In di vid uals who are deaf-blind ac cess the world dif fer ently from their hear ing-sighted peers. To en sure

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1 Volume 9, Issue 1 What s My Role? A Comparison of the Responsibilities of Interpreters, Interveners, and Support Service Providers Susanne Morgan, M.A., C.I., C.T. In di vid uals who are deaf-blind ac cess the world dif fer ently from their hear ing-sighted peers. To en sure mean ing ful link ages to the en vi ron ment and equal ac cess to in for ma tion, a va ri ety of trained per son nel and sup port per sons are re quired. In re cent years much at ten tion has been given to the dif fer ent roles that in di vid - u als play in pro vid ing this sup port. The most fa mil iar type of sup port is that pr o vided by sign lan guage in ter pret ers. For mal in ter pret ing ser vices were es tab lished to meet the needs of deaf in di vid u als. In re cent years, these ser vices have been ex panded for per sons with com bined hear ing an d vi sion loss. This type of sup port, how ever, does not meet all of the unique com mu ni ca tion needs of deaf-blind in di vi d u als. Nor mal ev ery day life takes place in a va ri ety of set tings, in clud ing home, school, work, and rec re ation. For in - di vid u als who are deaf-blind, dif fer ent set tings re quire dif fer ent types of com mu ni ca tion sup ports. As the de - vel op men tal, ed u ca tional, and so cial needs of deaf-blind chil dren and adults in these set tings are better un der stood, the roles and re spon si bil i ties of sup port pro fes sion als evolve. Terms used to de scribe these roles, in clude in ter preter, in ter vener, and sup port ser vice pro vider (SSP). The fol low ing chart at tempts to cap ture the cur rent un der stand ing of these roles and re spon si bil i ties. Interpreter Intervener Support Service Provider Someone who Someone who Someone who Trans lates inf o rm at i o n from one mode or lang u a g e to ano t h e r (spoken lang u a g e to sign lang u a g e and vice versa) Works with deaf-blind peop l e of all ages Is a cond u i t through which inf orm a- tion flows In ter cedes bet we e n a child and the en vi ron ment, all o wi n g acc e s s to infor ma tion usual l y gained through vi - sion and heari n g Pri marily works with child r e n and young adults Fa cil i tates learni n g and the dev elopment of skills (e.g., rec e pt i v e and ex - pres sive comm un ic at i o n, int eract i v e be hav ior) In This Issue Pro vides supp o r t that en hances inde pend ence (e.g., fac i lit a ti n g commu ni ca tion, prov i di n g sighted guidance, and transp o rt at i o n to/from events) Pro vides serv i c e s to deaf-blind youth and adults who are able to make inde pend ent dec isi o n s Fa cil i tates int e ra ct i o n bet w e e n a deaf-blind person and the en vi ron ment What s My Role? A Comparison of the Personal Perspectives Responsibilities of Interpreters, Interven ers, and Support Service Providers National Parent Conference Report A Support Service Provider Program in Utah... 4 For Your Library Valued Outcomes for Students Who Are Deaf-Blind Announcements and Their Families... 5 Conferences Helping Children C ope With Grief... 7

2 Interpreter Intervener Support Service Provider Someone who Someone who Someone who May have rec e i v e d prof e ss i o n a l train ing in an int e rp r e t e r - t r a i n i n g pro gram Should hold nat i onal and/or state certif i ca tion/licensure and may have a col lege deg r e e May or may not have rec e i v e d spe - cific traini n g (howe v e r, traini n g or coursework is reco mm e n d e d ) Has varyi n g educ at i o n a l and voc a- tional exp er ie n c e s (some states off e r coursework/cer tif i ca tion) Abides by a code of ethi c s Acts in a mann e r that is gove r n e d by the loc a l educ at i o n agency and fed - eral educ at i o n laws Uses the Ind iv i du a l Educ at i o n Program as a roadmap for learni n g Is consi de r e d a paraprofessional and works with, but does not re place, the teacher Is enc o u ra g e d to rec ei v e basi c train - ing in the area of deaf-blindness, includ ing comm un ic at i o n strateg i e s, sighted-guide techn i q u e s, and cultural issu e s Has varyi n g educ at i o n a l and voc a - tional exp er ie n c e s Abides by stand a r d s est a bl i sh e d by the coo rd in a ti n g agency Be longs to a nat i o n a l / r eg i o n a l org a - ni za tion of cert if i e d int e rp r e te r s (e.g., Reg is try of Int e rp r e t e r s for the Deaf, Na tional Assoc iat i o n of the Deaf) Will work in vario u s envi ron ments (e.g., educ at i o n a l, medical, rel ig i o u s, so cial) May be paid in de pend ently, through an agency or by an emp l o y e r Is paid comm e nsur a t e with cert i fic a- tion & loc a l stand a r di z e d fees Is req u i r e d to ind ep e n de n t l y maint a i n cer tif i ca tion through prof e ss i o n a l de vel op ment May or may not be in cont a c t with other paraprofessionals Works mainly in an educ at i o n a l set - ting but may also pro vide assi st a n c e in the comm un i t y (e.g., daily livi n g skills, medic a l situat i o n s, voc at i o n a l en vi ron ments) Is paid by the loc a l educ at i o n agency or a comm un i t y prov i d e r Is exp e c t e d to att e n d works h o p s of - fered in educ at i o n a l sett i n g s Must rem a i n imp a rt i a l at all times Wears dif fer ent hats (e.g., as int e r- preter, guide, fac i lit at o r ) Must keep all inf o rm at i o n conf id e nt i a l Is all o we d and ex pected to share perti nent inf orm at i on with team members (e.g., pare n t s, teache r s, rel a t e d ser vice prov i de r s) Is exp e c t e d to keep a pro fes sional dis tance Acts as a cond u i t (does not teach and is not resp o nsib l e for ensu ri n g that the deaf-blind indiv i dual learns what is bei ng shared) Main tains an educ at i o n a l (teacher-student type) rel at i o nsh i p Is acc o u n ta b l e for dec isi o n - m a k i n g to en hance learni n g Al ways keeps opini o n s to him/herse l f Em powers indiv i dual to make his/her own dec isi o n s May bel o n g to the coo rd in a ti n g agency s netwo r k of SSPs May int e ra c t with other SSPs duri n g lo cal or nat i o n a l events Pro vides ass i st a n c e in vario u s set - tings, inc l u di n g the home and com mu nity Is usual l y a volu nt e e r, unl e ss funds have been all oc a t e d Is usual l y not req u i r e d to att e n d fur - ther traini n g but is en cour aged to im - prove communication skills and inter - act with the deaf-blind comm uni t y Re mains impartial but has more flexibil ity than an int e rp r e t e r Is exp e c t e d to keep inf o rm at i o n con fi den tial Is exp e c t e d to act in a pro fes sional man ner, but may dev el op perso n a l re la tion ships Does not teach but does prov i de ac - cess to the env ir onm ent to emp o we r the deaf-blind pers o n May prov i d e feedb a c k / o p i ni o n s when asked 2

3 References Alsop, L., Blaha, R., & Kloos, E. (2000). The intervener in early intervention and educational settings for children and youth with dea fblindness. (NTAC Briefing Paper). Monmouth, OR: NTAC, Teaching Research, Western Oregon University. Belote, M. (Nov ember 1996). Effective use of interveners for students who are deaf-blind. Paper presen ted at the TASH Conference, New Orleans, LA. Deaf-Blind Service Cen ter (November 2000). Support service provider program guidelines. Seattle: Deaf-Blind Service Center. Deafblind Services Minnesota (1998). Su pport service provider philosop hy and guidelines. Minneapolis: Deafblind Services Minnesota. Helen Keller National Center (1999). SSP fact sheet. Sands Point, NY: HKNC. Registry of Interpreters for the Deaf (Rev. ed. 1996). Code of ethics of the Registry of Interpreters for the Dea f. Silver Spring, MD: RID. Registry of Interpreters for the Deaf (1997). Interpreting in educational settings (K 12). (Standard Practice Paper).Silver Spring, MD: RID. Registry of Interpreters for the Deaf (1997). Professional sign language interpreting. (Standard Practice Paper). Silver Spring, MD: RID. Registry of Interpreters for the Deaf (1998). Generalist certification (CI and CT) examination information bulletin: Introduction to the national testing system (4 th ed.). Silver Spr i ng, MD: RID.!!!!!!! Deaf-Blind Per spec tives Volume 9, Issue 1!!!!!!!! Ex ec u tive Ed i tor Man aging Ed i tor Pro duc tion Ed i tor John Reiman Peggy Malloy Randy Klumph Teaching Re search Teaching Research Teaching Re search Con sulting Ed i tors Harry An der son, Florida School for the Deaf and Blind; Vic Baldwin, Teaching Re search; Chigee Cloninger, Uni ver sity of Ver mont; Mike Col lins, Perkins School for the Blind; June Downing, Cal i for nia State Un i ver sity Northridge; Bud Fredericks, Ed i tor Emer i tus; Jay Gense, Or e gon De part men t of Ed u ca tion; Ka ren Goehl, In di ana Deaf-Blind Pro ject; Lori Goetz, San Fran cisco State Uni ver sity; Richelle Hammett, New Mex ico Deaf -Blind Pro gram; Gail Leslie, Teaching R esearch; Betsy McGinnity, Perkins School for the Blind; Barbara A. B. McLetchie, Boston Col lege; Kathy McNulty, Helen Keller Nat ional Cen ter; Nancy O Donnell, Con sul tant; Marianne Riggio, Perkins School for the Blind; Art Roehrig, Gallaudet Uni ver sity; Rosanne Silberman, Hunter Col lege.!!!!!!!! Dea f-blind Per spec tives con sid ers all un so lic ited manu scripts and em ploys a re view pro cess to con sider whether they will be pub lished. Some manu s cripts may re ceive anon y mous peer re view. Send both a printed copy and a disk cop y (Win dows for mat) to: Dea f-blind Per spec tives Teaching Re search Di vi sion Ph. (503) N. Monmouth Ave. TTY (503) Monmouth, OR Fax (503)

4 A Support Service Provider Program in Utah Cordie Weed There are not very many deaf-blind peo ple in Utah. Compared to the num ber of peo ple who have other dis abil i ties, we are a small group, con sist ing of 150 adults. Ser vices for adults who are deaf-blind are lim ited. State wide, there is only one deaf-blind spe cial ist and one part-time re ha bil i ta tion coun - selor. There are also in ter pret ers, funded by the state leg is la ture, for deaf-blind peo p le who re ceive train - ing at the Di vi sion of Ser vices for the Blind and Vi - sually Im paired or who wish to at tend func tions there or at the Di vi sion of Ser vices for the Deaf or Hard of Hear ing. These ser vices are very ap pre ci - ated, but they barely scrape the sur face of the un met needs of deaf-blind peo ple in Utah. Re cently, how ever, a new ser vice be c ame avail able. Be gin ning July 1, 2001, the state leg is la ture funded a sup port ser vice pro vider pro gram. For two y ears, two of my blind friends and I went to the state cap i - tal in Salt Lake City. As mem bers of the Leg is la tive Co ali tion for Peo p le with Dis abil it ies, we asked the leg is la ture to fund a sup port ser vice pro vi der (SSP) pro gram for deaf-blind adult s. We spent many hours talk ing to the leg is la tors. We also con tacted them by phone and mail and in spired oth ers to call and write let ters. We let them know that we wanted to be more in de pend ent and to live in our own homes. We asked for fund ing for the SSP pro gram, and we got it. For many deaf-blind peo ple, life can be pretty empty and lonely. For ex am ple, one man who was born deaf-blind and who is in a nurs ing home has no way to com mu ni cate with the staff there. They do not know sign lan guage or how to speak to him. There is no way for him to get in v olved in ac tiv i ties. He just sits in a chair all day with ab so lutely noth ing to do. There is also a woman whose fam ily wants to put her in a nurs ing home be c ause they do not want to care for her. They feel that they can not cope with her needs. In stead, she chose to mov e into a hous ing com plex for peo ple who are dis abled or have low in - comes. This woman is un able to do her own shop - ping or care for her per sonal busi ness. She can not drive her self an y where. She needs help to be able to live in de pend ently. I know a man who was born deaf and spent most of his years in the deaf com mu nity. As he got older, he lost his sight an d was un able to con tinue work ing. He is now to tally blind. Re cently, he and his deaf wife went to a so cial ac tiv ity at the Deaf Cen ter. He sat there and was bored be c ause he could not see the sign lan guage be ing used and no one thought to sign in his hands. When he and his wife left, he asked his wife if she had seen the man who had been his dear - est friend for many years. She told him that he had been sit ting next to him all eve ning. His friend had not said one word to him and the man was heart bro - ken. Some deaf-blind peo p le live in their own homes and are mar ried and have chil dren. Even though their fam i lies take care of them, they would still like to have some one take them out for so cial ac tiv i ties away from the fam ily, to give them a change and to give the fam ily a rest. I am con sid ered deaf-blind my self. I live in my own home and have a hus band and two chil dren. My daugh ter is mar ried and has a baby. My s on is grown but still lives at home. Both of my chil dren grew up cop ing with my dis abil i ties. I have Usher Syn drome. I am se verely hard of hear ing and have very lit tle re main ing vi sion. Even though my fam ily has lived with my in creas - ing dis abil ity, they grow im pa tient and frus trated when I can not hear or see some thing. I do not al ways hear ex actly wh at they are say ing, so com mu ni ca - tion is dif fi cult and mis un der stand ings fre quently oc cur. My hus band has been forced to take on more re spon si bil i ties be cause I can not shop by my s elf or travel alone on pub lic trans por ta tion. These prob - lems will only in crease as my con di tion wors ens. I love to hear wh at is be ing said. I love to be a part of it all, but I am not be caus e I can not hear or see. I am left out a lot, and it is very lonely. When ever I get frus trated, I can not walk out or go some where to work it off. I have to stay put un til it builds to the point where I ex plode. Some times I feel like I am in a box wh ere I can not move or let out my frus tra tions. I was raised to be in de pend ent and to take care of a fam ily as well as my self. I want to con tinue to do that. I would like the SSP to help me be c ome more in de - pend ent to help me shop and walk my dog (a pure bred beagle), to read my mail and other cor re - spon dence to me, to be my eyes and ears at so cial ac - tiv i ties, and to take me to my ap point ments. This would also help by tak ing some pres sure off of my fam ily mem bers. It means so much to me to be able to do more for my self. It makes me feel more like a hu man be ing. We deaf-blind peo p le need ser vice pro vid ers. We need help with daily liv ing in or der to be in de pend - ent. It is so much cheaper to have a sup port ser vice pro vider than to be put in a nurs ing home. A sup - port ser vice pro v ider can be a friend to a deaf-blind 4

5 per son and can make the per son s life brighter. SSP s as sis tance can also make it eas ier for fam ily mem bers by help ing to re lieve frus tra tion and stress. I re ally hope this pro gram will work well for me, for oth ers who are deaf-blind, and for the chil dren who will soon be come adult s. I hope we will have this pro gram for many years and that it will be suc cess - ful. I want to make it work and help deaf-blind adults be in de pend ent and live hap pily. I feel very strongly about this pro gram.!!!!!!! Valued Outcomes for Students Who Are Deaf-Blind and Their Families: Results of a Survey of State Deaf-Blind Projects Lori Goetz San Francisco State University Namita Jacob Jt. Doctoral Program, San Francisco State University - University of California, Berkeley Nora O Farrell San Francisco Unified School District Are schools ef fec tively meet ing the ed u ca tional needs of their spe cial ed u ca tion stu dents? An swers to this ques tion can be pro vided from a va ri ety of per spec tives. A fed eral law, the Gov ern ment Per for - mance and Re sults Act of 1993 (GPRA) [Pu bic Law No ], re quires fed eral agen cies to im prove pro gram ef fec tive ness and pub lic ac count abil ity by fo cus ing on re sults, ser vice qual ity, and cus tomer sat is fac tion. It re quires the es tab lish ment of mea sur - able goals that can be re ported as part of the fed eral bud get ary pro cess. In re sponse to GPRA, the U.S. De part ment of Ed u ca tion s Of fice of Spe cial Ed u ca - tion Pro grams (OSEP) de vel op ed guide lines for spe - cial ed u ca tion pro grams that list ob jec tives and per for mance in di ca tors for these ob jec tives (Of fice of Spe cial Ed u ca tion Pro grams, 1999). Th e unique ness of the abil i ties and needs of deaf-blind chil dren poses chal lenges for the cre ation of out comes and tools that mea sure those out comes. To de ter mine ways i n which the OSEP guide lines could be made more mean ing ful and re flec tive of the spe cific ed u ca tional needs and goals of deaf-blind chil dren, we de vel oped a ques tion naire for state deaf-blind pro ject per son nel. It asked re - spon dents what they con sid ered to be val ued out - comes for deaf-blind stu dents, their fam i lies, and state and lo cal sys tems that pro vide ser vices. We de - fined a val ued out come as a re sult of the school ing pro cess that is both in di vid u al ized and per ceived as pos i tive and de sir able. The de vel op ment of so cial in ter ac tion skills in greet ing peers or ad vo cacy skills in pro mot ing in clu sive school ing to a PTA group are ex am ples. The ques tion naire also asked re spon - dents to iden tify tools and strat e gies used to mea - sure these out comes. Results of the Questionnaire In 1 998, the ques tion naire was sent to the fifty ex ist - ing state deaf-blind pr o jects across the coun try. These pro jects are fed er ally funded train ing and tech ni cal as sis tance en ti ties serv ing schools, agen - cies, and fam i lies of deaf-blind chil dren and youth. Pro ject staff mem bers were in a po si tion to iden tify out comes that ad dress the dif fer ent per spec tives of groups and in di vid u als in volved in the lives of chil - dren and youth who are deaf-blind. Twenty-nine of the fifty ques tion naires were re turned, a re sponse rate of 58 per cent. The ques tions were brief and open-ended and did not re quire re spon dents to use a spe cific for mat. An - swers ranged from sin gle words, phrases, and nu m - bered lists to sen tences and para graphs. Given this di ver sity in for mat, the an swers were an a lyzed by two in de pend ent rat ers and sum ma rized in cat e go - ries of val ued out comes (see ta ble). The cat e go ries en abled a suc cinct syn the sis that high lighted ma jor fo cus ar eas for stu dents, fam i lies, and sys tems. The rat ers de vel oped ten cat e go ries of val ued out - comes for stu dents, eight for fam i lies, and five for sys tem -level en ti ties. In ad di tion to iden ti fy ing spe - cific val ued out comes, sev eral state pro jects noted that, ide ally, val ued out comes for stu dents and fam - i lies should be de vel oped on an in di vid ual ba sis. Oth ers com mented that val ued out comes for deaf-blind chil dren and their fam i lies are no dif fer - ent from those fo r chil dren with out dis abil i ties. In each of the three fo cus ar eas (stu dent, fam ily, sys - tem ), cer tain re sponses were men tioned re peat edly by s ev eral re spon dents. Al though the num ber of re - sponses in each cat e gory is but one in di ca tor of im - por tance, it is an in di ca tion of the val ued out comes that are in the fore front of the re spon dents con - scious ness. The ideas ex pressed most of ten in each cat e gory are dis cussed fur ther in this sec tion. Growing con cern with the value and mean ing of avail able in ter ven tions and ser vices is re flected in all of the re sponses. Mean ing fu l par tic i pa tion of the deaf-blind in di vid ual at home, school, and in the com mu nity is a re cur ring theme. 5

6 Stu dent Out comes. Com mu ni ca tion skills and so cial skills an d friend ships were men tioned re - peat edly as val ued goals for stu dents. Sev eral re - sp on dents stressed the im por ta nce of com mu ni ca tion skills that are func tional and work across dif fer ent en vi ron ments (e.g., both at home and at school). Some re spon dents stressed the im - por tance of the qual ity of re la tion ships. They noted that there is a dif fer ence be tween re la tion ships with paid staff and those that oc cur with friends and fam - ily, and they em pha sized the need to en sure that re - la tion ships are mu tual and long last ing. Ef fec tive com mu ni ca tion and good so cial skills are im por tant el e ments for suc cess in school en vi ron - ments. The stress on func tional com mu ni ca tion and mean ing ful friend ships re flects the out comes-based plan ning em pha sized in the 1997 reauthorization of the In di vid uals with Dis abil ities Ed u ca tion Act (IDE A). There has been con sid er able prog ress in the de vel op ment and re fine ment of in ter ven tions de - signed to im pr ove the so cial in ter ac tion and com - mu ni ca tion of stu dents with dis abil i ties in reg u lar ed u ca tion set tings (Hunt, Farron-Davis, Wrenn, Hirose-Hatae, & Goetz, 1997; Odom, McConnell, & McEvoy, 1992; Strain & Kohler, 1995). Fam ily Out comes. The avail abil ity of fam - ily-specific train ing was the most fre quently men - tioned out come cat e gory for fam i lies. Re spon dents iden ti fied a need for train ing in the fol low ing ar eas:? spe cific skills to sup port the child s de vel op ment, such as adapt ing en vi ron ments and ma te ri als and learn ing com mu ni ca tion skills and tech - niques;? aware ness of avail able re sources;? ad vo cacy skills. Sys tem Out comes. Sys tem out comes de scribe re - sults that af fect the struc tures and ac tiv i ties of or ga - ni za tions rather than in di vid u als. Re sponses em pha siz ing col lab o ra tive plan ning for or ga ni za - tions were the most com monly iden ti fied val ued out comes. The in volve ment of par ents and chil dren in a col lab o ra tive plan ning pro cess fos ters smooth tran si tions and the achieve ment of in de pend ence for stu dents. Pa ren tal in volve ment in ed u ca tional pro gram and tran si tion plan ning has also been found to pos i tively af fect stu dents ac a demic out - comes (Morningstar, Turnbull, & Turnbull, ; Everson & Moon, 1987; Sales, Metzler, Everson, & Moon, 1991). In fre quently Re ported Re s ponses. Equally in ter - est ing and wor thy of fur ther re search are the cat e go - ries that re ceived th e least at ten tion from re spon dents. Only a small num ber of re spon dents men tioned ac a demic skills and self-advocacy as val - ued out comes for stu dents. Only a few men tioned em pow er ment as an im por tant out come for fam i lies or for in clu sion as a sys tem -level out come. Em pow - er ment and in clu sion have re ceived a great deal of at ten tion in the gen eral lit er a ture on spe cial ed u ca - tion (Dunst, Trivette, & D eal, 1994; Falvey, 1995). It is sur pris ing that they re ceived such scant at ten tion here. Categories of Valued Outcomes Stu dent Out comes Num ber of Re sponses So cial skills and friend ship 25 In clu sion into com mu nity 16 Com mu ni ca tion skills 16 Self-help and in de pend ent liv ing skills 15 Work/Ca reer 14 Healt h, vi sion, and hear ing 12 Rec re ation and lei sure 8 Tran si tion 6 Ac a demic skills 5 Self-advocacy 4 To tal Stu dent Re sponses 121 Fam ily Out comes Num ber of Re sponses Fam ily-specific train ing 20 Valued mem ber of fam ily and com mu nity 15 Re sources for adult in de pend ence 14 Re sources for fam i lies 12 Fam ily sta bil ity 8 Con nec tions for fam i lies 8 Fam ily/pro fes sional col lab o ra tion 6 Em pow er ment of fam i lies 3 To tal Fam ily Re sponses 86 Sys tem Out comes Num ber of Re sponses Col lab o ra tive plan ning 30 Staff avail abil ity and train ing 18 Re sources for com mu nity in clu sion 17 IEP/IFSP qual ity 13 Range of ed u ca tional place ment op tions 10 In clu sion 5 To tal Sys tem Out comes 93 6

7 Assessment Issues The IDE A Amend ments of 1997 place great em pha - sis on mea sur ing re sults through im pr oved ac - count abil ity an d data col lec tion ef forts. There is a re newed re li ance on the use of as sess ments to mea - sure the per for mance of stu dents and their prog ress to ward meet ing iden ti fied stan dards. In re sponses to our ques tion naire, we iden ti fied a to tal of eigh - teen as sess ment tools an d mea sures, in clud ing sev - eral cur ric ula and in for mal meth ods of data col lec tion such as case stud ies an d in ter views. No tool was men tioned with suf fi cient fre quency to be rep re sen ta tive of the re sponses. Conclusion The OSEP guide lines de scribe ob jec tives in gen eral terms such as im prove ed u ca tional re sult s for chil - dren with dis abil i ties. The re sults of the ques tion - naire re ported here re flect how state deaf-blind pro ject per son nel in ter preted these ob jec tives in terms of ac tual prac tice with stu dents, fam i lies, and ser vice pro vid ers. For ex am ple, de vel op ment of com mu ni ca tion skills and so cial skills and friend - ship emerged as key el e ments for the ob jec tive of im - prov ing ed u ca tional re sults. There are a cou ple of lim i ta tions to the re sults of this study. First, the 58 per cent re sponse rate lim its the gen er al ity of the find ings. A fur ther lim i ta tion is that the ques tions asked were very brief. A more de tailed sur vey or the use of fo cus groups would add to the depth of the in for ma tion that could be ob tained. The de v el op ment of val ued out comes for stu dents, fam i lies, and sys tems can have di rect im pli ca tions for the eval u a tion of pro grams serv ing stu dents who are deaf-blind and their fam i lies. Pro grams, ser vices, and tech ni cal as sis tance ef forts that are con sis tent with the val ued out comes re ported here will strengthen the align ment be tween ac tual prac - tice and the goals of those who as sist and sup port prac ti tio ners work ing with deaf-blind chil dren. Fur ther study and de vel op ment of val ued out comes for deaf-blind stu dents and the cre ation and use of tools t o mea sure prog ress to wards ed u ca tional goals should be a pri or ity for the field. References Dunst, C. J., Trivette, C. M., & Deal, A. G. (Eds.) (1994). Supporting and strengthening families: Methods, strategies, and practices. Brookline, MA: Brookline Books. Everson, J. M., & Moon, S. M. (1987). Transition services for young adults with severe disabilities: Defining professional and parental roles and responsibilities. Jou rnal of the Association of Persons with Severe Handicaps, 12 (2), Falvey, M. A. (Ed.) (1995). Inclusive and heterogeneous schooling: Assessment, curriculum, and instruction. Baltimore: Paul H. Brookes. Hunt, P., Farron-Davis, F., Wrenn, M., Hirose-Hatae, A. & Goetz, L. (1997). Pro motin g int eractive partnerships in inclusive educational settings. Journal of the Association of Persons with Severe Handicaps, 22 (3), Morningstar, M. E., Turnbull, A. P., & Turnbull, H. R. ( ). What do students with disabilities tell us about the importance of family involvement in the transition from school t o adult life? Exceptional Children, 62 (3), Odom, S. L., McConnell, S. R. & McEvoy, M. A. (Eds.) ( ). Social competence of young children with disabilities. Balt imore: Paul H. Brookes. Office of Special Education Programs, U.S. Department of Education (1999). FY 2000 Annual Program Performance Plans under GPRA: Individuals with Disabilities Education Act (IDEA). Submitted to Congress February 25, Sales, P., Metzler, H. M., Everson, J. M., & Moon, M. S. (1991). Qualit y indicators of successful vocational transition pr ogram s. Jo ur nal of V ocational Rehabilitation, 1 (4), Strain, P. S., & Kohler, F. W. (1995). Analyzing predictors of daily social skill performance. Behavior Disorders, 21 (1), !!!!!!! Helping Children Cope With Grief: A Discussion of Options for Parents of Deaf-Blind Children Compiled by Nancy O Donnell Helen Keller National Center When it co mes to par ent/child di a logues, there are few top ics that cause as much anx i ety as sex and death. When those top ics are con sid ered in the frame work of dis cuss ing them with chil dren who are deaf-blind, many fam i lies and pro fes sion als are left speech less. Early this year, I re ceived an from a mother in New Zea land who was look ing for guid ance on how to help her son grieve the loss of his grand fa ther: Hi Nancy, 7

8 On Christmas Day my Dad passed away sud - denly and as you can imagi n e, this has been trau matic for us all but most of all for Chris [age 31, deaf-blind due to cong e nit a l rubel l a syn drome]. The day aft e r, he came down with the flu and has been in bed since. He is medi - cally much better but emot i o na l l y he is not. Do I start gett i ng a litt l e tough and say You have to get out and about or do I let him just do his own thing? He also has di a be tes so has to have ex - er cise I just don t know what to do. Thank you. There is no one here to help and doct or s don t re ally und e rst a n d. My re sponse was: My first re ac tion is that each pers o n grieves in such a differ ent way, you might have to just watch Chris to see how he needs to do this. I per son ally am not a supp o r t e r of the tough ap - proach so soon af ter your loss. What is Chris s com mu ni ca tion like? Does he talk? Sign? Draw pic tures? Is it just through beh a vi o r s that you know how he s feeli ng? Is your rel at i o nsh i p such that you and he can just spend time to - gether doi n g norm al things? Or can you sit with him in his room, hold his hand, just be with him, cry with him? Would it help to take out pict u r e s of your fat h e r and look at them and remem ber? Talk? Remin i sc e? Give me more inf orm at i on about how you two comm un ic a t e and maybe I can be more helpf u l. In the meant i m e, make sure that YOU have sup ports for yoursel f, to help you through your griev ing. I ve found that no matter what your re - la tion ship was with your pare n t good, bad or in dif fer ent a pare n t is a pare n t and the loss is pro found. Be gent l e on yoursel f... give your - self time and all o w yoursel f to feel all of the feel - ings that are sure to bubb l e up.... Feeli n g s are tough to deal with and talk about, whether you re deaf-blind or heari n g - si g h t e d. But talki n g about feelings and deali n g with them are the key to heali n g any situat i o n.... You re on your way! The mother re sponded: Thank you! Thank you! It s the first time where I have had someo n e to talk to and who und e r - stands in 30 years!!!!!! (apart from fami l y and friends). Chris is tot a l l y deaf and blind (he had a lit tle sight but lost it 10 years back). He is a profi - cient signer in New Zeal a n d sign, Australasian... and [uses] the Americ a n alp h ab e t, but [talk - ing about] feeli n g s is a hard one. Last night I enticed him out and we... bought a life jacket that he des per ately wanted and it was a joy to see the smile on his wee face. Tod a y... he said he would come down and clean the bath, so I thanked him a hund r e d times and told him what a kind man he was. We are goi ng away for three days, hopi n g that makes Chris a litt l e happ i e r. And later that week: Last night I sat with Chris and we talked about Grand fa ther re mem ber ing this and that and I told him those were the things to rem em - ber him with [and] not to think about when he was in the hospit al. (Chris was besi d e Dad when he passed away what a comf o r t that must have been for Dad.) Christ op h e r also in - sisted he was goi n g to [be a pallb e a r e r for] Grand fa ther. You have no idea how our fami l y is feeli ng about this comm un ic at i o n we now have with you. In our count ry, we have very litt l e supp o r t. Chris [is]... one of a handf u l of tot a l l y deaf-blind livi n g in the comm un i t y (we had to fight the Gove r nm e n t when he was five not to have him put in an inst it ut i o n!!!!!!!!). So a big thank you for the first time, I don t feel so alone. Through the Helen Keller Na tional Cen ter, we have a group of fam ily mem bers, pro fes sion als, and deaf-blind adults who are in ter ested in top ics re - lated to those with con gen i tal ru bella syn drome. We put the ques tion of griev ing and this spe cific ex am - ple out to this group. The re sponses were so help ful and sup port ive that we de cided to share them with the deaf-blind com mu nity at large. We hope that these shared in sights and ex pe ri ences will be use ful to those who have yet to deal with this dif fi cult top ic. From a mother in New York: A litt l e over a year ago we lost five fami l y mem - bers in one month my grandm ot her, two un - cles, a cousin, and my brother whom [my daugh ter] was very close to then her cat. It was very hard to rea l l y know what she was feel - ing. She doesn t have tears and I never know if she s cryi ng. She would stay in her room, sit ting in the chair [and] holdi ng a stuffed an i mal to re - place the cat, or she was in the bed asleep. The staff [at the cent er she att e n d s] was very helpf ul be cause she was able to comm un ic a t e what she was feeli n g to someo n e there. I still am not sure how she is deali n g with griev ing, but she seems to be doi ng all right. As a mother, I want to fix eve r yt h i n g, but I can t. I need all the help I can get. From a pro fes sional in Mas sa chu setts: One of my stud e n t s who is deaf-blind lost her fa ther last fall. We reco mm e n d e d crea ti n g a vi - sual schedu l e of events (wake, serv i ce, fun e r a l, pic tures of relat i v es who will be att e n di n g the events, etc.) for the days just aft e r the death. The mother also disc u s s e d the death and all the events with her and [put tog e t h e r ] a photo al - bum [for her daughter to bring back to her pro - gram]. Her mother said that our rec om men da tions were helpf ul and that the daugh ter was dealing quite well with her griev - ing. The daught er was back to her regul ar 8

9 sched ule on the third day, and she was fine with it. Keeping busy and gett i n g up and around is an im por tant part of a grievi n g proc e ss. Havi ng reg u lar schedul ed events rel a t e d to the fami l y mem ber who has passed away is also imp o r - tant (spec i al church rel a t e d mem or i a l act i vit i es, grave visi t s, conver sa tions that are supp o r t e d by vi sual or tact i l e aids, small fami l y cerem o- nies acc o r di n g with the fami l y trad it i o n s, etc.). Talking is helpf u l but [some] deaf-blind peopl e need conc r e t e obj e c t s and spec i f i c act i o n s to sup port them in their grief. What kind of supp o r t is the mother gett i n g at this point? She has lost her fat h e r, and she is go ing through a rough time hersel f. She has my sym pa thy, and I hope that she is taki ng care of her self too. From a pro fes sional in Texas: Per sonally... I don t trust lang u a g e too much on this stuff. Demo nst r a t i n g the ritua l s that we pur sue is where you get started. Who knows what each individual soaks up from these tradi - tions? Much of this is ind iv i dua l l y tail o r e d... even in our hearing -sighted world. Much instruc tion about death is learned through obser - va tion of daily life, and for child r e n it oft en be gins with the passi n g of a pet. When I was young, we kids, with no sugg e st i o n s or inv ol v e- ment by my pare n t s, had fun e r a l cerem on i e s for our pets, comp l e t e with litt l e crosses which sym bol ized to us the prot e ct i o n of the spirit u a l world. Did we know what the crosses meant? Not rea l l y. But the purp o se was served. I think that havi ng a deaf-blind pers o n take part in some asp e c t of the ritua l s of their fami l y is what brings them into the exp er ie n c e. It is up to each family to creat i v el y find the best way to become part of the exp er ie n c e. Part i cip at i o n in the ritu a l is not just for the pers o n... but for ev - ery one con nected to the perso n. Death engages us in an exp er ie n c e of closen e ss with com mu nity. Since lang u a g e is so ina deq u a t e, we prescribe rituals to help us experience (celebrate) the needed comm un i o n of our lives. I wond e r about the hand l i n g of obj e c t s which the perso n used. I perso na l l y have such objects, which I keep in a perso n a l shrine. Perhaps it would be possibl e to place such obj e c t s in a memo r y box that could be visi t e d to rem i nd the perso n of the indiv i dual they lost. They may be able to rel a t e this to memo r y boxes, etc., that they have about places they have been. From a pro fes sional in NewYork: There is no reas o n why a pers o n with deaf-blindness will not exp er ie n c e loss as pro - foundly as ev ery one else. Some time ago, Eliz - a beth Kubler-Ross outl i ned stages of grief.... It was once thought that eve r yo n e had to go through those stages in ord e r. Now, years later, we know that is not true, and that there are other asp e c t s of grief.... For a pers o n with lim - ited form al lang u a g e, the proc e ss of exp l a i ni n g what has happ e n e d and list e ni n g to their feel - ings can be compl ic at ed. The imp o rt a n t part is to be there with them and list e n empathically. It is esp ec i a l l y imp o rt a n t that the fami l y and other sup port peop l e have a comm on und e rst a n di n g of the lang u a g e they are usi n g to exp l a i n what has hap pened. For exa mp l e, has the grandf a- ther died, gone to heaven, etc. It would also be imp o rt a n t, espec i al l y when the deaf-blind per son has had a close rel at i o nsh i p with the one who has died, to try to und e rst a n d if they feel in any way resp o nsib l e or if they have any un fin ished busin e s s. As far as how long to all o w them to be depressed, idle, sleep, etc., recognizing the feel - ings of sadn e s s does not mean wall o wi n g in it or all o wi n g it to int e rf e r e with the quali t y of the in di vid ual s life. It would be imp o rt a n t for the other fami l y memb e r s and supp o r t peop l e to en cour age good nut r it i o n and act i vi t y, short walks or fav o ri t e outi n g s, etc., while still acknowl edg ing that ev ery one is sad for their loss. Some times, grievi n g peop l e feel that havi n g fun is a bet r ay al to their loved one. Time heals, but there is no set amount of time. Also, all those feel ings will emerge at diff e re n t times and be trig gered by diff e re n t events, places and peo - ple. It sounds to me like this young man is very lucky to have such a sensit i ve and cari n g mother, who is concerned about him, while grieving herself. I commend her. From a par ent in Wash ing ton State: I have been thinki ng about the seve r a l deaths in our family and trying to recall my daughter s re - ac tions. The pers o n she was close s t with was my fat h e r, who died when she was six. She at - tended resid e nt i a l school then. Dad died a week bef ore school beg a n so she was not with her fami l y in the weeks right aft e r he died. On the day he was buri e d, we se lected a plant from the fun e r a l serv i ce. We took it to plant outsi de the wind o w of her classr o o m. She helped plant it and tend it. When a fami l y memb e r dies I have my daught er touch the dec e a s e d to feel the diff e re n c e in his or her body. We talk about the things they have done tog e t h e r and that they won t be able to do that any long e r. We ack n o wle d g e that we are sad. I have inc l u d e d her in as many fun e ra l s and mem or i al serv i c e s as reaso na b l e so that she has first hand knowle d g e of the end of a loved pers o n s life. She now und e rs t a n d s the mean ing of death and knows that pers o n won t be there to do things with. I don t know if she 9

10 has ever grieved. I think grievi n g com e s from hav ing exp e ct at i o n s that can t be fulf i l l e d. I don t think my daught er has exp e ct at i o n s of many peopl e. Compared to othe r s of her age, she has so litt l e cont r o l of her life that she fairly well acc e p t s that which com e s... ano t h e r one of those mixed blessi n g s that com e s from her con di tion. I am conc e r n e d that the mom soon all o w herse l f to grieve for the loss of her fat h e r. We pare n t s have put the needs of our child r e n first for so long that we have bec o m e very good at den yi n g our own needs. I sugg e st [that] she mark a day on the calendar, make arrangements for some - one to care for Chris, and clear the deck of other di ver sions. Planning to spend time ref l e c ti n g on the joys and sorr o ws she exp er ie n c e d with her fa ther will help her heal more quickly. Grieving ig nored does not go away. It waits and can de - mand to be dealt with at the most ino pp o rt u n e time. From a mother in North Da kota: There were many good res p o n s e s so far that will be helpf u l to all of us. My res p o n s e to this mom will be from a spirit ual point.... Our son is deaf-blind, low-functioning, ret a r d e d, age 35. He lacks pa tience and has screaming and slap - ping beh a v iors, yet... sits quie t l y through an hour and a half church serv i ce. There have been many times when I ve had to ask the Lord to prep a r e Jeff for a fut u r e event as there was no way I could exp l a i n it to him. Jeff has hand l e d many a situat i o n as if someo n e had exp l a i n e d it to him. Helen Keller said she had alwa y s known the Lord, she just didn t know his name. I... just wanted to rei nf o r c e the imm e n se wisd o m and help from our Heave n l y Fa ther that passes hu - man und e rst a n di n g. From a fam ily ther a pist in Cal i for nia: On the topic of griev ing, I find that all the re - sponses sent in so far are exc e ll e n t! There has been much writt e n on the topic of ber eav em ent and many good books in the stores. Adapting those ideas and conc e p t s to deaf-blindness is a chal lenge and all the resp o n se s have done so in a beaut if ul way. Grief is a natur a l res p o n s e to loss of any kind. I would be [susp ic i o u s] if there were no grief re - sponses from this young man who has lost a grand fa ther. His mother is also grievi ng and her ac tiv i ties (desc r i b e d in her resp o n se s) with her son are exac t l y what they both need at this time. Both mother and son will find it hard in the begin ning to def i n e their feeli n g via lang u a g e and that is all right. It will come later just bei ng there phys i cally and shari n g with each other qui etly will help ease the pain and conf usi o n. There is no time limit to be set on easi n g out of griev ing. Cont i n u i n g the act i vit i es that have been started bet we e n mother and son as well as some of the other sugg e st i o n s will even tu ally lead to resol ut i o n. From a mother in Mis souri: My son s fat h e r died Oct ob e r A staff mem ber, who was a very int ui t i v e young man, took Paul to see his dad an hour bef o r e he passed. Paul felt his face and held his hand. The young man obse r v e d the very diff e re n t ex - pres sions that were occ u rr i n g on Paul s face and said that on some level Paul knew what was happ e ni n g. Per haps if there is a fav o ri t e obj e c t from the Grand fa ther, the young man could keep that as a rem e mb r a n c e. That might help. And from an other mother in Mich i gan: Af ter readi n g the res p o n s e s on grievi ng, I de - cided to add our experience. [My daughter s] father had been ill for many years. He was di ag nosed with mult ip l e scler osi s in For years, he was on a scooter, which she acc e p t e d as part of Dad. Later, when the hospit al bed be - came a livi n g room fixt u r e, she knew Dad was there. She would walk over to him, [give him a] big smile, and shake litt l e fing e r s as her greet - ing. When he was hospit ali z ed, she d feel the empty bed but be all smiles when he came home. He passed away at home in April of We showed her his body, had her feel his face, told her Daddy bye-bye. We took her to vis i ta tion, showed her dad again, sayi n g Daddy bye-bye. Now, we didn t know how this would regi st e r with her but the next morni ng, when she came into the livi ng room and the hos pi tal bed was gone, she started to sob. I have never bef ore or since heard her sob that hard and long. Some thing cert a i n l y clicked that morni n g and her sibl i n g s were amazed that she rea c t e d that way. Howev er, [there have been] no more reac - tions and no obj e ct i o n s to goi n g back to her program. As I ve learned, we all grieve in our own way and our own time. We were all feeli n g sad and she probab l y had ext r a hugs from all of us. ************************************* And so, dear read ers, we ve learned that griev ing is griev ing, whether you re deaf and blind or sighted and hear ing. Ev ery one does it in their own way, in their own time. There are things that can be done to help the pro cess along, to make it more prac ti cal and real, but ul ti mately, death and loss mean dif fer ent things to dif fer ent peo ple. Some of us need more hugs, oth ers need more space. Some of us want to re - mem ber, oth ers want to for get. But we all need to be 10

11 re spected and al lowed to grieve in our own unique way. Congenital Rubella Syndrome Discussion List This dis cus sion list has been es tab lished as a ve - hi cle for par ents, con sum ers, an d pro fes sion als to share in for ma tion about any as pect of ru bella and to pro vide sup port to those liv ing or work - ing with some one with con gen i tal ru bella syn - drome. If you are al ready r eg is tered with Ya hoo-groups you can sub scribe by send ing a blank to HKNC_Ru bella-subscribe@yahoogroup s.com. If you are not reg is tered with Ya hoo-groups, go to is ter. For as sis tance, con tact the owner at: HK NC_Ru - bella-owner@y ahoogroup s.co m or Nancy O Donnell at HKRegistry@aol.com.!!!!!!! Personal Perspectives Peggy Malloy Per sonal Per spec tives is a col umn about deaf-blind peo ple, their fam i lies, friends, and the peo ple who work with them. This is s ue fea tures Corrina Veesart, a nine teen-year-old woman who is deaf-blind and her mother Pearl. Corrina and Pearl live in Los Osos, a small com mu nity lo cated along the cen tral coast of Cal i for nia. Pearl also has a son, Ryland, who is sev en teen. Corrina re cently grad u - ated from high school. Pearl works as a pro fes sional gar dener and land scaper. I talked to Pearl and Corrina about Corrina s ed u ca tional ex pe ri ences, her plans for the fu ture, and their feel ings about ser vices for deaf-blind peo ple. Pearl first no ticed that Corrina had dif fi culty see ing and hear ing wh en Corrina was very young. The cause of her deaf-blindness has never been di ag - nosed, al t hough she has been eval u ated by nu mer - ous spe cial ists. Ini tially her hear ing loss was be lieved to be due to cen tral au di tory pro cess ing dis or der, but she was found to be deaf when she was eight years old. Both her hear ing and vi sion loss have been pro - gres sive. Pearl says that ob tain ing the ed u ca tional ser vices Corrina needed was of ten a strug gle dur ing Corrina s school years. She learned to be an ef fec tive ad vo cate by ed u cat ing her self in ar eas of spe cial ed u - ca tion law and is sues per ti nent to deaf-blindness. She has fou nd the net work of re sources and pro fes sion als within the field of deaf-blindness to be in valu able and be lieves that com bin ing knowl edge about the law with those re sources can be a po tent means of ac - cess ing and cre at ing qual ity ser vices. In this man ner she was able to ob tain ser vices for Corrina in high school that in cluded a spe cial ed u ca tion teacher with ex pe ri ence and train ing in deaf-blindness, in ter pret - ers, Braille and ori en ta tion and mo bil ity in struc tors, tech ni cal as sis tance and train ing for spe cific pro gram needs, and in clu sion in typ i cal class rooms. Pearl points out that al though spe cial ed u ca tion laws have ex isted for many years, they aren t al ways im ple - mented. She be li eves that it is im por tant for peo p le col lec tively and as in di vid u als to stand up for their spe cial ed u ca tion rights in or der for the im ple men ta - tion of those rights to be come com mon place. Pearl says that her on go ing en coun ters with the ed u - ca tional sys tem had an im pact on her own per son al - ity. Al t hough she used to be very shy and eas ily in tim i dated, by ed u cat ing her self and be ing sup - ported by var i ous pro fes sion als, she be c a me em pow - ered and be g an to feel more con fi dent and as ser tive. She says that she found her own voice in the pro cess of ad vo cat ing for Corrina and broke through bar ri ers in her self. She be came a health ier and more ca pa ble per son. Corrina is both ex cited and over wh elmed at the pr os - pect of transitioning from school to col lege and a new life. She ech oes her mother s as sess ment of her school years, when it was of ten dif fi cult to get what she needed. She says that she is sick of all the meet ings as so ci ated with get ting ser vices and would rather be in volved in more nor mal teen age ac t iv i ties. Corrina can hear an oc ca sional loud sound, but not speech. She also has some vi sion. She can see a lit tle up close (within five to six inches of her face), but be - yond that things are blurry. She says, I can see shapes fur ther away and of ten can iden tify them if I al ready have an idea wh at they are. From my win - dow there are two trees in the front yard. I can see the trunk. I can see up to where the leaves are, but I can t make out de tails. Sup pose a bird or a bird s nest is in the tree. I can t tell that un less some one tells me. Corrina mostly uses her vi sion to see sign lan guage, but says that her eyes get very tired. She feels that her vi sion is get ting worse and she is shift ing to tac tile sign lan guage. Corrina plans to go to ju nior col lege, but is tak ing a break from school this fall se mes ter and work ing in - stead. She has a part-time job as a teacher s aide in a first grade class. She loves chil dren, es pe cially ba bies. She might be in ter ested in a ca reer that in volves work ing with chil dren, but she has nu mer ous in ter - ests and at this point in time does n t know what type of ca reer she will pur sue. In high school she en joy ed 11

12 many sub jects, in clud ing Eng lish, sci ence, and art. She was also a cheer leader for two years. Corrina loves to read an d does so us ing Braille and large print with a mag ni fier. She also likes bal let, aer - o bics, and al though she can t hear very well, she en - joys mu sic if she s able to be in cluded through touch. She has friends who are mu si cians. They let her feel their throats an d in stru ments wh en they play and sing. Dur ing this past sum mer she took a lot of dance and ex er cise classes, hung out with her friends, went to visit her dad in Alaska, and at tended the Se at tle Light house for the Blind deaf-blind re treat. Corrina says that more than an y thing she wants space and in de pend ence. She says that she can do a lot al ready, but needs to learn more skills like house - keep ing, food shop ping, and trav el ing alone. She wants to be as in de pend ent as pos si ble but says that she feels frus trated be cause, It seems to be hap pen - ing so slowly and I feel penned up. I still need to learn so much. I asked Pearl and Corrina about the cur rent state of deaf-blind ser vices and what they think is im por tant for the fu ture. Both told me that ac cess to in ter pret ers who have the ed u ca tion and ex pe ri ence nec es sary to in ter pret for deaf-blind peo ple is very im por tant. They be lieve that in ter pr et ers for deaf-blind peo ple should re ceive spe cial ized train ing and rec og ni tion. Pearl had a num ber of ad di tional ob ser va tions and sug ges tions. She said that high-quality as sess ments are crit i cal be cause they de ter mine the types of ed u - ca tional ser vices that chil dren re ceive. She be li eves that as sess ments should be per formed by peo ple with ex per tise in deaf-blindness and that par ents have a mean ing ful role in the as sess ment pr o cess. She would like to see qual ity op tions for as sess ment and train ing avail able in lo cal com mu ni ties and says that it is es sen tial to main tain fund ing of pro grams and re - search ded i cated to the deaf-blind pop u la tion. Pearl said that while she is grate ful for the ser vices that are cur rently avail able, she be li eves that there is still much to do to im prove the qual ity of life for deaf-blind peo ple. She says that there needs to be a bal ance be tween grat i tude and ac knowl edg ment for what the deaf-blind com mu nity has and con tin ued ef forts to strive for some thing more. She also says, Deaf-blind peo ple should have a life with the kind of choices and op por tu ni ties that any of us have. That s what Corrina and I are head ing for. National Parent Conference Report Kathy McNulty On Au gust 2-4, 2001, in Mi ami, Florida, a gath er - ing of nearly 150 par ents from the United States and Latin Amer ica at tended An In ter na tional Cel e bra tion of Em pow er ment: Sharing Dreams and Vi sions for Children and Young Adults Who Are Deaf-Blind, spon - sored by the Na t ional Tech ni cal As sis tance Con sor - tium for Children and Young Adults Who Are Deaf-Blind (NTAC), along with the Na t ional Fam ily As so c i a tion for D eaf-blind (NFADB), t he Hilton/Perkins In ter na tional Pro gram, and Foun da - tion ONCE (Organización Nacional de Ciegos Españoles). The work shop of fered a unique op por tu nity for par - ents and fam ily mem bers from the United States to ex change per spec tives on em pow er ment and self-determination with par ents and fam i lies from four teen Latin Amer i can coun tries. Work shop ac - tiv i ties were de si gned to en hance the ca pac ity of par tic i pants to dis cov er and ful fill the dreams of their chil dren and other fam ily mem bers. Through out the two-and -a-half days of the meet ing, par ent and deaf-blind pre sent ers from both hemi - spheres shared sto ries about mak ing their dreams come true, the crit i cal need for per son-centered plan ning, and strong col lab o ra tive part ners, as well as about the im por tance of bal anc ing the child s dream within the con text of the fam ily s dream. De spite the dif fer ences in cul tures and bac k - grounds, par ents quickly con nected with one an - other, un der stood each other s pr ob lems and fears, de lighted in one an other s suc cesses and achieve - ments, and rec og nized that par ents share a uni ver - sal per spec tive when it co mes to dream ing for their chil dren who are deaf-blind.!!!!!!!!!!!!!! 12

13 For Your Library Child Guided Strat egies for As sessing Children who are Deafblind or Have Mul ti ple Dis abil ities (CD-ROM). van Dijk, Jan & Nel son, Ca thy, A CD-ROM that dem on strates as sess ment tech - niques de vel oped by Dr. Jan van Dijk. In cludes ap - prox i mately 40 vidoclips of deaf-blind chil dren be tween two an d seven y ears of age. The CD-ROM is in ter ac tive al low ing the viewer to test his or her knowl edge of a sub ject. The cost is $ Profits will go into a fu nd to fi nance the pro duc tion of sim i - lar ma te ri als in the fu tur e. Dr. van Dijk says U.S. or - ders can be sent in care of his brother-in-law, Mr. Joe Franken, 4619 Spy glass Drive, Dal las, TX Make the check pay able to Mr. Joe Franken. Dr. van Dijk s is j.vdijk@ivd.nl Col lec tive Wis dom: An An t hol ogy of Stories and Best Prac tices for Educating Stu dents with Se vere Dis abil ities and Deaf-blindness. Kan sas State De - part ment of Edu ca tion, A col lec tion of writ ings by peo ple who have been in - volved in the lives of chil dren and young adults with se vere dis abil i ties and deaf-blindness. Topics in clude self-determination, col lab o ra tion, assistive tech nol ogy and pos i tive be h av ioral sup ports. Avail - able from: Jeff Cook, Kan sas Pro ject for Children and Young Adults Who Are Deaf-Blind, Kan sas State De part ment of Ed u ca tion, 120 SE 10th Ave., To peka, KS TTY: E- mail: jcook@ksde.org Com pe tencies for Paraprofessionals Working With Learners who are Deafblind in Early In ter - ven tion and Ed u ca tional Set tings. Riggio, Marianne & McLetchie, Barbara A.B. Watertown, MA: Perkins School for the Blind, These com pe ten cies ad dress the knowl edge and skills that a paraprofessional must have in or der to as sist in im ple ment ing qual ity pro grams and en - hance the qual it y of life for learn ers who are deaf-blind. The cost is $5.00. Avail able from Pub lic Re la tions and Pub li ca tions De part ment, Perkins School for the Blind, 175 N. Bea con St., Watertown MA Phone: The Ed u ca tion of Laura Bridgman: First Deaf and Blind Per son to Learn Lan guage. Freeberg, Er nest. Cam bridge: Har vard Uni ver sity Press, The Im prisoned Guest: Sam uel Howe and Laura Bridgman, the Orig i nal Deaf-Blind Girl. Gitter, Elis a beth. New York: Farrar, Straus and Giroux, Two bi og ra phies of Laura Bridgman were re cently pub lished. Laura Bridgman was a deaf-blind woman who was born in 1829 and lost both her sight and hear ing due to scar let fe ver at the age of two. She be ga n at tend ing the Perkins School for the Blind at the age of seven, where she was ed u cated un der the di rec tion of Sam uel Howe. Both books de scribe her life, in clud ing her ed u ca tion, her com plex re la - tion ship with Ho we in the con text of the rapid so cial and cul tural changes that were oc cur ring in 19 th -cen - tury Boston. Avail able through book stores. Fo cused On: So cial Skills (Video). Wolffe, Ka ren E. (Ed.) & Sacks, Sharon Zell (Ed.). New York: AFB Press, FO CUS (Full Op tion Cur ric u lum for the Uti li za tion of So c ial Skills) con sists of five mod ules re lated to help ing chil dren who are vi su ally im paired de velop so cial skills. Each set con tains a vid eo tape and self-directed study guide. In di vid ual t i tles: Im por - tance and Need for So cial Skills, As sess ment Tech niques, Teaching So cial Skills to Vi sually Im paired Pre Schoolers, Teaching So cial Skills to Vi sually Im paired El e men tary Stu dents, So cial Skills for Teens and Young Adults with Vi sual Im pair ments. Each set costs $ Avail able from AFB Press, Cus tomer Ser vi ce, P.O. Box 1020, Sewickley, PA Phone: Website: In for ma tion Packet for New Teachers. Monmouth, OR: DB-LINK, This packet of in for ma tion was de vel op ed for par - ents to p ass on to their chil dren s teach ers (or for teach ers to re quest them selves). It in cludes fact sheets, news let ters, lists of ar ti cles about com mu ni - ca tion, cur ric ula, and en vi ron men tal con sid er - ations, and a bro chure and ar ti cle that de scribe DB-LINK ser vices. Avail able from DB-LINK. Phone TTY: dblink@tr.wou.edu Website: ` 13