinedby the ability to communicateanything to anyone.18 In SocialNetworks (SN) individuals aredescribed according to how inde-pendently they are communicating.1

Both clinical experience and pilotdata collected during the develop-ment of SN show that individuals donot abandon simple communicationstrategies. Instead, individuals addmore and more sophisticatedcommunication methods to analready existing repertoire. It is alsoclear that most individuals choose touse a simpler method of communi-cation to meet certain needs withfamiliar partners, just as speaking

individuals choose touse gestures and facialexpressions in additionto speech. Finally, the

continuum can reflectboth developmental and

degenerative processes. For example,a young child with severe speech andphysical disabilities begins life usingemerging communication. Aslanguage develops, however, thechild will become a context-depen-dent communicator and, ultimately,an independent communicator,provided he or she receives AACinterventions along the way. On theother hand, someone with a degen-erative condition begins as anindependent communicator. As thedisease progresses, the person maygradually lose the ability to speakand write. First, he becomes context-dependent and, ultimately, an emerg-ing communicator unless he receivesongoing AAC interventions.

Dowden’s three groups aredescribed below. As part of theinterview process, SN informantsare asked to select the group thatbest describes the individual.

Emerging communication group.Individuals who have no reliablemethod of symbolic expression useemerging communication strategies.People in this group may rely on facialexpressions, body language, eye gaze,gestures, vocalizations or other non-symbolic methods of communication.They have no reliable use of intelligiblespeech, signs or symbols. Althoughthey may learn to use a few rote signsor utterances and a simple communica-tion device, they often use theseinappropriately.

The term “emerging communication” isnot intended to describe an individual’spotential. In some cases, individualsmay be capable of considerablesymbolic expression but not haveaccess to a system that meets theirmotor, auditory, visual or symbolicrequirements. In other cases, individu-als do not yet function at a symboliclevel. However, they may use bodylanguage to communicate a range ofcommunicative functions.

AAC interventions for this grouptypically focus on (1) establishing thefirst method of reliable symbolicexpression, (2) increasing opportuni-ties for interaction with diversepartners and (3) expanding communi-cation beyond “here and now” topics.Treatment can help provide anindividual with both the means and theopportunities to communicate moreeffectively with an increasing numberof communication partners and to usesymbolic communication strategiesmore consistently and reliably.

Context-dependent communicationgroup. A large percentage of individu-als who receive AAC services are in thecontext-dependent communicationgroup. Their skills and abilities mayvary widely.

Some individuals are able to communi-cate in only a few contexts with a smallnumber of highly familiar partners.Other people are able to communicateeffectively in multiple contexts withdifferent partners. However, to beunderstood, or to access appropriatevocabulary, all context-dependentcommunicators rely on familiarpartners for support.

Individuals who have reliable symboliccommunication skills may be limited tospecific contexts or partners becausethey: (1) rely on severely unintelligiblespeech or customized communicationstrategies, which require partnerfamiliarity, (2) do not have access tosufficient and/or appropriate vocabu-lary, (3) lack the literacy/languageskills necessary to generate novelutterances, (4) depend on others toselect and pre-program vocabulary forthem and/or (5) do not have access toappropriate technology.

Intervention goals for people whosecommunication is context-dependentoften focus on (1) increasing access tovocabulary, (2) increasing the skillswith which AAC strategies are used, (3)developing language and literacy skillsto maximize communicative indepen-dence, (4) providing AAC technologiesand instruction in their use and (5)training communication partners. Inaddition, goals may focus on (6)increasing participation across circlesand/or the number of partners withinspecific circles, (7) expanding therange of topics an individual cancommunicate about and (8) improvingthe person’s ability to assume responsi-bility for communication breakdownsand for training partners.

Types ofCommunication

9

Step-by-step

Social Networks (SN) is not astandardized test. It is an assessmentand planning tool that enablestrained professionals to collect andinterpret information that caninfluence the nature of AAC inter-ventions and outcomes.

Considerable thought and pilottesting contributed to decisionsabout what to include in SN and howto administer it. Data are collectedin the SN Inventory Booklet (seeFigure 6); and the instructions aredelineated in the SN Manual. SocialNetworks may be administered in itsentirety or in part, in one or moresessions, as part of a comprehensivecommunication assessment. Aclinician or researcher may wish tochange the order in which items (orsections) are administered, or evenomit a section, when that clearlymakes sense.

The administration of the entiretool can take about an hour for eachperson interviewed. It takes longerwhen administered to someone who Continued on page 10

relies on AAC. Theinterviewer (typically aprofessional withexpertise in disorders of

speech, language andcommunication) must be

(1) thoroughly familiar with thetheoretical frameworks underlyingSN, (2) adept at using SN to inter-view family members, professionalsand individuals who rely on AACand (3) able to interpret the informa-tion collected in ways that cancontribute to a collaborative, person-centered assessment process.

Interviews can be conducted withone informant at a time, or as amore collaborative process. Theinterviewer seeks to engage theindividual with complex communi-cation needs as an active participantin the SN process, if at all possible.The interviewer also ensures that theindividual, or his/her parent/legalguardian, has been informed and hasagreed to the use of SN as a compo-nent of the assessment and interven-tion processes.

Who participates?

Interviews are conducted with:

1. Someone in the person’s first circle(i.e., a family member who spends themost time with the individual, e.g.,parent, spouse).

2. Someone in the person’s fourth circle(e.g., a paid worker, preferablysomeone who can respond to questionsabout the individual’s language skills,such as a speech-language pathologistor teacher).

3. The individual who uses AAC,whenever possible. This greatlyenhances the validity of the results and,in some cases, can eliminate the need tointerview other informants. It isparticularly important to find ways toask the person about his/her Circles ofCommunication Partners (CCP), modesof expression, and topics of conversa-tion, even if other sections are omitted.

The SNInventory

Context-dependent communicatorsbenefit from learning to integrateavailable modes of communication,symbolic and non-symbolic, and toexpand their strategic, operational,linguistic and social competencies.

As long as someone is context-dependent, he or she will need supportfrom skilled communication partners, atleast in some situations. Some peoplegain communicative independence overtime. Others do not, for various reasons.Many will not have sufficient languageand literacy skills to generate languageindependently. However, some willchoose not to use technology and thusto remain dependent on others.

Independent communication group.Individuals in this group can interact withboth familiar and unfamiliar partnersabout any topic, in any context. Theseindividuals are typically literate and havethe ability to communicate novelmessages independently.

Intervention goals may focus on (1) usingAAC techniques to improve theindividual’s operational, linguistic andstrategic competencies, (2) providing rateenhancement strategies, (3) expandingcommunication options (e.g., e-mail,Internet access, etc.), (4) refining socialinteraction and pragmatic skills, (5)increasing access to people in specificcircles and (6) fostering participation inactivities related to employment,education and community living.

Summary

Dowden’s classification system isnot intended, nor should it be used, todescribe an individual’s potential tocommunicate or to benefit fromintervention. The system is, however,very useful in intervention planningand can help teams set goals andestablish a baseline against which tomeasure progress.

Figure 6. Inventory Booklet (cover)

10

SN has ten sections as describedbelow:

I. Identifying information. Theinterviewer records basic informa-tion about the individual, theinformant and the interview situa-tion.

II. Skills and abilities of theindividual. The interviewer asksthe informant to estimate theperson’s skills/ability levels accord-ing to a rating scale: age appropri-ate/within normal range; mildimpairment; moderate impairment;severe impairment. Included arequestions about (1) speech, (2)language (receptive and expressive,writing and reading), (3) vision, (4)hearing, (5) motor abilities, (6)cognition, (7) adaptive behavior and(8) assistive technology use. [Figure7 is the Language Areas page.] Theinterviewer also asks informants toindicate whether they used formaltests, informal measures, writtenassessment reports, structuredobservations or an “educated guess”to estimate the individual’s skillsand abilities in each area.

III. Circles of CommunicationPartners (CCP). The interviewer

introduces the CCP paradigm andasks the informant to identifypeople in each circle. Then, theinformant identifies the individual’s(a) primary communication partner,(b) most skilled partner, (c) partnerwith whom the individual spends themost time, (d) favorite communica-tion partner, (e) partner most willingto learn new skills and (f) partnermost willing to teach other peoplehow to communicate effectivelywith the individual.

IV. Modes of Expression. Theinterviewer focuses on the person’scurrent use of modes of expression.Modes include facial expression/body language, gestures/eye gaze,vocalizations, manual signs,speech, writing/drawing, nonelec-tronic communication boards/books, simple and complex com-munication devices, special com-munication software, the phone ande-mail. As shown in Figure 8, theinterviewer also asks about thefrequency, efficiency, effectivenessand intelligibility of each mode.For symbolic modes (speech, signs,writing, communication boards/books, communication devices),additional information aboutvocabulary size is sought. Finally,the interviewer asks which modesthe person currently relies on tocommunicate with partners in eachcircle.

V. Representational Strategies.This section focuses on whether theindividual currently uses objects,photographs, pictographic sets andsystems, orthographically-basedsystems, manual signs, auditoryand/or other strategies to expresslanguage. After identifying specificrepresentational strategies, theinterviewer asks the informantquestions about the effectiveness,efficiency and intelligibility of eachstrategy the person uses.

VI. Selection techniques. Theinterviewer asks the informant toidentify selection techniques cur-rently being used and to rate theireffectiveness. Included are directselection, iconic coding, alphanu-meric coding, non-electronic andelectronic scanning.

VII. Strategies that supportinteraction. This section aims toidentify specific strategies individu-als and their partners currentlyemploy to enhance the effectivenessof expression and/or the person’sunderstanding of daily communica-tion. Examples are provided (e.g.,gesture dictionaries, augmentedinput, calendars, social stories, etc.);however, the interviewer also seeksto learn about informal approachescurrently being relied on. As shownin Figure 9, the informant rateswhether the strategy is effective“most of the time,” “some of thetime,” “rarely” or “never.”

VIII. Topics of Conversation.The interviewer asks the informantto identify topics the individual talksabout with primary partners in eachcircle. Then, the informant is askedwhat topics the person would mostlike to talk about if he/she had themeans to do so.

Figure 8. Modes of expression

Figure 7 . Language skills

SN Inventory, Continued from page 9

11

Three examples

#1 Emerging Communication.C.A. is 12 years old and is fullyincluded in grade seven at hisneighborhood middle school. Hisdiagnoses include developmentaldelay, motor and visual impairments.Speech, language and cognitiveskills are severely impaired. C.A.wears glasses. He is ambulatory,although he often requires physicalassistance to maintain his balance.C.A. has no symbolic communica-tion system and uses emergingcommunication methods. His familyspeaks Vietnamese at home; peopleat school speak English. SocialNetworks was administered as partof C. A.’s annual review.

C.A.’s speech-language patholo-gist interviewed his mother (1stcircle) and his instructional assistant(IA) (4th circle). His IA accompa-nies him to all his classes, is mostknowledgeable about his communi-cation partners at school, andcommunicates regularly with C.A.’sfamily via a written communicationnotebook and telephone calls. Figure10 shows the number of communica-tion partners reported by his motherand IA for each of C.A.’s circles.Both informants readily provided

IX. Types of Communication. Inthe last section, the interviewer askswhether the informant woulddescribe the person as someone whois using emergent communication,context-dependent communicationor independent communication.

X. Summarizing SN informa-tion. Following each interview,information may be compiled tomake it more meaningful and useful.Summary sheets enable the inter-viewer/team to:

1. Display all communication partnersand identify key partners on one page.

2. Identify all modes being used andtheir effectiveness. Clarify whichmodes are primary for each circle.

3. Summarize information that relatesto the person’s skills and abilities anduse of representational strategies,selection techniques, interactionstrategies and topic preferences on onepage.

4. Develop functional communicationgoals that address the individual’s needsand priorities within each circle ofcommunication partners.

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names of communica-tion partners in C.A.’s1st and 4th circles;however, they struggled

to contribute names forhis other circles. The IA

listed two additional names in the4th circle, and his mother added twonames in his 1st circle, noting thatother relatives come to live withthem from time to time.

The team noted that C.A.’s circleswere neither full nor balanced. Mostpartners were in his 1st and 4thcircles, and there were an over-whelming number of paid profes-sionals in his life. During the inter-view, C.A.’s mother said, “I didn’trealize how isolated my son is.”

The SN Inventory revealed thatC.A. relies on non-symbolic formsof communication to expresshimself. His gestures, body lan-guage and vocalizations are effec-tive in some circles and situations,but not in others. He recently beganto use a simple AAC device withfive prerecorded messages at school.

At home, C.A.’s family speaks tohim mostly in Vietnamese. Hereportedly uses gestures, eye gaze andvocalizations very effectively with hisfamily. At school, people speak onlyEnglish and C.A.’s idiosyncratic useof gestures is often not effective withstaff or his peers. His IA often acts asinterpreter. All agreed he uses emerg-ing communication.

The discussion of these findingsmade it clear that educational staffwere not attending to, or encourag-ing his use of gestures. Also,although the IA could interpretsome of C.A.’s gestures, he had notbeen asked to help others learn tounderstand them.

C.A.’s mother was identified ashis primary and most skilled partner.During her interview, she described

Figure 10. C.A.’s partners as reported byinformants Continued on page 12

Figure 9 . Strategies that support interaction

12

several gestures he used in meaning-ful ways at home. For example, shereported he wiggled his fingers in acertain way when he wanted to playmusic. This gesture came from atime when C.A. was very young andthey often played with a toy pianotogether. “Now,” she said, “it meansother types of music as well.” Hismother also described other mouth,body and hand gestures that he usesconsistently and in meaningfulways. C.A.’s mother had not realizedthat others might learn to interpretthese gestures.

School staff decided to carefullyobserve C.A.’s use of specificnatural gestures in order to enhanceinteractions at school and expandhis ability to communicate in awider range of contexts and aboutmultiple referents, thus leading himtoward symbolic communication.

His mother was not aware thatC.A. was using a simple digitizedspeech device when communicatingwith some teachers and therapists.She wondered if C.A. understoodthe meaning of the English wordsthat were programmed into thedevice, so his speech-languagepathologist described his emerginguse of these prerecorded spokenmessages, which were short andsimple. The team agreed C.A.’s useof the device was enabling him togreet people and, thus, establishsocial relationships.

Based on the analysis of informa-tion from the Social NetworksInventory, the team felt that C.A.’sdaily experiences would be en-hanced if he could interact withpeople more effectively. Familiarpartners needed to understand thekey role they played in facilitatingthese interactions, both in setting upopportunities and in training otherless familiar partners to recognize

meaningful gestures. The team alsorealized that C.A. had second-language issues they had not fullyunderstood, appreciated or ad-dressed. Finally, the team developedthree functional communicationgoals:1. Use a "talking"" switch to interact more directly

and often with peers at school and with peoplein his apartment building.

2. Increase C.A.’s effective use of symbolicgestures by (a) having staff and family modelthe use of five targeted gestures as augmentedinput at least ten times per day and (b)encouraging C.A.’s meaningful use of thetargeted gestures at school and home.

3. Increase the number of people in his 2nd, 3rdand 5th circles from baseline to at least twoadditional people in each circle over the next sixmonths.

To implement these goals, hismother listed and described hisnatural gestures so staff coulddevelop a gesture dictionary. Then,the team trained specific peers andstaff to interpret C.A.’s naturalgestures and vocalizations and torespond to his communicationefforts in meaningful ways. Finally,staff and his mother programmed“greeting” messages into a talkingswitch for use at school and over theweekends.#2 Context-dependent communi-cation. J.B. was a 50-year-oldaccountant and mother of two whenshe suffered a severe stroke (CVA)in 1994. She was initially diagnosedwith “global aphasia.” Today, shehas a severe expressive aphasia,severe verbal apraxia and a moder-ate-to-severe receptive aphasia.

Over the years, J.B. has retainedgood motor control and has used avariety of communication strategieswith many communication partners,across multiple contexts. She relieson speech, writing, gestures, draw-ing and communication notebooksas shown in Figure 11. J.B. aptlydemonstrated most of these strate-gies during the SN interview,although her use of some was moreeffective than others. Her speech

Case Examples. Continued from page 11

Table II. C.A.’s functional goals

remains extremely limited, both byverbal apraxia and by a severe word-finding impairment. Her word-finding deficits and spelling diffi-culties also affect her writing, so shecan’t rely on writing to resolvecommunication breakdowns. Sheprefers using non-symbolic meth-ods, e.g., gestures, body languageand facial expressions; however, inmost situations, her communicationnotebooks and drawings are hermost effective modes of communi-cation.

J.B. is frustrated by her word-finding difficulties and her relianceon the communication notebooks.Even so, she is very persistent andresourceful in communicating underany circumstances, as long as herlisteners are patient.

Although J.B. did not return towork as an accountant, she feels sheleads a fairly satisfying life. Sheruns her household independently,doing her own shopping, cookingand cleaning, and she is, once again,pursuing old interests such asreading, traveling and gardening.Recently she became interested incomputers and now spends timeconnecting with her family throughe-mail. To do so, she uses hercommunication notebook to help herfind and spell words.

J.B. placed three people in herimmediate family (circle #1) and hertwo closest friends, with whom shegoes to garden stores and shows, inher 2nd circle. She listed 12 peoplein her 3rd circle, including the groupshe and her husband travel with and

Figure 11. J.B.’s expressive modes

13

Table III. J.B.’s functional goals

the extended family she contacts viae-mail. Her 4th circle has herdentist, two doctors, receptionists,store clerks and travel guides. J.B.’s5th circle was relatively smallbecause she relies heavily on othersto help her negotiate situations withstrangers. Notable exceptions arebus drivers and clerks in storeswhere she regularly shops. J.B. andher husband selected four goals:1. Expand the number of topics in her communi-

cation notebook.

2. Develop a section of the notebook to help hercompose e-mail.

3. Enhance her ability to move smoothly betweenmodalities to repair communication break-downs.

4. Decrease her reliance on familiar partnersduring interactions with unfamiliar people.

#3 Independent communication.A.G. is 26 years old, with a diagno-sis of cerebral palsy. She cancommunicate independently in mostenvironments and with most peoplewhen she has access to appropriatetools and chooses to use them. Sheis bilingual, with Spanish as her firstlanguage. She attends a community-based adult program and has severalpart-time jobs. She also volunteersat a local school district, makingcommunication boards for Spanish-speaking children who use AAC.Recently she began taking a class ata community college across town.

The Social Networks Inventorywas administered to assess andprioritize A.G.’s communicationneeds and help her identify goals.The speech-language pathologistwho interviewed her was surprisedto learn the extent and richness ofA.G.’s social networks and realizedthat heretofore she had little knowl-edge of the communication partnersin A.G.’s 1st, 2nd and 3rd circles.

As shown in Figure 12, A.G.’scircles of communication partnersare full and balanced. She describedher ongoing contact with manymembers of her extended family

who live nearby. In addition, she haslived in the same neighborhoodsince she was in elementary schooland regularly sees childhood friendsand new friends from work. She alsoindicated she is meeting morepeople in the community collegesetting. In contrast to her family andfriends, however, most people at thecollege are still unfamiliar with herspeech, gestures and aided commu-nication strategies.

A.G. uses a variety of communi-cation modes. She has been acompetent user of AAC devices andassistive technologies for some time.Even so, she reports that she rarelyuses her AAC device with familiarpartners, but instead relies onspeech, an alphabet board, e-mail,phone and a communication book.She made the communication bookherself as a way to clarify messagesfor partners.

In the past, A.G. used a laptopwith voice output communicationsoftware. However, she found thatcommunicating novel messages byspelling was slow and cumbersomeand that the laptop frequently brokedown. She is currently goingthrough a clinical trial process to

Figure 12. A.G.’s modalities and number ofpartners for each circle

purchase a new AAC device tobetter serve her communicationneeds.

A.G. chooses to be a dependentcommunicator in some situations.This occurs when she uses speech,gestures and aided communicationstrategies with unfamiliar partners.To be more independent and expandher circles, she needs access to areliable AAC device with featuresthat allow her to communicate moreefficiently with acquaintances andstrangers. She also needs access to acomputer at home, in school and atwork, to utilize the Internet, write,make communication displays, etc.A.G. and her SLP developed thefollowing goals:1. Complete clinical trial and acquire an AAC

device with synthesized speech that supportsher spelling and provides rate enhancementfeatures to assist her in communicating moreefficiently and effectively with partners in her3rd and 5th circles.

2. Use the new AAC device to (a) increaseinteraction with peers and strangers at hercommunity college, (b) increase ongoingcontact with partners using e-mail and (c)participate in chat rooms and listservs.

3. Learn and use strategies to train her owncommunication partners. For example, she willlearn to use an introductory strategy thatexplains her communication methods.

Summary

The Social Networks Manualcontains seven case examples. Eachillustrates how the SN assessmentprocess can lead to the establish-ment of functional communicationgoals. As shown here, the goals aremeant to reflect the needs andpriorities of individuals with com-plex communication needs and theirprimary communication partnersand to enable individuals to demon-strate greater independence andsuccess in communicating withfamiliar and unfamilar partners andto expand their social networks.

14

Five years ago, the partners of theRehabilitation Engineering ResearchCenter on Communication Enhance-ment (AAC-RERC)* made a pact tolive up to the mantra popularized bypeople with disabilities, “Nothingabout us without us.” This articlegives examples of how people whorely on AAC have been involved inthe AAC-RERC’s research, develop-ment, training and disseminationactivities. These examples do notrepresent all activities underway thatinvolve “end-users” of AAC tech-nologies as participants, consultants,co-workers and collaborators; ratherthey illustrate the range of involve-ment.• AAC-RERC partners are: Augmentative

Communication, Inc., Duke University, PennState University, Temple University, Universityat Buffalo, University of Nebraska and theUniversity of North Carolina-Chapel Hill.

Research and development activi-ties

♦ At Temple University, researchersuse a participatory action re-search (PAR) methodology.Adults with cerebral palsy whorely on AAC technologies havehad input into the design andimplementation of ASSETS, aresearch project that providedtraining and support to a group ofparticipant AAC users seekingemployment. Diane Bryenreports, “These individuals wereour most powerful generators ofresearch ideas and questions.They led us to strategies wewould never have thought of.”After the first ASSETS training,research participants came upwith the idea of offering AS-

SETS on-line. They also pro-vided substantial input into theASSETS curriculum and AS-SETS for high school students.They were paid either as researchparticipants or consultants. Oneperson is now a part-time em-ployee.

♦ Individuals who rely on AAC playa significant role in all employ-ment-related projects at Penn StateUniversity. David McNaughtonnotes that a total of 34 people whorely on AAC have been paid asresearch participants and two asconsultants. Forty-one individualshave participated in the Penn Stateemployment projects, includingadults with cerebral palsy (24),amyotrophic lateral sclerosis (7)and autism (3). In addition, sevenadults with cerebral palsy workedon TECH 2010, a consumer-ledresearch project.

♦ Janice Light, at Penn StateUniversity, has conducted a seriesof studies related to improvingAAC technologies for youngchildren. “Families have played anintegral part in the researchprocess by identifying specificneeds and sharing difficulties theyface getting children interested inusing AAC technologies,” shesaid. Researchers have docu-mented the significant learningdemands of today’s AAC tech-nologies and are working along-side families to design systemsthat do not “sit outside the lives”of young children.

Light pointed out that parents ofchildren who rely on AAC areoften very busy; and therefore,their participation in AAC-RERCresearch typically must relatedirectly to needs of their children.

♦ David Beukelman reports thatresearchers at the University of

Nothingabout uswithoutus

Nebraska work closely withpeople who rely on AAC. “Wehad lots of advisory help fromfive or six couples, where onespouse had amyotrophic lateralsclerosis (ALS).” The ALSadvisory group helped define therole of participants with disabili-ties and participated in attitude,new interface and organizationalstrategy studies. They helpedformulate appropriate researchquestions, reviewed data andprovided input on its signifi-cance. “In one case,” he says,“the advisory group forced achange in the research design.”

Beukelman also described theparticipation of people withaphasia and traumatic braininjury in studies of the efficiencyof specific AAC interfaces.

In a project investigating the useof contextual scenes as aninterface for people with aphasia,Beukelman recounts that a manwith moderate/mild aphasia“helped us design everything. Hecame to all the research meet-ings, and was an every day,research collaborator.” Anotherman, who has a high level spinalcord injury, was “heavily in-volved in our head tracking work,making all the team meetings andtrying out all prototypes.”

Beukelman described a flexibleapproach to reimbursement.Reportedly, many participants withacquired disabilities did not wantto be paid. One said, “Dave, youdon’t have enough money to solvemy problems. Give it to her(pointing to a student).”Beukelman also noted that partici-pants and consultants often elect toreceive certificates rather than apay check because “that won’tjeopardize my other finances.”

15

Augmentative Communication News(ISSN #0897-9278) is publishedbi-monthly. Copyright 2003 byAugmentative Communication, Inc.1 Surf Way, Suite 237, Monterey, CA93940. Reproduce only with writtenconsent.Author: Sarah W. BlackstoneTechnical Editor: Carole KrezmanManaging Editor: Harvey PressmanOne Year Subscription: Personalcheck U.S. & Canada = $50 U.S.;Overseas = $62 U.S.Institutions, libraries, schools,hospitals, etc.: U.S. & Canada=$75U.S.; Overseas = $88 U.S. Single rate/double issue = $20.Special rates for consumers and full-time students. Periodicals Postage ratepaid at Monterey, CA. POSTMAS-TER send address changes toAugmentative Communication, Inc.1 Surf Way, Suite 237, Monterey, CA93940. Voice: 831-649-3050. Fax:831- 646-5428. sarahblack@aol.com;www.augcominc.com

Continued on page 16

ResourcesCarmen Basil, Barcelona University, Barcelona,

Spain. cbasil@psiv.es

David Beukelman, University of Nebraska,Lincoln, NE. dbeukelman@unlserv.unl.edu

Patricia Dowden, University of Washington,Seattle, WA. dowden@u.washington.edu

Liz Hanson, University of Nebraska, Lincoln, NB.ehanson@unlserv.unl.edu

Mary Hunt Berg, Bridge School, Hillsborough,CA. mary@bridgeresearch.org

Hilary Johnson, Spastic Society of Victoria,Vicoria, Australia. sciop@scopevic.org.au

Elisa Kingsbury, Bridge School, Hillsborough,CA. ekingsbu@bridgeschool.org

Lena Thunstam, Swedish Institute for SpecialEducation in Gnesta, Sweden and MälardalenUniversity in Västerås, Sweden.lena.thunstam@sit.se

References1 Blackstone, S. and Hunt Berg, M. (2003). Social

Networks: A communication inventory forindividuals with severe communication challengesand their communication partners. Monterey, CA:Augmentative Communication, Inc.

♦ Jeffrey Higginbotham at theUniversity at Buffalo describedthe role individuals with cerebralpalsy, amyotrophic lateralsclerosis and aphasia have playedin their projects looking at“usability.” “These individualshave suggested changes that maylead to devices being morereliable, accessible and mucheasier to modify in the future.”

Training and disseminationactivities. Many AAC stakeholdergroups can benefit from training,including graduate students, engi-neering students, people who rely onAAC and their family members,practitioners, manufacturers, policymakers, the general public and soon. AAC-RERC partners teachclasses to speech-language patholo-gists, teachers, engineers and otherhealth-care professionals in pre-professional programs. They alsopresent at conferences, conductworkshops, do Webcasts, writearticles and, in short, play a veryactive role in the training anddissemination activities underwaywithin the area of AAC.

Partners often ask individualswho rely on AAC to teach or co-teach a graduate-level class, presentor co-present a paper, write or co-write an article for a newsletter orjournal. According to Kevin Cavesat Duke University, student engi-neering projects often require theactive participation of people withAAC needs. Bryen said, “We rarelydo training without a collaborator,because the messenger is often moreimportant than the message.”Beukelman reports that AAC-RERCstaff in Nebraska have helpedseveral couples prepare videotapedversions of their life stories topresent to school groups and serviceorganizations.

Michael B. Williams writes a

column about the AAC-RERC ineach issue of his newsletter, Alterna-tively Speaking. Finally, three of theeight papers presented at the AAC-RERC State of the Science Confer-ence in August 2001 were co-authored by individuals who useAAC technologies.*

Next steps

People who rely on AAC play avital role in the activities of theAAC-RERC. Some have partici-pated as volunteers or unpaidparticipants. However, most haveworked as paid participants, paidconsultants or paid part-time staff.AAC-RERC partners feel they havedone well, but want to do better.Some ideas for the future are to:1. Work collaboratively on specific projects from

beginning to end. Incorporate people inplanning and execution of research as researchassociates, in addition to their role as subjects orconsultants in planning process/focus group.

2. Move people from the role of consultant withan honorarium to the roles of part-time/full-time staff.

3. Use telework/Internet as a way to involvepeople who rely on AAC more systematicallyand to circumvent transportation and on-the-jobbarriers.

4. Hire a team of concerned individuals to look atspecific issues in AAC. Discuss problems andpossible solutions and create design specs forprototypes.

5. Consider a leadership development program forone or two AAC users in training, dissemina-tion, research and development areas of theAAC-RERC.

[Special thanks to David R.Beukelman, Diane Bryen, Kevin Caves,Jeffrey Higginbotham, Janice Light andDavid McNaughton for contributing tothis article.] For additional informationabout activities within the AAC-RERCgo to www.aac-rerc.com

The AAC-RERC section is partially funded bythe National Institute on Disability andRehabilitation Research under grant numberH133E9 0026. The opinions herein are those ofthe grantee and do not necessarily reflect thoseof the U.S. Department of Education.

* Papers now available in AssistiveTechnology, The Official Journal ofRESNA. vol. 14#1.

16

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Address Service Requested.

2 Goldstein, H. (2002). Bases and models ofdeveloping social skills. In H. Goldstein, L.Kaczmarek and K. English (eds), PromotingSocial Communication. Baltimore, MD: PaulH. Brookes Publishing Co., 1-5.

3 David R. Beukelman. (February 2003).

Personal communication.4 Lena Thunstam. (March 2003). Personal

communication.5 Carmen Basil. (March 2003). Personal

communication.6 Mary Hunt Berg (March 2003). Personalcommunication.

7 Elisa Kingsbury. (March 2003). Personal

communication.8 Chris Toomey. (March 2003). Personal

communication.9 Hilary Johnson. (March 2003). Personal

communication.10

Liz Hanson. (March 2003). Personalcommunication.

11 Gloria Soto. (March 2003). Personalcommunication.

12 Social Networks in the World of AbundantConnectivity. Institute for the Future MenloPark, 2744 Sand Hill Road, Menlo Park,California 94025. 650-854-6322 (voice). http://www.iftf.org/html/features/social_networks.html

13 Falvey, M., Forest, M., Pearpoint, J. andRosenberg, R. (1994). All My Life’s A Circle. InUsing the Tools: Circles, MAP’s and PATH.Toronto,Canada: Inclusion Press. http://www.ttac.odu. edu/Articles/PCentPl. html

14 Blackstone, S. (1991). Interaction with thepartners of AAC consumers: Part I –Interaction. Augmentative CommunicationNews, 4:2, 1-3.

15 Blackstone, S. (1999.) Communicationpartners. Augmentative Communication News,12:1, 2; 1-16.

16 Dowden, P.A. (1999.) Augmentative andalternative communication for children withmotor speech disorders. In A. Caruso and E.A.Strand (eds), Clinical Management of MotorSpeech Disorders of Children. New York:Thieme Publishing Co., 345-384.

17 Dowden, P.A. and Cook, A. M. (2002).Selection techniques for individuals withmotor impairments. In J. Reichle, D.Beukelman and J. Light (eds), Implementingan Augmentative Communication System:Exemplary Strategies for Beginning Communi-cators. Baltimore, MD: Paul H. BrookesPublishing Co., 395-432.

18 Fox, L. and Fried-Oken, M. (1996). AACaphasiology: Partnership for future research.AAC, 12: 257-71.

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