a first look at children and youths who are deaf-blind in the kingdom of thailand

8/2/2019 A First Look at Children and Youths Who Are Deaf-blind in the Kingdom of Thailand

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Around the WorldA First Look at Children andYouths Who Are Deaf-Blindin the Kingdom of ThailandSaowaruk Sukontharungsee, EugeneBourquin, and Mor PoonpitDeveloping countries often have little aware-ness of and virtually no services for indi-viduals who are deaf-blind. In some nations,children who are deaf-blind remain isolatedat home without education, and adults whoare deaf-blind may live without rehabilitationservices ("Disability in the Majority World,"2005 ; SENSE, 1999) .

Little is known about the demographiccharacteristics and clinical profiles of peoplew ho are deaf-blind in Thailand, although therehave been some anecdotal data on the edu-cation of children who are deaf-blind in theregion. Multiple searches of available data-bases on the population, education, and na-tional health of Thailand revealed no data ondeaf-blindness. A ccording to Mitchell (1995,p. 7), "the Seventh Educational DevelopmentPlan (1992-94) provided for equal treatmentfor both special and regular education," andth e 1991 Rehabilitation of Disabled PersonsAct included the categories of language andspeech impairment and multiple handicaps.Nonetheless, there seems to have been no ef-fort to account for people who are deaf-blind.With no official census, the authors stronglysuspect that all cases of persons who aredeaf-blind have been labeled and reported ascases of multiple disabilities, and, therefore,it can be assumed that the unique needs andappropriate services related to these persons 'sensory loss have not been addressed.

Before 1989, individuals who were deaf-blind were not recognized in Thailand's edu-cational and rehabilitation systems. At thattime, the Hilton-Perkins program broughtthe first team of professional educators to thecountry to begin working with children whowere deaf-blind (Hubbs, 1998; InternationalPrograms, 2005). Currently, programs in ed-ucational settings, supported by charitable,nonprofit and religious, and governmentalprojects, provide basic instruction; programsto educate children who are deaf-blind whohave additional disabilities have been estab-lished in the greater Bangkok areas, as well asin Roi Et, Nakhon Pathom, Chiang Mai, Lam-pang, and Lo Buri. Despite considerable ef-forts by governmental and nongovernmentalorganizations to improve education and reha-bilitation programs, no systemic efforts havebeen specifically targeted to individuals whoare deaf-blind. Confounding the challenges,there are no Thai consumer or advocacy orga-nizations of or for individuals who are deaf-blind.

According to the online health data pro-vider, Adviware Pty Ltd. (2005, para. 1), wecan extrapolate the number of individualswith dual sensory loss conditions (such asUsher syndromea genetic condition thatpresents with concomitant retinitis pigmen-tosa and sensorineural hearing loss), but thelocal genetic and environmental predictors re-main unknown, and estimates may "only givea general indication (or even a meaninglessindication) as to the actual prevalence or inci-dence [oft he condition]." Adviware Pty Ltd.estimated the possible prevalence of Ushersyndrome in Thailand as 3,815 in a popula-tion of approximately 62 million.

Here, we present the first organized attemptto examine the population of individuals whoare deaf-blind in Thailand. This study began


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were overseen by a committee of six profes-sors, emeritus professors, and advisers, Tbecritical role of defining and beginning to un-derstand the prevalence and needs of peoplewitb disabilities, especially tbose wbo aredeaf-blind, is vital to tbe establisbment of ser-vices in Tbailand, By reporting on tbe censusand surveys conducted witb individuals wboare deaf-blind and their significant relatives,we hope that a nascent picture will emerge toassist in planning for appropriate programsand services in Thailand, which appears tobe poised to expand and improve services forpeople with disabilities, Ratcbasuda College(of Mabidol University) was founded in 1992specifically to address tbese needs. It bas re-cently bosted several seminars and worksbopson children and adults wbo are deaf-blind.THE R ESEAR C H PR OC ESSIdentifying individuals who are deaf-blindWitb no previous researcb or data available,we began by contacting institutions for peo-ple witb disabilities, special education pro-grams, schools for people wbo are deaf, andschools for people wbo are blind tbrougboutTbailand, the traditional placement optionsfor people witb severe disabilities, Tbe enti-ties contacted reported 130 cases of suspecteddeaf-blindness. To ensure accuracy, medicalspecialists in vision and bearing screenedeacb individual, using an eye examination;measured visual acuity using ligbt projection,finger counting, band movement, and Snel-len chart measurements. Eventually, 35 caseswere determined to be genuine incidences ofdeaf-blindness and were included for furtberinvestigation on tbe basis of tbe criteria forinclusion listed in Box 1, Of tbese 35 cases,34 were aged 7-2 2, and 1 was aged 6 1, Tbediscussion presented bere focuses mainly ontbe 34 cbildren and youths unless noted otber-

Of tbe 34 cbildren and youths, 12 (35,29%)were aged 7-12, 16 (47,06%) were aged 13-17, and 6 (17,65%) were aged 18-22, Tbesecbildren and youtbs resided in tbree of fourregions of tbe country: 18 in tbe Nortb, 10in tbe Central region, and 6 in tbe Soutbeast(none wa s from tbe S outb), Tbe m ajority livedwitb tbeir parents (70,59%), and tbe rest livedwitb otber relatives (14,71%) or in an institu-tion (14,71%).

We defined divided sensory loss into fourbroad categories: deaf and blind (29.41%),deaf and low vision (52.94%), hard-of-bearing and blind (14,71%), and bard-of-

Criteria for deaf-blindnessin the studyTbe following definitions, based on

standard Tbai clinical criteria, were usedin tbe researcb:

Impairmen t in vision means tbat an individual's visual acuity in tbe

better eye, using regular eyeglasses,is less tban 6/18 or 20/70 (up to noligbt perce ption) or s

an individual bas a visual field of lesstban 30 degrees.Impairment in bearing or communi-

cation means tbat an individual witb abearing frequency of 500, 1000, or 2000Hertz in tbe better ear bas a loss of over 40 decibels up to tbe

point of not bearing at all for a cbildaged 7 or younger,

a loss of over 55 decibels progre ssingto tbe point of not bearing at all foryoutbs and adults, or

an abno rma lity or malfunc tioning oftbe auditory system tbat leads to tbe


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bearing and low vision (2,94%). Altbougb tbeetiology of deaf-blindness in tbe majority ofpartieipants (55.88%) was unknown, otberdiagnoses were congenital rubella syndrome(9 partieipants, 26,47%), Usber syndrome (5participants, 14,71%), and premature birtb (1participant, 2,94%), In addition, tbe partici-pants were categorized according to wbetbertbey were congenitally or adventitiously deaf-blind, as follows: congenital deaf-blindness(16 participants, 10 boys and 6 girls, 47%);congenital deafness, adventitious blindness(16 participants, 10 boys and 6 girls, 47%);and congenital blindness, adventitious deaf-ness (2 participants, 6%).

Tbe participants used a variety of one ormore metbods of communication. Sign lan-guage was tbe most common form at 58.82%(tactile sign language, 5,88%), Otber metb-ods were gestures (47,06%), spoken language(5,88%), and print on palm or paper (5,88%).Table 1 lists tbe grade levels of tbe partici-pants.STATISTICAL COMPARISONTO THE UNITED STATESAltbougb extrapolations and comparisonsamong countries may be tenuous, in tbe UnitedStates, tbe National Tecbnical AssistanceConsortium bas long maintained a compre-bensive and reliable database on cbildren wboare deaf-blind (National Deaf-Blind CbildCount Summary, 2004), Tbe population ofTbailand is approximately 62 million people.Table 1Grade level of the children and youthsin the sample.

GradeLevelNonePreschool

Male Female Total Percentage121

35,292,94

compared to 282 million in tbe United States.Individuals aged 22 or younger in tbe UnitedStates wbo are deaf-blind represent ,0032% oftbe population. We believe tbat comparing de-mograpbics will allow tbe reader to gain someinsigbt into tbe relative situation for cbildrenand youtbs wbo are deaf-blind in Tbailand,

In Tbailand, 85.30% of tbe cbildren andyoutbs in tbe sample lived witb tbeir familieswbile attending scbool, compared to 88,12%in tbe United States; bowever, 35.29% of tbeTbai sample was not in an educational set-ting, compared to ,34% in tbe United States,Tbe incidence of significant cognitive de-lays is large in botb countries47.76% intbe United States and 32,25% in Tbailand.General patterns of vision and bearing lossand etiology vary widely between tbe coun-tries, but patterns of age, placement, and an-ticipated concomitant cognitive involvementare similar (see Table 2 for comparative dataon age, vision and bearing loss, and etiol-ogy). Of particular concern is tbe apparentTable 2Comparison of data from the United Statesand Thailand (percentage).

Category UnitedStates Thailand

6-11 (United States),7-12 (Thailand)12-17 (United States),13-18 (Thailand)18-22

Hearing and visionDeafHard-of-hearingBlindLow vision

EtiologyCHARGE''Usher syndromeCongenital rubella syndrome

29,29 35,2935,9517.45

47,0617,65

39,65 82,3560,35 17,6525,38 44,1274,62 55,885,92 0,002,66 14,711,29 26,47


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proportion of congenital rubella syndromein Thailand (26 ,47% ) a condition that waseradicated in the West through an effectivevaccination program (Centers for DiseaseControl and Prevention, 2005),ASSESSING THE NEEDS OF PEOPLE WHOARE DEAF-BLIND IN THAILANDTo gain insight into the needs and preferencesof individuals who are deaf-blind in Thailand,we interviewed the 10 individuals who wereable to respond to the survey (including the61-year-old), their families, and their caregiv-ers. According to the survey data, the mostfrequent social activities of the children andyouths included shopping, play with siblings,affectionate behaviors, and communicationbehaviors. The least frequent activities weregardening, accompanying a parent to work,and doing homework with family members,Nonfamilial respondents indicated that thesubjects who were deaf-blind often joined inschool activities (77,14%), but 57,14% did notinteract socially with their peers because ofcommunication barriers. Only 48,57% of thesample had friends. Participation in religiousevents appeared to be significant (37,14%),The primary needs that are specific to indi-viduals who are deaf-blind are presented inTable 3,IMPLICATIONS OF THE FINDINGSAccording to the Ministry of Educat ion ofThai land (2003), "Under the current ThaiConstitution, the disabled have a right toequal opportunities for education and ca-reer. Disabled children and youth can alsoaccess free services, such as basic educa-tion and aids. Th e disabled s hou ld be fullyintegrated in Thai society," For children andyouths who are deaf-blind, this remains agoal, since 35% of the surveyed childrenwere not in formal educational settings (see

Table 3Primary perceived needs: Medical, educational,and rehabilitation (/i= 35).Response category PercentageInterpreters for persons who are 100,00deaf-blindImproved attitude toward persons 91,43who are deaf-blindImproved comm unication 85,71Teachers trained for deaf-blindness 71,43Training in activities of daily living 65,71Support for independence 57,14Specialized governmental services 42,86Optometry 40,00Training for Independence 40,00Orientation and mob ility instruction 37,14Other rehabili tation personnel, such as so-cial workers, counselors, and others who areknowledgeable about deaf-bl indness; morepositive societal att i tudes; and increasedtraining and availabili ty of teachers and edu-cational programs. Also notable was the lackof the perceived need for advanced technol-o g y

The most frequently cited problems wererelated to communication. The country doesnot have a sufficiently large or establishedinterpreting profession, and of the 50 or 60persons who work as interpreters, only 1or 2 have formal training in deaf-blindnesstechniques for communication and strate-gies (personal correspondence, Sopon Chai-watanakulwanit, November 20, 2005). Withinterpreting services generally unavailable,access to education and rehabilitation is lim-ited.

Professional orientation and mobility(O&M) services for children with visualimpairment have been long established inThailand, Schools for children who are blindtypically employ one or two O&M specialists,but services for adults are rare in most of thecountry. Until recently, no O&M specialist


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Thailand has a growing middle class and arobust economy, but improved socioeconomicstatus may not have affected individuals withdisabilities as it has in industrialized coun-tries. As Kwok (1999) stated, the "economicboom from the 1980s to the mid-1990s was asurprise to many economists, both local andoverseas, A decade of fast accumulation ofwealth has drastically changed people's wayof life. However, disabled people's share of thenation's wealth has not been that significant,"It seems significant that 86% of the respon-dents to the survey said that they grew up inpoverty, and 43% reported that they currentlylived in poor villages.Thai attitudes toward disability are chang-ing. Traditionally, incidents of disability werethought to be related to spiritual transgres-sions (Kwok, 1999), Predominantly Bud-dhist, people in Thailand often subscribe to"karmic theorythat unfortunate events hap-pen due to a person's former deeds" (Yamey

& Greenwood, 2004, p, 459). We hope thatrecognition of deaf-blindness as a unique dis-ability will lead to an increase in appropriateplanning and programs, which may also leadto greater social acceptance of people withdisabilities.Like much seminal research on peoplewith visual impairments and hearing loss, thisstudy has numerous limitations. The primary

limitation is that the sample of 34 was small,and the sampling was somewhat selective. Yetwe trust that the study will prove to be gen-erative, encouraging fiarther research and ac-tion on behalf of Thai children and adults whoare deaf-blind. Further efforts are criticallyneeded.

REFERENCESAdviware Pty Ltd, (2005), About these ex-

Centers for Disease Control and Prevention,(2005). Telebriefing transcript: CDC an-nounces rubella, once a major cause of birthdefects, is no longer a health threat in theU.S, Retrieved January 2,2 006, from http://www.cdc,gov/od/oc/media/ t ranscripts /t050321,htm

Disability in the majority world: The facts.(2005). New Internationalist (384). Re-trieved July 28, 2006, from http://www.newint.orgHubbs, D, (1998). Guiding philosophy: Ex-cerpts from the last will and testament ofConrad Nicholson Hilton. Retrieved January2, 2006 from htt:p://www,hiltonfoundation,org/reports/13 ,pdfInternational programs. (2005). RetrievedJanuary 4, 2006, from http://www.perkins,org/area,php?id== 19Kwok, J. (1999), Seeking out new ideas attimes of crises: The Thai experiences, Asiaand Pacific Journal on Disability, 2(1), Re-trieved July 28 ,200 6, from http://www.dinfne.jp/doc/english/asia/resource/z00ap/004/z00ap00405,htmMinistry of Education of Thailand, (2003),Education for disabled children andyouth. Retrieved January 2, 2006, fromht t p : / / www,moe ,go , t h / ma i n2 / a r t i c l e /art ic le_rangsun/educat ionForDisabledChildren,htmMitchell, D, R, (1995), Special education poli-cies and practices in the Pacific Rim regionPaper presented at the Annual InternationalConvention of the Council for ExceptionalChildren, Indianapolis, IN.

National Deaf-Blind Child Count Summary(2004, December), National Technical As-sistance Consortium, Retrieved December30, 2005, from http://www.tr,wou,edu/ntac/documents/census/2004-Census-Tables,pdfSENSE: The National Deaf-blind and RubellaAssociation, (1999). Annual review. Lon-don: Author,Sukontharungsee, S, (2005), The study of


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January 2, 2006, from http://www,nise.go. jp/PDF/JSEAP5,pdf

Yamey, G,, & Greenwood, R. (2004), Reli-gious views of the 'medical ' rehabili tationmodel: a pilot qualitative study. Disabilityand Rehabilitation, 26, 4 5 5 ^ 6 2 ,

Saowaruk Sukontharungsee, M.A., rehabilita-tion specialist, Ratchasuda College, Mah idolUniversity, Salaya campus Phutthamonthon4, Nakhornp athom, 73170, Thailand; e-mail:

. Eugene Bour-quin, M.A., senior instructor, mobility specialist,low vision therapist, and sign-language inter-preter, Helen Keller National Center for Deaf-Blind Youths and Adults, Sands Point, NY; mail-ing address; 235 West 102 Street, 2W, New YorkNY 10025; e-mail; .Mor Poonpit, Ph.D., founding director and pro-fessor emeritus, Ratchasuda C ollege, Mah idolUniversity, Salaya campus, Phutthamonthon4, Nakhornpathom, 73170, Thailand; e-mail;.


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a first look at children and youths who are deaf-blind in the kingdom of thailand

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