errtative ' Cornrrnrnication J'ty, 193 Vol.6,No. 3 INs,l.on Ttnslssun. , . Loud muslc: datmsl ianerne oull nrakeuo: challenging authoriti asking-gue*iom ab<iri relrgronr lov.e.. llle. sex, lhe uruvefsel qeeKng answera: lalkmP on ll)e DDone: rrendsnrDs: experimehinql jering in'trotrblei ard rruting Guess what this issue is about! Like other ages and stages of hurnan behavior, adolescence crosses culnral and linguistic boundariesand is unavoidable. Unique, confiuing, exciting, and intense,not many adults would choose to retum to it! This issue highlights a topic the field of AAC has yet to explore, the experience ofbeing an adolescent and an AAC user. My purpose is !o raise issues, ask questions,and highlight its importance. Wat is adolescence liks? Whdt's imponant about it? What's to be darv abofi it? For Comumers begins with reflections from adult AAC users on News a friend and colleague whouses AAC, whois married with twochildren, and holds a master'sdegreein library science, alsoworked on fis section. We had help from others listed as Resources onpage 10.Clinical News discusses the psychology of adolescence and offers suggestions abouthow to be of assistance, The Equiprnent section listssoftwarp and materials to consider. In University/Researclr and Governmental, I describe aspects of my recent trip io Por[lgal and sonre ongoing activitiesin Europe.From tinre to tinr during the trip, I formd myself both language and spee.ch impaired. Although I knew some wordsand phrases in Portrguese, my attempts to speak were quite best experiencedagainst a backdrop of support, love, and understanding. It is part of the developmeot process, With or without a disability, adoles- cence is a tirne ofrapid growth and physiological changas.The landmarks of developnrent, the sensations, physiology, emotions and needsmay be roughly the same; however, the stresses and challengesin dealing with adolescence certainly ar€ grearer for individruls with disabilities, par- ticularly t{rose who struggle to com- municate.' Walking and being physi- cally normal are not the issuesin- volved in coping successfully as an adolescent or an adult. In the long run, wbat really matters the most is positive self-€ste€m and a positive per- ception ofwho you are apd where you belong in the wo d.'C-ommrmi- cation is essentialto this process. Michael Williams and I asked three men and three wonren who use AAC to reflect on their experiences as adolescants. Our colleagueshave cerebral palsy, are betwe€n 29 and 5- years old (mean=zlo years), and are "high fimctioning. " They use a varielr of commrmication devices and other assistive bchnologies. We real- ize they do uot representall, or even a majority of AAC users; however, they have experienced fust hand what we need to know. Our questionsand their responses follow: (coir. ot paSe 2) ForConsumers Adolescence: Reflections of AAC users Adol""""o"r, like childhood, is
Guess what this issue is about!Like other ages and stages of hurnanbehavior, adolescence crossesculnral and linguistic boundaries andis unavoidable. Unique, confiuing,exciting, and intense, not many adultswould choose to retum to it! Thisissue highlights a topic the field ofAAC has yet to explore, theexperience ofbeing an adolescent andan AAC user. My purpose is !o raiseissues, ask questions, and highlight itsimportance. Wat is adolescenceliks? Whdt's imponant about it?What's to be darv abofi it?
For Comumers begins withreflections from adult AAC users on
News
a friend and colleague who uses AAC,who is married with two children, andholds a master's degree in libraryscience, also worked on fis section.We had help from others listed asResources on page 10. Clinical Newsdiscusses the psychology ofadolescence and offers suggestionsabout how to be of assistance, TheEquiprnent section lists softwarp andmaterials to consider.
In University/Researclr andGovernmental, I describe aspects ofmy recent trip io Por[lgal and sonreongoing activities in Europe. Fromtinre to tinr during the trip, I formdmyself both language and spee.chimpaired. Although I knew somewords and phrases in Portrguese, myattempts to speak were quite
best experienced against a backdropof support, love, and understanding.It is part of the developmeot process,With or without a disability, adoles-cence is a tirne ofrapid growth andphysiological changas. The landmarksof developnrent, the sensations,physiology, emotions and needs maybe roughly the same; however, thestresses and challenges in dealingwith adolescence certainly ar€ grearer
for individruls with disabilities, par-ticularly t{rose who struggle to com-municate.' Walking and being physi-cally normal are not the issues in-volved in coping successfully as anadolescent or an adult. In the longrun, wbat really matters the most ispositive self-€ste€m and a positive per-ception ofwho you are apd whereyou belong in the wo d.'C-ommrmi-cation is essential to this process.
Michael Williams and I askedthree men and three wonren who useAAC to reflect on their experiencesas adolescants. Our colleagues havecerebral palsy, are betwe€n 29 and 5-years old (mean=zlo years), and are"high fimctioning. " They use avarielr of commrmication devices andother assistive bchnologies. We real-ize they do uot represent all, or evena majority of AAC users; however,they have experienced fust hand whatwe need to know. Our questions andtheir responses follow:
(coir. ot paSe 2)
For ConsumersAdolescence:
Reflections of AAC users
Adol""""o"r, like childhood, is
Augmtntative@mmuqieaticrn
News
For Corsumers (con . Jron paee 1)
Ouestioni Wqt aSes do you con'sider the period of odolzscence?When did you go through yourqdokscence? .All concurred that'Adolescence" begins between 1land 13 years of age and ends at 20years. Five of the six AAC usersreported having an adolescence thatwas "delayed" or "extended" (fromages 28-34 years, 13-25 years,13-28 yearc, or "continuing"). Asone respondent said "adolescencecontinues until the person estab-lishes an independent life. "
Question: Identify qnd rank themajor issues confronted fo AACusers during adolzscerce. Respon-ses are presented in Table I. Tosummarize, peer acceptance and thefuture were the most frequently men-tioned issues. Self-esteem andsexuality were noted often. Most in-
often avoided "like the plague. "Other issues mentioned were gesingthrough high school and facing thefuture. Access to commrmicationand to technology, as well as suFport for and ongoing training in0echnology were considered prirnaryissues. Finally, being independentand dealing with family relation-ships were listed.
Ouestion: Were /rere somc thingspeople did that were helpful?Respondents said their parents didthe following positive things:
r Helped rne to grow in school a.ndrn every way.
r Told me how smart I was.r Listened !o my ideas.r Understood I should be able to
talk wilh anyone and everyone,r Told me not to go by the rules.. Irtroduced me to an employed en-
gineer with severe cerebral palsy.
r Got rDe to a therapist so I couldconfront my feelings, particularlyabout my disability.One respondent said professionals
involved hira in decision-rnaking.Several, however, did not recall any-dring positive professionals had doneduring their adolescence.
Question: Whqt are professionabandfamilies doing today that is help-/al? Respondents seemed to thinkthings are getting better. They listedthe following positive practices:
. Training everyone who knows heAAC user how to inieract withhim/her.
People stared, looked puzzled and shrugged."Obrigado" wbich rre.ans "thank you," was my onlyzuccess, My reactions? First, it was geat to have evenone intelligible word. Mosdy, I felt incompetent,embarrxsed, and frustrated. Then I realized, I knowwhat to do! Pantomirne was useful. But the word boardsI prepared in advance wete rnost effective. I selectedvocabulary, looked it up in the dictionary, wrote it downand then went out and pointed to the words/phrases I
needed. Shopkeepers, waiters, policemen, trxicab drivers (and I) had a much easiertime. Hey, I could have told me that! One additional observation . . . my attemptsto repeat uinlelligible words or phrases often made things worse!
Tributes. The first is a very happy one. Cheers to fu International $ciety forAugncnratiw and Alternative Communicaion (ISAAC) u its loth anniversary.More than any olher organization, ISAAC's cbapters and rnemben are making adifference in the lives of AAC users. The 10th aoniversary is testimony to iheefforts and achievements of many, many people who work on behalf of ISAAC'smission. The second tribute is to Marsha Livent, a woman who wo*ed behind thescenes for years to get AAC users what they need. ACN would like to recognizeher, and others like her whose efforts often go runcknowledged. Wrifi€n by CarolCohen, fis tribute is on page . Finally, special thaDks to Dr. Terry Gandell. Sheworked at ACN's intemational headquarters in Monterey on this issue as part ofafaculty development program with Bishop's University in Montreal, Csnada.
Begirming with the next issue,now. Remember the Hotline n
will retum to ib 8-page fonDat. That's it foris (,1o8) 649-3050.
Sarah W. Blackslone, Ph.D.
ACNumber
Being difierent.Having s€lf respect.Coping with neg.tive stlitrdes.crowing emotionally.Having interp€rsoMl
relarionships.Figuring out your ideotity ffd
B€ing able to have meaningtrl,fast communication.
Being well positioDed forfunction,
HaviDg nordisabled people 6'apand listen to you.
Having knowledgeable te{chersHaving technicians available ro
Being accepted by p€ers.Feeling left out.Derling wilh peer pr€ssrre.Having pe€rs look betord lhe
disability and know yotr arcresllv likc them in everv wl
Dealing with body irnage.Dating.Having privacy.Not svoiding the topic . It's not
Wanting to be on yo{f own.Desling wilh overprotective
parcnts.Finding fundin8 for devices ard
craduatina from high school.Finding companies willing o
hire"people at age 16.Being encouraged to dream ard
have goals nflt lhe $rpport tofullill them, m matter how
Budgeting time for firn and
dicated that rssues were
( . Taching the AAC user how totrain strangers to inleract appro-priately.
r Being advocates for AAC users inscbools, communities, recreation.al activities and public affairs.
r Providing commrmication devicesfrom an early age that allow ex-pression of feelings and thoughts.
r Sisitrg down and lislening toAAC users.
r Teaching AAC users and familiesabout finding sources.
. T€ching AAC users how toutilize iechnology !o the fullest.
One person said, "professionalswho bave confronted and resolvedtheir own feelings about disability aremore belpfirl tban those who havetr't. "
Questiun Imagine you are theparenl of someone who uses MC.What important thingr wouw youarpea profess ionals andfomilies todo ? Table Il summarizps theirresponses under five major head-ings: independence, academic suc-cess, positive self image, access toequipment and involvement withpeople.
Question: Wat role should AACdevices play in arlolzscence? WhattechnoLogies are critical? All can-cur technology should play a veryimportant role! One respondentsaid, "Just imagine if you were non-verbal. What would you want adevice to do in your everyday life?"Others responses were that devicesshould be:
r Used when they are fimctionaland put aside when they arc not.
r Int€grated in all parts of l.ife toenhance social integration, givesomeone a public voice, aid ineducational goals, encouragecreativity, and allow for inde-pendent mobility and recreationalactivities.
r Able to provide acc€ss tormreskicted vocabulary.
r Truly portable and as easyto use as possible.
. Fuo for both parties.r Able to reflect the teenager's
personality.Word processors with word predic-
tion. ACCESS DOS. commrmicationdevices, and anything helping oneeat, move, talk, play and work werclisted as critical technolosies.
I also spoke with two physicallydisabled adults with uni$paircdspeech. Both are quadriplegic;Audrey as a result ofpolio and Steveas a result of a spinal cord injury.They mncur that the major issuesfaced by adolescents are social, notmedical. For example, Audreyrecalled figuring out as a t€€nagerthat "the only rcason people saoke tome was they felt sorry for me." Bothsiressed the i.ryortance of havingfriends with and without disabilitiesand of finding a balance between in-tegration experiences and contact withthe disabled community. Both agreedadolescents have a critical need forprivacy and confidentidity. Theywarned, however, that few adoles-cenb have the courage to ask ques-tions about sex, their disability, or thefuture,
In rasponse to my question abouthow professionals and families canhelp, they gave the following advice:
r Help establish opporhmities sothat friendships and links amongpeople can develop.
r Help ext€nd the world experien-ces of adolescenb. Many peoplewith disabilitie.s live in a shrunkenworld,
. Dont treat adolescenis like babies.r Rerrember how sensitive adoles-
cents can be. Be careful Dot to saythings that hurt someone's feel-rngs.
. Be creative. It's easy to say"allow privacy, independence andt)?ical le€nager experiences. "However, it is hard to emncipaiesomeone who is physicallydependent on his or her parcnts.
a
Michael's rtflectiom follow:one of the least surprising, ht fiIo* inF
portsnt findings of lhis surv€y is lhe factlhst most ofus have had a delayed sdol€8-cence. For most l4ens, adolesaerre b€-comes an exercise in lhe crsfly an ofescap-ing their parents watchful gsze. This becomes doubly diffrcult when your ftobilityand spee-ch are inpaired.
I rernember my chrooological adolescencestretching out through an endless s€ries ofsundsy nights, as my parents sld I wouldgsther s.ound the TV s€t snd watch the Edsullivrn show. I would sit ther€ rnd wstchthe guys with lheir spinning plales ardthink, "Life musl hold somelhing b€tlerthan this." Fortunately, I discovered mylocal chapter of the Young Democrsls ardthe American Civil Libenkx Union.Various mernbers toot me to rneerings.This got me out of the house, k€pt rE upon rutional snd world events, srd got rnethinking for myself.
As I loot back on this now, I r€{lize dlstthis period Save me some of lhc seial ardintellectual skills lhar I would use later,while going through my tfue "edolescedce."
Irl teens trke risks and make mist kes.Hrve expectations that sre simila. to 'rlorlnal ieens' .Allow teens to experience 'normal- things olher t€ens do.Allow teens to Darticioste in the decision
EncouraSe teens to plan for the fuorc.DeveloD a skill/tslent for teen6 to use as an adult.
Terch self-respecl.lntroduce teens to role models wilh dissbiliti€s,Preprogram swear words and current teen expr€ssions in devices.
Support thedevdopDe{t of epositive sdf fuuge
Get tunding fo. all necessary equiFnenl.Help teens lake nraximum rdvsntage of existing lechnology.hovide traininc and make surc someone knows how to fix
Encourage person to develop hdllhy perf and corfirunityrclstionrhips (e.9., church, civic club).
eggmqtatleCq4qrnun-k4Eon
News
Clinical NewsThe real stuff
I his article raises two questions.First, are we missing the boot withadolescents? Second, wtrat is the boat?I asked professionals the same ques-tion Michael and I asked AAC users,"What are the prinary issues confront-ing adolescents who use AAC." TableItr surmarizes their responses.
Comparing Table I (page 2) to TableIII above, reveals qualitative dif-ferences. Less than 50 prcent of theareas overlapped: communicuion,independence and peer lcceptance.Both AAC users and professionalssaw these as major issues confront-ing adolescents. The other areaslisted by AAC users were self es-teem , sexuqlity , the fnure atd timemandgemet, while AAC profes-sionals lisled life skills, prevocation-aI training and tecfualogy.
Why the differences? Issues listedby AAC professionals may reflecttheir interests and areas of expertise,
Addressing skill development issomething AAC professiooals knowhow to do. Fostering self-esteem,dealing with sexuality, and planningfor an individual's future employ-ment and independenc€ are not!
"Experts" in adolescence agreewith AAC users about the primarydevelopmental tasks of adolescence:self awareness, body irnage,friendships, sexual identity, fuhuethinking and associared worries likeemnlovrnent and financial inde-p"od*"".l'2'a'5 Goldberg6 suggesa itis not the severity of the disability thatwill determine if adolescents with dis-abilities rnake successful adjushn€nts.Many very severely dimbled peopleand families adjust well, while manymildly disabled persons do not. Thenvo necessary ingredients for successare: resolving normative adolescenttasks and having a positive idea ofoneself as a physical, emotional, inteFlecnul and social person. He challen-ges professionals and familie,s to:
a spend as much I ime worrying lboul maximiz-ir|g lbe growlh of r healthy self-concept 3syou do in nuximizing a penon's physicalpoter ial or connnrnicstion skills.
a Broaden yo{f awsrcness beyord lhe educa-lional ard relnbililalion sy$ems.
a Appr€ciate e{ch pefton for whar he/s}Ie IsElher than what h€/slp is NOT.
r consider sperding less lirne trying to rem.dyinpairrnems that are slways going lo be patt .ofa person's life ard more time ot providingopponunities for mrmal experiences and src_cesses in o6er are{s of developrnent.
During inierviews with AACprofessionals (see Resources on page10), it was apporcnt they were awarcofa broad range ofchallenges andconcems confronting adolescents, Allseerned to agree it is important forAAC professionals (who typically aretrained in health-care, technology, andeducation) 0o consider more carefullyour roles during adolescence. As pre-viously mentioned, suggestions fiomAAC users are summarized in TableII on page 3. AAC professionalsoffered these additional thoughs:
Il Self-Con""pt: Falling.short ofcultural rdeals can be oevastat-ing for anv adolescent. Re-seirch sh<iws the more obviousthe ohvsical differences. tlremor'e difficult it can be.6 Chmor-e ilifficult it can be.o Chan-ses in societal attitudes andges ln socletal atlltuuos anfaws, and the disability rifaws, and the d.isability ri,ghts
"movement are nelpmg. naney'
tervention throush the Pennsvl-vania Assistive Technolosy
'
Cenler. tbere bas been a -risi-
tive chinse in adolescenG whohave qroin up wittr assistivetechn6losv and inl,egration ex-oerienceil She saysibev are3el f-ad vocates anA their'Dnmarv concerns are getung aiob and settins marrid. Peirs-.see
thenias cl-assmates andfriends. and onlv incidentallyas disairled. Thcie shrdens
-
also are advocates for eadv in-tervention, Thev say geuin-sstarted at ase f6 is ?t6o latE."People defiie who tbev are audwhai thev will becomdas aresult oftheir social contactswith parents, te€chers,therabists. and oeers, begin-ning in early cfildhood. bthersuggestrons were to:
. Be swal€ olwhat 'iDleivationt coove}s.How do adolescer s with disabilities ioterpr€igoing to therapy or being ir s wecisl class.Hopetully, it is not "You aI€ not good enouShlhe wiy yotr arc. we will fix you,'
r Tdk about disabilty. h is not a $i8rna,dnrne, deficit or sotrrthing dut tpeds to begocen rid of. Fe5rs, beliefs srd queslioNabod an irdividual's dissbility ard its out-corrte dbuld b€ discuss€d.
r Pmvide assistive technologr. AAc profeesiords used to rEport that many adolescenlswere relucla to us€ technology beca$e itrnade them look (and sound) even more dif-fered. Todly adolescer s sre rnore likely toperceive t€chrplogy as "cool." Able$odiedpe€rs now hsve techmlogy also. It contiruesto be imponad for AAC te.hnologies to lookand be age-appropriale. ̂An extmple isdescribed by DeTornfinso:o"I developed an overlay for a teen-6ge boy.Yo{r l(Ilow hol' long tha! takes. . .it was colorcoded, tull of syrnbols rcpreienthg sI lhevocabulary he wanted and so on. When Ipr€sented it to him, he took orp look 6t it andsid, 'You don'r expect rne to l,ouch pink, doyou?'" GUEss NoT!Moral offte story? 'Never develop a$)rhingfor an adolescent without lheir input."
. l||cftase sdf-€st€€rn by nraki g age-appropdate denradds. Don't tre€t adoles_cents like younger children by or'erpro(€clitrgthem or assumirg they have limited cognitiveskills. For exarnple, huggirlg and padry tlrche{d ofa 19 yeqr old is highly inapPrapdateon rnany levels.'
t IDtroduce to mle Dodds. Mske censinadolescer s who use AAC meet and intemctwith di$bled peers and adults who arc copitlgsuccessfully.
El Friendships. We are all on ourown when it come to d€velop-ing true friendships; however,or-ofessionals and- families canjrrovide opp_ortunities for.themlo emerse. lt rs lmtrnnant toknow th-at social sElls arethinss that all people, with orwithbut disabifitiei, leam only
Being liieral,e.Doing homework.Taking notes.crooming.Using money.Using the phone.Havins hobbies I
Accessing largevocabularies.
Saying novel lhir8s.Using humor.communicating in
different environments.
Wanting to be like peers.
movement are helDrng. ftaney '
reports that after I yrilrs of in- with
Several oeoole described the value of grouo ex-oeriencei f<ir nonsoeakins adolescentsfvho' usehAC. The sroup drocess-can facilitate the hterac-tive use of AAC svstems. provide peer support indevelonins self-adlocacy dmons AAC usdrs, and as-sist in
'addressins social'and em6tional needs.
Tburston and Dti6ean9 reDorted the results of twosrouDs over a 2 172 veai peiod: a CommrmicationEroub with 6 nonsDelkbs ohvsicallv disabled adoles-6ents' and their spe'aking ;€bri and dn after schmlPsvcho-Social srbuo. T-he,v observed ttre AAC teenswdre less matu;e in' their ;ocial development thanDeers. lt was sussested this was due 0o maiorbef,rcits in their dEvelopmental experienceJ andlower exDectations on ibe part of-parents and profes-sionals- these researchers'suseesi the buildineblocks toward interactive cod;unication witb--peersand the development of social skills must besinmuch earlier, In addition. thev sussest orofdssionalsand Darents should expect moie nSimalttebaviorsfroni nonspeak ing adolescents.
Other stratesies for social.ization are to use model-ins. role olaline and self-instruction to assist in deaFin! with ieal lif-e situatioos. More than anythine, it
f is'imoortant to make sure ieens have oopo-rhmides\ to sei toeether. haos out. and talk. oni'mechanism
is ihe usE of electroiic mai.t and te€n Bulletin Boardsas described on page 9.
El Sexual identity: The literah.u€ suggests m y.Daretrts and Drotessronals consrder ctuldfen anoidolescents ivith disabilities asexual with no chancg-to marry. reDroduce and lesd a nonnal sexual life.rrThese altitudes not onlv show a lack of contact withrealitv. but a lack of in-formation about what is pos-sible.- Even worse. they can result in the disabledadolescent feelins theii bodv is uslv and sexuallv un-attractive. For A-nc users, ihe pr6Slems are exater-bated bv their difficultv askins
-questions about a
ranse o? sexual issues. Most lack information andfew-have access to exlensive and explicitvocabularies. Even fewer have opportrmities toshow an interest in sex durins normal activities sucbas school dances, in conversitions with the oppositesex, and so on. Readers are referred to Cantituoicat:ing-I+geiber.l2 for an excellent discussion ofsexuality issues. Suggestlons are:
r Parqrtal infludce. Disablei children rleed lo he{r from their par€ntsthat they are irdeed sexud p€ople, wilh sexual lhoughts atd fe€lit8s fidcan e)p€ct to socialize, date, nurfy ard hsve childr€n, ifthey wi$.
r P&pari g teens so they c{|| d€cr€{se arry pNibility of s€xusl obu$.r I roducing to role Dodeh (e.g,, rnamied AAc users).I AdvFati[g for nomral socid sp€riqlces ad privay,t Appmpdata voc{bularies. TeeruS€K wirh disabilities sho{rld hsve
acce{6 to a8€-appropri.t€ vocabulades Mrh public ard privale tiFsssgesconceming sex ard sexualily.
. Appropriflte repressrtation of vocabulary. McNaughon'' remirds uslhat symbols play a role in self e$eem, self det mirution and selfactudization. Thus, in selecting slnbols to epress vocsbulary, considerwhelher the s)rnbols: poitray accuml,e and rElevaDt informtion; rc4ordto the user's feelings regarding piivacyi ptotear lhe digniry of lhe usrEconsider the re3ctions of others.
r CooDsdiry ktuup or tudividuo. counselira cln provide a sening fordis.ussionr of sexuslity armng AAC usert. However, $everal GffludnBAAC users) npdioned thit during adolescetpe, rnsny wi "shut-down"lny discussion ofsexuality isarea. Thus, pmfessiomb who do couNellir€mus( b€ fsmili!. wilh woys lo sssist individuals wilh severE nrotm,sensory, langudge, ard cognitive impairmenb ro leam ihe 'how toe' ofexral belnvio. ard to develop a se)od identity. PmSrarns rped to focusbeyord lhe arntomy, physiology lld furrlion of s€xurl pafis ard permitsn open epression of feelirus.
E Indepmdence. Achieving a balance among inde-oendence. deoendence. and interdependence is vervbifficult. For'one thins, there are nb universalcriteria. Cultures diffdr on their perceptions of thisbalance. lnterdeoendencv and de'pendtincv are notsubstitules for iridepend6nce, budimportaht values itrand of themselves. All over the world, however.oeople with disabilities have limited experiencesivitlr indeoendence. SeDaration from onle's familvcan be veiv diff,rcult arid ofteu is prolonsed untilwell into ailultbood for oeoole wiih disabilities.makins it even more prcible'matic.14 Remember alsotbat wf,at may appeaf to be a depeudent relatioosbipis often one rif iirierdependence.'Wben a pattem oflearned helplessness bls been established, bowever,it will hind;r an adolescent with disabilities fromtaking .the. steps required to prepare for independentllvrng.rn lhe commu ty.. Strategres may mclude:provrdmg parenl clscusslotr gfoups; c[99lrn9 oppor--tunltles to assume lncreasns rgsmnslbrtltv tor one'sown self-helo behaviors: eniourisins teds to be in-volved with bther oeople: and leaihiie older teenshow to hire and minale attendants and how to dealwith barriers they arelikely to confront.
E Educational and vocational development Resultsof research sussest that Droblems ofseparation. in-deoendence. 6Iv imase'. sexual identifo. assr6s-sirin and de6ression mlsi be resolved tfford-voca-tional choic'es can be made. Amid such hrmoil,which is so characteristic of adolescence, even able-bodied vouths don't make realistic choices withouthelp. Piofessionals need to recopnize these oroblemsmuit be settled bv late adolesceice and oftei arenot. Concerns ofadolescents exlend WAY bevondthe development of educational and vocationalskills- Co<irdination among agencies and dte com-mu lv ls essennal.Many-mentioned the need for work experience,Mosi children have 'iobs" well in advince of thetime they can be employed, (e.g" bqby .si(rng, .DaDer roules. mowlng lawns, and otber tobs m theiohmunitv). Withou[ these experiences] AAC ruersfall behind. With them. thev c'an learn more aboutthemselves and their a6iliti6s, work values, and joboptrons.
Final cornmenb: It's clear, isn't it, that going tbroughadolescence is far more difEcult for people with dis-abilities, particularly AAC users. It requires enormous,skill, perseverance, and support. Today, most adult AACusers are 49! employed, are 19! married, or involved inlong-lerm adult relationships, and are not living inde.pendently. You and I, and the field of AAC can NOTignore any longer, the highly possible conclusion that weneed to do a better job during adolescence and for
C
DeTommasod did a vocabulary inventory andreDorted teenagers talk about: Friends, the oppositesei. hobbies. s-Dorts. wbat tbey are sohs to ilb orso- thioss thev'have, done. se)i. aDd-Aid;. Sbe f€elshost lee'ns wint to sav novel things and need accessto larse vocabularies.'Literacy ski s are ctiiical notooly lor academic and vocatibnal reasons, but for so'ciaf and personal growth.lo
adolescents!
AuEnerrtativeC.ommunication
Universitv& ResearchActivities in Portugal
r r 7VY hat a wonderful trip! Ijust rchrrDed fiom Portugal
wbere I was inviied to sflk on Research in AAC at the FitrstrIberoAmerican Con$€ss of Allemative aod AugmentativeCommunication in Lisbon, Pottugal. Note: lberoArrEdca is ageogmphical are{ conprised of Forugal, spsin, Bftzil (where Portrguese isspo&en) ard all the Spanish speaking counldes in cenral rtrd so{{h AnErica.Arriving a few days early, I spent the first day visiting theCentro de Reabilitacao de Paralisia Cerebral Calouste Gul-benkian. The Centse provides sewices to approximately1200 children each year. Founded in 1960 by tbe PortugueseCerebral Palsy Society, the Centre offers assessrent andheatment, has a preschool, kindergarien and elementaryschool, and a vocational training prcgam for children andyouth. At lhe Centre I met childrpn wilh severe cerebralpalsy who are using a range ofassistive devic€s to communi-care and participate. The preschool classroom was lhoughtful-ly engineered. Symbols and technology were accessibleeverywhere. I observed each child commrmicating with staff,each olher, and shangers using geshrres, speech, facial ex-pressions, low tech and high iech devices and computers.The AAC team includes the tescher, her instructional assis-tants, rchabilitation engineer, psychologist, occupational,physio, and speech therapists and a physician. We discussedtheir 3 year research rr.g,jer't (An AAC Cufticuhonfor Pre-school Children) , which is fimded by JNICT from the Minis-try of Industry. Based on this ongoing research MargaridaNunes da Ponte, Luis Azeveda, Carlota Ferreira and theircolleagues will prepare an AAC preschool curriculum in Por-nrgrrese that can be replicated across programs, The cur-riculum wi.ll be available in late 1994.
Betwe€n a visit io the Centre and the beginning of theconference, my mther (wto is 80 years old and not easy tokeep up with) and I, did some sights€eing in Lisbon. Mar-garida and her husband Manuel took us to the charming cityof Cintra, where the royal family used to spend surnmers.
The Conference opened on June 29th, with s?eechesfrom dignitaries of Pofiugal, Spain and &e European Com-mmity. Co-sponsored by CAPS (Centre for Analysis andSignal Processing of the Technical University of Lisbon),the Psychologl Department at the University of Barcelona,and the Intemational Society for Augnentative and Allema-tive Communication (SAAC), the conference crealed an ex-citing forum for Portuguese- and Spanish*pea.king profes-siouals in Ewope and l-atin Amrica to share theirknowledge, experiences, and research. It was good to estab.lish contact with so matry talented colleagues. Papers arelisEd in Table IV:
After &e scientific program, my mother and I travellednortb by car. Our goal was to expand our "research" !o iu-clude Portuguese food, scenery, history, culture, and wine.ResabZ I recommend everything! Porhrgal is a truly beauti-lirl coutry. We drove through villages with nredieval chur-ches and homes front€d with atbactively designed ceramictiles. We ate delicious food and found wann, kind people
The long days were full of activities and his-tory. We never felt rushed because the srm stays high rmtilafter 10:00 p.m. Arnong the many highlights was a twonight stay at the Palacio de Mateus. the lulas (calamari), hebeaches, the vinho verde (grecn wine), riding a btrrro (Yes, IdidD, the Port wine, Margarida's cooking and most of all,time spent with llis, Margarida and their delightful hmilies!For additional inforrmrion conlrct Iris Azevedo. CAPS/CoMPLE(o I.Av. Rovisco Pais. 1096 Lisboa Codex. Porqlral, Fax +351-l-352 3014 ̂or Margarida Nunes da Ponte. centro de Reabilitrcao de hralisit .E
News
An akernative for communicatior/interaction of deaf childrenwih
of vouths witJr severe motor disabilities
Using an ulirasonic sensor to assist in the communication process ofpeople with vioal
for communicstion with individuals who are autisdc
for children with severe rnental relardation
for Droducinp multimedis software for individuals with disabilities
The use of multimedk as met phor in AAC
rTrI IDE is the European Com-
munities Research and DevelopmentIaitiative in the field ofRehabiliationTechnology. TIDE is seen as criticalto the competitiveness of theEuropean rehabilitation tecbnology@T) industry. The existence of TIDEreflects recognition by the EuropeanCommmity (EC) that assistive tech-nology is a growing market and thatmember states (i.e., lhe countries whobelong) currently have only smalJ andfragmented markets:
r Cornpanies now focus on singleimpairments. Available RT tendsto address single impairmenb,wher€as, integrated solutions areneeded because many groups(e.g., eldedy people) have morethan one inrpairment.
r Technical issue are not solved.Manufachrers and suppliers comefrom different sectors. This nrakesdevice connec tivity and integratedsolutions very difficult.
r National rtgulatiom differ.Different member states are nowrequired to conform to differcnttechnology shndards and servicedeLivery regulations.
. Cultural diff€r€nces abomd.The EC comprises countries (i.e.,rrember states) with nuny lan-guages and cultures. Attitudeslowards technology and usergeferences differ substantially.In Europe and the United
Kingdom, businesses that manufachreand distribute RT arc currently smallto medium sized and often lack theresources that would allow them totake advantage of new technology orto expand their markets geogaphicaFly. Also, large high tech companiesmay perceive national urarkets inEurope as too small and fragmentedtojusti! their investment. In thepublic sector, reimbursementauthorities struggle to reconcile thedemands of users with their limitedbudgets. As for users, they often havelimited choices and pay high pricesfor AAC lechnology and services.
Gove rn mentat "#;#ffi""#":tJt" .".""3TIDE and the
HEART projectmarket in rehabilitation iecbnology irEurope. d By enlarging the market,products that incorporaie up-todatetechnology can be delivered to dis-abled and elderly people at reasonableprices. TIDE also exists to helpcorurter the threat pos€d !o Europe€nindusiry by United states legislation infavor of people with disabilitie's,specifically the Americans with Dis-abilities Act (ADA), which forces in-dusry to take the needs of disabledpersons into account and stimulat€s astroDg RT industry in tbe US.'" FinaFly, TIDE is rreant !o acceleraoe theemergence of a custonrer centered,market oriented, RT industry and tofacilitate independent living and par-ticipation in economic and social ac-tivitias by eldedy and disabled peoplethrough technological intervention.
Already TIDE has more than 20projects undervay in the followingareas: general models and tools;manipulation and control; safety anddaily zuppor! access to information;personal commrmications. Com-mrmication area projects are con-cemed with:
r Acc€ss to and inieraction with mul-timedia environments
r Technology io facilitate personalcommrmications, and
. Services and applications.Currendy, lhe single large,st study
finded by TIDE is HEART (Horimn-l8l Euop€an Activities for Rehabilita-tion Technology). Managed by theSwedish Handicap Lstihrte, theHEART Consortium has partnersfrom 2l instinrtions, organizatiom andcompanie,s in 12 cormtries. The Con-sumer Board insurps a consurnerperspective is maintained. TheHEART strdy concentrates on six keyarei|s;
1. Standards, testing and certilica-tion/specification of rehabilitationtechnology. Coordinated by TheDanish Centre for Technical Aidsfor Rehabilituion and EdacationObjectives are to influence stand-ardization of RT, testing of aids andproducts, and coordination of RT.Consumer influence is consideredcritical.
2. Coherence between and amongRT industrial s€ctom. Coordinatedbt Fors chungs it stitu Techrclogie-B ehindart e nhitre, Germany. Objec-tives are to encourage Europeancompanies to coop€rate ilr research,product development, harmonizationand marketing.
3. Rehabilitation technology ser-vice delivery. Coordinated by thcI ns titute for RehabilitdianResearch, The Nahcrlands. Qbjec-tives are to identiff exemplary com-ponents of service delivery systernsin 16 countries, evaluate the involve-ment and influence of the consumer.and recommend improvements thatwill both enhance tle quality of ser-vices and stimulate an iniemationalmarket.
4. Legal and macrreonomic fac-tors impacting RT availability.Coordinated by The Funaional ad.Vocatianal Rehabihtarion Ceftre ofNant e au-s ur-L unain, France.Objectives are to shrdy legislationand then evaluate possible inierac-tions between how legal and macro-economic factors affect the avail-ability of rehabilitation technologyused in daily life, education andemployment.
5. Rehabilitation TechnologyTraining. Coordinated fu TheCentre for Analysis aM ProcessingSignal, Ponugal. Objectives are toexamine a range of existing RTeducational programs in Europe andNorth America, and identi$ thecritical components. Ltltirnaiely thisgroup will propose RT curricula forthe EC.
6. Emerging areas ofRT reearchand developm€nt Coordinated bythe National Research Council,Ir4ry. Objectiv€s are to identiry thebarriers that currently prevent elder-ly and disabled people from havingaccess to new technologies.Mechanisms for ongoing technologytransfer will be defined.For morc inforrnation, contact Guru[r F€er-
berg or Tornas Lagerwlll, The Swedish Hand-icap Institute, Box 510, 5-162 15 Vallingby,Sweden. FAX +46 E7392152. 'r̂l
AugmerrtativeC.ommunication
News
EquipmentA place to begin
literacy development in childrenwith signifi cant developmetrtaldelays over the age of 8 years.Edited by Carolyn Musselwhite anddeveloped by the Southwest HumarDevelopment, Inc., &!!g has tenstories. activities. comnrmicationoverlays appropriale for earlyadolescents. Story themes emphasiz-ing choices, consequences and prob.lem solving. The R.A.P.S.
$94g!99f, and audiotap (available inthe FaD has songs for each story andideas on how to incorporate musicusing a variety of light and hightech communication devices.To oidcr. s€rd $25 Us for RAPS snd $15US for RAPS Sonsbook to SoulhweslHuman Developm;nt. 202 E{sl E5r[ Streel.Suite 140- Pft(';nix- AZ &5012-
Access to the Arts throueh AssistiveTechnolosv. This publication hasideas about how to fucilitale artisticexpression. The complete packageincludes AFC setups for theUnicorn Board and/or overlays for aTouchTalker/LightTalker.For information. write Youns ArtisWorlchoDs. St. Norbed Collese. De Perc.wr 541lS- 2099.
Electronic Bulletin Boards forTeers. Modem technology canfacilitate social interaction, support
and education in an envircnmentthat levels the playing field and isavailable at the individuals own con-venience and pace. Many com-munities have bulletin boards withelectronic mail available at no cost.Some offer special on-line access toput children and youth with dis-abilities in touch with their peers(both able-bodied and others withdisabilitip). One exa:mple is AbilityOnline. '" which offers electronicmail, a section for teensgers, aseparate conference for parents, dis-cussion topics such as sports, jobsearching, higb lecbnologj/, andspecific disabilities, and gamss.
To connect, you need a coryuterand a nrodem. Try itl
r Set comnunication softwa.e to 8 data birs,No parity, 6d I stop bit, ard you rnodem toits faste* qee.h.
r Dial (416) 65G541I . There is m registrarionfee or r€rnbership cost,but long{ishcecharges do apply.
t ReSisier (answer a few quesiion).t Afte. you reCise. a li-$ of conferences ard
fonrm srch as Teen Chlt are displayed.r Fololv direcliora srd gp for it!
For more informalioo connect with lhe sys-tem or contrct Ability OnLine Support Nel-work st 919 Alness St.. Nodh York. orFtffio M3J ,1, Csnads o. phone (4f 6) 65G6207.
^F
\- ommrmication aids, adaptedconputers, software, mainstream tech-nology and assistive devices should bepad of the life ofall adolesc€nts withsevere speech impairnrcnts. The pur-pose of this section is to share infor-mation about softr,vare and materialsdesigned with the needs ofadoles-cence with disabilities in mind. Farftom inclusive, the information givesyou a place to start. If you have otlrcridees, plesse let me knor ,. sperial tlnnks0o Dave Sclmid, Terry Gatdell, ard oflprr forrheir i4u.
Software: Tables V and VI listsoftware that addresses leisure ac-tivities, socialization and literacy is-sues respectively, Readers are en-couraged to obtail additional resour-ces. Three comprehensive guides tocomputer technology are listed onpage 10.Nole: nanv Daosrams can be ooemled wilhsinsle rwirlhls ind leyboard einulators (e.g ,Keinx, the Adaptive frimware card, e&.i
-
Materials: RAPS (Readinq Ac-tivities Proiect. These materials aredesigned to support emergent
NAME OT'SOFTWARE SOURCE INTERFACE COMPUlER DESCRIPTION
Gemes 2 Play$125 US
Don Johnston Devdopme$trlEquipmarr (DJDD1000 N. Rand Rd, BIG 115,P.o. Box 639wauconda. lL 6m&t0639
Single swirch Mscintodr cames for 2 playersVariety of activiries
MS-DOS Built in prediction and abbrevistion expansion.Can vary text size.
Write:OulLoud$125 US
Dod Johnston Devdop||ratalF4uipm€$t (D JDE)(see previous page)
Keyboard idallernativeswith Ke:rx
Macintosh Ca$ vary text size aod bactgrourd colon,Has on-screen ribbon for fumlions.Spell checter.Uses with Co-writer (see below).
RATE ENIiANCEI\{ENT Note: These are €xsmples. Msny other prograrns are available.
Colwrit€r$290 US
D JDE (see above) Keyboard;Ke:nx allorsall olhers
Macintostt word prediction and abb reviadon etsansion.worts with standsrd word processors.
EZ Keys (fanily)$1395
Words+, lsc.P.O. Box 1229L,ancaster. CA 93584
Keyboerd ard MS-DOS Word prediction and abbrevislion expansionWorks wiih stndard word processers.Note: $150 US discount ifDrepay checldrnotey order.
PAL$99.95 US
Londer Soft$are94 Victoria cres Ro6dClascow Gl2 gJn, t K
Keyboard MS-DOS Word p.ediction.works with wordPerfect,Wordstar and PAETAR(included with order)
KeyREPt275 US
Pr€ntke Roui.i Co.1022 Heyl Ro6dWodter. oH 44691
Keyboard MS-DOS word prediction and abbreviation eryansionWorks wilh sny application ruffring unter wirdows
exceDt DOS wirdows.
PUNCTIONAI LITERACY Note: These sre examples. Many othe. progrdlns 8re avsilable.
CoDmuDity SigDs$239.95 US
Survivsl Words$149.95 US
Conover CompanyP.o. Box 155omro, wI 54963
Keyboard Apple ne, gsMS-DOS
Signs for places, inforfiraiion ard safetyAvail.ble in spanish.30 words essential for communily living.Available in Spanisfi.
Multisensorysoftwale
$79 US per ulit
lDragilart lDternitional, Ilc.307 Arizona St{€€tBisbee. AZ E5603
Mouse, soundboard or Echo,Touch Widow
MS-DOSApple tre, c,gs
Picture cues help students learn vocabulary.Sentence building & writing at 5 levels.Ersy record keepiry.Available in Spanislt.
Re{ding Rea[tisAt Rid. S€rls
$169.96 US ed
Te*Ler Support Softwarc (seeabove)
Keyboad Apple IIsMS-DOS
covering real life issues fscing teens, carEer pr€paralio[,jury series.Each theme has 15 stories ard writingactivities.
Usesa whole lanquaqe approach.
SARAW
REien€sb Development Corp.1046 Deep Cove RoadN. Vancouver, BC V7G 1S3,Crruda
Keyboard MS-DOS Talking word processor with literscy activilies, wordprediction.Designed for older sqrdent! who reid sld write rt grade2 to 6 level.
Readine Drosram with activiti$.
Story-Ware$95 US
DJDE (see above) Keyboard oralternativewilh Kernx
MrcintoGhwithHtDerc{rd
Allows individual to create stories and l,o add graphics,
pt"u""- nor., n" Ca.oti"a Literacy Cqrler is a valuable resource for information sbout lileracy snd persons with severc commulicalion imPairments. Fo{i'ii,iiiiiiJ';. ii.irJil, p"ii6i'ri-"iri"-u-r iiriia HJil'h ii;4.;;;, c""e"a Box #8t3s, ?30 Ai4;ori Ra., 1200. 'rhe university of Nordr ca'rolim atchapel Hill. chapel Hill,-NC 27599-8135. (sls) 966-7486. .lf,
lAt@qtativeC-ommunication
News
Comprehensive bibliosraphy onausmentative and ahemativecommunication: A kev to theAAC literature for clinicians andresearchers. Published in 1993.By Franklin Silverman this is avery valuable compilation!Available from coDI Publicalions,P.O. Box 261. Creendale. wI53129.
ReferencesI Verburg, c. (1992). sexual developrnentand disabilities: Myths and rdlities.Communic,ting Together. 10:1, p. 16.
A. ,. (19 ). Crowing up {Iong.bdon nieest. 14:3, 16-18.
3 Verburg, G. (1992). lfieperderce'92 orlhe revolution is now! CgsDlutilrtingIogelhel. 10:2, p. 1415,
e T'hurston, S. & Deegan s. (July, 1993).The psychosocial issues of int€grared"severely physically disabled stude s in the90's. Personal communication.
Nola Milen, I 10-3185 Forest Glade Drive,Windsor, Onlario, N8R lW7, CaMdr. (519)735-,1443 Phone ard FAX.
Frank Moore, P.O. Box 11,{45, Berkeley,cA 947012445 .
David Schmidt, Director Training ardDev€lopmenr, IntelliTools. lnc.. 5521 centralAve, Suite #205, Richmond, cA 94E04.(5 l 0) 528-06?0.
Bob segalman, Department ofJu$ice, 4949Broadway, Room 2028, Sacramento, CA95E20. (916\ 227-3541 nror|e 22?-3EE0 FAX.
Susan Thursion, Technology Access Clinic,Chedoke-McMaster Hospilals, Box2000,Slation 'A'. 1200 Main Street W. Hami&on.Ontario, Camda LEN 375, (416\ 521-21c0ext 7E33.
Michael B. Williams. P.O. Box 10098.Berkeley, CA 94709. (510) 649{[email protected]
Additional ReferencesAdamson, L., Romski, M., Deffebach, K.,Sevcik, R. (1992). Symbol vocabulary andthe focus of conve$ations: Augrnentiqglanguage development for youlh with rnedalretardation. tralll!&Lols8ggqb-ru{LHcltitgBrses&h. 35 : 1333-1343.
Lighr. J.. B€esley. M.. & Coll ier, B. (19E8).Transition lhrough multiple augmentative ardahernative communicstion syserns: Athree-year case study of a he{d injuredadolescent. AAC. 4i 1,2-14.
Mirenda, P. (1992). School to po$schooltransition planning for augmedlalive 8rdallernative communication users. (&1.) D. RBeukelman. SeBilsl!-it.jslccdhildI .nguage. Augmentative and ,lterutivecommunicarion fo. children. 13tZ, l3(.ll42,
Smith. A.K.. Thurston. S.. Ughl. J., Pamei,P. and o'Keefe, B. (19E9). The form ard useof written communication pmduced byphysically disabled individudsusi.tgmicrocomputer. AAC. 5:2, ll5-124.
Webber, S. & Tamura, S. (1992)Perspectives: Vulnemble. conmunicatinsTogether. 10:1, l&20
Techralogy Resources
You'll have access to lists ofcomputer softv/arc (and more), in-cludisg products rppropriate foradole,scents.
Note: Accessunlimited helps put thingstogether with f.ee telephone coNrltation.3535 Briarpark Dr. f102, Houson, Tx77042. Ot3\ 78r:7441.
