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Mental retardation: from knowledge to action

December 31, 2001 World Health Organization

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Fromknowledge toaction

World Health Organization Regional Officefor South-EastAsia

Mental Retardation

SEA/Ment/119 Distr:General

Authors CoordinatingAuthor: DrSatishGirimaji AdditionalProfessor,DepartmentofPsychiatry NationalInstituteofMentalHealthandNeuroSciences Bangalore,India Co-Authors: Dr(Mrs)SultanaS.Zaman ChiefExecutiveandGeneralSecretary BangladeshProtibondhiFoundation Dhaka,Bangladesh MrsP.M.Wijetunga Counsellor/AdviseronMentalRetardation President,SusitaSuwasethaParentsAssociation Sarvodaya Moratuwa,SriLanka DrUdomPejarasangharn RajanukulHospital DinDaengDistrict Bangkok,Thailand SectionsonADHDandConductDisorderscontributedby DrJitendraNagpal, ConsultantPsychiatrist,VidyasagarInstituteofMentalHealthandNeuro Sciences,NewDelhi,India © WorldHealthOrganization2001 ThisdocumentisnotaformalpublicationoftheWorldHealthOrganization(WHO),and allrightsarereservedbytheOrganization.Thedocumentmay,however,befreely reviewed,abstracted,reproducedortranslated,inpartorinwhole,butnotforsaleorfor useinconjunctionwithcommercialpurposes. Theviewsexpressedindocumentsbynamedauthorsaresolelytheresponsibilityof thoseauthors. ! Paintingsonpages6,13,19,27,32,41,47,55and59arecontributedtoWHOcomplimentaryby Yogeeta,aneminentartist.

! Paintingsonpages11,14,17,23,30,38,40,48and53arepartofaWHO-sponsoredglobalschool contestonmentalhealthforchildrenaged6-9years.

! Computergraphicsonpages9,15,20,28,34,36,44,50and57werecreatedatExposureMultiples.

From knowledge to action Contents 6 INTRODUCTION.............................................................................. HISTORICALBACKGROUND.......................................................... 7 MYTHSANDMISCONCEPTIONSABOUT 8 MENTALRETARDATION................................................................. NORMALDEVELOPMENTOFCHILDREN..................................... 12 13 WHATISMENTALRETARDATION?................................................ 20 SOMEFACTSANDFIGURES.......................................................... WHATCAUSES MENTALRETARDATION?..................................... 21 WHATCANBEDONE?.................................................................... 27 54 PREVENTIVESTRATEGIES..............................................................

Mental Retardation:

Message from theRegionalDirector Populations ofMemberCountriesofthe WorldHealthOrganization's South-East Asia Region have suffered f o r ages f r o m many communicablediseases.Whilesomeofthesehavebeensuccessfully controlled,otherscontinueasseriouspublichealthproblems.However, recently, it has become increasinglyclear thatnoncommunicable diseases,includingmentalandneurologicaldisorders,areimportant causesofsufferinganddeathintheRegion.Anestimated400million peopleworldwidesufferfrommentalandneurologicaldisordersorfrom psychosocialproblemssuchasthoserelatedtoalcoholanddrugabuse. OurRegionaccountsforasubstantialproportionofsuchpeople. Thus, theRegionfacesthedoubleburdenofdiseases-bothcommunicable andnoncommunicable.Moreover, with thepopulationincreasingin numberand age, MemberCountrieswillbeburdenedwithan evergrowingnumberofpatientswithmentalandneurologicaldisorders. AsDr GroHarlemBrundtland,theDirector-GeneraloftheWorldHealth Organization says, " M a n y o f t h e m suffer silently, and beyond the sufferingandbeyondtheabsenceofcareliethefrontiersofstigma, shame,exclusionand,more oftenthanwecaretoknow,death". While stigmaand discriminationcontinuetobethebiggestobstacles facing mentallyillpeopletoday,inexpensivedrugs arenotreaching many people with m ental and neurological illnesses. Although successfulmethodsofinvolvingthefamilyandthecommunitytohelpin recoveryandreducesufferingandaccompanyingdisabilitieshavebeen identified,theseareyettobeusedextensively.Thus,manypopulation groupsstillremaindeprivedofthebenefitsofadvancementinmedical sciences.DrBrundtlandhas said, " B y a c c i d e n t o r d e s i g n , w e a r e a l l responsibleforthissituationtoday." TheWorldHealthOrganizationrecentlydevelopedanewglobalpolicy andstrategyforworkintheareaofmentalhealth. Launchedbythe Director-GeneralinBeijingin November 1999, thepolicyemphasizes threepriorityareasofwork:(1)Advocacy toraisethe profileofmental healthandfightdiscrimination;(2)Policytointegratementalhealthinto thegeneral health sector,and(3)Effectiveinterventionsfortreatment andpreventionandtheirdissemination.TheSouth-EastAsiaRegional OfficeoftheWorldHealthOrganizationiscommitted topromotingthis policy. Mentalhealthcare,unlikemanyotherareasofhealth,doesnotgenerally demandcostlytechnology.Rather,itrequiresthesensitivedeployment ofpersonnelwho have been properlytrainedinthe use ofrelatively inexpensive drugsandpsychologicalsupport skills onanoutpatient basis. What isneeded, aboveall,isforallconcernedtoworkclosely togethertoaddressthemulti-facetedchallengesofmentalhealth.

DrUtonMuchtarRafei RegionalDirector WorldHealthOrganization RegionalOfficeforSouth-EastAsia

Preface Whenachildwithmentalretardationisborn,theinitialreactioninmost familiesisthatof"gloomanddoom".Sometimesthereisanattemptto determine"whyme?"orblamesomeoneorsomethingforthetragedyin thefamily.InpoorersegmentsofthepopulationofSEARMember Countries,havingachildwithmentalretardationisadoubletragedy;not onlyisthechildunabletocontributetothefamily'sresources,instead he/sheneedsadditionalcaringwhichdrainsthefamily'sresources.Thus, havingachildwithmentalretardationinthefamilyaffectsnotonlythe individualwhohasthis problem,butalsotheirfamiliesandthesocietyas awhole. Severaladvances in the scientific a n d s o c i a l understanding of this conditionhaveopenedupavarietyofavenuesandopportunitiesto reduce the impactofthisproblemandlimittheextentofdisability. Strategies f or primary prevention with such simple remedies as adequateintakeofiodinebypregnantmothersarenowavailable. Evenwiththeirlimited resources, much can beachievedinSEAR MemberCountriesthroughcombinedandcoordinatedactionbythe families,governmentsandnongovernmentalorganizations.Nowisthe t imetotakeupthechallengeandtakeactiontoproducemeaningful results. Thisdocument,preparedbyapanelofexpertsfromtheRegion,provides valuableinformationonthecurrentstateofknowledgeaboutmental retardation. More importantly,it alsodescribeswaysandmeansby whichbettercarecanbeprovidedto"Heaven'sveryspecialchild"bytheir familiesandothers. DrVijayChandra RegionalAdviser,Health&Behaviour WorldHealthOrganization RegionalOfficeforSouth-EastAsia

INTRODUCTION

henweseepeoplearoundus,weobservethatsome lacknormalphysicalabilities.Forexample,thereare peoplewhoareunabletosee,hearorspeakandothers whoareunabletomovearound.Thesepeoplearecommonly knownasphysicallydisabled.Similarly,therearepeoplewho havepoorandinsufficientdevelopmentofmentalfunctions, including control over their body m o v e m e n t s , their intelligence, social interaction and language,frombirth or earlychildhood.Thisconditioniscalledmentalretardation. Recently,therehasbeenincreasingawarenessthattheterm "mentalretardation"hasaderogatoryconnotation.Thus,the term"mentallychallenged"isbeingused.However,sincethe term"mentalretardation"iswellknowntothecommonman, families with patients and policy-makers, this term will continuetobeusedinthismonograph. Atthegloballevel,thelast100yearshaveseenagreater scientificunderstandingofpeople withmentalretardation. Thishasbeenpossibleduetorapidadvancesinpsychology, medicine, biochemistry,neurosciences,andotherrelated fields.Theseadvancescanhelppreventmentalretardation, provide b etter care for those who are already mentally retarded and enable governments to make appropriate policies. Thismonographsummarizesthecurrentstateofknowledge aboutmentalretardation.Moreimportantly,italsodescribes waysandmeansbywhichbettercarecanbeprovided to thosewithmentalretardationbytheirfamiliesandothers.

Yogeeta

ases of mental retardation are found in every community, althoughthey are referredtodifferently, suchas, mandabuddhi inIndia, buddhipratibondhi in Bangladesh, and mandabuddika/mandamanasika inSri Lanka. Casesofmentalretardationhavebeendocumentedin ancientmedicalliteratureandinfiction.KashyapaSamhita,an ancientAyurvedictreatiseonchildhood diseases, makesa specific reference to children born with lesser intellect (buddhi), andevenofferstreatmenttoimprovethecondition. There is mention of disabilities in Sri Lankan medical chroniclesandliterature.Onecanfind manyreferencesto disabilitiesin Jathakastories, dealing with the l i f e o f the Buddha. Several references to weaknessof the mindare foundinthe‘HolyQuran’andinawell-attestedsermonofthe ProphetMuhammad. Overtheyears,traditionalsocietiesinMemberCountriesof theSouth-EastAsiaRegion(SEAR)ofWHOhavedealt with thesepeoplewithanattitudeoftolerance,acceptanceand resignation.Theyhavebeencaredforwithasenseofdutyand compassion.InSriLanka,somefamiliesevenconsiderita divineblessingtohave beenchosenbyGodtolookaftera specialchild.Butthismaynotalwaysbethecase. Families mayconsiderthebirthofsuchachildasamisfortune,acurse, ordestinywhichtheyhavetolivewith,leading,attimes,tothe subjectbeingtreatedwithneglect,rejection,segregationand abuse. Many SEARMemberCountriesareundergoingsubstantial socialtransition. This includes changesincommunity and family attitudes towards mental retardation. Unlike earlier times,itmaynotbepossibleforfamiliestocareforamentally retarded memberwithoutexternalandprofessionalsupport andhelp.

HISTORICAL BACKGROUND

Ameetingwasheldquitefarfrom Earth,"It'stimeagainforanother birth",saidtheangelstotheLord above. "Thisspecialchildwillneedmuch love. His progress mayseemvery slow,Accomplishmentshemaynot show Andhewillrequireextracare Fromthefolkshemeetswaydown there. Hemaynotrunorlaughorplay; Histhoughts may s e e m quite far away; Inmanywayshewon'tadapt, A n d he will be k n o w n as handicapped, Solet'sbecarefulwherehe'ssent, Wewanthislifetobecontent." "Please,Lord,findparentswhowill doaspecialjobforyou. Theywillnotrealizerightaway Theleadingrolethey'r e askedto play. Butwiththischildsentfromabove Comesastrongerfaith andricher love. Andsoonthey'llknowtheprivilege given IncaringforthisgiftfromHeaven. Theirpreciouscharge,someekand mildisHeaven'sveryspecialChild." Anonymous 7

MYTHSAND MISCONCEPTIONS ABOUTMENTAL RETARDATION

espitethe changing perceptions, many myths and misconceptions about mental retardation persist amonglargesectionsofthepopulationincountriesof theRegion. Myth: Mentalretardationisahereditaryproblem. Fact: Onlyafewcausesofmentalretardationarehereditary, i.e.passedonfromparentstochildren.Mentalretardationis oftencausedbyexternalinfluences,someofwhichcanbe prevented. Myth: Baddeedsinthepreviouslifeofparentscausemental retardation. Fact: Thisiscompletelyfalse.Suchbeliefsaddtothesuffering ofthefamilieswhoarealreadyoverburdenedwithcaringfor their special children.Some communities perpetuate the myththatifonetriestoremedytheillnessortaketreatment, thesufferingwillberepeatedinone'snextlife.Thisresultsin addedsufferingtothepatientfromlackofpropertreatment. Myth: Mentalretardationiscausedbypregnantandlactating womennotfollowingrestrictionsonfood. Fact: Pregnant and lactating women must maintain good nutritionfortheirownhealthandalsoforthehealthofthe unbornornewly-bornchild.Thereisabsolutelynobasis for restricting foodtopregnantandlactatingwomen.However, somemedications, if t a k enduringpregnancy,mayleadto malformations in the unborn child.Medication should be takenonlyontheprescriptionofadoctor.Whenconsultinga doctorforanillness,womenshouldalwaysinformthedoctor aboutbeingpregnant. Myth: Mentalretardationisinfectious. Fact: Thisiscompletelyfalse.Mentalretardation cannot be spread by touching a patient. Children with mental retardation must be cuddled and loved j u s t as much as normalhealthychildren.

Myth: Tonics/vitamins/medicinescancurementalretardation. Fact: Ifmentalretardationiscausedbyatreatablecondition, appropriatetreatmentwillcureit.However,thereareno"brain tonics" which can stimulate a damaged brain. Many unscrupulous healers and manufacturers market such substanceswithpopularandmisleadingnames,whichimply that if thesesubstancesare taken, thechild will become normal. This is particularly common in ruralareas,where quacksmarketsomemixtures,guaranteeingparentsacure. These substances frequently contain a substance called ‘steroids’.The se medicationsmakethechildplumperand perhaps happiertemporarily,whichmakestheparentsfeel good.Butthebasicconditionofmentalretardationisnot cured. I n fact, steroids are harmful if taken for long durations. DigitalCreativity

Myth: Brainoperationscancurementalretardation. Fact: There are very few conditions leading to mental retardationwhichcanbecuredbysurgery. Myth: Marriagecancurementalretardation. Fact: This is completelyfalse.Infact,a mentally retarded person should b e m a r r i e d o n l y w i t h t h e f u l l c o n s e n t a n d knowledgeofthepartner. Myth: Children with mental retardation become completely normalwhentheygrowuptobeadults. Fact: Childrencanmakesubstantialprogressastheygrowup. However, it is unlikely that they will become completely normal.Eachcasemustbeassessedindividually. Myth: Mentallyretarded adultshavepoorsexualcontroland poseadangertoothers. Fact: Infact,adultswithmentalretardationaresexuallymore inhibited than their normal counterparts. Onthecontrary, manysuchpeoplearevictimsofsexualabuse. Myth: Mentally retardedchildren are incapable of learning anythingandsoeverythinghastobedoneforthem. Fact: Thesechildrenarecapable of learning, althoughh ow muchtheylearnandatwhatspeedtheylearnmayvary.The harderweworkwiththem,themoretheywilllearnandmore independenttheycanbecome.Thereisnobettersolutionto theirdevelopmentthanworkinghardwiththem. 9

Myth: Mentallyretardedchildrenshouldnotbemadetocry foranyreasonorshouldnotbedisciplinedinanyfashion. Fact: Allchildrenneedtobedisciplined.Everyeffortshould bemadetoteachchildrenwithmentalretardationwhatis right and what is wrong, recognizing their capacity for learningandtakingintoconsiderationfactorsbeyondtheir control. Myth: Faithhealerscancurementalretardation. Fact: Thisiscompletelyuntrue.Thereare manysadstories aboutparentssellingalltheirvaluablesandtheirlandonthe advice of faith healersand giving this away in charity, frequently to the faith h e aler. Faith healers mislead the parents.There are many alternative systems of medicine practisedinSEARMemberCountries,someofwhichclaimto havea‘cure’formentalretardation.However,considerable researchisstillneededbeforetheirexactefficacyandsafety canbeestablished.

Fightingagainstmisconceptions-anexamplefrom Bangladesh Mukti, a special education teacher working with disabled children i n o n e o f t h e c entres r u n by the Bangladesh ProtibondhiFoundation(BPF) inDhaka, wasmarriedanddidnothaveanychildrenfor12long years. Finally,sheconceived,butcontinuedtowork withthedisabledchildren.Herrelatives,ne ighbours and well-wishers repeatedly requested her to discontinueherworkandtoavoidcontactwiththese typesofchildrenduringherpregnancy,whichwas veryprecious.Attimes,shegotconfusedthinkingof the unborn child. But her husband was very cooperativeandgaveheralotofmoralandemotional support and askedher not to listen to all these superstitions. Mukti was blessed w i t h a healthy daughter. The baby,named Ritu, accompanied her mothertoworkrightfromthedayshejoinedatthe endofhermaternityleave.Ritu,whoisnow1yearand 8monthsold,isabright,pleasantchildwithabove averageintelligence.

PreetiSnigdhaNayak

NORMAL DEVELOPMENT OFCHILDREN

fterbirth,normalbabiescontinuetodevelopphysically and mentallytillthe ageof18years.Thisiscalledthe developmentalperiod. Mental development occursinasequential,orderly and a predictablefashion.Normally,onewould expectbabies to developcertainskillsbycertainages.Forinstance,walking andlearningtosayafewwordscomesbytheageof1year and3months.Thesearecalled“milestonesofdevelopment”. Thesemilestonesareclassifiedinfourareas:motor(control overbodymovements),cognitive(ability tounderstandand dealintelligently with situations),s ocial (interacting with people and learning appropriate social behaviours) and language (understanding what others say and learning to talk). Anyonewhoisfamiliarwithbabiesknowsthattheydevelop andlearnrapidly,especiallyinthefirst3-4years.Theyarevery quickin learning d uringtheseyears.How do theyacquire suchacapacity?Growthandmaturationofmanyorgans of thebodyisresponsibleforthis,butmostimportantly,thisis becauseofthematuration ofthebrainanditsfunctions.In otherwords,thebrainundergoesrapid maturation during these e a r l y years;as a consequence, babies learn and develop f a s t . It shouldberemembered that for acquiring theseskills,notonlymaturationofthebrain,butalsoahealthy andstimulatingpsychologicalenvironmentisnecessary.

A healthyand stimulatingpsychological environmentisnecessary forachild'sdevelopment.

Whathappenswhenthebrainfailstomatureandgrow? Naturally,suchbabiesfailtodevelopandacquiremilestones like normal children. Theseconditions, inwhichthere is a significant deficit or delay in thedevelopment of various mental functions from early childhood, are called developmentaldisabilities. One can recognize different types of developmental disabilities, depending on what function or functions are affectedandhowextensiveisthelimitation. MentalRetardation: Thisisaconditioninwhichthereisdelayor deficiencyinallaspectsofdevelopment,i.e.thereisglobal and noticeable deficiency in thedevelopment of motor, cognitive , social, and language functions. This is the commonestformofdevelopmentaldisability.Inmanyways, mentalretardation is alsorepresentative of developmental disabilitiesingeneral,initscausation,nature,andcare.

WHAT IS MENTAL RETARDATION ?

Hashanisafouryearoldboy; hestillcan'twalk independently,butcantakea fewstepswithsupport.Hecan recognizefamilymembers, butcannotshowwherehisear andnoseare.Hecanbabble (sayba-ba-ba)buthasnot learnttosayanymeaningful word.Hecan'tindicatetoilet needs.Hisparentssaythathe islikeaone-year-oldchildin hismentalabilities. Hashan hasmentalretardation.

Yogeeta

Ashaisathree-year-oldchild. Shecanspeakwell,singa song,drawapictureofacat, andeatbyherself.Butshe cannotyetwalk,andmoves aroundthehousecrawling.Her parentsreportthatshewas slowinholdingherheadupand sitting,comparedtotheirother children.Herlowerlimbsare stiffandcrossoverlike scissorswhensheliesdown. Ashahasaspastictypeof cerebralpalsyaffectingher lowerlimbs.

CerebralPalsy: Inthis condition,there is grossdelayin the developmentofmotorfunctions.Childrenwithcerebralpalsy havegreatdifficultyininitiatingandcontrollingtheirmuscles andbodymovements.Manyofthesechildrenareperfectly well in all otheraspects, such a sintheirspeech,learning abilityandsocialization.Thisdifferentiatescerebralpalsyfrom mental retardation. In addition,their legs andarms may appeartoostiffortoolimp. The main form of treatment ofcerebral palsyis through physiotherapy and stimulation.By these methods, motor developmentcanbe e n h a n c e d a n d c omplications such as contractures of muscles prevented. In a smallnumber of children,medicalandsurgicalmethodscanbeusedtoreduce thestiffnesssothatmovementsbecomeeasier.

Helpisavailable… Helpforindividualswithcerebralpalsyandtheirfamilies isavailablethroughspasticsocietiesfunctioninginmany placesin India.Recently,anorganizationdevotedto cerebralpalsy,calledIndianFamilyofCerebralPalsy,has beenstartedinHyderabad,India.

DeepashreeM.Shanbhag

LanguageDevelopmentalDisability: Somechildrendevelopwell inallotheraspectsexceptspeech.Thishappenseventhough theirhearingisnormal. Many of these childrenareableto understand what isspokentothem, but they are slowin learning tospeak.Thesechildrencan benefit substantially through speechtherapy.Thetechniquesofspeechtherapy canbelearntbyparentsandpractisedathome.Amajorityof childrenwiththisconditiongrowuptobenormal.

Nadeemisafour-yearoldboy. Hewalksandrunswell.Hecan putonslippers,takeoffhis underwearbeforepassing stools,andhitaballwithabat. Buthecanspeakonly4-5 words:abba,ammi,na-na,and dhu-dhu(formilk).However,he canunderstandandfollow mostverbalinstructions.For instance,whentold,hecan fetchhisfather'sbagfromthe nextroom. Nadeemhas expressivelanguage developmentaldisability.

Didyouknow… AlbertEinsteindidnot speaktillhewasfour yearsoldanddidnot read tillhewasseven. DigitalCreativity

Autism: Thisisararedisorderinwhichchildrenfailtodevelop theabilitytorelateandinteractwithpeople.Theytendtobe lostintheirownworldandremainindifferenttopeoplearound them.Theyhavepooreyecontact.Theymaydevelopsome limited s peech, but fail t o use it for c ommunicating with others.Theytendtospendmostoftheirtimerepeatingthe sameactivitiesagainandagain.Themainformoftreatment for autism is behavioural training to improve social, communicative,andself-helpskills.

Pintu,atwo-and-a-half-yearold boy,spendsmostofhistime eitherrockingbackandforth, orcontinuouslymovinghis handsinfrontofhiseyes.He oftenkeepsrepeatinga meaninglessphrase'tittu'ina peculiarvoice.Hecanseewell, butdoesnotbothertolookand show interestinwhoisaround him.Whencalledbyhismother, hebrieflyglancesatherand goesbacktohisrocking. Inspiteoftheseproblems, hecanclimbupastooland takeouthisfavouritecookies fromatinkeptinthekitchen. Pintuhasautism.

Didyouknow… Thegreatinventor ThomasAlvaEdison, andthefamousartist LeonardodaVinci,had dyslexia?

Dyslexia: Inthiscondition,thelevelofintelligenceisnormalor aboveaverage;yet,suchchildrenhavedifficultyindoingwell in studies.Thishappens because eventhough thechild is otherwise intelligent,hehassignificantdisabilityinlearning thethreeR'sofreading,writing,andarithmetic.Thiscondition shouldnot be confused with mentalretardation,because thesechildrenretaintheir learningabilityinotherareassuch aslanguage,sports,andsocialandartisticskills.Theyoften getunnecessarilyblamedasbeinglazyanduninterestedin studies.The problemis complicated b y their tendency to avoidschoolworkastheyfinditunrewarding.

Raju,a ten-year-oldboy,failedtwiceinclassIII.His motherandhisteacherstriedveryhardtoteachhim thespellingofsuchsimplewordsas'girl','forest'buthe stillmakesmistakes.Hishandwritingisverypoorand hardlylegible.Asampleofhiswritingisasfollows:

(Hen)

(Dog)

(Scored)

(who)

(have)

(night)

Whilereading,hetendstoguessatwhatiswrittenand makesmanymistakes.Butheisverygoodinmaking friends,playingfootballandrunningerrands. Rajuhas dyslexia.

Thisconditioncanbecorrectedtosomeextentbyspecialized methodsofteaching.Itisalsoveryimportantthatchildren withdyslexiaaregivenfullencouragementto developtheir talentsandskillsinnon-academicareas.

Attention Deficit HyperactivityDisorder: Allchildrenareactive, butafewareoveractiveandconsideredhyperactive. They maysleeponlyafewhoursatatime.Whenawake,theyare impulsive,constantlyin motion,darting fromoneactivityto another, oftenfailingto sustain attentioninsimpletasksor games. Such children often have Attention Deficit HyperactivityDisorder(ADHD). ADHDaffectsatleast1-2%ofallschool-agechildren.ADHDis 4-8 times more common in boys than it is in girls. Undiagnosedanduntreated,itwreakshavoconayoungster's senseof self-esteemand interferes w i t h his/her ability to performwellat school,tomakefriends,andtogetalongwith siblingsandparents.

S.V.Krithika

CommonmanifestationsofADHD A child c a n b e s a i d t o h a v e A D H D w h e n several symptomsmentionedbelowareprominentlyseenfor manymonths. ! !

Beingfidgety,restlessandhyperactivemostofthe time; Having poor concentration in activities, leaving tasksunfinished,andfrequentlyshiftingfromone activitytoanother; Impulsive behaviour such as often interrupting others,doingdangerousthingslikerushinginto traffic,peepingintowells,jumpingfromheights, andpullingthetailofdogs; Beingdistractedfromactivitiesbyminorevents andhappenings,and E a s y excitability, over-talkativeness, and aggressive behaviour.

! !

Acomprehensivetreatmentprogrammetakingaholisticview of the individual with ADHD is needed. This requires decisionsregardingadministeringmedicationandbehaviour therapy s t rategies.Oftenteachertraining,parent training, familytherapyorindividualcounsellingisneeded. Conductdisorders: Conductdisorderisdefinedasa“repetitive andpersistentpatternofbehaviourinwhichthebasicrights ofothersormajorage-appropriatesocietalnormsorrulesare violated.”Thegroupofbehaviourscharacteristicofconduct disorder i nclude aggressive behaviour that may c a u se physicalharmorinjurytopeopleoranimals,theft,violationof rules and destruction of property. It is believed t hat approximately1to2%ofchildrenunder18,especiallyboys, sufferfromconductdisordersinSEARMemberCountries.

Theintensityanddurationofthesebehaviouralproblemsin childrenhas significant repercussionsin family, social and academicareas.Conduct disorder may be associatedwith other mental disorders, including ADHD, depression and learning disorders. Severe psychosocial factors, such as familydisharmony,lowsocioeconomiclevel,harshparenting patternsandchildabuse,mayalsoberesponsible.Thestrong influenceofthemedia,especiallytelevisionandrapidsocial and family system changes, could also play a role in precipitatingandmaintainingthemorbiditylevelofconduct disordersinchildren. During evaluation, children with conduct disorders are typicallyhostileandeasilyprovoked.Acarefulassessmentof the family, school and personal dimensions should be undertaken.Managementinvolvesa holistic approachwith emphasisonbehaviourmodificationviateachersandparents. Unchecked, conductdisordersmayleadtoantisocialtraits, substanceabuseandevencriminalbehaviourinadulthood. Prognosismaybegoodincaseswherethereissupportfrom thefamilyandthesocialnetwork.

Yogeeta

Moreaboutmentalretardation Asnoted earlier, mentalretardation isaconditionin which thereisasignificantlysub-averagementaldevelopmentfrom birthorearlychildhood.Mostpeoplewithmentalretardation havetheconditionfrombirth.Inasmallnumber,thecondition mayoccurfollowingdamagetothebraininlaterchildhood. Thiscould,forexample,followanepisodeofbrainfever. Mentalretardationisalsotermedasmentaldeficiency,mental sub-normality,andintellectualdeficiency.Termsthatare also usedincludeidiot,imbecileandmoron.Theseinsultingand demeaningtermsshouldnotbeused. Generally, mental retardationisalife-longcondition.Those affected continue t o have diminished intellectual capacity throughout their lives. However, inmostindividuals with mentalretardation, those parts of the brain that are not damaged continue todevelop.Therefore,they continue to acquireskillsandabilitiesastheygrowolder,albeitslowly.

Mental retardation is not mental illness. The major characteristic of mental retardation is delay in mental development, whereas the major characteristic of mental illness is disturbance in the mental functions of thinking, feeling,andbehaviour.Mentalillnesscanoccuratanyage, whereas mental retardation is present from childhood. However, some people with mental retardation may also developmentalillness.

Degreesofmentalretardation Notallpeoplewithmentalretardationhavethesamelevelof intelligence.Thescientificmethodofmeasuringintelligence isthroughstandardizedpsychologicaltestscalledIQtests.IQ orintelligencequotient,isthe percentageof intelligencea personhas,incomparisontoanormalpersonfromasimilar background.AnIQof100isconsiderednormalintelligence. The lesserthe I Q , t h e m ore severe is the level of mental retardation.BasedonIQ,mentalretardationcanbeclassified intodifferentdegreesasfollows: IQ 85-100 70-85 50-70 35-50 20-35 Below20 Category Normal Normalbutnotretarded Mildmentalretardation Moderate Severe Profound

DigitalCreativity

A more practical and simpler way of classifying mental retardationistothinkof only two categories: mild mental retardationwith an IQ range of 50-70, and severe mental retardationwithanIQbelow35.ThoughtheconceptofIQis usefulinsomeways,itdoesnotalwaysgivethetruepicture oftheabilitiesoftheperson.Arelatedandmoreappropriate measureisthesocialquotient(SQ),inwhichimportanceis giventotheacquisitionofsociallyrelevantskills.

Functioninganddevelopmentofpeoplewithmentalretardation Table1illustratestheattainmentsofpeoplewithdifferent degrees of mental retardation in adulthood. I t i s clear t h a t eventhosewithsevere mentalretardation can becomeat leastpartlyindependentinlookingafterthemselvesthrough propersupervision,careandtraining.

Table1 Adultattainmentsindifferentdegreesofmentalretardation Degree Mild IQrange 50-70 Adultattainments Literacy + Self-helpskills++ Goodspeech++ Semi-skilledwork+ Literacy +/Self-helpskills+ Domesticspeech+ Unskilledworkwithorwithoutsupervision+ Assisted self-helpskills+ Minimum speech+ Assisted householdchores+ Speech+/Self-helpskills+/-

Moderate

35-50

Severe

20-35

Profound

Lessthan20

Note:+meansattainable:++meansdefinitelyattainable:+/-meanssometimesattainable

SOMEFACTS AND FIGURES

entalretardationisacommoncondition.Insurveysin the general population i n I n d i a a m o n g p e o p l e o f a l l ages,ithasbeenfoundthataround2%havemental retardation.Inotherwords,inavillageof1000people,one canexpecttofindaround20peoplewithmentalretardation. Butifoneestimatestheproblemonlyinchildren,(under18 yearsofage)therewillbeabout3%ofcaseswithmental retardationamongallchildren under18yearsofageinthe samevillage.Regardinglearningdisability,astudybyUNICEF inSriLankarevealedthat12%ofprimaryschoolchildrenhad learningdisability.AnotherreportfromSriLankaestimated that15%ofschoolgoingchildrensufferedfromsomeformof disability. A study in children (aged 2-9 years) from Bangladesh found that around 7% had some form of disability.Mentalretardation,thesecondmostcommonform of disability, was seen in around 2% of children. Severe mentalretardationinBangladeshichildren(2-9yearsold)was estimated to be around6 per 1 0 0 0 , i n k e e p i n g with the reportsfromothercountries.In1999,thePlanningDivision, Department of Mental Health of Thailand conducted an epidemiological study on mental health p roblems countrywideandfoundthattherateofoccurrenceofmental retardationwas1.3%. Mildmentalretardationismuchmorecommonthansevere mentalretardation,accountingfor65to75%ofallcaseswith mentalretardation.Lookedatinanotherway,inavillageof 1000people, of the 20whowillhavementalretardation, about15willhavemildmentalretardationandaboutfivewill havemoresevereforms. Ithasbeenfoundthatmentalretardation,especiallymild mentalretardation,ismorecommoninruralareas,andinlowincomegroups.Reasonslikepooraccesstohealthfacilities, under-stimulation,andunder-nutritioncouldaccountforthis observation.

hy does mentalretardation occur?As notedearlier, anything thatdamagesandinterfereswiththegrowth and maturation o f the brain can lead to mental retardation.Therecanbehundredsofsuchcauses.Thismight happenbefore,duringorafterthebirthofthechild.Whilea fewexamples areexplainedbelow,a more detailed listof causesisgiveninTable2.

WHATCAUSES MENTAL RETARDATION ?

MachiPelha

Table2 Causesofmentalretardation Category Prenatal (causesbeforebirth)

Type Chromosomaldisorders Single gene disorders

Examples Downssyndrome*,FragileXsyndrome, PraderWilisyndrome,Klinefelterssyndrome Inbornerrorsofmetabolism,suchasgalactosemia*, phenylketonuria*,mucopolysaccaridoses Hypothyroidism*,Tay-Sachsdisease Neuro-cutaneous syndromessuchastuberous sclerosis,andneurofibromatosis Brain malformationssuchasgeneticmicrocephaly, hydrocephalusandmyelo-meningocele* Otherdysmorphicsyndromes,suchasLaurence MoonBiedlsyndrome RubisteinTabisyndrome D eLangesyndrome Deficiencies* ,suchasiodinedeficiencyandfolicacid deficiency Severemalnutrition* inpregnancy Using substances* such asalcohol(maternalalcohol syndrome),nicotine,andcocaine during early pregnancy Exposure* tootherharmfulchemicalssuchas pollutants,heavy metals,abortifacients, andharmful medicationssuchasthalidomide,phenytoinand warfarinsodiuminearlypregnancy Maternalinfectionssuchasrubella*,syphillis*, toxoplasmosis,cytomegalovirusandHIV Others suchasexcessiveexposure toradiation*,and Rhincompatibility*

Other conditionsof genetic origin Adversematernal / environmentalinfluences

Perinatal (aroundthetime ofbirth)

Thirdtrimester(late pregnancy)

Complicationsofpregnancy* Diseases* inmothersuchas heart andkidney diseaseanddiabetes Placental dysfunction Severeprematurity,verylow birthweight,birth asphyxia Difficultand/orcomplicateddelivery* Birth trauma* Septicemia,severejaundice*, hypoglycemia

Labour(duringdelivery)

Neonatal (firstfourweeksoflife)

Postnatal

(ininfancy andchildhood)

Braininfectionssuchastuberculosis,Japanese encephalitis,and bacterialmeningitis Head injury* Chronicleadexposure* Severeand prolonged malnutrition* Grossunderstimulation*

Note:conditionsmarkedwithanasteriskaredefinitelyorpotentiallypreventable. 24

Somecommoncausesofmentalretardation DownsSyndrome: Thehumanbodyismadeupofbillionsof cells. Each cell contains 46 thread-like structures called chromosomes.InDownssyndrome,becauseofabiological erroraroundthetimeofconception,the cells cometohave oneextra chromosomei.e,47insteadof46chromosomes. Thepresenceofanextrachromosomeinthecellsinterferes withthe normaldevelopmentofthebrain,leadingtomental retardation.Downssyndromeisacommoncauseofmental retardation. It is often possible torecognize people with Downssyndromebytheirfacialappearance,characterizedby up-slantingeyesandflatbridgeofthenose.Downssyndrome occursin about1in800newbornbabies.Eventhoughitisa geneticdisorder,Downssyndromeismostoftennotinherited andcanoccurinanychild.However,itismorelikelytooccur whentheageofthemotheratthetimeofthebirthofthechild isover35years. Eventhoughpersonswith Downssyndrome havemental retardation,theypossessgoodsocialandinteractionalskills. InheritedMetabolicDisorders: Chromosomesinthehumancells containgeneswhichcontrolgrowthandmaturationofthe brain.Someoftheseareresponsibleforchemical(metabolic) reactions,whichareessentialforbraingrowth.Ifsuchagene is abnormal, it can lead to derangement of metabolic reactions and thereby cause mental retardation. Phenylketonuria is one such condition. Babies with phenylketonuria,inadditiontomentalretardation,have lightcoloured hair and skin, a small head, and are prone to convulsions. Maternal Rubella Syndrome: Rubellaor German measles is generally a harmless viral infection in adults, producing symptoms of mild fever, rash, andenlargement of lymph nodes. But when itoccurs for thefirst time during early pregnancy, the virusspreads t o t h e baby growing in the mother's wombandcausesextensivedamage.Whensucha babyisborn,itislikelytohavementalretardationandvisual impairment.

Mothersolderthan35 yearsofagemay considerantenatal geneticscreeningfor diagnosisofDowns syndromeinthe unbornchild.

Detectionof phenylketonuriaatbirth andproperdietary treatmentcanprevent braindamageandhelp babiestogrow normally.

Maternalrubella syndromeispreventable byimmunizingchildren withrubellavaccination (aspartofMMR vaccination).

Iodinedeficiency disordersarepreventable byuniversaliodization ofsalt.

IodineDeficiencyDisorder(cretinism): Iodineisessentialforthe normaldevelopment of unborn babies. Lack of adequate availabilityofiodinefromthemotherrestrictsthegrowthof the brain of the foetus, and leads to a condition called hypothyroidism. Babies with this problem have mental retardation,hearingimpairmentanddwarfism. In addition, theymayhavelethargy,coarsenessoffacialfeatures,rough and dry skin, feeding problems, constipation, cold extremities,andneckswellingbecauseofenlargementofthe thyroidgland.Asevereformofthiscondition,inwhichallthe featuresmentionedareverypronounce d,iscalledcretinism. Iodineoccursnaturallyin food.Butinsomeplaces,thesoil andthefoodaredeficientiniodine.Insuchplaces,naturally,a pregnantwoman'sintakeofiodineislessandthereforetheir infants would also bedeficient in iodine and manifest hypothyroidism.Iodinedeficiencyisprevalentinlargeareasin someMemberCountriesofSEAR. Difficult/ComplicatedDelivery: Tilltheyareborn,babiesreceive theirsupplyoffoodandoxygenfromthemother.Immediately afterbirth,babiesbegintobreatheontheirown.Normally,this transitionoccurssmoothly.When,foranyreason,thedelivery becomesdifficult,prolonged,orcomplicated,oxygensupply to thebabyisdiminished.Asthebrainisverysensitiveto oxygendeprivation, thiscanresultinbraindamage.This is called birth asphyxia.Such babies may have problems in developmentsuchasmentalretardationorcerebralpalsy. Brain Infection (Brain Fever): An important cause ofmental retardationafterbirthisbraininfectionscausedbybacteriaor viruses.Inthiscondition,childrenwhoareotherwisenormal, suddenlydevelopfever,headache,vomiting,convulsionsand lossofconsciousness.Ifthisinfectionissevere,theremaybe irreversiblebraindamageleadingtomentalretardation.Such children,whentheyrecoverfromacuteillness,arenoticedto have lost manyskillswhichtheyhadlearntearlier.Young childrenare more a t risk for brain fever inregionswhere Japaneseencephalitisandtuberculosisarecommon.

Nutrition and Mental Development: A balanced diet rich in calories, protein, vitamins and minerals i s required for pregnant women and young children for normal brain development.Lack of a dequate diet can have direct and indirecteffectsonbraindevelopmentandtherebyincrease theriskofsubnormaldevelopment. Studieshaveshownthatbirthweightisanimportantindicator ofthefuturehealthofthebaby.Ababywithlowbirthweightis more likely tohave problemsinmental development. The height and weight ofwould-be mothers andthe extent of weightgaininpregnancyareimportantfactorsdetermining birthweight.

Propernutritionofthe girlchildandgood nutritionforpregnant womancanprevent manydevelopmental problemsintheirbabies.

Yogeeta 27

Commonhealthproblemsassociatedwithmentalretardation Many children and adults with mental retardation are otherwise physicallyandmentallyhealthy,exceptthatthey havelower intelligence.Severalothers,however,frequently have other problems. The common health problems associatedwithmentalretardationareasfollows: Behaviourproblems: Symptomslikerestlessness(continuously moving around; unable to sit in one place), poor concentration, impulsiveness, temper tantrums, irritability andcrying are common. Other disturbing behaviour, like aggression,self-injurious behaviour(such asheadbanging) and repetitive rocking may also be seen. When such behaviour issevereandpersistent,itcanbecomeamajor sourceofstressforfamilies.Therefore,attentionshouldbe paidtoreducesuchbehaviourwhileprovidingtreatmentand care. Convulsions: About25%ofpeoplewithmentalretardationget convulsions.Manytypesofconvulsionscanoccurinvolving thewholebody,oronlyonehalfofthebody,orsuddensingle jerks leading to a fall.Convulsions, although alarming to watch,canbeeasilycontrolledwithpropermedication. Sensory impairments: Difficulties inseeing and hearing are presentin about5-10%ofpersonswithmentalretardation. Sometimes theseproblemscanberesolvedbyusinghearing aidsorglasses,orundergoingsurgeryforcataract. Asnoted earlier, other developmentaldisabilities,such as cerebralpalsy,speechproblemsandautism,canoccuralong withmental retardation. Persons withmanydisabilities, or multipledisabilities,poseabigchallengeintermsofproviding care.

DigitalCreativity

Individualandfamilyapproaches Mentalretardation isgenerallya life-longcondition a n d i t cannotbe'cured'withmedicaltreatment.Giventhisfact,what canbedoneandwhatshouldbetheaimsandobjectivesin providing care for these individuals? The following considerationsshouldbekeptinmindtoguideactions. Scientific evidence: Scientific research has shown that by providingtherightkindofsupportandservices,itispossible toensure thatthosewithmentalretardationcanlivehealthy and relatively independent lives. These services comprise manyareassuchashealthcare,earlyintervention,education, vocationaltraining,andsoon.Studieshavealsoshownthat considerableillhealth, physicalorbehavioural,inpeoplewith mentalretardationiscausedbylackofappropriatecareandis hencepreventable. Humanisticneed: Ascitizensofacivilizedsociety,itistheright ofpeople with mental retardation to lead theirlives with respect and dignity. I t i s p o s s i b l e t o a c h i e v e t h i s g o a l b y bringing about positive changes in societal awareness, attitudesandbeliefsaboutthiscondition. Family perspective: Very often, the problem of mental retardationisinseparablefromtheproblems faced b y t h e families. It is clear that organized se rvices are definitely neededforfamiliestoadaptwellandfacethesituationwith confidenceandtheleastamountofstress. To achieve these aims, professionals from many fields, families, governmentalandnongovernmentalorganizations, andsocietyasawholehavetoworktogether.Thefollowing principles should help in guiding and directing the developmentofappropriateservices: Normalization Thisconcept,whichoriginatedintheScandinaviancountries, hashadapowerfulinfluence.Insimpleterms,normalization meansensuringthatthesameenvironmentalconditionsof everydaylifeareavailabletopeoplewithmentalretardationas theyareforanybodyelse.Italsomeansprovidingthemwith facilitiestoenabledevelopmentoftheirfullpotential.

WHATCAN BEDONE?

Integration Individuals with mental retardation should become an integral part of society; they should not be isolated, segregatedordiscriminatedagainstinanyfashion. Home-basedCarewithParentsasPartners Researchhasshownthatthebestplaceforchildrenwith mentalretardationtogrowinistheirownfamilies,wherethey can be nurtured with appropriate stimulation. Therefore, services should be organized so that the families are supported,strengthenedandempoweredtolookaftertheir affectedmember.Familieshavedifferentneedsatdifferent stagesinthelifecycleofitsmembers(suchaschildhood, adolescence,andadulthood);thisshouldberecognizedand attempts made to fulfil these needs. I t s h o u l d also be recognizedthatfamiliesarenotjustrecipientsofservicesbut care-providers as well.Inotherwords,theyarepartnersin care. Community-basedApproaches Very often, servicestendtobeconcentratedinwell-to-do urban localities. To overcome this lop-sided approach, a community orientation isnecessary, so t h a t s e r v i c e s a r e availabletolargesectionsofsocietyintheirownvicinity.No programme is likely to succeed without community involvementandparticipation.

ApurbaBhattacharya

Servicesforindividualswithmentalretardation MedicalandPsychological(clinical)Services Thefirst requirementis forappropriatefacilitiesfora good medical/healthevaluation and accurate diagnosis.Doctors should b e i n a p ositiontorecognizeandmanagetreatable disorderssuchashypothyroidism.Associatedproblemssuch as convulsions, sensory impairments and behaviour problems,canbecorrectedorcontrolledwithpropermedical attention.Itisdesirable to havefacilitiesfor psychological assessmentofstrengthsandweaknessesinthechildwhich canformthebasisforfuturetraining. Adequateparentalcounsellingintheinitialstagesisessential. Doctors,nurses,psychologistsandsocialworkerscanmakea bigdifferencetoparentsbycorrectlyexplainingthecondition andthe optionsfortreatmentaswell asbyclarifying their doubts. Parental counselling also involves providing emotionalsupportandguidance,andstrengtheningmorale. Oncethe parentsgetagraspofthecondition,theyneedto learn appropriateways of rearing and training the child. Parents continueto need suchassistance, guidance,and supportasthechildgrowsup,especiallyduringadolescence, earlyadulthoodandduringperiodsofcrisis. There are many claims that some drugs and herbal preparations can improveintelligence. B u t n o d rugsorany othertreatmentcancompletelycurementalretardation. Itisimportanttoensurethatparentsdonotspendalotoftheir valuable moneyandtimeinpursuingtreatmentsthatareof doubtfulornovalue.

Thereisnoknown medicine,herbal preparationor substanceto‘cure’ mentalretardation.

EarlyDetectionandEarlyStimulation Many well-conducted research studieshaveclearlyshown thatdetectingmentalretardationatanearlystage,thatis,in infancy,andprovidingalovingandstimulatingenvironment helps t hese children todevelopbetterandpreventsmany complications. Somemedicalconditionsassociatedwithmentalretardation canbedetectedatbirthitself.Itisalsopossibletodefinea groupofbabieswhoare“atrisk”ofhavingagreaterchanceof developingmentalretardationastheygrowup.Thesearethe babiesbornprematurely,orwithalowbirthweight(lessthan 2kg),orwhohavesufferedbirthasphyxia,orthosewhohave hadaseriousillnessintheneonatalperiod.Awell-recognized methodforearlydetectionistofollowthedevelopmentofall thebabiesfrombirthandobservewhethertheyarelagging behindconsistently.Byandlarge,mostbabieswithsevere mentalretardation c a n b e r e c o g n i z e d b y t h e a g e of6-12 months.Mildmentalretardationusuallybecomesevidentby the age o f two years. Standardized methods for early detectionofmentalretardationarenowavailable,andcanbe adaptedto any culturewith proper modifications. Once a babyisdetectedorsuspectedtoha vementalretardation,itis necessarytoprovideappropriatestimulationforappropriate development.

Yogeeta

Parentsshouldbealert... ! Babieswhoarepremature,orhaveabirthweightof lessthan2kg.Thosewhohadadifficultneonatal periodareatriskfordevelopingmentalretardation; theirdevelopmentneedsclosemonitoring. ! Babieswhoareslowinreachingearlymilestonesof development,suchasholdingupneck(normal = 3-4months),socialsmile(normal=3-4months), sittingwithout support (normal = 7-8months), walking without support (normal = one year 3 months), saying a f e w w o r d s ( n o r m a l = 1 y e a r 6 months) andsocialgesturessuchas" Namaste" (normal=1year6months). ! Repeatedconvulsionsinearlyinfancy. ! Babieswho areinactive,slowtoreactandlethargic. ! Childrenwhoaredependentforself-careactivities suchaseating,dressingandtoiletcontrolevenby theageof4-5years.

Babieswhoareatriskordetectedwithdelayeddevelopment should receive sensory-motor stimulation. These are techniquesbywhichparentsencourageandteachbabiesto useanddeveloptheirsensory(vision,hearingandtouch)and motor (grasping, reaching, manipulating, and transferring) faculties.Techniquesincludeactivelyengagingwiththechild bycaressing,talking,showingbrightobjects,playingtoelicit laughter, tickling, gentle massaging, bouncing, putting the childindifferent positions andplaces,usingtoysand play materialstoarousethechild'sinterest,guidingthehandsto manipulatethingsandsoon.Suchstimulationisnecessaryfor normal development. Children with developmental delay need it all the more, because they are prone to understimulation. Manymanualsandguideshavebeendevelopedtocarryout early stimulation, for instance, Portage Guide to Early Stimulation and PreschoolIntervention forDevelopmentally Delayed Children(publishedbytheNationalInstituteforthe MentallyHandicapped,Secunderabad,India).Someofthese modelshavebeensuccessfullyadaptedtoSEARconditions.

Earlyintervention:asuccessfulventure… Onegoodexampleofearlyinterventionforat-riskbabiesistheUNICEF-fundedproject conductedbytheAndhraPradeshAssociationfortheWelfareofMentallyRetarded,in Hyderabad,India.Allbabiesborninalargehospitalwerescreenedfor riskfactorsfor delayeddevelopment, suchas very low birth weight, birthasphyxia, birth trauma, persistent jaundice,convulsionsandcongenitalanomalies.Interventionwascarriedout for410babieswhowereathighrisk.Mostofthembelongedtoasocioeconomicallylow class.Interventionwasconductedathome,utilizingthe“homevisitor”model,alongthe lines of the Portage Project. During their weekly visits, the trained home visitors educated thefamily members in child health care, provided supportandguidance, taughtthemtheskillsofearlystimulation,andhelpedthemtoaccessmedicalservices. Theresults attheendofthreeyearswereverypositive.Only6.8%hadpersistent developmentaldelay,comparedto12%inagroupofchildreninwhominterventionwas notcarriedoutforavarietyofreasons.

DigitalCreativity 34

TraininginSelf-help,SocialandPracticalSkills Normalchildrenlearntheskillsofdailylivingsuchasfeeding, dressing, toilet training, and socialskills such asplaying, mixing,andinteractingwithotherseasily,bywatchingothers andwithsomeadultguidanceandteaching.Butchildrenwith mentalretardationoftendonotlearntheseskillsontheirown. Throughsystematiceffortsandusingpropertechniques,itis possible to teach andtrainthemintheseskills.Behaviour modification techniques are very useful and effective in teaching.Theseinclude: ! Rewarding or positive reinforcement: Paying attention, praisingthechildandgivingsomematerialreward suchas sweets, candies or toys whenever the child shows desirable behaviour or makes an attempt to learn, increases thechild'smotivation t olearnappropriate and newbehaviour. Modelling: Showing t h e c h i l d h o w a particular activity is done andencouragingthechildtoinitiatetheactivityisa powerfulmethodofteachingnewbehaviour.Thisisbetter thanjustorallytellingorinstructingthechild. Shaping: Thismeans teaching thesimplifiedversion o f a complex activity first and then graduallymakingitmore andmorecomplexatapacecomfortabletothechild. Chaining: Anactivity,suchasdressingskills,canb ebroken upintoseveralsmall,sequentialsteps.Thechildcanbe taughttheseskillsstep-by-step.Veryoften,back-chaining orteachingthelaststepfirstandthengoingbackwardsis moreeffective. ! Physicalguidance: Ifthechildcannotlearnbymodelling,he orshe can be taught the activityby holding hands and showing t h e m h o w the task is done.Aftermany such repetitions, the physical guidance can be slowly withdrawn so that the child learns to do the task independently.

Modern researchhasclearlyestablishedtheutilityof these behaviouraltechniquesinimpartingmanykindsofskills.

SpeechTherapy Speech and language are very important and highly specializedfunctionsforhumanbeings.Theyservethecrucial purposeofcommunicatingone'sownfeelingsandthoughts to others. Mental retardation is oftenaccompaniedby a significant limitation in t h e development of speech a n d language. Research has again shown that a systematic application of speech therapy techniques is effective in promoting speech, languageandcommunication. Speech therapyisrequiredinmanychildrenwithmentalretardation. DigitalCreativity

Education Astheygrowupandmasteractivitiesofdailyliving,children withmentalretardationneedtobeimpartededucationlike otherchildren.Goingtoschoolisessentialforthemtolearn notonlyacademicskillsbutalsodiscipline,social/interactional skills,andpracticalskillsforcommunityliving.Thoughtheyare slowinlearning,experienceandresearchhasshownthatby applyingtherightkindofeducationaltechniques,itispossible toimpartthebasicskillsofreading,writing,andarithmeticto many with mental retardation. The current approachis to educatethem,asfaraspossible,innormalschools,rather than setting up specialschools (inclusiv e education). T h i s especially applies to those with milder forms of mental retardation. However, more severely retarded childrenmay benefitbetterineducationalsettingsmeantforthem(special schools).Anotherapproach,whichisinteresting,istoconduct special classes only for them in normal schools itself (opportunitysections).Whatevermaybe theapproach,itis importanttorealizethatevenchildrenwithmentalretardation need educational experience, to ensure their optimum developmentandwell-being. A positive developmentin SEARMember Countriesisthat thereis, t o a largeextent,informalorcasual integration of children with mild mental retardation in normal school settings.With some effort, it is possible t o s e e thatsuch children are given individual attention. This can be strengthened further byteacher training and provision of resourceteachersandresourceroomssothatmoreandmore childrenwith mentalretardation,especiallythosewithmild mentalretardation,canenterthenormalschoolsystem.This hasbeendemonstratedin manydistricts o f I n d i a , w h e r e a schemeof Integrated Education of the Disabledhasbeen attempted through the joint efforts of governmental a nd nongovernmentalagencies.Recently,therehavebeenmajor initiatives in this direction in Bangladesh, Sri Lankaand Thailand.

Roleofspecialschools Special schools have played a pioneering role i n providing organized services f o r the mentally retarded. They are often started by parents i n collaboration with other interested persons and professionals. T h e number of special schools is steadily increasing in SEAR Member Countries. Thoughinitiallyconfinedtourbanareas,theyarenow extendingtoruralareasinrecenttimes.Theirrolesare alsochanging;theyinitiallyfocusedonlyonproviding specialeducation,butoflatetheyhavebecomelocal resource centres and are even instrumental i n bringing about a positive change, c ommunity awareness and healthy attitudes. Some special schoolshavealsobeenengagedintheextensionof servicesbeyondtheschool.

VocationalTraining Isitpossibleforthesepersons,asyoungsters,tolearnsome vocation andbeemployed?Studieshaveshownthatthisis indeedpossibleforthemajority.Buttherearemanyhurdles. Onemajorhurdleisattitudinal-thereisacommontendency tounderestimatethecapabilitiesofthesepeople. Potential jobs can be manual, unskilled or semi-skilled, dependingonthecapabilitiesoftheindividual.Itshouldbe rememberedthatsuchgainfuloccupationisnot onlypossible butalsohelpfulforthementalhealth,self-satisfaction,and socialstatusoftheseindividuals.Therearemanyinnovative examplesofhowthiscanbeachieved,e.g.,villagescanoffer avarietyofagro-basedopportunitiesforgainfulemployment ofthesepeople. Whenphysicaland attitudinalbarriersareremoved andfacilitiesforlearningand opportunitiescreatedfor trainingtheretarded,the majoritycanbegainfully employed.

DeepashreeM.Shanbhag

Adultswithmentalretardationcanandshouldwork.Herearesomeexamples Bangladesh… A20-year-oldboywithmildmentalretardationwasbroughttotheclinicfromavillagefor problematic behaviour. He spentmost of his time roaming around the village and demandingthingsfromshopkeepers.Theparentstriedtoengagehiminfarmwork,but failed.Whentoldtopickweedsinthefield,hewouldalsopickthecrop.Theboy'suncle volunteeredtotrytotrainhim,afterhelearnthowtotraintheboy.Withalotofpatience andrepeatedteaching,theboylearnttodofarmworkandbecameverygoodatit.He startedenjoyinghisworkandbecameusefultothefamily.Atthesametime,histemper tantrumsanddemandingbehaviourdecreased. India… Inauniqueexperiment,NavjyotiTrustforvocationalrehabilitationinChennaiwasableto modify thelearningenvironmentto successfullyteachtheskills of light engineering assemblytomentallyretardedchildren.NowtheTrustregularlyhandlessuchassembly formanyindustriesoncontractual basis. W o r k o f a high quality isaccomplished by individualswithretardationandthereisalonglistofsmallandlarge-scaleindustrieswho havebeensuccessfullyabletoutilizetheseindividuals.Somehaveevenmadeitapolicyto earmark aproportionofjobsforthem. SriLanka… ThemotherofagirlwithDownssyndromewasveryupsetandworriedwhenshecameto knowoftheproblem.Shekeptworryingaboutwhatthechildwilldowhenshegrewup. But,overtheyears,shenoticedthatthegirlhada flairandtalent forhandlingyoung children.Now,themotherrunsacrècheathomeandthegirldoesmuchofthecaringof children.Bothsheandhermotherlookhappyandconfident. NetherlandsandUSA… IntheNetherlands,adultswithmentalretardationhavebeenengagedsuccessfullyinthe manufactureofTVsetsformorethanthreedecades. Inthe USA,peoplewithmentalretardationcandosomejobsbetterthantheirnormal counterparts.Forinstance,theservicesofpeoplewithmentalretardationwereutilizedin assemblingsomepartsofApollo11,whichwenttothemoon.Thiswasbecausetheirerror rateswerelowercomparedtonormalpeople.Normalpeoplewere morelikelytomake mistakes becauseof boredom, which was not t h e case with those with mental retardation.

ResidentialCare Thereisnodoubtthatthebestplaceforpeoplewithmental retardationtogrowupinistheirownfamily.Thealternativeof setting up large-scale facilities, attempted by Western countriesforaboutacentury,hasprovedtobeabigandcostly blunder. Ontheotherhand,oneissuethatisamajorsourceofworryfor parentsisthepossibilitythattheirretardedchildmayoutlive them.Thequestion,“whatwillhappentomysonordaughter afterwearenomore”keepsbotheringthemastheyandtheir childgrow older. The support ofextended families and transferofcaretothesiblings,whichwerec ommonpractices earlier,maynotbepossibleinthecurrentandfuturescenario. Also, families commonly face the problem of making temporaryarrangementforcareoutsidethefamilyintimesof crisis, familyfunctions,journeysandothersituations.There are also some families in very difficult circumstances, for whomprovidingcarefortheirretarded memberbecomes impossible.Eventhefamilieswhohavea highcommitment andwhoaretakinggoodcareoftheiraffectedmemberfeel theneedtoberelievedofthestressofcareforshortperiods, toavoidburn-out. Keeping these considerations in mind, it is necessary to establishfacilitiesfortemporaryorpermanentresidentialcare foralimitednumberofpeoplewithmentalretardation.

S.V.Krithika

InThailand… TheMinistryofPublicHealthadoptedthe"Health-for-All2000"policyandimplementedthe primaryhealthcarestrategyin1980.Servicesforintellectuallydisabledpatientswerethen reformed. These included training programmes for general practitioners, nurses, psychologists,socialworkersandcommunityhealth officers.Therewasalsotrainingat generalhospitals,communityhospitalsandhealthcentres,toeducateandtrainstaffin diagnosing mental retardation, delayed development, and in the provision of early interventionservicesandsimplerehabilitation,insteadofhavingtoreceivetheseservices onlyfromspecializedhospitals. Inaddition,therewasatrainingprogrammeforvillagehealthvolunteersineveryvillagein thecountry sothattheintellectuallydisabledpatientswithobvioussymptomscouldbe diagnosed andtreatedlocally.The purposeof thisprojectwastoenablepatientswith obvioussymptomstoaccesstheservicesfromthepublichealthcentresclosesttothem. Villagehealthvolunteerswouldserveascasemanagers,visitingthepatientsandmaking arrangementsfornecessarytreatment. 40

Yogeeta

Thereisawell-known sayingthatthehomeis thefirstschoolfor childrenandthemother isthefirstteacher.This isespeciallytrueinthe caseofchildrenwith mentalretardation.

Whatthefamilycando Therearethreeaspectsconcerningthefamiliesofpersons withmentalretardation.Thefirstisthestresstheyfaceand howtheyadapttotheproblem.Thesecondisthetrainingof parentsas co-therapistsandthethirdistheimportance of establishingorganizations of parents of mentally retarded children. FamilyStressandAdaptation Familiesfacealotofstressanddifficultieswhilecaringfor family members with mental retardation.They encounter differentproblemsatdifferentstages.Stressmaytakemany forms-demandsofdailycare,lackofleisuretime,emotional disturbances such as worries, frustrations, sadness, irritability, and relationship problems between family members. In addition, there is stigmatization, social embarrassment,andfinancialimplications. However, families are n o t always passivesufferers. T h e y makeeffortstoovercomethedifficultiesandtrytocopeand adjusttothesituation.Theytrytosolicitsupportandadvice fromrelatives,friends,religiouspersons,andprofessionals. Inthisprocessofadjustment,certainthingshelpthefamilies tocopeandadaptwell.Familiesneedtogathertherightkind of information about the condition and beco me knowledgeableaboutit.Atsomestage,theyhavetoaccept thementalretardationinafamilymember-theyshouldalso understand that these family members will continue to develop,eventhoughataslowerpace,andthathome-based trainingcanenhancesuchdevelopment. Itisalsoveryimportantforfamiliestopreservetheirown health,maintainfamilycohesionandharmoniousrelations. Theyshouldtryasmuchaspossibletocontinuewiththeir normallife.Theyshouldnotcutofftheirrelationshipsand contactswithfriendsandrelativesoutofasenseofshameor embarrassment.Theburdenofcareshouldnotfallonlyonthe mother;otherfamilymembersshouldalsoshareinthecaring. Familieshaveagreaterchanceofsucceedinginsolvingthe problemswhentheyworkwithasenseoftogetherness.

Families can sometimesbring about bigchanges in the society. One good example was US President John F Kennedy,whohadasisterwithmental retardation. He was responsibleforradicalchangesintheprovisionofservicesfor individualswithmentalretardationinUSA.Familieshavethe responsibilitytoprovidegoodcare,affectionandtrainingto theseindividuals,but,atthesametime,itisnotnecessary thattheysacrificeeverythingforthesakeofthechild. Even people with mentalretardation c a n g i v e a n d r e c e i v e affectionlikeothers.Ahappyfamilyisonethatrecognizesthis factandtakespleasureineventheirsmallachievements.

Some Do'sandDon'tsforparents… ! ! ! ! ! Seekinformation and clarify yourdoubts from reliablesources. Lookatabilitiesratherthandisabilitiesinthechild. Noticesuccessesandpraisethem,howeversmall thesemaybe. Trytolearnthetechniquesoftrainingandpractise them. Rememberthatthosewithmentalretardationare slowinlearning buttheycanstillbetaughtwith patience,persistence,andthecorrectapproach. Findoutaboutservicesthatareavailableandutilize them. Thereisnoneedtofeelashamedabouthaving a retardedchild. Thereisnoneedtoblameo neselforotherfamily membersforthechild'scondition. D o not overprotectthe child; a s faraspossible encouragethemtostandontheirownfeet. Do not waste money unnecessarily on dubious treatments,whichhavenotbeenproven. Contactotherparentsformutualsupport.

! ! ! ! ! !

ParentTraining Initially, thetechniquesoftrainingindividuals withmental retardationweredevelopedforprofessionals.Later,attempts toteachtheseskillstoworkerswithminimalexpertisewere madeandfoundtobefeasible.Stilllater,itwasrealizedthat parentsthemselvescould be taughtthe techniques. A l s o , professionals realizedthatparentscame upwithideasand techniques thattheyhadneverthoughtof!Afamily,inthis way,isaco-therapistandapartnerincare. Manyprogrammeshavebeendevelopedforimpartingthese skills t o parents. Several centres insomeSEARMember Countri esnowholdregularworkshopsforgrouptrainingof parents.SomecentresinIndiahaveevolvedaninnovative approach of short-term residential family-focused intervention,especiallyforthosewithsevereandmultiple disabilities.Avarietyofeducationalandtrainingmaterialsare also available,notably,fromthe National Institutefor the MentallyHandicapped,Secunderabad(India). ParentOrganizations Perhapsthebestpersonswhocanunderstandtheplight of parentswithamentallyretardedchildareotherparentswho have gone through similarexperiences. When many such parentscometogether, t h e y c a n w o r k a s a g r o u p f o r m a n y tangiblebenefitsforthemselvesaswellastheirchildren.This has, infact, happened a l l o v e r theworld in the last 3-4 decades.Theseparentorganizationshavealsobeenreferred toasself-helpgroups.Themainfunctionofthesegroupsisto meet other parents and realize that t h e y are notalone, besidescollectinganddisseminatinginformation,providing supportfor'new'parents,supportingandlearningfromeach other on h o w t o f a c e s i t u a t i o n s andsolve problems, a n d working towardsorganizingbetterservicesintheirlocality. Theycanalsofunctionaspressuregroupstogettheirshareof resourcesfromthegovernmentandevenbringaboutpolicy changes.

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Utilityofparents/groups-amother'sperspective… Themotherofa15-year-oldboyattendingaself-help groupforsometimereported,“Ialwaysthoughtthat itismyfatethatIshouldsilentlysufferbecauseofthe problemscreated by my son. I would f e e l very helplessandtiredbutsomehowusedtocarryon.But thingshavechangednow.Iseeothersfacingsimilar problemsandfeelthatIamnotalone.Ifeelrelieved whenItalkaboutmyproblemsfreelyinthegroup.I have alsolearnthow totacklethe problems better andfeelmoreconfidentaboutthefuture”.

Parental self-helpgroup movementin India: a bigstep forward… In the 1970s, there were very few parents organizations in India. In 1980, W H O c o n d u c t e d several workshops to promote this idea. This provided the motivation for many parents, professionals, and nongovernmental organizations toformself-helpgroupsintheirownlocalities.The idea caughtonovertheyears.TheNationalInstitute for the Mentally Handicapped, Secunderabad, recognized the importance ofthis approachand provided technical and organizational support. A nationalfederation ofparentsassociations(named Parivar) was formed in 1994 andannualmeetings were h e l d . Currently,theseassociationshaveahigh visibility and a big say in matters concerning legislation and policydevelopment at the national level.

Whatthecommunitycando Whatdoesthecommonmanknowaboutmentalretardation? Howdoesherespondwhenhecomesacrosspersonswith mentalretardation?Doeshelookdownuponthem,ridicule themorthinkofthemasapublicnuisanceorviewthemwith fear? O r d o e s h e try tounderstand the problem and d o whateverhecantohelpthem?Howcomfortabledofamilies feelwhentheyhavetotaketheaffectedmemberoutofthe house?Obviously,answerstothesequestionsmakeamajor differenceforindividualswith mentalretardation andtheir families. Putinanotherway,thequalityoflifeofindividualswithmental retardationandtheirfamiliesdependsalotontheawareness, attitudes,andbeliefsofthecommunity.Also,thesocietyasa whole has the responsibility to ensure that t h e r i g h t s of people are protected andfacilitiesforcareareprovided.It followsthatactionsarerequiredatthecommunityandsocial levelstoachievethesegoals.Thisisallthemorenecessary forindividualswithmentalretardation,astheycannotspeak forthemselves.

Socialstigmaofmentalretardationanditsreduction… ! Bothindividualswithmentalretardationandtheirfamilies havetofrequentlyfacescorn,ridicule,fearandrejection. Suchastigmaarisesbecauseofthelackofawarenessand theprevalenceofmanymythsandmisconceptionsabout mentalretardation. Thesestigmatizinginfluencesmake lifemiserablefortheindividualsandtheirfamiliesandadd totheirdifficulties. Thebestwaytoreduceandeliminatestigmaisbyraising awarenessinthecommunityandbydispellingthemyths andmisconceptions.Thishastobedonebyacombined effortoffamilies,communityleaders,governmentaland nongovernmentalorganizations.Activitiessuchaspublic education materials, street plays, public rallies, and programmesutilizingthemassmediaaresomeexamples toachievethisgoal. Atthemicro-level,familieshavetolearntocopewiththeir ownfearsaboutstigmatizationandkeeptheirsociallife intact.

There areother reasons also to initiate actions a t t h e communitylevel.Forinstance,theexistinghealthcareand educationalsystemsmaynot be responsive,sensitive,and concernedenoughtohandletheissuessurroundingmental retardation.Whateverfacilitiesareavailablemaybedifficultto access. Allthese considerations havepropelled concernedpeopleto develop community-based rehabilitation services for disabilitiesin general and mental retardationinparticular. There have been many successful experiments and innovations in SEAR M ember Countries in the last two decades.Notably,nongovernmentalorganizationshavetaken theleadinthisarea. The aimsandobjectivesofcommunity-basedrehabilitation programmesare: ! to increase the awareness of the community andto sensitizeittoissuesandbringaboutapositiveattitudinal change; tofacilitatebringing patients and theirfamiliesintothe mainstream; to mobilize community resources and enhance communityparticipationinbuildingtherequiredservices; toestablishaccessible,availableandaffordableservices forthemajorityofpeoplewithinthecommunityitself; toensurethatth esepeopleandtheirfamilieshaveasayin howtheservicesarerun,and to promote ownership of the programmes by the community itself sothat they continue even without externalaidorsupport.

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! ! ! ! !

India:SourabhaCommunity-basedRehabilitationProjectcare atthedoorsteps… Sri Ramana Maharishi Academy for the Blind, a voluntary organization in Bangalore, started a community-based rehabilitation programme in 140 villages about 40 km from Bangalorein 1990. The programme wasfundedandpartneredby ActionAid. Themainaimwastoproviderehabilitationfacilitiesfor alldisabilitiesincludingmentalretardation,atallagesin thetargetarea. Localpeoplewithsecondaryeducationwerechosen and trained to work as grassroots levelworkers.The main activities were survey/detection, medical evaluationandtreatment(throughcamps),community awareness, parent counselling, stimulation, school enrolment, vocational training, mobilization o f communityresources,andfacilitationofsocialwelfare benefits. This ongoing programme has undergone extensive evaluation, indicating very satisfactoryresults on a varietyofparameters.

VaishaviSachinAmbre

Bangladesh Protibandhi Foundation: a successful NGO initiative… Many NGOsareactivelyworkinginBangladeshforthe welfareofpersonswithmentalretardation.One such organizationwithagoodtrackrecordistheBangladesh Protibandhi Foundation (BPF). Started in 1984 as a parent professionalpartnership,BPFhasbeenplayinga keyroleintheareaofmentalretardation.BPFhasbeen able t o i n i t i a t e a n d sustain a v a r i e t y of activities and programmes, w h i c h include h e a l t h care and psychologicalservices,otherprofessionalservicessuch asphysiotherapyandspeechtherapy,earlystimulation programmes,aspecialschool,andshelteredworksho p. A unique programme of B P F i s t h e DistanceTraining Packagemeantforchildrenwithdelayeddevelopment inremoteruralareas.Thisprogrammemakes use of pictorial training manuals and guides for imparting home-basedskillstomothers,whoperiodicallycontact thecentretoensureongoingintervention.BPFalsohas a strong component of rural and community-based rehabilitation programmes, combining these with developmental activities (such as adult literacy for parentsandmicro-creditfacilitiesforverypoorfamilies). Parentempowerment throughinitiationofparentclubs hasbeenanotherimportantactivity.Inaddition,BPFhas a major rolein promoting the concept ofInclusive Education.BPFhasalsostartedcoursesforpersonnelat differentlevelstoensuretraininganddevelopment.

InSriLanka,theSusitha ParentsAssociationconducts periodicworkshopstotrain volunteersandparentsinthe managementofpersonswith mentalretardation.The participantsareselectedfrom thecommunity,andthe workshopsareheldinmost districts.Thisprogrammehas beenverysuccessful.

Utilizing thehumanresourcesavailableinthecommunityto carry o u t interventions isanimportant steptoreach large sections of the needy population. Such resources would includecommunityvolunteers,grassroots-levelworkers,local peoplewithminimumeducationandschoolteachers.Ithas beenrepeatedlydemonstratedthatitispossibletotransfer basicknowledgeandskillsforthesegroupsofpeoplethrough short-term trainingprogrammes. There isalso a need for “training thetrainers”inafewspecializedcentresmeantfor this purpose. These trainerscould then train others, thus makingitamassmovement.

Whatthegovernmentcando Inthepublicsector,therehavebeenseriousandsustained efforts toensure a wide coverage of community-based services, especially in rural and underserved areas. The IntegratedChildDevelopmentScheme (ICDS) of I n d i a i s a good example with definite components of primary and secondaryprevention. Thegrassrootsworkers(anganwadi workers)underthisschemearefromthesamelocalityand areresponsibleformaternalandchild(under five yearsof age) health care with the main focus on nutrition, immunization, and health education. The scheme also includes early childhood stimulation and detection and referralofchildhooddisabilities. DigitalCreativity

AnothermajordevelopmentinIndiainthelasttwoorthree decadeshasbeentheapproachofcommunitymentalhealth, with mental retardation as a priority condition. The major objective of this movement has been the integration of mentalhealthcareintothegovernment-runprimaryhealth care system.Morerecently,a novel scheme,theDistrict Mental Health Programme has been evolved and implemented in Bellary District of Karnataka. A detailed evaluationofthismodelhasclearlyshowntheeffectiveness andutilityofthisapproach. ThesettingupoftheRehabilitationCouncilofIndiaisarecent and ongoing attempt at sensitizing and training all the functionariesintheprimaryhealthcaresystemtotheissues concerningdisability(includingmental retardation). In this massiveproject,thefunctionariesareundergoingshort-term orientation/trainingatresourcecentresspreadalloverIndia. While all these are very encouraging initiatives and developments, not more than 5-10% of the affected populationiscurrentlybeingservedbytheexistingservices. There is now a need for all concerned people and organizationstoworktogethertocreate,nurtureandsustain moreandmorefacilitiessothatthegenuineneedsofthis sectionofsocietyareadequatelyfulfilled.

PolicyandLegislation Governments have the responsibilitytoprovide optimum services to adequately address the problem of mental retardation. This includes strengthening and effective utilization ofexistingservicesinthehealth,education and welfare sectors; creating new infrastructure where necessary,and encouragingandpromotingactivitiesin the NGOsectorbybuildingpartnershipswiththem. The intent and commitment of governments to allocate resources and develop services in the area of mental retardation needs t o b e expressedin the f o r m o f p o l i c y statementsandenactmentoflegislationatthenationallevel. Severalstepshavebeentakeninthisdirectionrecentlyin MemberCountriesoftheRegion. InIndia,theNational PolicyforMentallyHandicapped wasformulatedin1988,whichgaveanimpetustothe developmentofPersonswithDisabilitiesAct.Coming into f o r c e in 1995, this Act envisages mandatory supportfortheprevention,earlydetection,education, employment and other facilitiesand social security benefitsforthewelfareofpersonswithdisabilitiesin general and mental retardation in particular. I n addition, this Actprovidesforaffirmative actionand non-discrimination o f persons with disabilities. I n keeping w i t h thisAct, several states in India have begun providing many socialsecuritymeasureslike disability pension,family pension, scholarshipsfor specialeducation,travelconcession,incometaxrelief and special insurance policies. Another positive development in India is the promulgation of t h e NationalTrustActin1999.ThespiritbehindthisActis toactivelyinvolvethe parentsofmentallychallenged personsandvoluntaryorganizationsinsettingupand running a variety o f services and facilities with governmental funding. It is hoped that the implementationofthisAct will betheanswertoan importantconcernofparents,viz.,“whatwillhappen toourchildafterwearenomore”. Settingupanapexinstitutionatthenationallevelwouldbe another importantgovernmentalinvestmenttoaddressthe needsofthementallyretardedsegmentofthepopulation. 51

NationalInstitutefortheMentallyHandicapped(NIMH),anationalassetinIndia… NIMH was established as an apex body in the field of mental retardationby the GovernmentofIndiain1984atSecunderabadinAndhraPradesh.Themainobjectives weretodevelophumanresources,modelsofcareandrehabilitation,andtoundertake research, documentation,andinformationinthefieldofmentalretardation.Sinceits inception,NIMHhasgrownbyleapsandbounds,withmanyachievementstoitscredit andavisibleimpactonthenationalscene.Itsmajorcontributionshavebeenmanpower development,numerousandverypopularpublicationsonearlystimulation,education, training,andrehabilitation.TheInstitutehasbeenabletodevelopinnovativemodelsof family and community-based care thathaveundergone researchevaluation,andhas functioned asaclearinghouseofinformationatthenationallevel.Recently,ithasbeen instrumentalinpromotingandsupportingtheparentalself-helpgroupmovementinIndia. Other notable activities includeanannual nationalseminaronmental retardation, an annual meet of parent organizations, Special Olympics, awareness campaigns a n d a nationalmeetofspecialemployees.TheInstitutehasmanyregionalcentresalloverIndia, mainlytoruntrainingcoursesformanpowerdevelopment.

InBangladesh... Thereisnospecificlegislationcoveringdisability.However,apolicywasdevelopedin 1995along thelinesofUNstandardrulesonequalityof opportunitiesforpersonswith disability,anddraftlegislationisunderpreparation.Bangladeshisalsoasignatorytothe UNDeclarationofRightsforPersonswithDisabilityandtheConventionontheRightsof theChild.

InSriLanka... TheChildren'sCharter,1991,makesacommitmenttoprovidealifeofdignityforchildren withdisabilities,andpreservetheirrights.It alsomakesspecificprovisionsindifferent areasfortheirdevelopmentandwelfare. InThailand... TheMinistryofPublicHealthinitiatedanewplanofservicesforpeople withintellectual disabilities in1992. This includes early detection and early stimulation programme; neonatalscreeningforhypothyroidism;jobtrainingandjobplacementforpeoplewith intellectual disabilities; self advocacy movement; parental empowerment, and educationalopportunitiesforpeoplewithintellectualdisabilities.

DebjaniMukhopadhyay

Whatthehealthsectorcando Thehealthsectorhasakeyroletoplayinthepromotive,preventive andcurative aspects concerning mental retardation. I t i s a w e l l known f a c t t hat strong and adequate maternalandchildhealth servicesinacommunitycandecreasetheprevalenceofmental retardation. Its essential components are health education, spacing of pregnancies, improving the nutritional status during pregnancy,screeninginpregnancyforconditionssuchassyphillis andRhincompatibility,detectionofandobstetriccareforhigh-risk pregnancy, proper nursing and medical care during labour, nutrit ional supplementation and proper immunization of young children.Inaddition,primaryhealthcarepersonnelcouldcarryout other services such as early detection and intervention for developmental delay,guidance and counselling for familiesand referraltoappropriateagenciesforrehabilitation.

InThailand… The RajanukulHospitalwas set upinBangkok in1960,to provide services for intellectually challenged patients nationwide. Patientswho were admitted would undergo medicaltreatment,vocationaltraining,educationalandsocial rehabilitation. However, being theonly hospital providing suchservices,itwasunabletomeetthedemandsandfailed tofulfilthepatients'needs.Admittingpatientstothehospital foralongperiodhadprovedtobedetrimentaltothepatients foravarietyofreasons.Forexample,theiradaptivebehaviour decreased andthehospital's inability to dischargepatients meantthatitwasunabletoadmitnewpatients.Asaresult, onlyalimitednumberofpatientshadaccesstothehospital's services.In1980,theconceptofprimaryhealthcarewas introduced, which included the delivery of services via communitycentres.Thisresolvedmanyproblemsassociated withprolongedhospitalization.ThustheMinistryofPublic HealthfoundedtheNorthernChildDevelopment Centre in Chiang MaiProvincein northern Thailand in 1994, which becamethecountry'ssecondhospital fortheintellectually challenged.

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PREVENTIVE STRATEGIES

rimary prevention referstoasetofapproaches that reduceoreliminatetheriskofmentalretardationinthe community. As mentioned earlier, these concern promotingthehealthstatusofthecommunityasawholeand affording specific protection against certain conditions. Knowledge ofthecauses ofmentalretardationcanhelpto reduce cases by at least 25% by practising primary prevention. There are manymethods of primaryprevention.Some of thesearesimple,whereasothersaremorecomplicated. Simplemethods Theseapplytolargesegmentsofthepopulationandbasically mean implementation of certain practical andeffective interventionsatthecommunitylevel.Alargenumberofthese practicesconcernmaternalandchildhealthcare.Someofthe importantstepsare: ! Improving thenutritional statusof thecommunity a s a whole,especiallythegirlchildinordertoreducethe risk factors for mentalretardationsuchas lowbirthweight, andprematurityintheoffspringofthesechildreninfuture; Universal iodization of salt to prevent iodinedeficiency disorders whichare endemicin some partsof SEAR MemberCountries; ! Administration of folic acid tablets to reduce the occurrenceofneuraltubedefects; Nutritional supplementation duringpregnancy,focusing onintakeofcaloriesandiron; Universalimmunization ofchildrenwithBCG,polio,DPT, and MMR to prevent many disorders having the propensity to damage the brain and therebycausing mental retardation.Rubellaimmunization(partofMMR) cantotallyeradicate theoccurrence of maternalrubella syndrome; Avoidingpregnancybefore21yearsandaftertheageof35 yearsascomplicationsofpregnancyandlabouraremore commonbefore21years.TheriskofDownssyndrome and other chromosomal disorders increases as the maternalageatpregnancycrosses35years;

Spacingpregnancies to help themothertonutritionally replenishherselfbeforethenextpregnancy; Avoidingexposuretoharmfulchemicalsandsubstances includingalcohol,nicotineandcocaineduringpregnancy, especiallyearlypregnancy.Failedabortionsarecausedby chemicalsoften administered by quacks,usingharmful medicines. A l l pregnant women should inform their doctorsabouttheirpregnancystatus; Detectionandcareforhigh-riskpregnancies; Screeningpregnantwomenforinfectionssuchassyphilis andpromptlytreatingit; PreventingRhiso-immunization,asituationthatcanarise when the mother has Rhnegative blood group. The damagetothefoetuscanbepreventedbyadministration ofamedicinecalledAnti-Dimmunoglobulinimmediately afterthefirstdelivery; Prompttreatmentforseverediarrhoeaandbraininfections duringchildhoodtoreducethechanceandextentofbrain damage; Providing an enriching andstimulating environment for children from infancy to ensure proper intellectual development; Chronic low-grade exposure to lead can impair brain development;stepsshouldbetakentoreducethesources of environmental poll utants (such as using unleaded petrol),and Healtheducationaboutthenature,causesandprevention of mentalretardation, especially duringthe formative years, canleadtohealthypracticesduringpregnancyand child-rearing. DigitalCreativity

! !

Advancedmethods These are technology-intensive and generally more expensivethanprimarypreventionmeasures.Fromapublic healthviewpoint,theyare of lesserimportanceinreducing theoccurrenceofmentalretardationcomparedtothesimple measureslistedabove.Theseinclude:

! Prenataldiagnosis/screening: Advancesinmodernmedicine

havemadeitpossibletodetectthepresenceofcertain structural and functional abnormalities in the growing embryo in early pregnancy. The pregnancy could be aborted if the embryo is found to have a serious abnormality.Someoftheseproceduresarerelativelysafe, inexpensive, and widely available.For instance,ultrasonograminearlypregnancycandetectthepresence of severemalformationsofthebrainandotherorgans.But othermethodsinvolvinggenetictestingbyamniocentesis (removing somefluidfromtheuterus ofthemother) or chorionic villus biopsy (taking a small piece from t h e placenta of the mother) are expensive, technically complex, and n o t widely availableandhavetheirown risks.Oneshouldalso rememberthat there are many unresolvedethicalissuesinapplyingthesetechniques. retardationforwhichdefinitetreatmentisavailableinthe formof medicinesorspecialdiets.Some examples are phenylketonuria, galactosemia, and hypothyroidism. Testsareavailabletodetecttheseconditionsatbirthitself. Iftheseconditionsare detectedatbirthandtreatmentis startedimmediately,theoccurrenceofmentalretardation andotherproblemscanbeprevented.Testingallnewborn babieshasbecomeastandardpracticeinmanywestern countries. However, widespread use of neonatal screening in SEAR Member Countries may not be currentlypossiblebecauseoflimitationsintheprevailing healthcare system. babies cansometimesbepreventedbyprovidinghighly specializedandtechnology-intensivecareintheneonatal intensivecareunits.Theseareveryexpensivetoset up andthecostofcareisalsoveryhigh.Fromapublichealth point of view, the impact of these services on the prevalenceofmentalretardationmaybesmall.

! Neonatal screening: There are somecauses of mental

! Neonatalintensivecare: Braindamageinverysicknewborn

! Geneticcounselling: Prospectiveparents,especiallycouples whoalreadyhaveachildwithmentalretardationare keen to know the risk o f their next child being affected. Professionaladviceto suchparentsmayhelpthemmake informed decisions about having the next child. Such geneticcounsellingcouldbeassimpleastellingparents whohaveachildwithmentalretardationcausedbybrain infectionthattheriskfortheirnextchildisverylow.Orit couldbeaverycomplicatedmatterneedingseveralcostly investigationswhenageneticcauseissuspected. Recently, therehavebeen rapid advances inthe fie ld of genetics.Anewsetoftechniquesforthedetectionofgenetic andotherdisorderscalledmoleculargeneticshasevolvedin thelastdecade.Thoughcostly,thetechniquesarelikelyto becomeinexpensiveand becomeapplicableforwiderusein future. One example i s the possibility of detecting the presence ofDownssyndromebydoingabloodtestonthe motherduringearlypregnancy.Suchtestsperhapswould becomecommoninfuture. Levelsofprevention ThisisanimportantapproachdevelopedbyWHO,visualizing preventionatmanylevels.Fromthisviewpoint,allservices, including earlyinterventionc anbeconsideredaspreventive measures. The levels include health promotion, specific protection, early detection and intervention, disability limitation, and rehabilitation. Table 3 showsanoverviewof how these levels are applicable in the area of mental retardation.

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Table3 Levelsofprevention Level Approach Interventions

PrimaryPrevention (preventingtheoccurrence retardation) Healthpromotion Healtheducation,especiallyforadolescent girls Improvementofnutritionalstatusincommunity Optimumhealthcarefacilities Improvementsinpre,periandpostnatalcare Specificprotection Universaliodizationofsalt Rubellaimmunizationforwomenbefore pregnancy Folicacidadministrationinearlypregnancy Geneticcounselling Prenatalscreeningforcongenitalmalformation andgeneticdisorders Detectionandcareforhigh-riskpregnancies PreventionofdamagebecauseofRh incompatibility Universalimmunizationforchildren

SecondaryPrevention (haltingdiseaseprogression)

Earlydiagnosis andtreatment

Neonatalscreeningfortreatable disorders Intervention with“atrisk”babies Earlydetectionandinterventionof developmental delay

TertiaryPrevention (preventingcomplications andmaximizationof functions)

Disabilitylimitation andrehabilitation

Stimulation,trainingandeducation,and vocationalopportunities Mainstreaming/integration Supportforfamilies Parentalse lf-helpgroups

Primarypreventionstrategiesremaintheoptimumsolutions inSEARMemberCountries.Not onlyarethese effective,thereisno‘cure’formostcasesofmentalretardation,andknowledge andfacilitiesforsecondaryandtertiarypreventionarelimited.

Key facts

Organisation World Health Organization (WHO)

Document type Publications

Adoption date December 31, 2001

Source World Health Organization