MentalRetardation

World HealthOrganizationRegional Officefor

South-EastAsia

Fromknowledgetoact ion

MentalRetardation

World HealthOrganizationRegional Officefor

South-EastAsia

Fromknowledgetoact ion

CoordinatingAuthor:

AdditionalProfessor,DepartmentofPsychiatryNationalInstituteofMentalHealthandNeuroSciencesBangalore,India

Co-Authors:

ChiefExecutiveandGeneralSecretaryBangladeshProtibondhiFoundationDhaka,Bangladesh

Counsellor/AdviseronMentalRetardationPresident,SusitaSuwasethaParentsAssociationSarvodayaMoratuwa,SriLanka

RajanukulHospitalDinDaengDistrictBangkok,Thailand

DrSatishGirimaji

Dr(Mrs)SultanaS.Zaman

MrsP.M.Wijetunga

DrUdomPejarasangharn

SectionsonADHDandConductDisorderscontributedby ,ConsultantPsychiatrist,VidyasagarInstituteofMentalHealthandNeuroSciences,NewDelhi,India

DrJitendraNagpal

© WorldHealthOrganization2001

ThisdocumentisnotaformalpublicationoftheWorldHealthOrganization(WHO),andallrightsarereservedbytheOrganization.Thedocumentmay,however,befreelyreviewed,abstracted,reproducedortranslated,inpartorinwhole,butnotforsaleorforuseinconjunctionwithcommercialpurposes.

Theviewsexpressedindocumentsbynamedauthorsaresolelytheresponsibilityofthoseauthors.

!

!

!

Paintingsonpages6,13,19,27,32,41,47,55and59arecontributedtoWHOcomplimentarybyYogeeta,aneminentartist.Paintingsonpages11,14,17,23,30,38,40,48and53arepartofaWHO-sponsoredglobalschoolcontestonmentalhealthforchildrenaged6-9years.Computergraphicsonpages9,15,20,28,34,36,44,50and57werecreatedatExposureMultiples.

Authors

SEA/Ment/119Distr:General

INTRODUCTION..............................................................................

HISTORICALBACKGROUND..........................................................

MYTHSANDMISCONCEPTIONSABOUTMENTALRETARDATION.................................................................

NORMALDEVELOPMENTOFCHILDREN.....................................

WHATISMENTALRETARDATION?................................................

SOMEFACTSANDFIGURES..........................................................

WHATCAUSES MENTALRETARDATION?.....................................

WHATCANBEDONE?....................................................................

PREVENTIVESTRATEGIES..............................................................

MentalRetardation:From knowledgeto action

Contents

6

7

8

12

13

20

21

27

54

CoordinatingAuthor:

AdditionalProfessor,DepartmentofPsychiatryNationalInstituteofMentalHealthandNeuroSciencesBangalore,India

Co-Authors:

ChiefExecutiveandGeneralSecretaryBangladeshProtibondhiFoundationDhaka,Bangladesh

Counsellor/AdviseronMentalRetardationPresident,SusitaSuwasethaParentsAssociationSarvodayaMoratuwa,SriLanka

RajanukulHospitalDinDaengDistrictBangkok,Thailand

DrSatishGirimaji

Dr(Mrs)SultanaS.Zaman

MrsP.M.Wijetunga

DrUdomPejarasangharn

SectionsonADHDandConductDisorderscontributedby ,ConsultantPsychiatrist,VidyasagarInstituteofMentalHealthandNeuroSciences,NewDelhi,India

DrJitendraNagpal

© WorldHealthOrganization2001

ThisdocumentisnotaformalpublicationoftheWorldHealthOrganization(WHO),andallrightsarereservedbytheOrganization.Thedocumentmay,however,befreelyreviewed,abstracted,reproducedortranslated,inpartorinwhole,butnotforsaleorforuseinconjunctionwithcommercialpurposes.

Theviewsexpressedindocumentsbynamedauthorsaresolelytheresponsibilityofthoseauthors.

!

!

!

Paintingsonpages6,13,19,27,32,41,47,55and59arecontributedtoWHOcomplimentarybyYogeeta,aneminentartist.Paintingsonpages11,14,17,23,30,38,40,48and53arepartofaWHO-sponsoredglobalschoolcontestonmentalhealthforchildrenaged6-9years.Computergraphicsonpages9,15,20,28,34,36,44,50and57werecreatedatExposureMultiples.

Authors

SEA/Ment/119Distr:General

INTRODUCTION..............................................................................

HISTORICALBACKGROUND..........................................................

MYTHSANDMISCONCEPTIONSABOUTMENTALRETARDATION.................................................................

NORMALDEVELOPMENTOFCHILDREN.....................................

WHATISMENTALRETARDATION?................................................

SOMEFACTSANDFIGURES..........................................................

WHATCAUSES MENTALRETARDATION?.....................................

WHATCANBEDONE?....................................................................

PREVENTIVESTRATEGIES..............................................................

MentalRetardation:From knowledgeto action

Contents

6

7

8

12

13

20

21

27

54

Whenachildwithmentalretardationisborn,theinitialreactioninmostfamiliesisthatof"gloomanddoom".Sometimesthereisanattempttodetermine"whyme?"orblamesomeoneorsomethingforthetragedyinthefamily. InpoorersegmentsofthepopulationofSEARMemberCountries,havingachildwithmentalretardationisadoubletragedy;notonlyisthechildunabletocontributetothefamily'sresources,insteadhe/sheneedsadditionalcaringwhichdrainsthefamily'sresources.Thus,

havingachildwithmentalretardationinthefamilyaffectsnotonlytheindividualwhohasthis problem,butalsotheirfamiliesandthesocietyas

awhole.

Severaladvances in the scientificandsocia l understanding of thisconditionhaveopenedupavarietyofavenuesandopportunitiestoreduce the impactofthisproblemandlimittheextentofdisability.Strategies f or primary prevention with such simple remedies asadequateintakeofiodinebypregnantmothersarenowavailable.

Evenwiththeir l imited resources, much can beachievedinSEAR

MemberCountriesthroughcombinedandcoordinatedactionbythefamilies,governmentsandnongovernmentalorganizations.Nowisthe

t imetotakeupthechallengeandtakeactiontoproducemeaningfulresults.

Thisdocument,preparedbyapanelofexpertsfromtheRegion,providesvaluableinformationonthecurrentstateofknowledgeaboutmentalretardation. More importantly,it alsodescribeswaysandmeansbywhichbettercarecanbeprovidedto"Heaven'sveryspecialchild"bytheirfamiliesandothers.

RegionalAdviser,Health&BehaviourWorldHealthOrganizationRegionalOfficeforSouth-EastAsia

DrVijayChandra

Preface

Populations ofMemberCountriesofthe WorldHealthOrganization'sSouth-East Asia Region have suffered f o r ages f r o m manycommunicablediseases.Whilesomeofthesehavebeensuccessfullycontrolled,otherscontinueasseriouspublichealthproblems.However,recently, it has become increasinglyclear thatnoncommunicablediseases,includingmentalandneurologicaldisorders,areimportantcausesofsufferinganddeathintheRegion.Anestimated400million

peopleworldwidesufferfrommentalandneurologicaldisordersorfrompsychosocialproblemssuchasthoserelatedtoalcoholanddrugabuse.

OurRegionaccountsforasubstantialproportionofsuchpeople. Thus,theRegionfacesthedoubleburdenofdiseases-bothcommunicable

andnoncommunicable.Moreover, with thepopulationincreasinginnumberand age, MemberCountrieswillbeburdenedwithan ever-

growingnumberofpatientswithmentalandneurologicaldisorders.

AsDr GroHarlemBrundtland,theDirector-GeneraloftheWorldHealth

Organization says, "Manyofthem suffer silently, and beyond thesufferingandbeyondtheabsenceofcareliethefrontiersofstigma,

shame,exclusionand,more oftenthanwecaretoknow,death".

While stigmaand discriminationcontinuetobethebiggestobstaclesfacing mentallyillpeopletoday,inexpensivedrugs arenotreaching

many people with m ental and neurological illnesses. Althoughsuccessfulmethodsofinvolvingthefamilyandthecommunitytohelpinrecoveryandreducesufferingandaccompanyingdisabilitieshavebeenidentified,theseareyettobeusedextensively.Thus,manypopulationgroupsstillremaindeprivedofthebenefitsofadvancementinmedicalsciences.DrBrundtlandhas said, "Byacc identordes ign,wearea l lresponsibleforthissituationtoday."

TheWorldHealthOrganizationrecentlydevelopedanewglobalpolicyandstrategyforworkintheareaofmentalhealth. LaunchedbytheDirector-General inBei j ingin November 1999, thepolicyemphasizesthreepriorityareasofwork:(1)Advocacy toraisethe profileofmentalhealthandfightdiscrimination;(2)Policytointegratementalhealthintothegeneral health sector,and(3)Effectiveinterventionsfortreatmentandpreventionandtheirdissemination.TheSouth-EastAsiaRegionalOfficeoftheWorldHealthOrganizationiscommitted topromotingthispolicy.

Mentalhealthcare,unlikemanyotherareasofhealth,doesnotgenerally

demandcostlytechnology.Rather,itrequiresthesensitivedeploymentofpersonnelwho have been properlytrainedinthe use ofrelatively

inexpensive drugsandpsychologicalsupport skills onanoutpatientbasis. What isneeded, aboveall,isforallconcernedtoworkclosely

togethertoaddressthemulti-facetedchallengesofmentalhealth.

RegionalDirectorWorldHealthOrganizationRegionalOfficeforSouth-EastAsia

DrUtonMuchtarRafei

Message from theRegionalDirector

Whenachildwithmentalretardationisborn,theinitialreactioninmostfamiliesisthatof"gloomanddoom".Sometimesthereisanattempttodetermine"whyme?"orblamesomeoneorsomethingforthetragedyinthefamily. InpoorersegmentsofthepopulationofSEARMemberCountries,havingachildwithmentalretardationisadoubletragedy;notonlyisthechildunabletocontributetothefamily'sresources,insteadhe/sheneedsadditionalcaringwhichdrainsthefamily'sresources.Thus,

havingachildwithmentalretardationinthefamilyaffectsnotonlytheindividualwhohasthis problem,butalsotheirfamiliesandthesocietyas

awhole.

Severaladvances in the scientificandsocia l understanding of thisconditionhaveopenedupavarietyofavenuesandopportunitiestoreduce the impactofthisproblemandlimittheextentofdisability.Strategies f or primary prevention with such simple remedies asadequateintakeofiodinebypregnantmothersarenowavailable.

Evenwiththeir l imited resources, much can beachievedinSEAR

MemberCountriesthroughcombinedandcoordinatedactionbythefamilies,governmentsandnongovernmentalorganizations.Nowisthe

t imetotakeupthechallengeandtakeactiontoproducemeaningfulresults.

Thisdocument,preparedbyapanelofexpertsfromtheRegion,providesvaluableinformationonthecurrentstateofknowledgeaboutmentalretardation. More importantly,it alsodescribeswaysandmeansbywhichbettercarecanbeprovidedto"Heaven'sveryspecialchild"bytheirfamiliesandothers.

RegionalAdviser,Health&BehaviourWorldHealthOrganizationRegionalOfficeforSouth-EastAsia

DrVijayChandra

Preface

Populations ofMemberCountriesofthe WorldHealthOrganization'sSouth-East Asia Region have suffered f o r ages f r o m manycommunicablediseases.Whilesomeofthesehavebeensuccessfullycontrolled,otherscontinueasseriouspublichealthproblems.However,recently, it has become increasinglyclear thatnoncommunicablediseases,includingmentalandneurologicaldisorders,areimportantcausesofsufferinganddeathintheRegion.Anestimated400million

peopleworldwidesufferfrommentalandneurologicaldisordersorfrompsychosocialproblemssuchasthoserelatedtoalcoholanddrugabuse.

OurRegionaccountsforasubstantialproportionofsuchpeople. Thus,theRegionfacesthedoubleburdenofdiseases-bothcommunicable

andnoncommunicable.Moreover, with thepopulationincreasinginnumberand age, MemberCountrieswillbeburdenedwithan ever-

growingnumberofpatientswithmentalandneurologicaldisorders.

AsDr GroHarlemBrundtland,theDirector-GeneraloftheWorldHealth

Organization says, "Manyofthem suffer silently, and beyond thesufferingandbeyondtheabsenceofcareliethefrontiersofstigma,

shame,exclusionand,more oftenthanwecaretoknow,death".

While stigmaand discriminationcontinuetobethebiggestobstaclesfacing mentallyillpeopletoday,inexpensivedrugs arenotreaching

many people with m ental and neurological illnesses. Althoughsuccessfulmethodsofinvolvingthefamilyandthecommunitytohelpinrecoveryandreducesufferingandaccompanyingdisabilitieshavebeenidentified,theseareyettobeusedextensively.Thus,manypopulationgroupsstillremaindeprivedofthebenefitsofadvancementinmedicalsciences.DrBrundtlandhas said, "Byacc identordes ign,wearea l lresponsibleforthissituationtoday."

TheWorldHealthOrganizationrecentlydevelopedanewglobalpolicyandstrategyforworkintheareaofmentalhealth. LaunchedbytheDirector-General inBei j ingin November 1999, thepolicyemphasizesthreepriorityareasofwork:(1)Advocacy toraisethe profileofmentalhealthandfightdiscrimination;(2)Policytointegratementalhealthintothegeneral health sector,and(3)Effectiveinterventionsfortreatmentandpreventionandtheirdissemination.TheSouth-EastAsiaRegionalOfficeoftheWorldHealthOrganizationiscommitted topromotingthispolicy.

Mentalhealthcare,unlikemanyotherareasofhealth,doesnotgenerally

demandcostlytechnology.Rather,itrequiresthesensitivedeploymentofpersonnelwho have been properlytrainedinthe use ofrelatively

inexpensive drugsandpsychologicalsupport skills onanoutpatientbasis. What isneeded, aboveall,isforallconcernedtoworkclosely

togethertoaddressthemulti-facetedchallengesofmentalhealth.

RegionalDirectorWorldHealthOrganizationRegionalOfficeforSouth-EastAsia

DrUtonMuchtarRafei

Message from theRegionalDirector

HISTORICALBACKGROUND

ases of mental retardation are found in everycommunity, althoughthey are referredtodifferently,suchas, inIndia, in

Bangladesh, and inSriLanka. Casesofmentalretardationhavebeendocumentedinancientmedicalliteratureandinfiction.KashyapaSamhita,anancientAyurvedictreatiseonchildhood diseases, makesaspecific reference to children born with lesser intellect( ), andevenofferstreatmenttoimprovethecondition.There is mention of disabilities in Sri Lankan medicalchroniclesandliterature.Onecanfind manyreferencestodisabilitiesin Jathakastories, dealing with the l i fe o f theBuddha. Several references to weaknessof the mindarefoundinthe‘HolyQuran’andinawell-attestedsermonoftheProphetMuhammad.

Overtheyears,traditionalsocietiesinMemberCountriesoftheSouth-EastAsiaRegion(SEAR)ofWHOhavedealt withthesepeoplewithanattitudeoftolerance,acceptanceandresignation.Theyhavebeencaredforwithasenseofdutyandcompassion.InSriLanka,somefamiliesevenconsideritadivineblessingtohave beenchosenbyGodtolookafteraspecialchild.Butthismaynotalwaysbethecase. Familiesmayconsiderthebirthofsuchachildasamisfortune,acurse,ordestinywhichtheyhavetolivewith,leading,attimes,tothesubjectbeingtreatedwithneglect,rejection,segregationandabuse.

Many SEARMemberCountriesareundergoingsubstantialsocialtransition. This includes changesincommunity andfamily attitudes towards mental retardation. Unlike earliertimes,itmaynotbepossibleforfamiliestocareforamentallyretarded memberwithoutexternalandprofessionalsupportandhelp.

mandabuddhi buddhipratibondhimandabuddika/mandamanasika

buddhi

7

AmeetingwasheldquitefarfromEarth,"It'stimeagainforanotherbirth",saidtheangelstotheLordabove."Thisspecialchildwillneedmuchlove. His progress mayseemveryslow,AccomplishmentshemaynotshowAndhewillrequireextracareFromthefolkshemeetswaydownthere.Hemaynotrunorlaughorplay;Histhoughts may s e e m quite faraway;Inmanywayshewon'tadapt,And he will be k n o w n ashandicapped,Solet'sbecarefulwherehe'ssent,Wewanthislifetobecontent."

"Please,Lord,findparentswhowilldoaspecialjobforyou.TheywillnotrealizerightawayTheleadingrolethey'r e askedtoplay.ButwiththischildsentfromaboveComesastrongerfaith andricherlove.Andsoonthey'llknowtheprivilegegivenIncaringforthisgiftfromHeaven.Theirpreciouscharge,someekandmildisHeaven'sveryspecialChild."

Anonymous

INTRODUCTION henweseepeoplearoundus,weobservethatsomelacknormalphysicalabilities.Forexample,therearepeoplewhoareunabletosee,hearorspeakandothers

whoareunabletomovearound.Thesepeoplearecommonlyknownasphysicallydisabled.Similarly,therearepeoplewhohavepoorandinsufficientdevelopmentofmentalfunctions,including control over their bodymovements, theirintelligence, social interaction and language,frombirth orearlychildhood.Thisconditioniscalledmentalretardation.

Recently,therehasbeenincreasingawarenessthattheterm"mentalretardation"hasaderogatoryconnotation.Thus,theterm"mentallychallenged"isbeingused.However,sincetheterm"mentalretardation"iswellknowntothecommonman,families with patients and policy-makers, this term willcontinuetobeusedinthismonograph.

Attheglobal level,thelast100yearshaveseenagreaterscientificunderstandingofpeople withmentalretardation.Thishasbeenpossibleduetorapidadvancesinpsychology,medicine, biochemistry,neurosciences,andotherrelatedfields.Theseadvancescanhelppreventmentalretardation,provide better care for those who are already mentallyretarded and enable governments to make appropriatepolicies.

Thismonographsummarizesthecurrentstateofknowledgeaboutmentalretardation.Moreimportantly,italsodescribeswaysandmeansbywhichbettercarecanbeprovided tothosewithmentalretardationbytheirfamiliesandothers.

6 Yogeeta

HISTORICALBACKGROUND

ases of mental retardation are found in everycommunity, althoughthey are referredtodifferently,suchas, inIndia, in

Bangladesh, and inSriLanka. Casesofmentalretardationhavebeendocumentedinancientmedicalliteratureandinfiction.KashyapaSamhita,anancientAyurvedictreatiseonchildhood diseases, makesaspecific reference to children born with lesser intellect( ), andevenofferstreatmenttoimprovethecondition.There is mention of disabilities in Sri Lankan medicalchroniclesandliterature.Onecanfind manyreferencestodisabilitiesin Jathakastories, dealing with the l i fe o f theBuddha. Several references to weaknessof the mindarefoundinthe‘HolyQuran’andinawell-attestedsermonoftheProphetMuhammad.

Overtheyears,traditionalsocietiesinMemberCountriesoftheSouth-EastAsiaRegion(SEAR)ofWHOhavedealt withthesepeoplewithanattitudeoftolerance,acceptanceandresignation.Theyhavebeencaredforwithasenseofdutyandcompassion.InSriLanka,somefamiliesevenconsideritadivineblessingtohave beenchosenbyGodtolookafteraspecialchild.Butthismaynotalwaysbethecase. Familiesmayconsiderthebirthofsuchachildasamisfortune,acurse,ordestinywhichtheyhavetolivewith,leading,attimes,tothesubjectbeingtreatedwithneglect,rejection,segregationandabuse.

Many SEARMemberCountriesareundergoingsubstantialsocialtransition. This includes changesincommunity andfamily attitudes towards mental retardation. Unlike earliertimes,itmaynotbepossibleforfamiliestocareforamentallyretarded memberwithoutexternalandprofessionalsupportandhelp.

mandabuddhi buddhipratibondhimandabuddika/mandamanasika

buddhi

7

AmeetingwasheldquitefarfromEarth,"It'stimeagainforanotherbirth",saidtheangelstotheLordabove."Thisspecialchildwillneedmuchlove. His progress mayseemveryslow,AccomplishmentshemaynotshowAndhewillrequireextracareFromthefolkshemeetswaydownthere.Hemaynotrunorlaughorplay;Histhoughts may s e e m quite faraway;Inmanywayshewon'tadapt,And he will be k n o w n ashandicapped,Solet'sbecarefulwherehe'ssent,Wewanthislifetobecontent."

"Please,Lord,findparentswhowilldoaspecialjobforyou.TheywillnotrealizerightawayTheleadingrolethey'r e askedtoplay.ButwiththischildsentfromaboveComesastrongerfaith andricherlove.Andsoonthey'llknowtheprivilegegivenIncaringforthisgiftfromHeaven.Theirpreciouscharge,someekandmildisHeaven'sveryspecialChild."

Anonymous

INTRODUCTION henweseepeoplearoundus,weobservethatsomelacknormalphysicalabilities.Forexample,therearepeoplewhoareunabletosee,hearorspeakandothers

whoareunabletomovearound.Thesepeoplearecommonlyknownasphysicallydisabled.Similarly,therearepeoplewhohavepoorandinsufficientdevelopmentofmentalfunctions,including control over their bodymovements, theirintelligence, social interaction and language,frombirth orearlychildhood.Thisconditioniscalledmentalretardation.

Recently,therehasbeenincreasingawarenessthattheterm"mentalretardation"hasaderogatoryconnotation.Thus,theterm"mentallychallenged"isbeingused.However,sincetheterm"mentalretardation"iswellknowntothecommonman,families with patients and policy-makers, this term willcontinuetobeusedinthismonograph.

Attheglobal level,thelast100yearshaveseenagreaterscientificunderstandingofpeople withmentalretardation.Thishasbeenpossibleduetorapidadvancesinpsychology,medicine, biochemistry,neurosciences,andotherrelatedfields.Theseadvancescanhelppreventmentalretardation,provide better care for those who are already mentallyretarded and enable governments to make appropriatepolicies.

Thismonographsummarizesthecurrentstateofknowledgeaboutmentalretardation.Moreimportantly,italsodescribeswaysandmeansbywhichbettercarecanbeprovided tothosewithmentalretardationbytheirfamiliesandothers.

6 Yogeeta

9

DigitalCreativity

Myth:

Myth:

Myth:

Myth:

Myth:

Myth:

Tonics/vitamins/medicinescancurementalretardation.

Ifmentalretardationiscausedbyatreatablecondition,appropriatetreatmentwillcureit.However,thereareno"braintonics" which can stimulate a damaged brain. Manyunscrupulous healers and manufacturers market suchsubstanceswithpopularandmisleadingnames,whichimplythat if thesesubstancesare taken, thechild will becomenormal. This is particularly common in ruralareas,wherequacksmarketsomemixtures,guaranteeingparentsacure.These substances frequently contain a substance called‘steroids’.These medicationsmakethechi ldplumperandperhaps happiertemporarily,whichmakestheparentsfeelgood.Butthebasicconditionofmentalretardationisnotcured. I n fact, steroids are harmful if taken for longdurations.

Brainoperationscancurementalretardation.There are very few conditions leading to mental

retardationwhichcanbecuredbysurgery.

Marriagecancurementalretardation.This is completelyfalse.Infact,a mentally retarded

person shouldbemarr iedonlywi ththefu l lconsentandknowledgeofthepartner.

Children with mental retardation become completelynormalwhentheygrowuptobeadults.

Childrencanmakesubstantialprogressastheygrowup.However, it is unlikely that they will become completelynormal.Eachcasemustbeassessedindividually.

Mentallyretarded adultshavepoorsexualcontrolandposeadangertoothers.

Infact,adultswithmentalretardationaresexuallymoreinhibited than their normal counterparts. Onthecontrary,manysuchpeoplearevictimsofsexualabuse.

Mentally retardedchildren are incapable of learninganythingandsoeverythinghastobedoneforthem.

Thesechildrenarecapable of learning, althoughhowmuchtheylearnandatwhatspeedtheylearnmayvary.Theharderweworkwiththem,themoretheywilllearnandmoreindependenttheycanbecome.Thereisnobettersolutiontotheirdevelopmentthanworkinghardwiththem.

Fact:

Fact:

Fact:

Fact:

Fact:

Fact:

8

MYTHSANDMISCONCEPTIONS

ABOUTMENTALRETARDATION

espitethe changing perceptions, many myths andmisconceptions about mental retardation persistamonglargesectionsofthepopulationincountriesof

theRegion.

Mentalretardationisahereditaryproblem.

Onlyafewcausesofmentalretardationarehereditary,i.e.passedonfromparentstochildren.Mentalretardationisoftencausedbyexternalinfluences,someofwhichcanbeprevented.

Baddeedsinthepreviouslifeofparentscausementalretardation.

Thisiscompletelyfalse.Suchbeliefsaddtothesufferingofthefamilieswhoarealreadyoverburdenedwithcaringfortheir special children.Some communities perpetuate themyththatifonetriestoremedytheillnessortaketreatment,thesufferingwillberepeatedinone'snextlife.Thisresultsinaddedsufferingtothepatientfromlackofpropertreatment.

Mentalretardationiscausedbypregnantandlactatingwomennotfollowingrestrictionsonfood.

Pregnant and lactating women must maintain goodnutritionfortheirownhealthandalsoforthehealthoftheunbornornewly-bornchild.Thereisabsolutelynobasis forrestricting foodtopregnantandlactatingwomen.However,somemedications, if takenduringpregnancy,mayleadtomalformations in the unborn child.Medication should betakenonlyontheprescriptionofadoctor.Whenconsultingadoctorforanillness,womenshouldalwaysinformthedoctoraboutbeingpregnant.

Mentalretardationisinfectious.Thisiscompletelyfalse.Mentalretardation cannot be

spread by touching a patient. Children with mentalretardation must be cuddled and lovedjust as much asnormalhealthychildren.

Myth:

Myth:

Myth:

Myth:

Fact:

Fact:

Fact:

Fact:

9

DigitalCreativity

Myth:

Myth:

Myth:

Myth:

Myth:

Myth:

Tonics/vitamins/medicinescancurementalretardation.

Ifmentalretardationiscausedbyatreatablecondition,appropriatetreatmentwillcureit.However,thereareno"braintonics" which can stimulate a damaged brain. Manyunscrupulous healers and manufacturers market suchsubstanceswithpopularandmisleadingnames,whichimplythat if thesesubstancesare taken, thechild will becomenormal. This is particularly common in ruralareas,wherequacksmarketsomemixtures,guaranteeingparentsacure.These substances frequently contain a substance called‘steroids’.These medicationsmakethechi ldplumperandperhaps happiertemporarily,whichmakestheparentsfeelgood.Butthebasicconditionofmentalretardationisnotcured. I n fact, steroids are harmful if taken for longdurations.

Brainoperationscancurementalretardation.There are very few conditions leading to mental

retardationwhichcanbecuredbysurgery.

Marriagecancurementalretardation.This is completelyfalse.Infact,a mentally retarded

person shouldbemarr iedonlywi ththefu l lconsentandknowledgeofthepartner.

Children with mental retardation become completelynormalwhentheygrowuptobeadults.

Childrencanmakesubstantialprogressastheygrowup.However, it is unlikely that they will become completelynormal.Eachcasemustbeassessedindividually.

Mentallyretarded adultshavepoorsexualcontrolandposeadangertoothers.

Infact,adultswithmentalretardationaresexuallymoreinhibited than their normal counterparts. Onthecontrary,manysuchpeoplearevictimsofsexualabuse.

Mentally retardedchildren are incapable of learninganythingandsoeverythinghastobedoneforthem.

Thesechildrenarecapable of learning, althoughhowmuchtheylearnandatwhatspeedtheylearnmayvary.Theharderweworkwiththem,themoretheywilllearnandmoreindependenttheycanbecome.Thereisnobettersolutiontotheirdevelopmentthanworkinghardwiththem.

Fact:

Fact:

Fact:

Fact:

Fact:

Fact:

8

MYTHSANDMISCONCEPTIONS

ABOUTMENTALRETARDATION

espitethe changing perceptions, many myths andmisconceptions about mental retardation persistamonglargesectionsofthepopulationincountriesof

theRegion.

Mentalretardationisahereditaryproblem.

Onlyafewcausesofmentalretardationarehereditary,i.e.passedonfromparentstochildren.Mentalretardationisoftencausedbyexternalinfluences,someofwhichcanbeprevented.

Baddeedsinthepreviouslifeofparentscausementalretardation.

Thisiscompletelyfalse.Suchbeliefsaddtothesufferingofthefamilieswhoarealreadyoverburdenedwithcaringfortheir special children.Some communities perpetuate themyththatifonetriestoremedytheillnessortaketreatment,thesufferingwillberepeatedinone'snextlife.Thisresultsinaddedsufferingtothepatientfromlackofpropertreatment.

Mentalretardationiscausedbypregnantandlactatingwomennotfollowingrestrictionsonfood.

Pregnant and lactating women must maintain goodnutritionfortheirownhealthandalsoforthehealthoftheunbornornewly-bornchild.Thereisabsolutelynobasis forrestricting foodtopregnantandlactatingwomen.However,somemedications, if takenduringpregnancy,mayleadtomalformations in the unborn child.Medication should betakenonlyontheprescriptionofadoctor.Whenconsultingadoctorforanillness,womenshouldalwaysinformthedoctoraboutbeingpregnant.

Mentalretardationisinfectious.Thisiscompletelyfalse.Mentalretardation cannot be

spread by touching a patient. Children with mentalretardation must be cuddled and lovedjust as much asnormalhealthychildren.

Myth:

Myth:

Myth:

Myth:

Fact:

Fact:

Fact:

Fact:

11

PreetiSnigdhaNayak

10

Myth:

Myth:

Mentallyretardedchildrenshouldnotbemadetocryforanyreasonorshouldnotbedisciplinedinanyfashion.

Allchildrenneedtobedisciplined.Everyeffortshouldbemadetoteachchildrenwithmentalretardationwhatisright and what is wrong, recognizing their capacity forlearningandtakingintoconsiderationfactorsbeyondtheircontrol.

Faithhealerscancurementalretardation.Thisiscompletelyuntrue.Thereare manysadstories

aboutparentssellingalltheirvaluablesandtheirlandontheadvice of faith healersand giving this away in charity,frequently to the faith h e aler. Faith healers mislead theparents.There are many alternative systems of medicinepractisedinSEARMemberCountries,someofwhichclaimtohavea‘cure’formentalretardation.However,considerableresearchisstillneededbeforetheirexactefficacyandsafetycanbeestablished.

Mukti, a special education teacher working withdisabled children i n o n e o f t h e c entres r u n by theBangladesh ProtibondhiFoundation(BPF) inDhaka,wasmarriedanddidnothaveanychildrenfor12longyears. Finally,sheconceived,butcontinuedtoworkwiththedisabledchildren.Herrelatives,ne ighboursand well-wishers repeatedly requested her todiscontinueherworkandtoavoidcontactwiththesetypesofchildrenduringherpregnancy,whichwasveryprecious.Attimes,shegotconfusedthinkingofthe unborn child. But her husband was verycooperativeandgaveheralotofmoralandemotionalsupport and askedher not to listen to all thesesuperstitions. Mukti was blessed w i t h a healthydaughter. The baby,named Ritu, accompanied hermothertoworkrightfromthedayshejoinedattheendofhermaternityleave.Ritu,whoisnow1yearand8monthsold,isabright,pleasantchildwithaboveaverageintelligence.

Fightingagainstmisconceptions-anexamplefromBangladesh

Fact:

Fact:

11

PreetiSnigdhaNayak

10

Myth:

Myth:

Mentallyretardedchildrenshouldnotbemadetocryforanyreasonorshouldnotbedisciplinedinanyfashion.

Allchildrenneedtobedisciplined.Everyeffortshouldbemadetoteachchildrenwithmentalretardationwhatisright and what is wrong, recognizing their capacity forlearningandtakingintoconsiderationfactorsbeyondtheircontrol.

Faithhealerscancurementalretardation.Thisiscompletelyuntrue.Thereare manysadstories

aboutparentssellingalltheirvaluablesandtheirlandontheadvice of faith healersand giving this away in charity,frequently to the faith h e aler. Faith healers mislead theparents.There are many alternative systems of medicinepractisedinSEARMemberCountries,someofwhichclaimtohavea‘cure’formentalretardation.However,considerableresearchisstillneededbeforetheirexactefficacyandsafetycanbeestablished.

Mukti, a special education teacher working withdisabled children i n o n e o f t h e c entres r u n by theBangladesh ProtibondhiFoundation(BPF) inDhaka,wasmarriedanddidnothaveanychildrenfor12longyears. Finally,sheconceived,butcontinuedtoworkwiththedisabledchildren.Herrelatives,ne ighboursand well-wishers repeatedly requested her todiscontinueherworkandtoavoidcontactwiththesetypesofchildrenduringherpregnancy,whichwasveryprecious.Attimes,shegotconfusedthinkingofthe unborn child. But her husband was verycooperativeandgaveheralotofmoralandemotionalsupport and askedher not to listen to all thesesuperstitions. Mukti was blessed w i t h a healthydaughter. The baby,named Ritu, accompanied hermothertoworkrightfromthedayshejoinedattheendofhermaternityleave.Ritu,whoisnow1yearand8monthsold,isabright,pleasantchildwithaboveaverageintelligence.

Fightingagainstmisconceptions-anexamplefromBangladesh

Fact:

Fact:

12

NORMALDEVELOPMENTOFCHILDREN

fterbirth,normalbabiescontinuetodevelopphysicallyand mentallytillthe ageof18years.Thisiscalledthedevelopmentalperiod.

Mental development occursinasequential,orderly and apredictablefashion.Normally,onewould expectbabies todevelopcertainskillsbycertainages.Forinstance,walkingandlearningtosayafewwordscomesbytheageof1yearand3months.Thesearecalled“milestonesofdevelopment”.Thesemilestonesareclassifiedinfourareas:motor(controloverbodymovements),cognitive(ability tounderstandanddealintelligently with situations),social (interacting withpeople and learning appropriate social behaviours) andlanguage (understanding what others say and learning totalk).

Anyonewhoisfamiliarwithbabiesknowsthattheydevelopandlearnrapidly,especiallyinthefirst3-4years.Theyareveryquickin learning d uringtheseyears.How do theyacquiresuchacapacity?Growthandmaturationofmanyorgans ofthebodyisresponsibleforthis,butmostimportantly,thisisbecauseofthematuration ofthebrainanditsfunctions.Inotherwords,thebrainundergoesrapid maturation duringtheseear ly years;as a consequence, babies learn anddevelopfast . It shouldberemembered that for acquiringtheseskills,notonlymaturationofthebrain,butalsoahealthyandstimulatingpsychologicalenvironmentisnecessary.

A healthyandstimulatingpsychologicalenvironmentisnecessaryforachild'sdevelopment.

13

Whathappenswhenthebrainfailstomatureandgrow?

Naturally,suchbabiesfailtodevelopandacquiremilestoneslike normal children. Theseconditions, inwhichthere is asignificant deficit or delay in thedevelopment of variousmental functions from early childhood, are calleddevelopmentaldisabilities.

One can recognize different types of developmentaldisabilities, depending on what function or functions areaffectedandhowextensiveisthelimitation.

Thisisaconditioninwhichthereisdelayordeficiencyinallaspectsofdevelopment,i.e.thereisglobaland noticeable deficiency in thedevelopment of motor,cognitive , social, and language functions. This is thecommonestformofdevelopmentaldisability.Inmanyways,mentalretardation is alsorepresentative of developmentaldisabilitiesingeneral,initscausation,nature,andcare.

MentalRetardation:

WHAT ISMENTAL

RETARDATION ?

Hashanisafouryearoldboy;hestillcan'twalkindependently,butcantakeafewstepswithsupport.Hecanrecognizefamilymembers,butcannotshowwherehisearandnoseare.Hecanbabble(sayba-ba-ba)buthasnotlearnttosayanymeaningfulword.Hecan'tindicatetoiletneeds.Hisparentssaythatheislikeaone-year-oldchildinhismentalabilities. Hashanhasmentalretardation.

Yogeeta

12

NORMALDEVELOPMENTOFCHILDREN

fterbirth,normalbabiescontinuetodevelopphysicallyand mentallytillthe ageof18years.Thisiscalledthedevelopmentalperiod.

Mental development occursinasequential,orderly and apredictablefashion.Normally,onewould expectbabies todevelopcertainskillsbycertainages.Forinstance,walkingandlearningtosayafewwordscomesbytheageof1yearand3months.Thesearecalled“milestonesofdevelopment”.Thesemilestonesareclassifiedinfourareas:motor(controloverbodymovements),cognitive(ability tounderstandanddealintelligently with situations),social (interacting withpeople and learning appropriate social behaviours) andlanguage (understanding what others say and learning totalk).

Anyonewhoisfamiliarwithbabiesknowsthattheydevelopandlearnrapidly,especiallyinthefirst3-4years.Theyareveryquickin learning d uringtheseyears.How do theyacquiresuchacapacity?Growthandmaturationofmanyorgans ofthebodyisresponsibleforthis,butmostimportantly,thisisbecauseofthematuration ofthebrainanditsfunctions.Inotherwords,thebrainundergoesrapid maturation duringtheseear ly years;as a consequence, babies learn anddevelopfast . It shouldberemembered that for acquiringtheseskills,notonlymaturationofthebrain,butalsoahealthyandstimulatingpsychologicalenvironmentisnecessary.

A healthyandstimulatingpsychologicalenvironmentisnecessaryforachild'sdevelopment.

13

Whathappenswhenthebrainfailstomatureandgrow?

Naturally,suchbabiesfailtodevelopandacquiremilestoneslike normal children. Theseconditions, inwhichthere is asignificant deficit or delay in thedevelopment of variousmental functions from early childhood, are calleddevelopmentaldisabilities.

One can recognize different types of developmentaldisabilities, depending on what function or functions areaffectedandhowextensiveisthelimitation.

Thisisaconditioninwhichthereisdelayordeficiencyinallaspectsofdevelopment,i.e.thereisglobaland noticeable deficiency in thedevelopment of motor,cognitive , social, and language functions. This is thecommonestformofdevelopmentaldisability.Inmanyways,mentalretardation is alsorepresentative of developmentaldisabilitiesingeneral,initscausation,nature,andcare.

MentalRetardation:

WHAT ISMENTAL

RETARDATION ?

Hashanisafouryearoldboy;hestillcan'twalkindependently,butcantakeafewstepswithsupport.Hecanrecognizefamilymembers,butcannotshowwherehisearandnoseare.Hecanbabble(sayba-ba-ba)buthasnotlearnttosayanymeaningfulword.Hecan'tindicatetoiletneeds.Hisparentssaythatheislikeaone-year-oldchildinhismentalabilities. Hashanhasmentalretardation.

Yogeeta

14

Ashaisathree-year-oldchild.Shecanspeakwell,singasong,drawapictureofacat,andeatbyherself.Butshecannotyetwalk,andmovesaroundthehousecrawling.Herparentsreportthatshewasslowinholdingherheadupandsitting,comparedtotheirotherchildren.Herlowerlimbsarestiffandcrossoverlikescissorswhensheliesdown.Ashahasaspastictypeofcerebralpalsyaffectingherlowerlimbs.

CerebralPalsy: Inthis condition,there is grossdelayin thedevelopmentofmotorfunctions.Childrenwithcerebralpalsyhavegreatdifficultyininitiatingandcontrollingtheirmusclesandbodymovements.Manyofthesechildrenareperfectlywell in all otheraspects, such asintheirspeech,learningabilityandsocialization.Thisdifferentiatescerebralpalsyfrommental retardation. In addition,their legs andarms mayappeartoostiffortoolimp.

The main form of treatment ofcerebral palsyis throughphysiotherapy and stimulation.By these methods, motordevelopmentcanbeenhancedandcomplications such ascontractures of muscles prevented. In a smallnumber ofchildren,medicalandsurgicalmethodscanbeusedtoreducethestiffnesssothatmovementsbecomeeasier.

Helpisavailable…Helpforindividualswithcerebralpalsyandtheirfamiliesisavailablethroughspasticsocietiesfunctioninginmanyplacesin India.Recently,anorganizationdevotedtocerebralpalsy,calledIndianFamilyofCerebralPalsy,hasbeenstartedinHyderabad,India.

DeepashreeM.Shanbhag 15

LanguageDevelopmentalDisability:

Autism:

Somechildrendevelopwellinallotheraspectsexceptspeech.Thishappenseventhoughtheirhearingisnormal. Many of these childrenareabletounderstand what isspokentothem, but they are slowinlearning tospeak.Thesechildrencan benefit substantiallythrough speechtherapy.Thetechniquesofspeechtherapycanbelearntbyparentsandpractisedathome.Amajorityofchildrenwiththisconditiongrowuptobenormal.

Thisisararedisorderinwhichchildrenfailtodeveloptheabilitytorelateandinteractwithpeople.Theytendtobelostintheirownworldandremainindifferenttopeoplearoundthem.Theyhavepooreyecontact.Theymaydevelopsomelimited s peech, but fail to use it for c ommunicating withothers.Theytendtospendmostoftheirtimerepeatingthesameactivitiesagainandagain.Themainformoftreatmentfor autism is behavioural training to improve social,communicative,andself-helpskills.

Nadeemisafour-yearoldboy.Hewalksandrunswell.Hecanputonslippers,takeoffhisunderwearbeforepassingstools,andhitaballwithabat.Buthecanspeakonly4-5words:abba,ammi,na-na,anddhu-dhu(formilk).However,hecanunderstandandfollowmostverbalinstructions.Forinstance,whentold,hecanfetchhisfather'sbagfromthenextroom. Nadeemhasexpressivelanguagedevelopmentaldisability.

Didyouknow…

AlbertEinsteindidnotspeaktil lhewasfouryearsoldanddidnotread tillhewasseven.

Pintu,atwo-and-a-half-yearoldboy,spendsmostofhistimeeitherrockingbackandforth,orcontinuouslymovinghishandsinfrontofhiseyes.Heoftenkeepsrepeatingameaninglessphrase'tittu'inapeculiarvoice.Hecanseewell,butdoesnotbothertolookandshow interestinwhoisaroundhim.Whencalledbyhismother,hebrieflyglancesatherandgoesbacktohisrocking.Inspiteoftheseproblems,hecanclimbupastoolandtakeouthisfavouritecookiesfromatinkeptinthekitchen.Pintuhasautism.

DigitalCreativity

14

Ashaisathree-year-oldchild.Shecanspeakwell,singasong,drawapictureofacat,andeatbyherself.Butshecannotyetwalk,andmovesaroundthehousecrawling.Herparentsreportthatshewasslowinholdingherheadupandsitting,comparedtotheirotherchildren.Herlowerlimbsarestiffandcrossoverlikescissorswhensheliesdown.Ashahasaspastictypeofcerebralpalsyaffectingherlowerlimbs.

CerebralPalsy: Inthis condition,there is grossdelayin thedevelopmentofmotorfunctions.Childrenwithcerebralpalsyhavegreatdifficultyininitiatingandcontrollingtheirmusclesandbodymovements.Manyofthesechildrenareperfectlywell in all otheraspects, such asintheirspeech,learningabilityandsocialization.Thisdifferentiatescerebralpalsyfrommental retardation. In addition,their legs andarms mayappeartoostiffortoolimp.

The main form of treatment ofcerebral palsyis throughphysiotherapy and stimulation.By these methods, motordevelopmentcanbeenhancedandcomplications such ascontractures of muscles prevented. In a smallnumber ofchildren,medicalandsurgicalmethodscanbeusedtoreducethestiffnesssothatmovementsbecomeeasier.

Helpisavailable…Helpforindividualswithcerebralpalsyandtheirfamiliesisavailablethroughspasticsocietiesfunctioninginmanyplacesin India.Recently,anorganizationdevotedtocerebralpalsy,calledIndianFamilyofCerebralPalsy,hasbeenstartedinHyderabad,India.

DeepashreeM.Shanbhag 15

LanguageDevelopmentalDisability:

Autism:

Somechildrendevelopwellinallotheraspectsexceptspeech.Thishappenseventhoughtheirhearingisnormal. Many of these childrenareabletounderstand what isspokentothem, but they are slowinlearning tospeak.Thesechildrencan benefit substantiallythrough speechtherapy.Thetechniquesofspeechtherapycanbelearntbyparentsandpractisedathome.Amajorityofchildrenwiththisconditiongrowuptobenormal.

Thisisararedisorderinwhichchildrenfailtodeveloptheabilitytorelateandinteractwithpeople.Theytendtobelostintheirownworldandremainindifferenttopeoplearoundthem.Theyhavepooreyecontact.Theymaydevelopsomelimited s peech, but fail to use it for c ommunicating withothers.Theytendtospendmostoftheirtimerepeatingthesameactivitiesagainandagain.Themainformoftreatmentfor autism is behavioural training to improve social,communicative,andself-helpskills.

Nadeemisafour-yearoldboy.Hewalksandrunswell.Hecanputonslippers,takeoffhisunderwearbeforepassingstools,andhitaballwithabat.Buthecanspeakonly4-5words:abba,ammi,na-na,anddhu-dhu(formilk).However,hecanunderstandandfollowmostverbalinstructions.Forinstance,whentold,hecanfetchhisfather'sbagfromthenextroom. Nadeemhasexpressivelanguagedevelopmentaldisability.

Didyouknow…

AlbertEinsteindidnotspeaktil lhewasfouryearsoldanddidnotread tillhewasseven.

Pintu,atwo-and-a-half-yearoldboy,spendsmostofhistimeeitherrockingbackandforth,orcontinuouslymovinghishandsinfrontofhiseyes.Heoftenkeepsrepeatingameaninglessphrase'tittu'inapeculiarvoice.Hecanseewell,butdoesnotbothertolookandshow interestinwhoisaroundhim.Whencalledbyhismother,hebrieflyglancesatherandgoesbacktohisrocking.Inspiteoftheseproblems,hecanclimbupastoolandtakeouthisfavouritecookiesfromatinkeptinthekitchen.Pintuhasautism.

DigitalCreativity

16

Dyslexia: Inthiscondition,thelevelofintelligenceisnormaloraboveaverage;yet,suchchildrenhavedifficultyindoingwellin studies.Thishappens because eventhough thechild isotherwise intelligent,hehassignificantdisabilityinlearningthethreeR'sofreading,writing,andarithmetic.Thisconditionshouldnot be confused with mentalretardation,becausethesechildrenretaintheir learningabilityinotherareassuchaslanguage,sports,andsocialandartisticskills.Theyoftengetunnecessarilyblamedasbeinglazyanduninterestedinstudies.The problemis complicatedby their tendency toavoidschoolworkastheyfinditunrewarding.

Raju,a ten-year-oldboy,fai ledtwiceinclassII I .Hismotherandhisteacherstriedveryhardtoteachhimthespellingofsuchsimplewordsas'girl','forest'buthestillmakesmistakes.Hishandwritingisverypoorandhardlylegible.Asampleofhiswritingisasfollows:

Whilereading,hetendstoguessatwhatiswrittenandmakesmanymistakes.Butheisverygoodinmakingfriends,playingfootballandrunningerrands.

Thisconditioncanbecorrectedtosomeextentbyspecializedmethodsofteaching.Itisalsoveryimportantthatchildrenwithdyslexiaaregivenfullencouragementto developtheirtalentsandskillsinnon-academicareas.

(Hen) (Dog) (Scored) (who) (have) (night)

Rajuhasdyslexia.

Didyouknow…

ThegreatinventorThomasAlvaEdison,andthefamousartistLeonardodaVinci,haddyslexia?

17

Attention Deficit HyperactivityDisorder: Allchildrenareactive,butafewareoveractiveandconsideredhyperactive. Theymaysleeponlyafewhoursatatime.Whenawake,theyareimpulsive,constantlyin motion,darting fromoneactivitytoanother, oftenfailingto sustain attentioninsimpletasksorgames. Such children often have Attention DeficitHyperactivityDisorder(ADHD).

ADHDaffectsatleast1-2%ofallschool-agechildren.ADHDis4-8 times more common in boys than it is in girls.Undiagnosedanduntreated,itwreakshavoconayoungster'ssenseof self-esteemand interfereswith his/her ability toperformwellat school,tomakefriends,andtogetalongwithsiblingsandparents.

S.V.Krithika

16

Dyslexia: Inthiscondition,thelevelofintelligenceisnormaloraboveaverage;yet,suchchildrenhavedifficultyindoingwellin studies.Thishappens because eventhough thechild isotherwise intelligent,hehassignificantdisabilityinlearningthethreeR'sofreading,writing,andarithmetic.Thisconditionshouldnot be confused with mentalretardation,becausethesechildrenretaintheir learningabilityinotherareassuchaslanguage,sports,andsocialandartisticskills.Theyoftengetunnecessarilyblamedasbeinglazyanduninterestedinstudies.The problemis complicatedby their tendency toavoidschoolworkastheyfinditunrewarding.

Raju,a ten-year-oldboy,fai ledtwiceinclassII I .Hismotherandhisteacherstriedveryhardtoteachhimthespellingofsuchsimplewordsas'girl','forest'buthestillmakesmistakes.Hishandwritingisverypoorandhardlylegible.Asampleofhiswritingisasfollows:

Whilereading,hetendstoguessatwhatiswrittenandmakesmanymistakes.Butheisverygoodinmakingfriends,playingfootballandrunningerrands.

Thisconditioncanbecorrectedtosomeextentbyspecializedmethodsofteaching.Itisalsoveryimportantthatchildrenwithdyslexiaaregivenfullencouragementto developtheirtalentsandskillsinnon-academicareas.

(Hen) (Dog) (Scored) (who) (have) (night)

Rajuhasdyslexia.

Didyouknow…

ThegreatinventorThomasAlvaEdison,andthefamousartistLeonardodaVinci,haddyslexia?

17

Attention Deficit HyperactivityDisorder: Allchildrenareactive,butafewareoveractiveandconsideredhyperactive. Theymaysleeponlyafewhoursatatime.Whenawake,theyareimpulsive,constantlyin motion,darting fromoneactivitytoanother, oftenfailingto sustain attentioninsimpletasksorgames. Such children often have Attention DeficitHyperactivityDisorder(ADHD).

ADHDaffectsatleast1-2%ofallschool-agechildren.ADHDis4-8 times more common in boys than it is in girls.Undiagnosedanduntreated,itwreakshavoconayoungster'ssenseof self-esteemand interfereswith his/her ability toperformwellat school,tomakefriends,andtogetalongwithsiblingsandparents.

S.V.Krithika

18

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 severalsymptomsmentionedbelowareprominentlyseenformanymonths.

Beingfidgety,restlessandhyperactivemostofthetime;

Having poor concentration in activities, leavingtasksunfinished,andfrequentlyshiftingfromoneactivitytoanother;

Impulsive behaviour such as often interruptingothers,doingdangerousthingslikerushingintotraffic,peepingintowells,jumpingfromheights,andpullingthetailofdogs;

Beingdistractedfromactivitiesbyminoreventsandhappenings,and

Easy excitability, over-talkativeness, andaggressive behaviour.

Acomprehensivetreatmentprogrammetakingaholisticviewof the individual with ADHD is needed. This requiresdecisionsregardingadministeringmedicationandbehaviourtherapy s t rategies.Oftenteachertraining,parent training,familytherapyorindividualcounsellingisneeded.

Conductdisorderisdefinedasa“repetitiveandpersistentpatternofbehaviourinwhichthebasicrightsofothersormajorage-appropriatesocietalnormsorrulesareviolated.”Thegroupofbehaviourscharacteristicofconductdisorder i nclude aggressive behaviour that may causephysicalharmorinjurytopeopleoranimals,theft,violationofrules and destruction of property. It is believed t hatapproximately1to2%ofchildrenunder18,especiallyboys,sufferfromconductdisordersinSEARMemberCountries.

!

!

!

!

!

Conductdisorders:

19

Theintensityanddurationofthesebehaviouralproblemsinchildrenhas significant repercussionsin family, social andacademicareas.Conduct disorder may be associatedwithother mental disorders, including ADHD, depression andlearning disorders. Severe psychosocial factors, such asfamilydisharmony,lowsocioeconomiclevel,harshparentingpatternsandchildabuse,mayalsoberesponsible.Thestronginfluenceofthemedia,especiallytelevisionandrapidsocialand family system changes, could also play a role inprecipitatingandmaintainingthemorbiditylevelofconductdisordersinchildren.

During evaluation, children with conduct disorders aretypicallyhostileandeasilyprovoked.Acarefulassessmentofthe family, school and personal dimensions should beundertaken.Managementinvolvesa holistic approachwithemphasisonbehaviourmodificationviateachersandparents.Unchecked, conductdisordersmayleadtoantisocialtraits,substanceabuseandevencriminalbehaviourinadulthood.Prognosismaybegoodincaseswherethereissupportfromthefamilyandthesocialnetwork.

Asnoted earlier, mentalretardation isaconditionin whichthereisasignificantlysub-averagementaldevelopmentfrombirthorearlychildhood.Mostpeoplewithmentalretardationhavetheconditionfrombirth.Inasmallnumber,theconditionmayoccurfollowingdamagetothebraininlaterchildhood.Thiscould,forexample,followanepisodeofbrainfever.

Mentalretardationisalsotermedasmentaldeficiency,mentalsub-normality,andintellectualdeficiency.Termsthatare alsousedincludeidiot,imbecileandmoron.Theseinsultinganddemeaningtermsshouldnotbeused.

Generally, mental retardationisalife-longcondition.Thoseaffected continue t o have diminished intellectual capacitythroughout their lives. However, inmostindividuals withmentalretardation, those parts of the brain that are notdamaged continue todevelop.Therefore,they continue toacquireskillsandabilitiesastheygrowolder,albeitslowly.

Moreaboutmentalretardation

Yogeeta

18

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 severalsymptomsmentionedbelowareprominentlyseenformanymonths.

Beingfidgety,restlessandhyperactivemostofthetime;

Having poor concentration in activities, leavingtasksunfinished,andfrequentlyshiftingfromoneactivitytoanother;

Impulsive behaviour such as often interruptingothers,doingdangerousthingslikerushingintotraffic,peepingintowells,jumpingfromheights,andpullingthetailofdogs;

Beingdistractedfromactivitiesbyminoreventsandhappenings,and

Easy excitability, over-talkativeness, andaggressive behaviour.

Acomprehensivetreatmentprogrammetakingaholisticviewof the individual with ADHD is needed. This requiresdecisionsregardingadministeringmedicationandbehaviourtherapy s t rategies.Oftenteachertraining,parent training,familytherapyorindividualcounsellingisneeded.

Conductdisorderisdefinedasa“repetitiveandpersistentpatternofbehaviourinwhichthebasicrightsofothersormajorage-appropriatesocietalnormsorrulesareviolated.”Thegroupofbehaviourscharacteristicofconductdisorder i nclude aggressive behaviour that may causephysicalharmorinjurytopeopleoranimals,theft,violationofrules and destruction of property. It is believed t hatapproximately1to2%ofchildrenunder18,especiallyboys,sufferfromconductdisordersinSEARMemberCountries.

!

!

!

!

!

Conductdisorders:

19

Theintensityanddurationofthesebehaviouralproblemsinchildrenhas significant repercussionsin family, social andacademicareas.Conduct disorder may be associatedwithother mental disorders, including ADHD, depression andlearning disorders. Severe psychosocial factors, such asfamilydisharmony,lowsocioeconomiclevel,harshparentingpatternsandchildabuse,mayalsoberesponsible.Thestronginfluenceofthemedia,especiallytelevisionandrapidsocialand family system changes, could also play a role inprecipitatingandmaintainingthemorbiditylevelofconductdisordersinchildren.

During evaluation, children with conduct disorders aretypicallyhostileandeasilyprovoked.Acarefulassessmentofthe family, school and personal dimensions should beundertaken.Managementinvolvesa holistic approachwithemphasisonbehaviourmodificationviateachersandparents.Unchecked, conductdisordersmayleadtoantisocialtraits,substanceabuseandevencriminalbehaviourinadulthood.Prognosismaybegoodincaseswherethereissupportfromthefamilyandthesocialnetwork.

Asnoted earlier, mentalretardation isaconditionin whichthereisasignificantlysub-averagementaldevelopmentfrombirthorearlychildhood.Mostpeoplewithmentalretardationhavetheconditionfrombirth.Inasmallnumber,theconditionmayoccurfollowingdamagetothebraininlaterchildhood.Thiscould,forexample,followanepisodeofbrainfever.

Mentalretardationisalsotermedasmentaldeficiency,mentalsub-normality,andintellectualdeficiency.Termsthatare alsousedincludeidiot,imbecileandmoron.Theseinsultinganddemeaningtermsshouldnotbeused.

Generally, mental retardationisalife-longcondition.Thoseaffected continue t o have diminished intellectual capacitythroughout their lives. However, inmostindividuals withmentalretardation, those parts of the brain that are notdamaged continue todevelop.Therefore,they continue toacquireskillsandabilitiesastheygrowolder,albeitslowly.

Moreaboutmentalretardation

Yogeeta

20

Mental retardation is not mental illness. The majorcharacteristic of mental retardation is delay in mentaldevelopment, whereas the major characteristic of mentalillness 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 alsodevelopmentalillness.

Notallpeoplewithmentalretardationhavethesamelevelofintelligence.ThescientificmethodofmeasuringintelligenceisthroughstandardizedpsychologicaltestscalledIQtests.IQorintelligencequotient,isthe percentageof intelligenceapersonhas,incomparisontoanormalpersonfromasimilarbackground.AnIQof100isconsiderednormalintelligence.The lesserthe I Q , t h e m ore severe is the level of mentalretardation.BasedonIQ,mentalretardationcanbeclassifiedintodifferentdegreesasfollows:

85-100 Normal70-85 Normalbutnotretarded50-70 Mildmentalretardation35-50 Moderate20-35 SevereBelow20 Profound

A more practical and simpler way of classifying mentalretardationistothinkof only two categories: mild mentalretardationwith an IQ range of 50-70, and severe mentalretardationwithanIQbelow35.ThoughtheconceptofIQisusefulinsomeways,itdoesnotalwaysgivethetruepictureoftheabilitiesoftheperson.Arelatedandmoreappropriatemeasureisthesocialquotient(SQ),inwhichimportanceisgiventotheacquisitionofsociallyrelevantskills.

Degreesofmentalretardation

IQ Category

DigitalCreativity

21

Functioninganddevelopmentofpeoplewithmentalretardation

Table1illustratestheattainmentsofpeoplewithdifferentdegrees of mental retardation in adulthood. I t i s clear tha teventhosewithsevere mentalretardation can becomeatleastpartlyindependentinlookingafterthemselvesthroughpropersupervision,careandtraining.

Table1

Mild 50-70 Literacy +Self-helpskills++Goodspeech++Semi-skilledwork+

Moderate 35-50 Literacy +/-Self-helpskills+Domesticspeech+Unskilledworkwithorwithoutsupervision+

Severe 20-35 Assisted self-helpskills+Minimum speech+Assisted householdchores+

Profound Lessthan20 Speech+/-Self-helpskills+/-

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

Adultattainmentsindifferentdegreesofmentalretardation

Degree IQrange Adultattainments

20

Mental retardation is not mental illness. The majorcharacteristic of mental retardation is delay in mentaldevelopment, whereas the major characteristic of mentalillness 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 alsodevelopmentalillness.

Notallpeoplewithmentalretardationhavethesamelevelofintelligence.ThescientificmethodofmeasuringintelligenceisthroughstandardizedpsychologicaltestscalledIQtests.IQorintelligencequotient,isthe percentageof intelligenceapersonhas,incomparisontoanormalpersonfromasimilarbackground.AnIQof100isconsiderednormalintelligence.The lesserthe I Q , t h e m ore severe is the level of mentalretardation.BasedonIQ,mentalretardationcanbeclassifiedintodifferentdegreesasfollows:

85-100 Normal70-85 Normalbutnotretarded50-70 Mildmentalretardation35-50 Moderate20-35 SevereBelow20 Profound

A more practical and simpler way of classifying mentalretardationistothinkof only two categories: mild mentalretardationwith an IQ range of 50-70, and severe mentalretardationwithanIQbelow35.ThoughtheconceptofIQisusefulinsomeways,itdoesnotalwaysgivethetruepictureoftheabilitiesoftheperson.Arelatedandmoreappropriatemeasureisthesocialquotient(SQ),inwhichimportanceisgiventotheacquisitionofsociallyrelevantskills.

Degreesofmentalretardation

IQ Category

DigitalCreativity

21

Functioninganddevelopmentofpeoplewithmentalretardation

Table1illustratestheattainmentsofpeoplewithdifferentdegrees of mental retardation in adulthood. I t i s clear tha teventhosewithsevere mentalretardation can becomeatleastpartlyindependentinlookingafterthemselvesthroughpropersupervision,careandtraining.

Table1

Mild 50-70 Literacy +Self-helpskills++Goodspeech++Semi-skilledwork+

Moderate 35-50 Literacy +/-Self-helpskills+Domesticspeech+Unskilledworkwithorwithoutsupervision+

Severe 20-35 Assisted self-helpskills+Minimum speech+Assisted householdchores+

Profound Lessthan20 Speech+/-Self-helpskills+/-

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

Adultattainmentsindifferentdegreesofmentalretardation

Degree IQrange Adultattainments

22

entalretardationisacommoncondition.Insurveysinthe general population in Ind iaamongpeopleofa l lages,ithasbeenfoundthataround2%havemental

retardation.Inotherwords,inavillageof1000people,onecanexpecttofindaround20peoplewithmentalretardation.Butifoneestimatestheproblemonlyinchildren,(under18yearsofage)therewil lbeabout3%ofcaseswithmentalretardationamongallchildren under18yearsofageinthesamevillage.Regardinglearningdisability,astudybyUNICEFinSriLankarevealedthat12%ofprimaryschoolchildrenhadlearningdisability.AnotherreportfromSriLankaestimatedthat15%ofschoolgoingchildrensufferedfromsomeformofdisability. A study in children (aged 2-9 years) fromBangladesh found that around 7% had some form ofdisability.Mentalretardation,thesecondmostcommonformof disability, was seen in around 2% of children. SeverementalretardationinBangladeshichildren(2-9yearsold)wasestimated to be around6 per1000, inkeeping with thereportsfromothercountries.In1999,thePlanningDivision,Department of Mental Health of Thailand conducted anepidemiological study on mental health p roblemscountrywideandfoundthattherateofoccurrenceofmentalretardationwas1.3%.

Mildmentalretardationismuchmorecommonthanseverementalretardation,accountingfor65to75%ofallcaseswithmentalretardation.Lookedatinanotherway,inavillageof1000people, of the 20whowillhavementalretardation,about15willhavemildmentalretardationandaboutfivewillhavemoresevereforms.

Ithasbeenfoundthatmentalretardation,especiallymildmentalretardation,ismorecommoninruralareas,andinlow-incomegroups.Reasonslikepooraccesstohealthfacilities,under-stimulation,andunder-nutritioncouldaccountforthisobservation.

SOMEFACTSAND

FIGURES

23

WHATCAUSESMENTAL

RETARDATION ?

hy does mentalretardation occur?As notedearlier,anything thatdamagesandinterfereswiththegrowthand maturation o f the brain can lead to mental

retardation.Therecanbehundredsofsuchcauses.Thismighthappenbefore,duringorafterthebirthofthechild.Whileafewexamples areexplainedbelow,a more detailed listofcausesisgiveninTable2.

MachiPelha

22

entalretardationisacommoncondition.Insurveysinthe general population in Ind iaamongpeopleofa l lages,ithasbeenfoundthataround2%havemental

retardation.Inotherwords,inavillageof1000people,onecanexpecttofindaround20peoplewithmentalretardation.Butifoneestimatestheproblemonlyinchildren,(under18yearsofage)therewil lbeabout3%ofcaseswithmentalretardationamongallchildren under18yearsofageinthesamevillage.Regardinglearningdisability,astudybyUNICEFinSriLankarevealedthat12%ofprimaryschoolchildrenhadlearningdisability.AnotherreportfromSriLankaestimatedthat15%ofschoolgoingchildrensufferedfromsomeformofdisability. A study in children (aged 2-9 years) fromBangladesh found that around 7% had some form ofdisability.Mentalretardation,thesecondmostcommonformof disability, was seen in around 2% of children. SeverementalretardationinBangladeshichildren(2-9yearsold)wasestimated to be around6 per1000, inkeeping with thereportsfromothercountries.In1999,thePlanningDivision,Department of Mental Health of Thailand conducted anepidemiological study on mental health p roblemscountrywideandfoundthattherateofoccurrenceofmentalretardationwas1.3%.

Mildmentalretardationismuchmorecommonthanseverementalretardation,accountingfor65to75%ofallcaseswithmentalretardation.Lookedatinanotherway,inavillageof1000people, of the 20whowillhavementalretardation,about15willhavemildmentalretardationandaboutfivewillhavemoresevereforms.

Ithasbeenfoundthatmentalretardation,especiallymildmentalretardation,ismorecommoninruralareas,andinlow-incomegroups.Reasonslikepooraccesstohealthfacilities,under-stimulation,andunder-nutritioncouldaccountforthisobservation.

SOMEFACTSAND

FIGURES

23

WHATCAUSESMENTAL

RETARDATION ?

hy does mentalretardation occur?As notedearlier,anything thatdamagesandinterfereswiththegrowthand maturation o f the brain can lead to mental

retardation.Therecanbehundredsofsuchcauses.Thismighthappenbefore,duringorafterthebirthofthechild.Whileafewexamples areexplainedbelow,a more detailed listofcausesisgiveninTable2.

MachiPelha

25

Somecommoncausesofmentalretardation

DownsSyndrome:

InheritedMetabolicDisorders:

Maternal Rubella Syndrome:

Thehumanbodyismadeupofbil l ionsofcells. Each cell contains 46 thread-like structures calledchromosomes.InDownssyndrome,becauseofabiologicalerroraroundthetimeofconception,the cells cometohaveoneextra chromosomei.e,47insteadof46chromosomes.Thepresenceofanextrachromosomeinthecellsinterfereswiththe normaldevelopmentofthebrain,leadingtomentalretardation.Downssyndromeisacommoncauseofmentalretardation. It is often possible torecognize people withDownssyndromebytheirfacialappearance,characterizedbyup-slantingeyesandflatbridgeofthenose.Downssyndromeoccursin about1in800newbornbabies.Eventhoughitisageneticdisorder,Downssyndromeismostoftennotinheritedandcanoccurinanychild.However,itismorelikelytooccurwhentheageofthemotheratthetimeofthebirthofthechildisover35years.

Eventhoughpersonswith Downssyndrome havementalretardation,theypossessgoodsocialandinteractionalskills.

Chromosomesinthehumancellscontaingeneswhichcontrolgrowthandmaturationofthebrain.Someoftheseareresponsibleforchemical(metabolic)reactions,whichareessentialforbraingrowth.Ifsuchageneis abnormal, it can lead to derangement of metabolicreactions and thereby cause mental retardation.Phenylketonuria is one such condition. Babies withphenylketonuria,inadditiontomentalretardation,have light-coloured hair and skin, a small head, and are prone toconvulsions.

Rubellaor German measles isgenerally a harmless viral infection in adults, producingsymptoms of mild fever, rash, andenlargement of lymphnodes. But when itoccurs for thefirst time during earlypregnancy, the virusspreads t o t he baby growing in themother's wombandcausesextensivedamage.Whensuchababyisborn,itislikelytohavementalretardationandvisualimpairment.

Mothersolderthan35yearsofagemay

considerantenatalgeneticscreeningfordiagnosisofDowns

syndromeintheunbornchild.

Detectionofphenylketonuriaatbirth

andproperdietarytreatmentcanpreventbraindamageandhelp

babiestogrownormally.

Maternalrubellasyndromeispreventablebyimmunizingchildrenwithrubellavaccination

(aspartofMMRvaccination).

Table2Causesofmentalretardation

Prenatal

Postnatal

(causesbeforebirth) PraderWilisyndrome,Klinefelterssyndrome

Single gene disorders ,suchasgalactosemia*,phenylketonuria*,mucopolysaccaridosesHypothyroidism*,Tay-Sachsdisease

syndromessuchastuberoussclerosis,andneurofibromatosis

suchasgeneticmicrocephaly,hydrocephalusandmyelo-meningocele*

dysmorphicsyndromes,suchasLaurenceMoonBiedlsyndrome

Other conditionsoforigin

environmentalinfluences deficiencyinpregnancy

such asalcohol(maternalalcoholsyndrome),nicotine,andcocaine during earlypregnancy

tootherharmfulchemicalssuchaspollutants,heavy metals,abortifacients, andharmfulmedicationssuchasthalidomide,phenytoinandwarfarinsodiuminearlypregnancy

suchasrubella*,syphillis*,toxoplasmosis,cytomegalovirusandHIV

suchasexcessiveexposure toradiation*,andRhincompatibility*

ofbirth) diseaseanddiabetesdysfunction

Labour(duringdelivery) Severeprematurity,verylow birthweight,birth

Difficultand/orcomplicateddelivery*Birth trauma*

Neonatal Septicemia,severejaundice*,

(ininfancy

andchildhood) Head injury*Chronicleadexposure*

Severeand prolonged malnutrition*Grossunderstimulation*

Chromosomaldisorders Downssyndrome*,FragileXsyndrome,

RubisteinTabisyndromegenetic DeLangesyndrome

Adversematernal / ,suchasiodinedeficiencyandfolicacid

Thirdtrimester(late(aroundthetime pregnancy) inmothersuchas heart andkidney

asphyxia

hypoglycemia(firstfourweeksoflife)

Braininfectionssuchastuberculosis,Japaneseencephalitis,and bacterialmeningitis

Inbornerrorsofmetabolism

Neuro-cutaneous

Brain malformations

Other

Severemalnutrition*Using substances*

Exposure*

Maternalinfections

Others

Placental

Deficiencies*

Diseases*Perinatal Complicationsofpregnancy*

Category Type Examples

24

Note:conditionsmarkedwithanasteriskaredefinitelyorpotentiallypreventable.

25

Somecommoncausesofmentalretardation

DownsSyndrome:

InheritedMetabolicDisorders:

Maternal Rubella Syndrome:

Thehumanbodyismadeupofbil l ionsofcells. Each cell contains 46 thread-like structures calledchromosomes.InDownssyndrome,becauseofabiologicalerroraroundthetimeofconception,the cells cometohaveoneextra chromosomei.e,47insteadof46chromosomes.Thepresenceofanextrachromosomeinthecellsinterfereswiththe normaldevelopmentofthebrain,leadingtomentalretardation.Downssyndromeisacommoncauseofmentalretardation. It is often possible torecognize people withDownssyndromebytheirfacialappearance,characterizedbyup-slantingeyesandflatbridgeofthenose.Downssyndromeoccursin about1in800newbornbabies.Eventhoughitisageneticdisorder,Downssyndromeismostoftennotinheritedandcanoccurinanychild.However,itismorelikelytooccurwhentheageofthemotheratthetimeofthebirthofthechildisover35years.

Eventhoughpersonswith Downssyndrome havementalretardation,theypossessgoodsocialandinteractionalskills.

Chromosomesinthehumancellscontaingeneswhichcontrolgrowthandmaturationofthebrain.Someoftheseareresponsibleforchemical(metabolic)reactions,whichareessentialforbraingrowth.Ifsuchageneis abnormal, it can lead to derangement of metabolicreactions and thereby cause mental retardation.Phenylketonuria is one such condition. Babies withphenylketonuria,inadditiontomentalretardation,have light-coloured hair and skin, a small head, and are prone toconvulsions.

Rubellaor German measles isgenerally a harmless viral infection in adults, producingsymptoms of mild fever, rash, andenlargement of lymphnodes. But when itoccurs for thefirst time during earlypregnancy, the virusspreads t o t he baby growing in themother's wombandcausesextensivedamage.Whensuchababyisborn,itislikelytohavementalretardationandvisualimpairment.

Mothersolderthan35yearsofagemay

considerantenatalgeneticscreeningfordiagnosisofDowns

syndromeintheunbornchild.

Detectionofphenylketonuriaatbirth

andproperdietarytreatmentcanpreventbraindamageandhelp

babiestogrownormally.

Maternalrubellasyndromeispreventablebyimmunizingchildrenwithrubellavaccination

(aspartofMMRvaccination).

Table2Causesofmentalretardation

Prenatal

Postnatal

(causesbeforebirth) PraderWilisyndrome,Klinefelterssyndrome

Single gene disorders ,suchasgalactosemia*,phenylketonuria*,mucopolysaccaridosesHypothyroidism*,Tay-Sachsdisease

syndromessuchastuberoussclerosis,andneurofibromatosis

suchasgeneticmicrocephaly,hydrocephalusandmyelo-meningocele*

dysmorphicsyndromes,suchasLaurenceMoonBiedlsyndrome

Other conditionsoforigin

environmentalinfluences deficiencyinpregnancy

such asalcohol(maternalalcoholsyndrome),nicotine,andcocaine during earlypregnancy

tootherharmfulchemicalssuchaspollutants,heavy metals,abortifacients, andharmfulmedicationssuchasthalidomide,phenytoinandwarfarinsodiuminearlypregnancy

suchasrubella*,syphillis*,toxoplasmosis,cytomegalovirusandHIV

suchasexcessiveexposure toradiation*,andRhincompatibility*

ofbirth) diseaseanddiabetesdysfunction

Labour(duringdelivery) Severeprematurity,verylow birthweight,birth

Difficultand/orcomplicateddelivery*Birth trauma*

Neonatal Septicemia,severejaundice*,

(ininfancy

andchildhood) Head injury*Chronicleadexposure*

Severeand prolonged malnutrition*Grossunderstimulation*

Chromosomaldisorders Downssyndrome*,FragileXsyndrome,

RubisteinTabisyndromegenetic DeLangesyndrome

Adversematernal / ,suchasiodinedeficiencyandfolicacid

Thirdtrimester(late(aroundthetime pregnancy) inmothersuchas heart andkidney

asphyxia

hypoglycemia(firstfourweeksoflife)

Braininfectionssuchastuberculosis,Japaneseencephalitis,and bacterialmeningitis

Inbornerrorsofmetabolism

Neuro-cutaneous

Brain malformations

Other

Severemalnutrition*Using substances*

Exposure*

Maternalinfections

Others

Placental

Deficiencies*

Diseases*Perinatal Complicationsofpregnancy*

Category Type Examples

24

Note:conditionsmarkedwithanasteriskaredefinitelyorpotentiallypreventable.

26

IodineDeficiencyDisorder(cretinism):

Difficult/ComplicatedDelivery:

Brain Infection (Brain Fever):

Iodineisessentialforthenormaldevelopment of unborn babies. Lack of adequateavailabilityofiodinefromthemotherrestrictsthegrowthofthe brain of the foetus, and leads to a condition calledhypothyroidism. Babies with this problem have mentalretardation,hearingimpairmentanddwarfism. In addition,theymayhavelethargy,coarsenessoffacialfeatures,roughand dry skin, feeding problems, constipation, coldextremities,andneckswellingbecauseofenlargementofthethyroidgland.Asevereformofthiscondition,inwhichallthefeaturesmentionedareverypronounced,iscalledcretinism.

Iodineoccursnaturallyin food.Butinsomeplaces,thesoilandthefoodaredeficientiniodine.Insuchplaces,naturally,apregnantwoman'sintakeofiodineislessandthereforetheirinfants would also bedeficient in iodine and manifesthypothyroidism.IodinedeficiencyisprevalentinlargeareasinsomeMemberCountriesofSEAR.

Tilltheyareborn,babiesreceivetheirsupplyoffoodandoxygenfromthemother.Immediatelyafterbirth,babiesbegintobreatheontheirown.Normally,thistransitionoccurssmoothly.When,foranyreason,thedeliverybecomesdifficult,prolonged,orcomplicated,oxygensupplyto thebabyisdiminished.Asthebrainisverysensitivetooxygendeprivation, thiscanresultinbraindamage.This iscalled birth asphyxia.Such babies may have problems indevelopmentsuchasmentalretardationorcerebralpalsy.

An important cause ofmentalretardationafterbirthisbraininfectionscausedbybacteriaorviruses.Inthiscondition,childrenwhoareotherwisenormal,suddenlydevelopfever,headache,vomiting,convulsionsandlossofconsciousness.Ifthisinfectionissevere,theremaybeirreversiblebraindamageleadingtomentalretardation.Suchchildren,whentheyrecoverfromacuteillness,arenoticedtohave lost manyskillswhichtheyhadlearntearlier.Youngchildrenare more a t risk for brain fever inregionswhereJapaneseencephalitisandtuberculosisarecommon.

Iodinedeficiencydisordersarepreventable

byuniversaliodizationofsalt.

27

Nutrition and Mental Development: A balanced diet rich incalories, protein, vitamins and minerals is required forpregnant women and young children for normal braindevelopment.Lack of a dequate diet can have direct andindirecteffectsonbraindevelopmentandtherebyincreasetheriskofsubnormaldevelopment.

Studieshaveshownthatbirthweightisanimportantindicatorofthefuturehealthofthebaby.Ababywithlowbirthweightismore likely tohave problemsinmental development. Theheight and weight ofwould-be mothers andthe extent ofweightgaininpregnancyareimportantfactorsdeterminingbirthweight.

Propernutritionofthegirlchildandgood

nutritionforpregnantwomancanpreventmanydevelopmental

problemsintheirbabies.

Yogeeta

26

IodineDeficiencyDisorder(cretinism):

Difficult/ComplicatedDelivery:

Brain Infection (Brain Fever):

Iodineisessentialforthenormaldevelopment of unborn babies. Lack of adequateavailabilityofiodinefromthemotherrestrictsthegrowthofthe brain of the foetus, and leads to a condition calledhypothyroidism. Babies with this problem have mentalretardation,hearingimpairmentanddwarfism. In addition,theymayhavelethargy,coarsenessoffacialfeatures,roughand dry skin, feeding problems, constipation, coldextremities,andneckswellingbecauseofenlargementofthethyroidgland.Asevereformofthiscondition,inwhichallthefeaturesmentionedareverypronounced,iscalledcretinism.

Iodineoccursnaturallyin food.Butinsomeplaces,thesoilandthefoodaredeficientiniodine.Insuchplaces,naturally,apregnantwoman'sintakeofiodineislessandthereforetheirinfants would also bedeficient in iodine and manifesthypothyroidism.IodinedeficiencyisprevalentinlargeareasinsomeMemberCountriesofSEAR.

Tilltheyareborn,babiesreceivetheirsupplyoffoodandoxygenfromthemother.Immediatelyafterbirth,babiesbegintobreatheontheirown.Normally,thistransitionoccurssmoothly.When,foranyreason,thedeliverybecomesdifficult,prolonged,orcomplicated,oxygensupplyto thebabyisdiminished.Asthebrainisverysensitivetooxygendeprivation, thiscanresultinbraindamage.This iscalled birth asphyxia.Such babies may have problems indevelopmentsuchasmentalretardationorcerebralpalsy.

An important cause ofmentalretardationafterbirthisbraininfectionscausedbybacteriaorviruses.Inthiscondition,childrenwhoareotherwisenormal,suddenlydevelopfever,headache,vomiting,convulsionsandlossofconsciousness.Ifthisinfectionissevere,theremaybeirreversiblebraindamageleadingtomentalretardation.Suchchildren,whentheyrecoverfromacuteillness,arenoticedtohave lost manyskillswhichtheyhadlearntearlier.Youngchildrenare more a t risk for brain fever inregionswhereJapaneseencephalitisandtuberculosisarecommon.

Iodinedeficiencydisordersarepreventable

byuniversaliodizationofsalt.

27

Nutrition and Mental Development: A balanced diet rich incalories, protein, vitamins and minerals is required forpregnant women and young children for normal braindevelopment.Lack of a dequate diet can have direct andindirecteffectsonbraindevelopmentandtherebyincreasetheriskofsubnormaldevelopment.

Studieshaveshownthatbirthweightisanimportantindicatorofthefuturehealthofthebaby.Ababywithlowbirthweightismore likely tohave problemsinmental development. Theheight and weight ofwould-be mothers andthe extent ofweightgaininpregnancyareimportantfactorsdeterminingbirthweight.

Propernutritionofthegirlchildandgood

nutritionforpregnantwomancanpreventmanydevelopmental

problemsintheirbabies.

Yogeeta

29

Individualandfamilyapproaches

Mentalretardation isgeneral lya life-longcondition a n d i tcannotbe'cured'withmedicaltreatment.Giventhisfact,whatcanbedoneandwhatshouldbetheaimsandobjectivesinproviding care for these individuals? The followingconsiderationsshouldbekeptinmindtoguideactions.

Scientific research has shown that byprovidingtherightkindofsupportandservices,itispossibletoensure thatthosewithmentalretardationcanlivehealthyand relatively independent lives. These services comprisemanyareassuchashealthcare,earlyintervention,education,vocationaltraining,andsoon.Studieshavealsoshownthatconsiderableillhealth, physicalorbehavioural,inpeoplewithmentalretardationiscausedbylackofappropriatecareandishencepreventable.

Ascitizensofacivilizedsociety,itistherightofpeople with mental retardation to lead their l ives withrespect and dignity. I t i sposs ib le toach ieveth isgoa lbybringing about positive changes in societal awareness,attitudesandbeliefsaboutthiscondition.

Very often, the problem of mentalretardationisinseparablefromtheproblems faced b y t h efamilies. It is clear that organized se rvices are definitelyneededforfamiliestoadaptwellandfacethesituationwithconfidenceandtheleastamountofstress.

To achieve these aims, professionals from many fields,families, governmentalandnongovernmentalorganizations,andsocietyasawholehavetoworktogether.Thefollowingprinciples should help in guiding and directing thedevelopmentofappropriateservices:

Thisconcept,whichoriginatedintheScandinaviancountries,hashadapowerfulinfluence.Insimpleterms,normalizationmeansensuringthatthesameenvironmentalconditionsofeverydaylifeareavailabletopeoplewithmentalretardationastheyareforanybodyelse.Italsomeansprovidingthemwithfacilitiestoenabledevelopmentoftheirfullpotential.

Scientific evidence:

Humanisticneed:

Family perspective:

Normalization

WHATCANBEDONE?

28

Commonhealthproblemsassociatedwithmentalretardation

Many children and adults with mental retardation areotherwise physicallyandmentallyhealthy,exceptthattheyhavelower intelligence.Severalothers,however,frequentlyhave other problems. The common health problemsassociatedwithmentalretardationareasfollows:

Symptomslikerestlessness(continuouslymoving around; unable to sit in one place), poorconcentration, impulsiveness, temper tantrums, irritabilityandcrying are common. Other disturbing behaviour, likeaggression,self-injurious behaviour(such asheadbanging)and repetitive rocking may also be seen. When suchbehaviour issevereandpersistent,itcanbecomeamajorsourceofstressforfamilies.Therefore,attentionshouldbepaidtoreducesuchbehaviourwhileprovidingtreatmentandcare.

About25%ofpeoplewithmentalretardationgetconvulsions.Manytypesofconvulsionscanoccurinvolvingthewholebody,oronlyonehalfofthebody,orsuddensinglejerks leading to a fall.Convulsions, although alarming towatch,canbeeasilycontrolledwithpropermedication.

Difficulties inseeing and hearing arepresentin about5-10%ofpersonswithmentalretardation.Sometimes theseproblemscanberesolvedbyusinghearingaidsorglasses,orundergoingsurgeryforcataract.

Asnoted earlier, other developmentaldisabilities,such ascerebralpalsy,speechproblemsandautism,canoccuralongwithmental retardation. Persons withmanydisabilities, ormultipledisabilities,poseabigchallengeintermsofprovidingcare.

Behaviourproblems:

Convulsions:

Sensory impairments:

DigitalCreativity

29

Individualandfamilyapproaches

Mentalretardation isgeneral lya life-longcondition a n d i tcannotbe'cured'withmedicaltreatment.Giventhisfact,whatcanbedoneandwhatshouldbetheaimsandobjectivesinproviding care for these individuals? The followingconsiderationsshouldbekeptinmindtoguideactions.

Scientific research has shown that byprovidingtherightkindofsupportandservices,itispossibletoensure thatthosewithmentalretardationcanlivehealthyand relatively independent lives. These services comprisemanyareassuchashealthcare,earlyintervention,education,vocationaltraining,andsoon.Studieshavealsoshownthatconsiderableillhealth, physicalorbehavioural,inpeoplewithmentalretardationiscausedbylackofappropriatecareandishencepreventable.

Ascitizensofacivilizedsociety,itistherightofpeople with mental retardation to lead their l ives withrespect and dignity. I t i sposs ib le toach ieveth isgoa lbybringing about positive changes in societal awareness,attitudesandbeliefsaboutthiscondition.

Very often, the problem of mentalretardationisinseparablefromtheproblems faced b y t h efamilies. It is clear that organized se rvices are definitelyneededforfamiliestoadaptwellandfacethesituationwithconfidenceandtheleastamountofstress.

To achieve these aims, professionals from many fields,families, governmentalandnongovernmentalorganizations,andsocietyasawholehavetoworktogether.Thefollowingprinciples should help in guiding and directing thedevelopmentofappropriateservices:

Thisconcept,whichoriginatedintheScandinaviancountries,hashadapowerfulinfluence.Insimpleterms,normalizationmeansensuringthatthesameenvironmentalconditionsofeverydaylifeareavailabletopeoplewithmentalretardationastheyareforanybodyelse.Italsomeansprovidingthemwithfacilitiestoenabledevelopmentoftheirfullpotential.

Scientific evidence:

Humanisticneed:

Family perspective:

Normalization

WHATCANBEDONE?

28

Commonhealthproblemsassociatedwithmentalretardation

Many children and adults with mental retardation areotherwise physicallyandmentallyhealthy,exceptthattheyhavelower intelligence.Severalothers,however,frequentlyhave other problems. The common health problemsassociatedwithmentalretardationareasfollows:

Symptomslikerestlessness(continuouslymoving around; unable to sit in one place), poorconcentration, impulsiveness, temper tantrums, irritabilityandcrying are common. Other disturbing behaviour, likeaggression,self-injurious behaviour(such asheadbanging)and repetitive rocking may also be seen. When suchbehaviour issevereandpersistent,itcanbecomeamajorsourceofstressforfamilies.Therefore,attentionshouldbepaidtoreducesuchbehaviourwhileprovidingtreatmentandcare.

About25%ofpeoplewithmentalretardationgetconvulsions.Manytypesofconvulsionscanoccurinvolvingthewholebody,oronlyonehalfofthebody,orsuddensinglejerks leading to a fall.Convulsions, although alarming towatch,canbeeasilycontrolledwithpropermedication.

Difficulties inseeing and hearing arepresentin about5-10%ofpersonswithmentalretardation.Sometimes theseproblemscanberesolvedbyusinghearingaidsorglasses,orundergoingsurgeryforcataract.

Asnoted earlier, other developmentaldisabilities,such ascerebralpalsy,speechproblemsandautism,canoccuralongwithmental retardation. Persons withmanydisabilities, ormultipledisabilities,poseabigchallengeintermsofprovidingcare.

Behaviourproblems:

Convulsions:

Sensory impairments:

DigitalCreativity

31

Servicesforindividualswithmentalretardation

MedicalandPsychological(clinical)Services

Thefirst requirementis forappropriatefacilitiesfora goodmedical/healthevaluation and accurate diagnosis.Doctorsshould b e i n a p ositiontorecognizeandmanagetreatabledisorderssuchashypothyroidism.Associatedproblemssuchas convulsions, sensory impairments and behaviourproblems,canbecorrectedorcontrolledwithpropermedicalattention.It isdesirable to havefacilitiesfor psychologicalassessmentofstrengthsandweaknessesinthechildwhichcanformthebasisforfuturetraining.

Adequateparentalcounsellingintheinitialstagesisessential.Doctors,nurses,psychologistsandsocialworkerscanmakeabigdifferencetoparentsbycorrectlyexplainingtheconditionandthe optionsfortreatmentaswell asbyclarifying theirdoubts. Parental counselling also involves providingemotionalsupportandguidance,andstrengtheningmorale.Oncethe parentsgetagraspofthecondition,theyneedtolearn appropriateways of rearing and training the child.Parents continueto need suchassistance, guidance,andsupportasthechildgrowsup,especiallyduringadolescence,earlyadulthoodandduringperiodsofcrisis.

There are many claims that some drugs and herbalpreparations can improveintelligence. B u t n o d rugsoranyothertreatmentcancompletelycurementalretardation.

Itisimportanttoensurethatparentsdonotspendalotoftheirvaluable moneyandtimeinpursuingtreatmentsthatareofdoubtfulornovalue.

Thereisnoknownmedicine,herbalpreparationor

substanceto‘cure’mentalretardation.

Integration

Home-basedCarewithParentsasPartners

Community-basedApproaches

Individuals with mental retardation should become anintegral part of society; they should not be isolated,segregatedordiscriminatedagainstinanyfashion.

Researchhasshownthatthebestplaceforchildrenwithmentalretardationtogrowinistheirownfamilies,wheretheycan be nurtured with appropriate stimulation. Therefore,services should be organized so that the families aresupported,strengthenedandempoweredtolookaftertheiraffectedmember.Familieshavedifferentneedsatdifferentstagesinthelifecycleofitsmembers(suchaschildhood,adolescence,andadulthood);thisshouldberecognizedandattempts made to fulfil these needs. I t s h o u l d also berecognizedthatfamiliesarenotjustrecipientsofservicesbutcare-providers as well.Inotherwords,theyarepartnersincare.

Very often, servicestendtobeconcentratedinwell-to-dourban localities. To overcome this lop-sided approach, acommunity orientation isnecessary, sothatservicesareavailabletolargesectionsofsocietyintheirownvicinity.Noprogramme is likely to succeed without communityinvolvementandparticipation.

30

ApurbaBhattacharya

31

Servicesforindividualswithmentalretardation

MedicalandPsychological(clinical)Services

Thefirst requirementis forappropriatefacilitiesfora goodmedical/healthevaluation and accurate diagnosis.Doctorsshould b e i n a p ositiontorecognizeandmanagetreatabledisorderssuchashypothyroidism.Associatedproblemssuchas convulsions, sensory impairments and behaviourproblems,canbecorrectedorcontrolledwithpropermedicalattention.It isdesirable to havefacilitiesfor psychologicalassessmentofstrengthsandweaknessesinthechildwhichcanformthebasisforfuturetraining.

Adequateparentalcounsellingintheinitialstagesisessential.Doctors,nurses,psychologistsandsocialworkerscanmakeabigdifferencetoparentsbycorrectlyexplainingtheconditionandthe optionsfortreatmentaswell asbyclarifying theirdoubts. Parental counselling also involves providingemotionalsupportandguidance,andstrengtheningmorale.Oncethe parentsgetagraspofthecondition,theyneedtolearn appropriateways of rearing and training the child.Parents continueto need suchassistance, guidance,andsupportasthechildgrowsup,especiallyduringadolescence,earlyadulthoodandduringperiodsofcrisis.

There are many claims that some drugs and herbalpreparations can improveintelligence. B u t n o d rugsoranyothertreatmentcancompletelycurementalretardation.

Itisimportanttoensurethatparentsdonotspendalotoftheirvaluable moneyandtimeinpursuingtreatmentsthatareofdoubtfulornovalue.

Thereisnoknownmedicine,herbalpreparationor

substanceto‘cure’mentalretardation.

Integration

Home-basedCarewithParentsasPartners

Community-basedApproaches

Individuals with mental retardation should become anintegral part of society; they should not be isolated,segregatedordiscriminatedagainstinanyfashion.

Researchhasshownthatthebestplaceforchildrenwithmentalretardationtogrowinistheirownfamilies,wheretheycan be nurtured with appropriate stimulation. Therefore,services should be organized so that the families aresupported,strengthenedandempoweredtolookaftertheiraffectedmember.Familieshavedifferentneedsatdifferentstagesinthelifecycleofitsmembers(suchaschildhood,adolescence,andadulthood);thisshouldberecognizedandattempts made to fulfil these needs. I t s h o u l d also berecognizedthatfamiliesarenotjustrecipientsofservicesbutcare-providers as well.Inotherwords,theyarepartnersincare.

Very often, servicestendtobeconcentratedinwell-to-dourban localities. To overcome this lop-sided approach, acommunity orientation isnecessary, sothatservicesareavailabletolargesectionsofsocietyintheirownvicinity.Noprogramme is likely to succeed without communityinvolvementandparticipation.

30

ApurbaBhattacharya

33

Parentsshouldbealert...

!

!

!

!

!

Babieswhoarepremature,orhaveabirthweightoflessthan2kg.Thosewhohadadifficultneonatalperiodareatriskfordevelopingmentalretardation;theirdevelopmentneedsclosemonitoring.

Babieswhoareslowinreachingearlymilestonesofdevelopment,suchasholdingupneck(normal =3-4months),socialsmile(normal=3-4months),sittingwithout support (normal = 7-8months),walking without support (normal = one year 3months), sayingafewwords(normal=1year 6months) andsocialgesturessuchas" "(normal=1year6months).

Repeatedconvulsionsinearlyinfancy.

Babieswho areinactive,slowtoreactandlethargic.

Childrenwhoaredependentforself-careactivitiessuchaseating,dressingandtoiletcontrolevenbytheageof4-5years.

Babieswhoareatriskordetectedwithdelayeddevelopmentshould receive sensory-motor stimulation. These aretechniquesbywhichparentsencourageandteachbabiestouseanddeveloptheirsensory(vision,hearingandtouch)andmotor (grasping, reaching, manipulating, and transferring)faculties.Techniquesincludeactivelyengagingwiththechildbycaressing,talking,showingbrightobjects,playingtoelicitlaughter, tickling, gentle massaging, bouncing, putting thechildindifferent positions andplaces,usingtoysand playmaterialstoarousethechild'sinterest,guidingthehandstomanipulatethingsandsoon.Suchstimulationisnecessaryfornormal development. Children with developmental delayneed it all the more, because they are prone tounderstimulation.

Manymanualsandguideshavebeendevelopedtocarryoutearly stimulation, for instance, Portage Guide to EarlyStimulation and PreschoolIntervention forDevelopmentallyDelayed Children(publishedbytheNationalInstitutefortheMentallyHandicapped,Secunderabad,India).SomeofthesemodelshavebeensuccessfullyadaptedtoSEARconditions.

Namaste

32

EarlyDetectionandEarlyStimulation

Many well-conducted research studieshaveclearlyshownthatdetectingmentalretardationatanearlystage,thatis,ininfancy,andprovidingalovingandstimulatingenvironmenthelps t hese children todevelopbetterandpreventsmanycomplications.

Somemedicalconditionsassociatedwithmentalretardationcanbedetectedatbirthitself.Itisalsopossibletodefineagroupofbabieswhoare“atrisk”ofhavingagreaterchanceofdevelopingmentalretardationastheygrowup.Thesearethebabiesbornprematurely,orwithalowbirthweight(lessthan2kg),orwhohavesufferedbirthasphyxia,orthosewhohavehadaseriousillnessintheneonatalperiod.Awell-recognizedmethodforearlydetectionistofollowthedevelopmentofallthebabiesfrombirthandobservewhethertheyarelaggingbehindconsistently.Byandlarge,mostbabieswithseverementalretardation canberecognizedbytheage of6-12months.Mildmentalretardationusuallybecomesevidentbythe age o f two years. Standardized methods for earlydetectionofmentalretardationarenowavailable,andcanbeadaptedto any culturewith proper modifications. Once ababyisdetectedorsuspectedtoha vementalretardation,itisnecessarytoprovideappropriatestimulationforappropriatedevelopment.

Yogeeta

33

Parentsshouldbealert...

!

!

!

!

!

Babieswhoarepremature,orhaveabirthweightoflessthan2kg.Thosewhohadadifficultneonatalperiodareatriskfordevelopingmentalretardation;theirdevelopmentneedsclosemonitoring.

Babieswhoareslowinreachingearlymilestonesofdevelopment,suchasholdingupneck(normal =3-4months),socialsmile(normal=3-4months),sittingwithout support (normal = 7-8months),walking without support (normal = one year 3months), sayingafewwords(normal=1year 6months) andsocialgesturessuchas" "(normal=1year6months).

Repeatedconvulsionsinearlyinfancy.

Babieswho areinactive,slowtoreactandlethargic.

Childrenwhoaredependentforself-careactivitiessuchaseating,dressingandtoiletcontrolevenbytheageof4-5years.

Babieswhoareatriskordetectedwithdelayeddevelopmentshould receive sensory-motor stimulation. These aretechniquesbywhichparentsencourageandteachbabiestouseanddeveloptheirsensory(vision,hearingandtouch)andmotor (grasping, reaching, manipulating, and transferring)faculties.Techniquesincludeactivelyengagingwiththechildbycaressing,talking,showingbrightobjects,playingtoelicitlaughter, tickling, gentle massaging, bouncing, putting thechildindifferent positions andplaces,usingtoysand playmaterialstoarousethechild'sinterest,guidingthehandstomanipulatethingsandsoon.Suchstimulationisnecessaryfornormal development. Children with developmental delayneed it all the more, because they are prone tounderstimulation.

Manymanualsandguideshavebeendevelopedtocarryoutearly stimulation, for instance, Portage Guide to EarlyStimulation and PreschoolIntervention forDevelopmentallyDelayed Children(publishedbytheNationalInstitutefortheMentallyHandicapped,Secunderabad,India).SomeofthesemodelshavebeensuccessfullyadaptedtoSEARconditions.

Namaste

32

EarlyDetectionandEarlyStimulation

Many well-conducted research studieshaveclearlyshownthatdetectingmentalretardationatanearlystage,thatis,ininfancy,andprovidingalovingandstimulatingenvironmenthelps t hese children todevelopbetterandpreventsmanycomplications.

Somemedicalconditionsassociatedwithmentalretardationcanbedetectedatbirthitself.Itisalsopossibletodefineagroupofbabieswhoare“atrisk”ofhavingagreaterchanceofdevelopingmentalretardationastheygrowup.Thesearethebabiesbornprematurely,orwithalowbirthweight(lessthan2kg),orwhohavesufferedbirthasphyxia,orthosewhohavehadaseriousillnessintheneonatalperiod.Awell-recognizedmethodforearlydetectionistofollowthedevelopmentofallthebabiesfrombirthandobservewhethertheyarelaggingbehindconsistently.Byandlarge,mostbabieswithseverementalretardation canberecognizedbytheage of6-12months.Mildmentalretardationusuallybecomesevidentbythe age o f two years. Standardized methods for earlydetectionofmentalretardationarenowavailable,andcanbeadaptedto any culturewith proper modifications. Once ababyisdetectedorsuspectedtoha vementalretardation,itisnecessarytoprovideappropriatestimulationforappropriatedevelopment.

Yogeeta

35

TraininginSelf-help,SocialandPracticalSkills

Normalchildrenlearntheskillsofdailylivingsuchasfeeding,dressing, toilet training, and socialskills such asplaying,mixing,andinteractingwithotherseasily,bywatchingothersandwithsomeadultguidanceandteaching.Butchildrenwithmentalretardationoftendonotlearntheseskillsontheirown.Throughsystematiceffortsandusingpropertechniques,itispossible to teach andtrainthemintheseskil ls.Behaviourmodification techniques are very useful and effective inteaching.Theseinclude:

Paying attention,praisingthechildandgivingsomematerialrewardsuchassweets, candies or toys whenever the child showsdesirable behaviour or makes an attempt to learn,increases thechild'smotivation tolearnappropriate andnewbehaviour.

Showing t h e c h i l d h o w a particular activity isdone andencouragingthechildtoinitiatetheactivityisapowerfulmethodofteachingnewbehaviour.Thisisbetterthanjustorallytellingorinstructingthechild.

Thismeans teaching thesimplifiedversion o f acomplex activity first and then graduallymakingitmoreandmorecomplexatapacecomfortabletothechild.

Anactivity,suchasdressingskills,canbebrokenupintoseveralsmall,sequentialsteps.Thechildcanbetaughttheseskillsstep-by-step.Veryoften,back-chainingorteachingthelaststepfirstandthengoingbackwardsismoreeffective.

Ifthechildcannotlearnbymodelling,heorshe can be taught the activityby holding hands andshowingthemhow the task is done.Aftermany suchrepetitions, the physical guidance can be slowlywithdrawn so that the child learns to do the taskindependently.

Modern researchhasclearlyestablishedtheutilityof thesebehaviouraltechniquesinimpartingmanykindsofskills.

!

!

!

!

!

Rewarding or positive reinforcement:

Modelling:

Shaping:

Chaining:

Physicalguidance:

34

Earlyintervention:asuccessfulventure…

Onegoodexampleofearlyinterventionforat-riskbabiesistheUNICEF-fundedprojectconductedbytheAndhraPradeshAssociationfortheWelfareofMentallyRetarded,inHyderabad,India.Allbabiesborninalargehospitalwerescreenedfor riskfactorsfordelayeddevelopment, suchas very low birth weight, birthasphyxia, birth trauma,persistent jaundice,convulsionsandcongenitalanomalies.Interventionwascarriedoutfor410babieswhowereathighrisk.Mostofthembelongedtoasocioeconomicallylowclass.Interventionwasconductedathome,utilizingthe“homevisitor”model,alongthelines of the Portage Project. During their weekly visits, the trained home visitorseducated thefamily members in child health care, provided supportandguidance,taughtthemtheskillsofearlystimulation,andhelpedthemtoaccessmedicalservices.Theresults attheendofthreeyearswereveryposit ive.Only6.8%hadpersistentdevelopmentaldelay,comparedto12%inagroupofchildreninwhominterventionwasnotcarriedoutforavarietyofreasons.

DigitalCreativity

35

TraininginSelf-help,SocialandPracticalSkills

Normalchildrenlearntheskillsofdailylivingsuchasfeeding,dressing, toilet training, and socialskills such asplaying,mixing,andinteractingwithotherseasily,bywatchingothersandwithsomeadultguidanceandteaching.Butchildrenwithmentalretardationoftendonotlearntheseskillsontheirown.Throughsystematiceffortsandusingpropertechniques,itispossible to teach andtrainthemintheseskil ls.Behaviourmodification techniques are very useful and effective inteaching.Theseinclude:

Paying attention,praisingthechildandgivingsomematerialrewardsuchassweets, candies or toys whenever the child showsdesirable behaviour or makes an attempt to learn,increases thechild'smotivation tolearnappropriate andnewbehaviour.

Showing t h e c h i l d h o w a particular activity isdone andencouragingthechildtoinitiatetheactivityisapowerfulmethodofteachingnewbehaviour.Thisisbetterthanjustorallytellingorinstructingthechild.

Thismeans teaching thesimplifiedversion o f acomplex activity first and then graduallymakingitmoreandmorecomplexatapacecomfortabletothechild.

Anactivity,suchasdressingskills,canbebrokenupintoseveralsmall,sequentialsteps.Thechildcanbetaughttheseskillsstep-by-step.Veryoften,back-chainingorteachingthelaststepfirstandthengoingbackwardsismoreeffective.

Ifthechildcannotlearnbymodelling,heorshe can be taught the activityby holding hands andshowingthemhow the task is done.Aftermany suchrepetitions, the physical guidance can be slowlywithdrawn so that the child learns to do the taskindependently.

Modern researchhasclearlyestablishedtheutilityof thesebehaviouraltechniquesinimpartingmanykindsofskills.

!

!

!

!

!

Rewarding or positive reinforcement:

Modelling:

Shaping:

Chaining:

Physicalguidance:

34

Earlyintervention:asuccessfulventure…

Onegoodexampleofearlyinterventionforat-riskbabiesistheUNICEF-fundedprojectconductedbytheAndhraPradeshAssociationfortheWelfareofMentallyRetarded,inHyderabad,India.Allbabiesborninalargehospitalwerescreenedfor riskfactorsfordelayeddevelopment, suchas very low birth weight, birthasphyxia, birth trauma,persistent jaundice,convulsionsandcongenitalanomalies.Interventionwascarriedoutfor410babieswhowereathighrisk.Mostofthembelongedtoasocioeconomicallylowclass.Interventionwasconductedathome,utilizingthe“homevisitor”model,alongthelines of the Portage Project. During their weekly visits, the trained home visitorseducated thefamily members in child health care, provided supportandguidance,taughtthemtheskillsofearlystimulation,andhelpedthemtoaccessmedicalservices.Theresults attheendofthreeyearswereveryposit ive.Only6.8%hadpersistentdevelopmentaldelay,comparedto12%inagroupofchildreninwhominterventionwasnotcarriedoutforavarietyofreasons.

DigitalCreativity

37

Roleofspecialschools

Special schools have played a pioneering role i nproviding organized services for the mentallyretarded. They are often started by parents i ncollaboration with other interested persons andprofessionals. T h e number of special schools issteadily increasing in SEAR Member Countries.Thoughinitiallyconfinedtourbanareas,theyarenowextendingtoruralareasinrecenttimes.Theirrolesarealsochanging;theyinitiallyfocusedonlyonprovidingspecialeducation,butoflatetheyhavebecomelocalresource centres and are even instrumental i nbringing about a positive change, communityawareness and healthy attitudes. Some specialschoolshavealsobeenengagedintheextensionofservicesbeyondtheschool.

Isitpossibleforthesepersons,asyoungsters,tolearnsomevocation andbeemployed?Studieshaveshownthatthisisindeedpossibleforthemajority.Buttherearemanyhurdles.Onemajorhurdleisattitudinal-thereisacommontendencytounderestimatethecapabilitiesofthesepeople.

Potential jobs can be manual, unskilled or semi-skilled,dependingonthecapabilitiesoftheindividual.Itshouldberememberedthatsuchgainfuloccupationisnotonlypossiblebutalsohelpfulforthementalhealth,self-satisfaction,andsocialstatusoftheseindividuals.Therearemanyinnovativeexamplesofhowthiscanbeachieved,e.g.,villagescanofferavarietyofagro-basedopportunitiesforgainfulemploymentofthesepeople.

VocationalTraining

Whenphysicalandattitudinalbarriersareremovedandfacilitiesforlearningandopportunitiescreatedfortrainingtheretarded,themajoritycanbegainfullyemployed.

36

SpeechTherapy

Education

Speech and language are very important and highlyspecializedfunctionsforhumanbeings.Theyservethecrucialpurposeofcommunicatingone'sownfeelingsandthoughtsto others. Mental retardation is oftenaccompaniedby asignificant limitation in t h e development of speechandlanguage. Research has again shown that a systematicapplication of speech therapy techniques is effective inpromoting speech, languageandcommunication. Speechtherapyisrequiredinmanychildrenwithmentalretardation.

Astheygrowupandmasteractivitiesofdailyliving,childrenwithmentalretardationneedtobeimpartededucationlikeotherchildren.Goingtoschoolisessentialforthemtolearnnotonlyacademicskillsbutalsodiscipline,social/interactionalskills,andpracticalskillsforcommunityliving.Thoughtheyareslowinlearning,experienceandresearchhasshownthatbyapplyingtherightkindofeducationaltechniques,itispossibletoimpartthebasicskillsofreading,writing,andarithmetictomany with mental retardation. The current approachis toeducatethem,asfaraspossible,innormalschools,ratherthan setting up specialschools (inclusiv e education).Thisespecially applies to those with milder forms of mentalretardation. However, more severely retarded childrenmaybenefitbetterineducationalsettingsmeantforthem(specialschools).Anotherapproach,whichisinteresting,istoconductspecial classes only for them in normal schools itself(opportunitysections).Whatevermaybe theapproach,itisimportanttorealizethatevenchildrenwithmentalretardationneed educational experience, to ensure their optimumdevelopmentandwell-being.

A positive developmentin SEARMember Countriesisthatthereis,to a largeextent,informalorcasual integration ofchildren with mild mental retardation in normal schoolsettings.With some effort, it is possible tosee thatsuchchildren are given individual attention. This can bestrengthened further byteacher training and provision ofresourceteachersandresourceroomssothatmoreandmorechildrenwith mentalretardation,especiallythosewithmildmentalretardation,canenterthenormalschoolsystem.Thishasbeendemonstratedin manydistricts of Ind ia ,whereaschemeof Integrated Education of the Disabledhasbeenattempted through the joint efforts of governmental a ndnongovernmentalagencies.Recently,therehavebeenmajorinitiatives in this direction in Bangladesh, Sri LankaandThailand.

DigitalCreativity

37

Roleofspecialschools

Special schools have played a pioneering role i nproviding organized services for the mentallyretarded. They are often started by parents i ncollaboration with other interested persons andprofessionals. T h e number of special schools issteadily increasing in SEAR Member Countries.Thoughinitiallyconfinedtourbanareas,theyarenowextendingtoruralareasinrecenttimes.Theirrolesarealsochanging;theyinitiallyfocusedonlyonprovidingspecialeducation,butoflatetheyhavebecomelocalresource centres and are even instrumental i nbringing about a positive change, communityawareness and healthy attitudes. Some specialschoolshavealsobeenengagedintheextensionofservicesbeyondtheschool.

Isitpossibleforthesepersons,asyoungsters,tolearnsomevocation andbeemployed?Studieshaveshownthatthisisindeedpossibleforthemajority.Buttherearemanyhurdles.Onemajorhurdleisattitudinal-thereisacommontendencytounderestimatethecapabilitiesofthesepeople.

Potential jobs can be manual, unskilled or semi-skilled,dependingonthecapabilitiesoftheindividual.Itshouldberememberedthatsuchgainfuloccupationisnotonlypossiblebutalsohelpfulforthementalhealth,self-satisfaction,andsocialstatusoftheseindividuals.Therearemanyinnovativeexamplesofhowthiscanbeachieved,e.g.,villagescanofferavarietyofagro-basedopportunitiesforgainfulemploymentofthesepeople.

VocationalTraining

Whenphysicalandattitudinalbarriersareremovedandfacilitiesforlearningandopportunitiescreatedfortrainingtheretarded,themajoritycanbegainfullyemployed.

36

SpeechTherapy

Education

Speech and language are very important and highlyspecializedfunctionsforhumanbeings.Theyservethecrucialpurposeofcommunicatingone'sownfeelingsandthoughtsto others. Mental retardation is oftenaccompaniedby asignificant limitation in t h e development of speechandlanguage. Research has again shown that a systematicapplication of speech therapy techniques is effective inpromoting speech, languageandcommunication. Speechtherapyisrequiredinmanychildrenwithmentalretardation.

Astheygrowupandmasteractivitiesofdailyliving,childrenwithmentalretardationneedtobeimpartededucationlikeotherchildren.Goingtoschoolisessentialforthemtolearnnotonlyacademicskillsbutalsodiscipline,social/interactionalskills,andpracticalskillsforcommunityliving.Thoughtheyareslowinlearning,experienceandresearchhasshownthatbyapplyingtherightkindofeducationaltechniques,itispossibletoimpartthebasicskillsofreading,writing,andarithmetictomany with mental retardation. The current approachis toeducatethem,asfaraspossible,innormalschools,ratherthan setting up specialschools (inclusiv e education).Thisespecially applies to those with milder forms of mentalretardation. However, more severely retarded childrenmaybenefitbetterineducationalsettingsmeantforthem(specialschools).Anotherapproach,whichisinteresting,istoconductspecial classes only for them in normal schools itself(opportunitysections).Whatevermaybe theapproach,itisimportanttorealizethatevenchildrenwithmentalretardationneed educational experience, to ensure their optimumdevelopmentandwell-being.

A positive developmentin SEARMember Countriesisthatthereis,to a largeextent,informalorcasual integration ofchildren with mild mental retardation in normal schoolsettings.With some effort, it is possible tosee thatsuchchildren are given individual attention. This can bestrengthened further byteacher training and provision ofresourceteachersandresourceroomssothatmoreandmorechildrenwith mentalretardation,especiallythosewithmildmentalretardation,canenterthenormalschoolsystem.Thishasbeendemonstratedin manydistricts of Ind ia ,whereaschemeof Integrated Education of the Disabledhasbeenattempted through the joint efforts of governmental a ndnongovernmentalagencies.Recently,therehavebeenmajorinitiatives in this direction in Bangladesh, Sri LankaandThailand.

DigitalCreativity

39

Adultswithmentalretardationcanandshouldwork.Herearesomeexamples

Bangladesh…

India…

SriLanka…

A20-year-oldboywithmildmentalretardationwasbroughttotheclinicfromavillageforproblematic behaviour. He spentmost of his time roaming around the village anddemandingthingsfromshopkeepers.Theparentstriedtoengagehiminfarmwork,butfailed.Whentoldtopickweedsinthefield,hewouldalsopickthecrop.Theboy'sunclevolunteeredtotrytotrainhim,afterhelearnthowtotraintheboy.Withalotofpatienceandrepeatedteaching,theboylearnttodofarmworkandbecameverygoodatit.Hestartedenjoyinghisworkandbecameusefultothefamily.Atthesametime,histempertantrumsanddemandingbehaviourdecreased.

Inauniqueexperiment,NavjyotiTrustforvocationalrehabilitationinChennaiwasabletomodify thelearningenvironmentto successfullyteachtheski l ls of light engineeringassemblytomentallyretardedchildren.NowtheTrustregularlyhandlessuchassemblyformanyindustriesoncontractual basis.Workof a high quality isaccomplished byindividualswithretardationandthereisalonglistofsmallandlarge-scaleindustrieswhohavebeensuccessfullyabletoutilizetheseindividuals.Somehaveevenmadeitapolicytoearmark aproportionofjobsforthem.

ThemotherofagirlwithDownssyndromewasveryupsetandworriedwhenshecametoknowoftheproblem.Shekeptworryingaboutwhatthechildwilldowhenshegrewup.But,overtheyears,shenoticedthatthegirlhada flairandtalent forhandlingyoungchildren.Now,themotherrunsacrècheathomeandthegirldoesmuchofthecaringofchildren.Bothsheandhermotherlookhappyandconfident.

NetherlandsandUSA…

IntheNetherlands,adultswithmentalretardationhavebeenengagedsuccessfullyinthemanufactureofTVsetsformorethanthreedecades.

Inthe USA,peoplewithmentalretardationcandosomejobsbetterthantheirnormalcounterparts.Forinstance,theservicesofpeoplewithmentalretardationwereutilizedinassemblingsomepartsofApollo11,whichwenttothemoon.Thiswasbecausetheirerrorrateswerelowercomparedtonormalpeople.Normalpeoplewere morelikelytomakemistakes becauseof boredom, which was not t h e case with those with mentalretardation.

38

DeepashreeM.Shanbhag

39

Adultswithmentalretardationcanandshouldwork.Herearesomeexamples

Bangladesh…

India…

SriLanka…

A20-year-oldboywithmildmentalretardationwasbroughttotheclinicfromavillageforproblematic behaviour. He spentmost of his time roaming around the village anddemandingthingsfromshopkeepers.Theparentstriedtoengagehiminfarmwork,butfailed.Whentoldtopickweedsinthefield,hewouldalsopickthecrop.Theboy'sunclevolunteeredtotrytotrainhim,afterhelearnthowtotraintheboy.Withalotofpatienceandrepeatedteaching,theboylearnttodofarmworkandbecameverygoodatit.Hestartedenjoyinghisworkandbecameusefultothefamily.Atthesametime,histempertantrumsanddemandingbehaviourdecreased.

Inauniqueexperiment,NavjyotiTrustforvocationalrehabilitationinChennaiwasabletomodify thelearningenvironmentto successfullyteachtheski l ls of light engineeringassemblytomentallyretardedchildren.NowtheTrustregularlyhandlessuchassemblyformanyindustriesoncontractual basis.Workof a high quality isaccomplished byindividualswithretardationandthereisalonglistofsmallandlarge-scaleindustrieswhohavebeensuccessfullyabletoutilizetheseindividuals.Somehaveevenmadeitapolicytoearmark aproportionofjobsforthem.

ThemotherofagirlwithDownssyndromewasveryupsetandworriedwhenshecametoknowoftheproblem.Shekeptworryingaboutwhatthechildwilldowhenshegrewup.But,overtheyears,shenoticedthatthegirlhada flairandtalent forhandlingyoungchildren.Now,themotherrunsacrècheathomeandthegirldoesmuchofthecaringofchildren.Bothsheandhermotherlookhappyandconfident.

NetherlandsandUSA…

IntheNetherlands,adultswithmentalretardationhavebeenengagedsuccessfullyinthemanufactureofTVsetsformorethanthreedecades.

Inthe USA,peoplewithmentalretardationcandosomejobsbetterthantheirnormalcounterparts.Forinstance,theservicesofpeoplewithmentalretardationwereutilizedinassemblingsomepartsofApollo11,whichwenttothemoon.Thiswasbecausetheirerrorrateswerelowercomparedtonormalpeople.Normalpeoplewere morelikelytomakemistakes becauseof boredom, which was not t h e case with those with mentalretardation.

38

DeepashreeM.Shanbhag

40

ResidentialCare

Thereisnodoubtthatthebestplaceforpeoplewithmentalretardationtogrowupinistheirownfamily.Thealternativeofsetting up large-scale facilities, attempted by Westerncountriesforaboutacentury,hasprovedtobeabigandcostlyblunder.

Ontheotherhand,oneissuethatisamajorsourceofworryforparentsisthepossibilitythattheirretardedchildmayoutlivethem.Thequestion,“whatwillhappentomysonordaughterafterwearenomore”keepsbotheringthemastheyandtheirchildgrow older. The support ofextended families andtransferofcaretothesiblings,whichwerecommonpracticesearlier,maynotbepossibleinthecurrentandfuturescenario.Also, families commonly face the problem of makingtemporaryarrangementforcareoutsidethefamilyintimesofcrisis, familyfunctions,journeysandothersituations.Thereare also some families in very difficult circumstances, forwhomprovidingcarefortheirretarded memberbecomesimpossible.Eventhefamilieswhohavea highcommitmentandwhoaretakinggoodcareoftheiraffectedmemberfeeltheneedtoberelievedofthestressofcareforshortperiods,toavoidburn-out.

Keeping these considerations in mind, it is necessary toestablishfacilitiesfortemporaryorpermanentresidentialcareforalimitednumberofpeoplewithmentalretardation.

InThailand…

TheMinistryofPublicHealthadoptedthe"Health-for-All2000"policyandimplementedtheprimaryhealthcarestrategyin1980.Servicesforintellectuallydisabledpatientswerethenreformed. These included training programmes for general practitioners, nurses,psychologists,socialworkersandcommunityhealth officers.Therewasalsotrainingatgeneralhospitals,communityhospitalsandhealthcentres,toeducateandtrainstaffindiagnosing mental retardation, delayed development, and in the provision of earlyinterventionservicesandsimplerehabilitation,insteadofhavingtoreceivetheseservicesonlyfromspecializedhospitals.

Inaddition,therewasatrainingprogrammeforvillagehealthvolunteersineveryvillageinthecountry sothattheintellectuallydisabledpatientswithobvioussymptomscouldbediagnosed andtreatedlocally.The purposeof thisprojectwastoenablepatientswithobvioussymptomstoaccesstheservicesfromthepublichealthcentresclosesttothem.Villagehealthvolunteerswouldserveascasemanagers,visitingthepatientsandmakingarrangementsfornecessarytreatment.

S.V.Krithika

41

Yogeeta

40

ResidentialCare

Thereisnodoubtthatthebestplaceforpeoplewithmentalretardationtogrowupinistheirownfamily.Thealternativeofsetting up large-scale facilities, attempted by Westerncountriesforaboutacentury,hasprovedtobeabigandcostlyblunder.

Ontheotherhand,oneissuethatisamajorsourceofworryforparentsisthepossibilitythattheirretardedchildmayoutlivethem.Thequestion,“whatwillhappentomysonordaughterafterwearenomore”keepsbotheringthemastheyandtheirchildgrow older. The support ofextended families andtransferofcaretothesiblings,whichwerecommonpracticesearlier,maynotbepossibleinthecurrentandfuturescenario.Also, families commonly face the problem of makingtemporaryarrangementforcareoutsidethefamilyintimesofcrisis, familyfunctions,journeysandothersituations.Thereare also some families in very difficult circumstances, forwhomprovidingcarefortheirretarded memberbecomesimpossible.Eventhefamilieswhohavea highcommitmentandwhoaretakinggoodcareoftheiraffectedmemberfeeltheneedtoberelievedofthestressofcareforshortperiods,toavoidburn-out.

Keeping these considerations in mind, it is necessary toestablishfacilitiesfortemporaryorpermanentresidentialcareforalimitednumberofpeoplewithmentalretardation.

InThailand…

TheMinistryofPublicHealthadoptedthe"Health-for-All2000"policyandimplementedtheprimaryhealthcarestrategyin1980.Servicesforintellectuallydisabledpatientswerethenreformed. These included training programmes for general practitioners, nurses,psychologists,socialworkersandcommunityhealth officers.Therewasalsotrainingatgeneralhospitals,communityhospitalsandhealthcentres,toeducateandtrainstaffindiagnosing mental retardation, delayed development, and in the provision of earlyinterventionservicesandsimplerehabilitation,insteadofhavingtoreceivetheseservicesonlyfromspecializedhospitals.

Inaddition,therewasatrainingprogrammeforvillagehealthvolunteersineveryvillageinthecountry sothattheintellectuallydisabledpatientswithobvioussymptomscouldbediagnosed andtreatedlocally.The purposeof thisprojectwastoenablepatientswithobvioussymptomstoaccesstheservicesfromthepublichealthcentresclosesttothem.Villagehealthvolunteerswouldserveascasemanagers,visitingthepatientsandmakingarrangementsfornecessarytreatment.

S.V.Krithika

41

Yogeeta

42

Thereisawell-knownsayingthatthehomeis

thefirstschoolforchildrenandthemotheristhefirstteacher.Thisisespeciallytrueinthecaseofchildrenwithmentalretardation.

Whatthefamilycando

Therearethreeaspectsconcerningthefamiliesofpersonswithmentalretardation.Thefirstisthestresstheyfaceandhowtheyadapttotheproblem.Thesecondisthetrainingofparentsas co-therapistsandthethirdistheimportance ofestablishingorganizations of parents of mentally retardedchildren.

Familiesfacealotofstressanddifficultieswhilecaringforfamily members with mental retardation.They encounterdifferentproblemsatdifferentstages.Stressmaytakemanyforms-demandsofdailycare,lackofleisuretime,emotionaldisturbances such as worries, frustrations, sadness,irritability, and relationship problems between familymembers. In addition, there is stigmatization, socialembarrassment,andfinancialimplications.

However, families are n o t always passivesufferers. T h e ymakeeffortstoovercomethedifficultiesandtrytocopeandadjusttothesituation.Theytrytosolicitsupportandadvicefromrelatives,friends,religiouspersons,andprofessionals.

Inthisprocessofadjustment,certainthingshelpthefamiliestocopeandadaptwell.Familiesneedtogathertherightkindof information about the condition and beco meknowledgeableaboutit.Atsomestage,theyhavetoacceptthementalretardationinafamilymember-theyshouldalsounderstand that these family members will continue todevelop,eventhoughataslowerpace,andthathome-basedtrainingcanenhancesuchdevelopment.

It isalsoveryimportantforfamil iestopreservetheirownhealth,maintainfamilycohesionandharmoniousrelations.Theyshouldtryasmuchaspossibletocontinuewiththeirnormallife.Theyshouldnotcutofftheirrelationshipsandcontactswithfriendsandrelativesoutofasenseofshameorembarrassment.Theburdenofcareshouldnotfallonlyonthemother;otherfamilymembersshouldalsoshareinthecaring.Familieshaveagreaterchanceofsucceedinginsolvingtheproblemswhentheyworkwithasenseoftogetherness.

FamilyStressandAdaptation

43

Families can sometimesbring about bigchanges in thesociety. One good example was US President John FKennedy,whohadasisterwithmental retardation. He wasresponsibleforradicalchangesintheprovisionofservicesforindividualswithmentalretardationinUSA.Familieshavetheresponsibilitytoprovidegoodcare,affectionandtrainingtotheseindividuals,but,atthesametime,itisnotnecessarythattheysacrificeeverythingforthesakeofthechild.

Even people with mentalretardationcangiveandreceiveaffectionlikeothers.Ahappyfamilyisonethatrecognizesthisfactandtakespleasureineventheirsmallachievements.

Seekinformation and clarify yourdoubts fromreliablesources.Lookatabilitiesratherthandisabilitiesinthechild.Noticesuccessesandpraisethem,howeversmallthesemaybe.

Trytolearnthetechniquesoftrainingandpractisethem.Rememberthatthosewithmentalretardationareslowinlearning buttheycanstil lbetaughtwithpatience,persistence,andthecorrectapproach.

Findoutaboutservicesthatareavailableandutilizethem.Thereisnoneedtofeelashamedabouthaving aretardedchild.

Thereisnoneedtoblameoneselforotherfamilymembersforthechild'scondition.D o not overprotectthe child; a s faraspossibleencouragethemtostandontheirownfeet.

Do not waste money unnecessarily on dubioustreatments,whichhavenotbeenproven.Contactotherparentsformutualsupport.

Some Do'sandDon'tsforparents…

!

!

!

!

!

!

!

!

!

!

!

42

Thereisawell-knownsayingthatthehomeis

thefirstschoolforchildrenandthemotheristhefirstteacher.Thisisespeciallytrueinthecaseofchildrenwithmentalretardation.

Whatthefamilycando

Therearethreeaspectsconcerningthefamiliesofpersonswithmentalretardation.Thefirstisthestresstheyfaceandhowtheyadapttotheproblem.Thesecondisthetrainingofparentsas co-therapistsandthethirdistheimportance ofestablishingorganizations of parents of mentally retardedchildren.

Familiesfacealotofstressanddifficultieswhilecaringforfamily members with mental retardation.They encounterdifferentproblemsatdifferentstages.Stressmaytakemanyforms-demandsofdailycare,lackofleisuretime,emotionaldisturbances such as worries, frustrations, sadness,irritability, and relationship problems between familymembers. In addition, there is stigmatization, socialembarrassment,andfinancialimplications.

However, families are n o t always passivesufferers. T h e ymakeeffortstoovercomethedifficultiesandtrytocopeandadjusttothesituation.Theytrytosolicitsupportandadvicefromrelatives,friends,religiouspersons,andprofessionals.

Inthisprocessofadjustment,certainthingshelpthefamiliestocopeandadaptwell.Familiesneedtogathertherightkindof information about the condition and beco meknowledgeableaboutit.Atsomestage,theyhavetoacceptthementalretardationinafamilymember-theyshouldalsounderstand that these family members will continue todevelop,eventhoughataslowerpace,andthathome-basedtrainingcanenhancesuchdevelopment.

It isalsoveryimportantforfamil iestopreservetheirownhealth,maintainfamilycohesionandharmoniousrelations.Theyshouldtryasmuchaspossibletocontinuewiththeirnormallife.Theyshouldnotcutofftheirrelationshipsandcontactswithfriendsandrelativesoutofasenseofshameorembarrassment.Theburdenofcareshouldnotfallonlyonthemother;otherfamilymembersshouldalsoshareinthecaring.Familieshaveagreaterchanceofsucceedinginsolvingtheproblemswhentheyworkwithasenseoftogetherness.

FamilyStressandAdaptation

43

Families can sometimesbring about bigchanges in thesociety. One good example was US President John FKennedy,whohadasisterwithmental retardation. He wasresponsibleforradicalchangesintheprovisionofservicesforindividualswithmentalretardationinUSA.Familieshavetheresponsibilitytoprovidegoodcare,affectionandtrainingtotheseindividuals,but,atthesametime,itisnotnecessarythattheysacrificeeverythingforthesakeofthechild.

Even people with mentalretardationcangiveandreceiveaffectionlikeothers.Ahappyfamilyisonethatrecognizesthisfactandtakespleasureineventheirsmallachievements.

Seekinformation and clarify yourdoubts fromreliablesources.Lookatabilitiesratherthandisabilitiesinthechild.Noticesuccessesandpraisethem,howeversmallthesemaybe.

Trytolearnthetechniquesoftrainingandpractisethem.Rememberthatthosewithmentalretardationareslowinlearning buttheycanstil lbetaughtwithpatience,persistence,andthecorrectapproach.

Findoutaboutservicesthatareavailableandutilizethem.Thereisnoneedtofeelashamedabouthaving aretardedchild.

Thereisnoneedtoblameoneselforotherfamilymembersforthechild'scondition.D o not overprotectthe child; a s faraspossibleencouragethemtostandontheirownfeet.

Do not waste money unnecessarily on dubioustreatments,whichhavenotbeenproven.Contactotherparentsformutualsupport.

Some Do'sandDon'tsforparents…

!

!

!

!

!

!

!

!

!

!

!

45

Utilityofparents/groups-amother'sperspective…

Themotherofa15-year-oldboyattendingaself-helpgroupforsometimereported,“IalwaysthoughtthatitismyfatethatIshouldsilentlysufferbecauseoftheproblemscreated by my son. I would fee l veryhelplessandtiredbutsomehowusedtocarryon.Butthingshavechangednow.IseeothersfacingsimilarproblemsandfeelthatIamnotalone.IfeelrelievedwhenItalkaboutmyproblemsfreelyinthegroup.Ihave alsolearnthow totacklethe problems betterandfeelmoreconfidentaboutthefuture”.

Parental self-helpgroup movementin India: a bigstepforward…

In the 1970s, there were very few parentsorganizations in India. In 1980,WHOconductedseveral workshops to promote this idea. Thisprovided the motivation for many parents,professionals, and nongovernmental organizationstoformself-helpgroupsintheirownlocalities.Theidea caughtonovertheyears.TheNationalInstitutefor the Mentally Handicapped, Secunderabad,recognized the importance ofthis approachandprovided technical and organizational support. Anationalfederation ofparentsassociations(namedParivar) was formed in 1994 andannualmeetingswerehe ld .Currently,theseassociationshaveahighvisibility and a big say in matters concerninglegislation and policydevelopment at the nationallevel.

44

ParentTraining

ParentOrganizations

Initially, thetechniquesoftrainingindividuals withmentalretardationweredevelopedforprofessionals.Later,attemptstoteachtheseskillstoworkerswithminimalexpertiseweremadeandfoundtobefeasible.Stilllater,itwasrealizedthatparentsthemselvescould be taughtthe techniques.Also,professionals realizedthatparentscame upwithideasandtechniques thattheyhadneverthoughtof!Afamily,inthisway,isaco-therapistandapartnerincare.

Manyprogrammeshavebeendevelopedforimpartingtheseskills to parents. Several centres insomeSEARMemberCountri esnowholdregularworkshopsforgrouptrainingofparents.SomecentresinIndiahaveevolvedaninnovativeapproach of short-term residential family-focusedintervention,especiallyforthosewithsevereandmultipledisabilities.Avarietyofeducationalandtrainingmaterialsarealso available,notably,fromthe National Institutefor theMentallyHandicapped,Secunderabad(India).

Perhapsthebestpersonswhocanunderstandtheplight ofparentswithamentallyretardedchildareotherparentswhohave gone through similarexperiences. When many suchparentscometogether, theycanworkasagroupformanytangiblebenefitsforthemselvesaswellastheirchildren.Thishas, infact, happened al lover theworld in the last 3-4decades.Theseparentorganizationshavealsobeenreferredtoasself-helpgroups.Themainfunctionofthesegroupsistomeet other parents and realize that t h e y are notalone,besidescollectinganddisseminatinginformation,providingsupportfor'new'parents,supportingandlearningfromeachother onhowtofacesituat ions andsolve problems, a n dworking towardsorganizingbetterservicesintheirlocality.Theycanalsofunctionaspressuregroupstogettheirshareofresourcesfromthegovernmentandevenbringaboutpolicychanges.

DigitalCreativity

45

Utilityofparents/groups-amother'sperspective…

Themotherofa15-year-oldboyattendingaself-helpgroupforsometimereported,“IalwaysthoughtthatitismyfatethatIshouldsilentlysufferbecauseoftheproblemscreated by my son. I would fee l veryhelplessandtiredbutsomehowusedtocarryon.Butthingshavechangednow.IseeothersfacingsimilarproblemsandfeelthatIamnotalone.IfeelrelievedwhenItalkaboutmyproblemsfreelyinthegroup.Ihave alsolearnthow totacklethe problems betterandfeelmoreconfidentaboutthefuture”.

Parental self-helpgroup movementin India: a bigstepforward…

In the 1970s, there were very few parentsorganizations in India. In 1980,WHOconductedseveral workshops to promote this idea. Thisprovided the motivation for many parents,professionals, and nongovernmental organizationstoformself-helpgroupsintheirownlocalities.Theidea caughtonovertheyears.TheNationalInstitutefor the Mentally Handicapped, Secunderabad,recognized the importance ofthis approachandprovided technical and organizational support. Anationalfederation ofparentsassociations(namedParivar) was formed in 1994 andannualmeetingswerehe ld .Currently,theseassociationshaveahighvisibility and a big say in matters concerninglegislation and policydevelopment at the nationallevel.

44

ParentTraining

ParentOrganizations

Initially, thetechniquesoftrainingindividuals withmentalretardationweredevelopedforprofessionals.Later,attemptstoteachtheseskillstoworkerswithminimalexpertiseweremadeandfoundtobefeasible.Stilllater,itwasrealizedthatparentsthemselvescould be taughtthe techniques.Also,professionals realizedthatparentscame upwithideasandtechniques thattheyhadneverthoughtof!Afamily,inthisway,isaco-therapistandapartnerincare.

Manyprogrammeshavebeendevelopedforimpartingtheseskills to parents. Several centres insomeSEARMemberCountri esnowholdregularworkshopsforgrouptrainingofparents.SomecentresinIndiahaveevolvedaninnovativeapproach of short-term residential family-focusedintervention,especiallyforthosewithsevereandmultipledisabilities.Avarietyofeducationalandtrainingmaterialsarealso available,notably,fromthe National Institutefor theMentallyHandicapped,Secunderabad(India).

Perhapsthebestpersonswhocanunderstandtheplight ofparentswithamentallyretardedchildareotherparentswhohave gone through similarexperiences. When many suchparentscometogether, theycanworkasagroupformanytangiblebenefitsforthemselvesaswellastheirchildren.Thishas, infact, happened al lover theworld in the last 3-4decades.Theseparentorganizationshavealsobeenreferredtoasself-helpgroups.Themainfunctionofthesegroupsistomeet other parents and realize that t h e y are notalone,besidescollectinganddisseminatinginformation,providingsupportfor'new'parents,supportingandlearningfromeachother onhowtofacesituat ions andsolve problems, a n dworking towardsorganizingbetterservicesintheirlocality.Theycanalsofunctionaspressuregroupstogettheirshareofresourcesfromthegovernmentandevenbringaboutpolicychanges.

DigitalCreativity

46

Whatthecommunitycando

Whatdoesthecommonmanknowaboutmentalretardation?Howdoesherespondwhenhecomesacrosspersonswithmentalretardation?Doeshelookdownuponthem,ridiculethemorthinkofthemasapublicnuisanceorviewthemwithfear? O r d o e s h e try tounderstand the problem and d owhateverhecantohelpthem?Howcomfortabledofamiliesfeelwhentheyhavetotaketheaffectedmemberoutofthehouse?Obviously,answerstothesequestionsmakeamajordifferenceforindividualswith mentalretardation andtheirfamilies.

Putinanotherway,thequalityoflifeofindividualswithmentalretardationandtheirfamiliesdependsalotontheawareness,attitudes,andbeliefsofthecommunity.Also,thesocietyasawhole has the responsibility to ensure thatther ights ofpeople are protected andfacilitiesforcareareprovided.Itfollowsthatactionsarerequiredatthecommunityandsociallevelstoachievethesegoals.Thisisallthemorenecessaryforindividualswithmentalretardation,astheycannotspeakforthemselves.

Socialstigmaofmentalretardationanditsreduction…

! Bothindividualswithmentalretardationandtheirfamilieshavetofrequentlyfacescorn,ridicule,fearandrejection.Suchastigmaarisesbecauseofthelackofawarenessandtheprevalenceofmanymythsandmisconceptionsaboutmentalretardation. Thesestigmatizinginfluencesmakelifemiserablefortheindividualsandtheirfamiliesandaddtotheirdifficulties.

Thebestwaytoreduceandeliminatestigmaisbyraisingawarenessinthecommunityandbydispellingthemythsandmisconceptions.Thishastobedonebyacombinedeffortoffamilies,communityleaders,governmentalandnongovernmentalorganizations.Activitiessuchaspubliceducation materials, street plays, public rallies, andprogrammesutilizingthemassmediaaresomeexamplestoachievethisgoal.

Atthemicro-level,familieshavetolearntocopewiththeirownfearsaboutstigmatizationandkeeptheirsociallifeintact.

!

!

47

There areother reasons also to initiate actions atthecommunitylevel.Forinstance,theexistinghealthcareandeducationalsystemsmaynot be responsive,sensitive,andconcernedenoughtohandletheissuessurroundingmentalretardation.Whateverfacilitiesareavailablemaybedifficulttoaccess.

Allthese considerations havepropelled concernedpeopletodevelop community-based rehabilitation services fordisabilitiesin general and mental retardationinparticular.There have been many successful experiments andinnovations in SEAR M ember Countries in the last twodecades.Notably,nongovernmentalorganizationshavetakentheleadinthisarea.

The aimsandobjectivesofcommunity-basedrehabilitationprogrammesare:

to increase the awareness of the community andtosensitizeittoissuesandbringaboutapositiveattitudinalchange;

tofacilitatebringing patients and theirfamiliesintothemainstream;

to mobilize community resources and enhancecommunityparticipationinbuildingtherequiredservices;

toestablishaccessible,availableandaffordableservicesforthemajorityofpeoplewithinthecommunityitself;

toensurethatthesepeopleandtheirfamilieshaveasayinhowtheservicesarerun,and

to promote ownership of the programmes by thecommunity itself sothat they continue even withoutexternalaidorsupport.

!

!

!

!

!

!

Yogeeta

46

Whatthecommunitycando

Whatdoesthecommonmanknowaboutmentalretardation?Howdoesherespondwhenhecomesacrosspersonswithmentalretardation?Doeshelookdownuponthem,ridiculethemorthinkofthemasapublicnuisanceorviewthemwithfear? O r d o e s h e try tounderstand the problem and d owhateverhecantohelpthem?Howcomfortabledofamiliesfeelwhentheyhavetotaketheaffectedmemberoutofthehouse?Obviously,answerstothesequestionsmakeamajordifferenceforindividualswith mentalretardation andtheirfamilies.

Putinanotherway,thequalityoflifeofindividualswithmentalretardationandtheirfamiliesdependsalotontheawareness,attitudes,andbeliefsofthecommunity.Also,thesocietyasawhole has the responsibility to ensure thatther ights ofpeople are protected andfacilitiesforcareareprovided.Itfollowsthatactionsarerequiredatthecommunityandsociallevelstoachievethesegoals.Thisisallthemorenecessaryforindividualswithmentalretardation,astheycannotspeakforthemselves.

Socialstigmaofmentalretardationanditsreduction…

! Bothindividualswithmentalretardationandtheirfamilieshavetofrequentlyfacescorn,ridicule,fearandrejection.Suchastigmaarisesbecauseofthelackofawarenessandtheprevalenceofmanymythsandmisconceptionsaboutmentalretardation. Thesestigmatizinginfluencesmakelifemiserablefortheindividualsandtheirfamiliesandaddtotheirdifficulties.

Thebestwaytoreduceandeliminatestigmaisbyraisingawarenessinthecommunityandbydispellingthemythsandmisconceptions.Thishastobedonebyacombinedeffortoffamilies,communityleaders,governmentalandnongovernmentalorganizations.Activitiessuchaspubliceducation materials, street plays, public rallies, andprogrammesutilizingthemassmediaaresomeexamplestoachievethisgoal.

Atthemicro-level,familieshavetolearntocopewiththeirownfearsaboutstigmatizationandkeeptheirsociallifeintact.

!

!

47

There areother reasons also to initiate actions atthecommunitylevel.Forinstance,theexistinghealthcareandeducationalsystemsmaynot be responsive,sensitive,andconcernedenoughtohandletheissuessurroundingmentalretardation.Whateverfacilitiesareavailablemaybedifficulttoaccess.

Allthese considerations havepropelled concernedpeopletodevelop community-based rehabilitation services fordisabilitiesin general and mental retardationinparticular.There have been many successful experiments andinnovations in SEAR M ember Countries in the last twodecades.Notably,nongovernmentalorganizationshavetakentheleadinthisarea.

The aimsandobjectivesofcommunity-basedrehabilitationprogrammesare:

to increase the awareness of the community andtosensitizeittoissuesandbringaboutapositiveattitudinalchange;

tofacilitatebringing patients and theirfamiliesintothemainstream;

to mobilize community resources and enhancecommunityparticipationinbuildingtherequiredservices;

toestablishaccessible,availableandaffordableservicesforthemajorityofpeoplewithinthecommunityitself;

toensurethatthesepeopleandtheirfamilieshaveasayinhowtheservicesarerun,and

to promote ownership of the programmes by thecommunity itself sothat they continue even withoutexternalaidorsupport.

!

!

!

!

!

!

Yogeeta

49

InSriLanka,theSusithaParentsAssociationconductsperiodicworkshopstotrainvolunteersandparentsinthemanagementofpersonswithmentalretardation.Theparticipantsareselectedfromthecommunity,andtheworkshopsareheldinmostdistricts.Thisprogrammehasbeenverysuccessful.

Bangladesh Protibandhi Foundation: a successful NGOinitiative…

Many NGOsareactivelyworkinginBangladeshforthewelfareofpersonswithmentalretardation.One suchorganizationwithagoodtrackrecordistheBangladeshProtibandhi Foundation (BPF). Started in 1984 as aparent professionalpartnership,BPFhasbeenplayingakeyroleintheareaofmentalretardation.BPFhasbeenabletoin i t iateand sustainavar iety of activities andprogrammes, which include heal th care andpsychologicalservices,otherprofessionalservicessuchasphysiotherapyandspeechtherapy,earlystimulationprogrammes,aspecialschool,andshelteredworkshop.A unique programme of BPFisthe DistanceTrainingPackagemeantforchildrenwithdelayeddevelopmentinremoteruralareas.Thisprogrammemakes use ofpictorial training manuals and guides for impartinghome-basedskillstomothers,whoperiodicallycontactthecentretoensureongoingintervention.BPFalsohasa strong component of rural and community-basedrehabilitation programmes, combining these withdevelopmental activities (such as adult literacy forparentsandmicro-creditfacilitiesforverypoorfamilies).Parentempowerment throughinitiationofparentclubshasbeenanotherimportantactivity.Inaddition,BPFhasa major rolein promoting the concept ofInclusiveEducation.BPFhasalsostartedcoursesforpersonnelatdifferentlevelstoensuretraininganddevelopment.

Utilizing thehumanresourcesavailableinthecommunitytocarry o u t interventions isanimportant steptoreach largesections of the needy population. Such resources wouldincludecommunityvolunteers,grassroots-levelworkers,localpeoplewithminimumeducationandschoolteachers.Ithasbeenrepeatedlydemonstratedthatitispossibletotransferbasicknowledgeandskillsforthesegroupsofpeoplethroughshort-term trainingprogrammes. There isalso a need for“training thetrainers”inafewspecializedcentresmeantforthis purpose. These trainerscould then train others, thusmakingitamassmovement.

48

India:SourabhaCommunity-basedRehabilitationProjectcareatthedoorsteps…

Sri Ramana Maharishi Academy for the Blind, avoluntary organization in Bangalore, started acommunity-based rehabilitation programme in 140villages about 40 km from Bangalorein 1990. Theprogramme wasfundedandpartneredby ActionAid.Themainaimwastoproviderehabilitationfacilitiesforalldisabilitiesincludingmentalretardation,atallagesinthetargetarea.

Localpeoplewithsecondaryeducationwerechosenand trained to work as grassroots levelworkers.Themain activities were survey/detection, medicalevaluationandtreatment(throughcamps),communityawareness, parent counselling, stimulation, schoolenrolment, vocational training, mobilization o fcommunityresources,andfacilitationofsocialwelfarebenefits.

This ongoing programme has undergone extensiveevaluation, indicating very satisfactoryresults on avarietyofparameters.

VaishaviSachinAmbre

49

InSriLanka,theSusithaParentsAssociationconductsperiodicworkshopstotrainvolunteersandparentsinthemanagementofpersonswithmentalretardation.Theparticipantsareselectedfromthecommunity,andtheworkshopsareheldinmostdistricts.Thisprogrammehasbeenverysuccessful.

Bangladesh Protibandhi Foundation: a successful NGOinitiative…

Many NGOsareactivelyworkinginBangladeshforthewelfareofpersonswithmentalretardation.One suchorganizationwithagoodtrackrecordistheBangladeshProtibandhi Foundation (BPF). Started in 1984 as aparent professionalpartnership,BPFhasbeenplayingakeyroleintheareaofmentalretardation.BPFhasbeenabletoin i t iateand sustainavar iety of activities andprogrammes, which include heal th care andpsychologicalservices,otherprofessionalservicessuchasphysiotherapyandspeechtherapy,earlystimulationprogrammes,aspecialschool,andshelteredworkshop.A unique programme of BPFisthe DistanceTrainingPackagemeantforchildrenwithdelayeddevelopmentinremoteruralareas.Thisprogrammemakes use ofpictorial training manuals and guides for impartinghome-basedskillstomothers,whoperiodicallycontactthecentretoensureongoingintervention.BPFalsohasa strong component of rural and community-basedrehabilitation programmes, combining these withdevelopmental activities (such as adult literacy forparentsandmicro-creditfacilitiesforverypoorfamilies).Parentempowerment throughinitiationofparentclubshasbeenanotherimportantactivity.Inaddition,BPFhasa major rolein promoting the concept ofInclusiveEducation.BPFhasalsostartedcoursesforpersonnelatdifferentlevelstoensuretraininganddevelopment.

Utilizing thehumanresourcesavailableinthecommunitytocarry o u t interventions isanimportant steptoreach largesections of the needy population. Such resources wouldincludecommunityvolunteers,grassroots-levelworkers,localpeoplewithminimumeducationandschoolteachers.Ithasbeenrepeatedlydemonstratedthatitispossibletotransferbasicknowledgeandskillsforthesegroupsofpeoplethroughshort-term trainingprogrammes. There isalso a need for“training thetrainers”inafewspecializedcentresmeantforthis purpose. These trainerscould then train others, thusmakingitamassmovement.

48

India:SourabhaCommunity-basedRehabilitationProjectcareatthedoorsteps…

Sri Ramana Maharishi Academy for the Blind, avoluntary organization in Bangalore, started acommunity-based rehabilitation programme in 140villages about 40 km from Bangalorein 1990. Theprogramme wasfundedandpartneredby ActionAid.Themainaimwastoproviderehabilitationfacilitiesforalldisabilitiesincludingmentalretardation,atallagesinthetargetarea.

Localpeoplewithsecondaryeducationwerechosenand trained to work as grassroots levelworkers.Themain activities were survey/detection, medicalevaluationandtreatment(throughcamps),communityawareness, parent counselling, stimulation, schoolenrolment, vocational training, mobilization o fcommunityresources,andfacilitationofsocialwelfarebenefits.

This ongoing programme has undergone extensiveevaluation, indicating very satisfactoryresults on avarietyofparameters.

VaishaviSachinAmbre

51

PolicyandLegislation

Governments have the responsibilitytoprovide optimumservices to adequately address the problem of mentalretardation. This includes strengthening and effectiveutilization ofexistingservicesinthehealth,education andwelfare sectors; creating new infrastructure wherenecessary,and encouragingandpromotingactivitiesin theNGOsectorbybuildingpartnershipswiththem.

The intent and commitment of governments to allocateresources and develop services in the area of mentalretardation needs tobe expressedin theformofpol icystatementsandenactmentoflegislationatthenationallevel.SeveralstepshavebeentakeninthisdirectionrecentlyinMemberCountriesoftheRegion.

,theNational PolicyforMentallyHandicappedwasformulatedin1988,whichgaveanimpetustothedevelopmentofPersonswithDisabilitiesAct.Comingintoforce in 1995, this Act envisages mandatorysupportfortheprevention,earlydetection,education,employment and other facilitiesand social securitybenefitsforthewelfareofpersonswithdisabilitiesingeneral and mental retardation in particular. I naddition, this Actprovidesforaffirmative actionandnon-discrimination o f persons with disabilities. I nkeepingwi th thisAct, several states in India havebegun providing many socialsecuritymeasureslikedisability pension,family pension, scholarshipsforspecialeducation,travelconcession,incometaxreliefand special insurance policies. Another positivedevelopment in India is the promulgation of t h eNationalTrustActin1999.ThespiritbehindthisActistoactivelyinvolvethe parentsofmentallychallengedpersonsandvoluntaryorganizationsinsettingupandrunning a variety o f services and facilities withgovernmental funding. It is hoped that theimplementationofthisAct will betheanswertoanimportantconcernofparents,viz.,“whatwillhappentoourchildafterwearenomore”.

Settingupanapexinstitutionatthenationallevelwouldbeanother importantgovernmentalinvestmenttoaddresstheneedsofthementallyretardedsegmentofthepopulation.

InIndia

50

Whatthegovernmentcando

Inthepublicsector,therehavebeenseriousandsustainedefforts toensure a wide coverage of community-basedservices, especially in rural and underserved areas. TheIntegratedChildDevelopmentScheme of Ind ia isagood example with definite components of primary andsecondaryprevention. Thegrassrootsworkers(anganwadiworkers)underthisschemearefromthesamelocalityandareresponsibleformaternalandchild(under five yearsofage) health care with the main focus on nutrition,immunization, and health education. The scheme alsoincludes early childhood stimulation and detection andreferralofchildhooddisabilities.

AnothermajordevelopmentinIndiainthelasttwoorthreedecadeshasbeentheapproachofcommunitymentalhealth,with mental retardation as a priority condition. The majorobjective of this movement has been the integration ofmentalhealthcareintothegovernment-runprimaryhealthcare system.Morerecently,a novel scheme,theDistrictMental Health Programme has been evolved andimplemented in Bellary District of Karnataka. A detailedevaluationofthismodelhasclearlyshowntheeffectivenessandutilityofthisapproach.

ThesettingupoftheRehabilitationCouncilofIndiaisarecentand ongoing attempt at sensitizing and training all thefunctionariesintheprimaryhealthcaresystemtotheissuesconcerningdisability(includingmental retardation). In thismassiveproject,thefunctionariesareundergoingshort-termorientation/trainingatresourcecentresspreadalloverIndia.

(ICDS)

While all these are very encouraging initiatives anddevelopments, not more than 5-10% of the affectedpopulationiscurrentlybeingservedbytheexistingservices.There is now a need for all concerned people andorganizationstoworktogethertocreate,nurtureandsustainmoreandmorefacilitiessothatthegenuineneedsofthissectionofsocietyareadequatelyfulfilled.

DigitalCreativity

51

PolicyandLegislation

Governments have the responsibilitytoprovide optimumservices to adequately address the problem of mentalretardation. This includes strengthening and effectiveutilization ofexistingservicesinthehealth,education andwelfare sectors; creating new infrastructure wherenecessary,and encouragingandpromotingactivitiesin theNGOsectorbybuildingpartnershipswiththem.

The intent and commitment of governments to allocateresources and develop services in the area of mentalretardation needs tobe expressedin theformofpol icystatementsandenactmentoflegislationatthenationallevel.SeveralstepshavebeentakeninthisdirectionrecentlyinMemberCountriesoftheRegion.

,theNational PolicyforMentallyHandicappedwasformulatedin1988,whichgaveanimpetustothedevelopmentofPersonswithDisabilitiesAct.Comingintoforce in 1995, this Act envisages mandatorysupportfortheprevention,earlydetection,education,employment and other facilitiesand social securitybenefitsforthewelfareofpersonswithdisabilitiesingeneral and mental retardation in particular. I naddition, this Actprovidesforaffirmative actionandnon-discrimination o f persons with disabilities. I nkeepingwi th thisAct, several states in India havebegun providing many socialsecuritymeasureslikedisability pension,family pension, scholarshipsforspecialeducation,travelconcession,incometaxreliefand special insurance policies. Another positivedevelopment in India is the promulgation of t h eNationalTrustActin1999.ThespiritbehindthisActistoactivelyinvolvethe parentsofmentallychallengedpersonsandvoluntaryorganizationsinsettingupandrunning a variety o f services and facilities withgovernmental funding. It is hoped that theimplementationofthisAct will betheanswertoanimportantconcernofparents,viz.,“whatwillhappentoourchildafterwearenomore”.

Settingupanapexinstitutionatthenationallevelwouldbeanother importantgovernmentalinvestmenttoaddresstheneedsofthementallyretardedsegmentofthepopulation.

InIndia

50

Whatthegovernmentcando

Inthepublicsector,therehavebeenseriousandsustainedefforts toensure a wide coverage of community-basedservices, especially in rural and underserved areas. TheIntegratedChildDevelopmentScheme of Ind ia isagood example with definite components of primary andsecondaryprevention. Thegrassrootsworkers(anganwadiworkers)underthisschemearefromthesamelocalityandareresponsibleformaternalandchild(under five yearsofage) health care with the main focus on nutrition,immunization, and health education. The scheme alsoincludes early childhood stimulation and detection andreferralofchildhooddisabilities.

AnothermajordevelopmentinIndiainthelasttwoorthreedecadeshasbeentheapproachofcommunitymentalhealth,with mental retardation as a priority condition. The majorobjective of this movement has been the integration ofmentalhealthcareintothegovernment-runprimaryhealthcare system.Morerecently,a novel scheme,theDistrictMental Health Programme has been evolved andimplemented in Bellary District of Karnataka. A detailedevaluationofthismodelhasclearlyshowntheeffectivenessandutilityofthisapproach.

ThesettingupoftheRehabilitationCouncilofIndiaisarecentand ongoing attempt at sensitizing and training all thefunctionariesintheprimaryhealthcaresystemtotheissuesconcerningdisability(includingmental retardation). In thismassiveproject,thefunctionariesareundergoingshort-termorientation/trainingatresourcecentresspreadalloverIndia.

(ICDS)

While all these are very encouraging initiatives anddevelopments, not more than 5-10% of the affectedpopulationiscurrentlybeingservedbytheexistingservices.There is now a need for all concerned people andorganizationstoworktogethertocreate,nurtureandsustainmoreandmorefacilitiessothatthegenuineneedsofthissectionofsocietyareadequatelyfulfilled.

DigitalCreativity

52

NationalInstitutefortheMentallyHandicapped(NIMH),anationalassetinIndia…

InBangladesh...

InSriLanka...

InThailand...

NIMH was established as an apex body in the field of mental retardationby theGovernmentofIndiain1984atSecunderabadinAndhraPradesh.Themainobjectivesweretodevelophumanresources,modelsofcareandrehabilitation,andtoundertakeresearch, documentation,andinformationinthefieldofmentalretardation.Sinceitsinception,NIMHhasgrownbyleapsandbounds,withmanyachievementstoitscreditandavisibleimpactonthenationalscene.Itsmajorcontributionshavebeenmanpowerdevelopment,numerousandverypopularpublicationsonearlystimulation,education,training,andrehabilitation.TheInstitutehasbeenabletodevelopinnovativemodelsoffamily and community-based care thathaveundergone researchevaluation,andhasfunctioned asaclearinghouseofinformationatthenationallevel.Recently,ithasbeeninstrumentalinpromotingandsupportingtheparentalself-helpgroupmovementinIndia.Other notable activities includeanannual nationalseminaronmental retardation, anannual meet of parent organizations, Special Olympics, awareness campaigns a n d anationalmeetofspecialemployees.TheInstitutehasmanyregionalcentresalloverIndia,mainlytoruntrainingcoursesformanpowerdevelopment.

Thereisnospecificlegislationcoveringdisability.However,apolicywasdevelopedin1995along thelinesofUNstandardrulesonequalityof opportunitiesforpersonswithdisability,anddraftlegislationisunderpreparation.BangladeshisalsoasignatorytotheUNDeclarationofRightsforPersonswithDisabilityandtheConventionontheRightsoftheChild.

TheChildren'sCharter,1991,makesacommitmenttoprovidealifeofdignityforchildrenwithdisabilities,andpreservetheirrights.It alsomakesspecificprovisionsindifferentareasfortheirdevelopmentandwelfare.

TheMinistryofPublicHealthinitiatedanewplanofservicesforpeople withintellectualdisabilities in1992. This includes early detection and early stimulation programme;neonatalscreeningforhypothyroidism;jobtrainingandjobplacementforpeoplewithintellectual disabilities; self advocacy movement; parental empowerment, andeducationalopportunitiesforpeoplewithintellectualdisabilities.

53

DebjaniMukhopadhyay

52

NationalInstitutefortheMentallyHandicapped(NIMH),anationalassetinIndia…

InBangladesh...

InSriLanka...

InThailand...

NIMH was established as an apex body in the field of mental retardationby theGovernmentofIndiain1984atSecunderabadinAndhraPradesh.Themainobjectivesweretodevelophumanresources,modelsofcareandrehabilitation,andtoundertakeresearch, documentation,andinformationinthefieldofmentalretardation.Sinceitsinception,NIMHhasgrownbyleapsandbounds,withmanyachievementstoitscreditandavisibleimpactonthenationalscene.Itsmajorcontributionshavebeenmanpowerdevelopment,numerousandverypopularpublicationsonearlystimulation,education,training,andrehabilitation.TheInstitutehasbeenabletodevelopinnovativemodelsoffamily and community-based care thathaveundergone researchevaluation,andhasfunctioned asaclearinghouseofinformationatthenationallevel.Recently,ithasbeeninstrumentalinpromotingandsupportingtheparentalself-helpgroupmovementinIndia.Other notable activities includeanannual nationalseminaronmental retardation, anannual meet of parent organizations, Special Olympics, awareness campaigns a n d anationalmeetofspecialemployees.TheInstitutehasmanyregionalcentresalloverIndia,mainlytoruntrainingcoursesformanpowerdevelopment.

Thereisnospecificlegislationcoveringdisability.However,apolicywasdevelopedin1995along thelinesofUNstandardrulesonequalityof opportunitiesforpersonswithdisability,anddraftlegislationisunderpreparation.BangladeshisalsoasignatorytotheUNDeclarationofRightsforPersonswithDisabilityandtheConventionontheRightsoftheChild.

TheChildren'sCharter,1991,makesacommitmenttoprovidealifeofdignityforchildrenwithdisabilities,andpreservetheirrights.It alsomakesspecificprovisionsindifferentareasfortheirdevelopmentandwelfare.

TheMinistryofPublicHealthinitiatedanewplanofservicesforpeople withintellectualdisabilities in1992. This includes early detection and early stimulation programme;neonatalscreeningforhypothyroidism;jobtrainingandjobplacementforpeoplewithintellectual disabilities; self advocacy movement; parental empowerment, andeducationalopportunitiesforpeoplewithintellectualdisabilities.

53

DebjaniMukhopadhyay

54

InThailand…

The RajanukulHospitalwas set upinBangkok in1960,toprovide services for intellectually challenged patientsnationwide. Patientswho were admitted would undergomedicaltreatment,vocationaltraining,educationalandsocialrehabilitation. However, being theonly hospital providingsuchservices,itwasunabletomeetthedemandsandfailedtofulfilthepatients'needs.Admittingpatientstothehospitalforalongperiodhadprovedtobedetrimentaltothepatientsforavarietyofreasons.Forexample,theiradaptivebehaviourdecreased andthehospital's inability to dischargepatientsmeantthatitwasunabletoadmitnewpatients.Asaresult,onlyalimitednumberofpatientshadaccesstothehospital'sservices. In1980,theconceptofpr imaryhealthcarewasintroduced, which included the delivery of services viacommunitycentres.Thisresolvedmanyproblemsassociatedwithprolongedhospitalization.ThustheMinistryofPublicHealthfoundedtheNorthernChildDevelopment Centre inChiang MaiProvincein northern Thailand in 1994, whichbecamethecountry'ssecondhospital fortheintellectuallychallenged.

Whatthehealthsectorcando

Thehealthsectorhasakeyroletoplayinthepromotive,preventiveandcurative aspects concerning mental retardation. I t i s a w e l l -known f a c t t hat strong and adequate maternalandchildhealthservicesinacommunitycandecreasetheprevalenceofmentalretardation. Its essential components are health education,spacing of pregnancies, improving the nutritional status duringpregnancy,screeninginpregnancyforconditionssuchassyphillisandRhincompatibility,detectionofandobstetriccareforhigh-riskpregnancy, proper nursing and medical care during labour,nutrit ional supplementation and proper immunization of youngchildren.Inaddition,primaryhealthcarepersonnelcouldcarryoutother services such as early detection and intervention fordevelopmental delay,guidance and counselling for familiesandreferraltoappropriateagenciesforrehabilitation.

55

Yogeeta

54

InThailand…

The RajanukulHospitalwas set upinBangkok in1960,toprovide services for intellectually challenged patientsnationwide. Patientswho were admitted would undergomedicaltreatment,vocationaltraining,educationalandsocialrehabilitation. However, being theonly hospital providingsuchservices,itwasunabletomeetthedemandsandfailedtofulfilthepatients'needs.Admittingpatientstothehospitalforalongperiodhadprovedtobedetrimentaltothepatientsforavarietyofreasons.Forexample,theiradaptivebehaviourdecreased andthehospital's inability to dischargepatientsmeantthatitwasunabletoadmitnewpatients.Asaresult,onlyalimitednumberofpatientshadaccesstothehospital'sservices. In1980,theconceptofpr imaryhealthcarewasintroduced, which included the delivery of services viacommunitycentres.Thisresolvedmanyproblemsassociatedwithprolongedhospitalization.ThustheMinistryofPublicHealthfoundedtheNorthernChildDevelopment Centre inChiang MaiProvincein northern Thailand in 1994, whichbecamethecountry'ssecondhospital fortheintellectuallychallenged.

Whatthehealthsectorcando

Thehealthsectorhasakeyroletoplayinthepromotive,preventiveandcurative aspects concerning mental retardation. I t i s a w e l l -known f a c t t hat strong and adequate maternalandchildhealthservicesinacommunitycandecreasetheprevalenceofmentalretardation. Its essential components are health education,spacing of pregnancies, improving the nutritional status duringpregnancy,screeninginpregnancyforconditionssuchassyphillisandRhincompatibility,detectionofandobstetriccareforhigh-riskpregnancy, proper nursing and medical care during labour,nutrit ional supplementation and proper immunization of youngchildren.Inaddition,primaryhealthcarepersonnelcouldcarryoutother services such as early detection and intervention fordevelopmental delay,guidance and counselling for familiesandreferraltoappropriateagenciesforrehabilitation.

55

Yogeeta

56

rimary prevention referstoasetofapproaches thatreduceoreliminatetheriskofmentalretardationinthecommunity. As mentioned earlier, these concern

promotingthehealthstatusofthecommunityasawholeandaffording specific protection against certain conditions.Knowledge ofthecauses ofmentalretardationcanhelptoreduce cases by at least 25% by practising primaryprevention.

There are manymethods of primaryprevention.Some ofthesearesimple,whereasothersaremorecomplicated.

Theseapplytolargesegmentsofthepopulationandbasicallymean implementation of certain practical andeffectiveinterventionsatthecommunitylevel.Alargenumberofthesepracticesconcernmaternalandchildhealthcare.Someoftheimportantstepsare:

Improving thenutritional statusof thecommunity a s awhole,especiallythegirlchildinordertoreducethe riskfactors for mentalretardationsuchas lowbirthweight,andprematurityintheoffspringofthesechildreninfuture;

Universal iodization of salt to prevent iodinedeficiencydisorders whichare endemicin some partsof SEARMemberCountries;

Administration of folic acid tablets to reduce theoccurrenceofneuraltubedefects;

Nutritional supplementation duringpregnancy,focusingonintakeofcaloriesandiron;

Universalimmunization ofchildrenwithBCG,polio,DPT,and MMR to prevent many disorders having thepropensity to damage the brain and therebycausingmental retardation.Rubellaimmunization(partofMMR)cantotallyeradicate theoccurrence of maternalrubellasyndrome;

Avoidingpregnancybefore21yearsandaftertheageof35yearsascomplicationsofpregnancyandlabouraremorecommonbefore21years.TheriskofDownssyndromeand other chromosomal disorders increases as thematernalageatpregnancycrosses35years;

!

!

!

!

!

!

Simplemethods

PREVENTIVESTRATEGIES

57

!

!

!

!

!

!

!

!

!

Spacingpregnancies to help themothertonutritionallyreplenishherselfbeforethenextpregnancy;

Avoidingexposuretoharmfulchemicalsandsubstancesincludingalcohol,nicotineandcocaineduringpregnancy,especiallyearlypregnancy.Failedabortionsarecausedbychemicalsoften administered by quacks,usingharmfulmedicines. A l l pregnant women should inform theirdoctorsabouttheirpregnancystatus;

Detectionandcareforhigh-riskpregnancies;

Screeningpregnantwomenforinfectionssuchassyphilisandpromptlytreatingit;

PreventingRhiso-immunization,asituationthatcanarisewhen the mother has Rhnegative blood group. ThedamagetothefoetuscanbepreventedbyadministrationofamedicinecalledAnti-Dimmunoglobulinimmediatelyafterthefirstdelivery;

Prompttreatmentforseverediarrhoeaandbraininfectionsduringchildhoodtoreducethechanceandextentofbraindamage;

Providing an enriching andstimulating environment forchildren from infancy to ensure proper intellectualdevelopment;

Chronic low-grade exposure to lead can impair braindevelopment;stepsshouldbetakentoreducethesourcesof environmental pollutants (such as using unleadedpetrol),and

Healtheducationaboutthenature,causesandpreventionof mentalretardation, especially duringthe formativeyears, canleadtohealthypracticesduringpregnancyandchild-rearing.

DigitalCreativity

56

rimary prevention referstoasetofapproaches thatreduceoreliminatetheriskofmentalretardationinthecommunity. As mentioned earlier, these concern

promotingthehealthstatusofthecommunityasawholeandaffording specific protection against certain conditions.Knowledge ofthecauses ofmentalretardationcanhelptoreduce cases by at least 25% by practising primaryprevention.

There are manymethods of primaryprevention.Some ofthesearesimple,whereasothersaremorecomplicated.

Theseapplytolargesegmentsofthepopulationandbasicallymean implementation of certain practical andeffectiveinterventionsatthecommunitylevel.Alargenumberofthesepracticesconcernmaternalandchildhealthcare.Someoftheimportantstepsare:

Improving thenutritional statusof thecommunity a s awhole,especiallythegirlchildinordertoreducethe riskfactors for mentalretardationsuchas lowbirthweight,andprematurityintheoffspringofthesechildreninfuture;

Universal iodization of salt to prevent iodinedeficiencydisorders whichare endemicin some partsof SEARMemberCountries;

Administration of folic acid tablets to reduce theoccurrenceofneuraltubedefects;

Nutritional supplementation duringpregnancy,focusingonintakeofcaloriesandiron;

Universalimmunization ofchildrenwithBCG,polio,DPT,and MMR to prevent many disorders having thepropensity to damage the brain and therebycausingmental retardation.Rubellaimmunization(partofMMR)cantotallyeradicate theoccurrence of maternalrubellasyndrome;

Avoidingpregnancybefore21yearsandaftertheageof35yearsascomplicationsofpregnancyandlabouraremorecommonbefore21years.TheriskofDownssyndromeand other chromosomal disorders increases as thematernalageatpregnancycrosses35years;

!

!

!

!

!

!

Simplemethods

PREVENTIVESTRATEGIES

57

!

!

!

!

!

!

!

!

!

Spacingpregnancies to help themothertonutritionallyreplenishherselfbeforethenextpregnancy;

Avoidingexposuretoharmfulchemicalsandsubstancesincludingalcohol,nicotineandcocaineduringpregnancy,especiallyearlypregnancy.Failedabortionsarecausedbychemicalsoften administered by quacks,usingharmfulmedicines. A l l pregnant women should inform theirdoctorsabouttheirpregnancystatus;

Detectionandcareforhigh-riskpregnancies;

Screeningpregnantwomenforinfectionssuchassyphilisandpromptlytreatingit;

PreventingRhiso-immunization,asituationthatcanarisewhen the mother has Rhnegative blood group. ThedamagetothefoetuscanbepreventedbyadministrationofamedicinecalledAnti-Dimmunoglobulinimmediatelyafterthefirstdelivery;

Prompttreatmentforseverediarrhoeaandbraininfectionsduringchildhoodtoreducethechanceandextentofbraindamage;

Providing an enriching andstimulating environment forchildren from infancy to ensure proper intellectualdevelopment;

Chronic low-grade exposure to lead can impair braindevelopment;stepsshouldbetakentoreducethesourcesof environmental pollutants (such as using unleadedpetrol),and

Healtheducationaboutthenature,causesandpreventionof mentalretardation, especially duringthe formativeyears, canleadtohealthypracticesduringpregnancyandchild-rearing.

DigitalCreativity

58

Advancedmethods

These are technology-intensive and generally moreexpensivethanprimarypreventionmeasures.Fromapublichealthviewpoint,theyare of lesserimportanceinreducingtheoccurrenceofmentalretardationcomparedtothesimplemeasureslistedabove.Theseinclude:

Advancesinmodernmedicinehavemadeitpossibletodetectthepresenceofcertainstructural and functional abnormalities in the growingembryo in early pregnancy. The pregnancy could beaborted if the embryo is found to have a seriousabnormality.Someoftheseproceduresarerelativelysafe,inexpensive, and widely available.For instance,ultra-sonograminearlypregnancycandetectthepresence ofseveremalformationsofthebrainandotherorgans.Butothermethodsinvolvinggenetictestingbyamniocentesis(removing somefluidfromtheuterus ofthemother) orchorionic villus biopsy (taking a small piece fromtheplacenta of the mother) are expensive, technicallycomplex, and n o t widely availableandhavetheirownrisks.Oneshouldalso rememberthat there are manyunresolvedethicalissuesinapplyingthesetechniques.

There are somecauses of mentalretardationforwhichdefinitetreatmentisavailableintheformof medicinesorspecialdiets.Some examples arephenylketonuria, galactosemia, and hypothyroidism.Testsareavailabletodetecttheseconditionsatbirthitself.Iftheseconditionsare detectedatbirthandtreatmentisstartedimmediately,theoccurrenceofmentalretardationandotherproblemscanbeprevented.Testingallnewbornbabieshasbecomeastandardpracticeinmanywesterncountries. However, widespread use of neonatalscreening in SEAR Member Countries may not becurrentlypossiblebecauseoflimitationsintheprevailinghealthcare system.

Braindamageinverysicknewbornbabies cansometimesbepreventedbyprovidinghighlyspecializedandtechnology-intensivecareintheneonatalintensivecareunits.Theseareveryexpensivetoset upandthecostofcareisalsoveryhigh.Fromapublichealthpoint of view, the impact of these services on theprevalenceofmentalretardationmaybesmall.

!

!

!

Prenataldiagnosis/screening:

Neonatal screening:

Neonatalintensivecare:

59

! Prospectiveparents,especiallycoupleswhoalreadyhaveachildwithmentalretardationare keento know the risk o f their next child being affected.Professionaladviceto suchparentsmayhelpthemmakeinformed decisions about having the next child. Suchgeneticcounsellingcouldbeassimpleastellingparentswhohaveachildwithmentalretardationcausedbybraininfectionthattheriskfortheirnextchildisverylow.Oritcouldbeaverycomplicatedmatterneedingseveralcostlyinvestigationswhenageneticcauseissuspected.

Recently, therehavebeen rapid advances inthe fie ld ofgenetics.Anewsetoftechniquesforthedetectionofgeneticandotherdisorderscalledmoleculargeneticshasevolvedinthelastdecade.Thoughcostly,thetechniquesarelikelytobecomeinexpensiveand becomeapplicableforwideruseinfuture. One example i s the possibility of detecting thepresence ofDownssyndromebydoingabloodtestonthemotherduringearlypregnancy.Suchtestsperhapswouldbecomecommoninfuture.

ThisisanimportantapproachdevelopedbyWHO,visualizingpreventionatmanylevels.Fromthisviewpoint,allservices,including earlyinterventioncanbeconsideredaspreventivemeasures. The levels include health promotion, specificprotection, early detection and intervention, disabilitylimitation, and rehabilitation. Table 3 showsanoverviewofhow these levels are applicable in the area of mentalretardation.

Geneticcounselling:

Levelsofprevention

Yogeeta

58

Advancedmethods

These are technology-intensive and generally moreexpensivethanprimarypreventionmeasures.Fromapublichealthviewpoint,theyare of lesserimportanceinreducingtheoccurrenceofmentalretardationcomparedtothesimplemeasureslistedabove.Theseinclude:

Advancesinmodernmedicinehavemadeitpossibletodetectthepresenceofcertainstructural and functional abnormalities in the growingembryo in early pregnancy. The pregnancy could beaborted if the embryo is found to have a seriousabnormality.Someoftheseproceduresarerelativelysafe,inexpensive, and widely available.For instance,ultra-sonograminearlypregnancycandetectthepresence ofseveremalformationsofthebrainandotherorgans.Butothermethodsinvolvinggenetictestingbyamniocentesis(removing somefluidfromtheuterus ofthemother) orchorionic villus biopsy (taking a small piece fromtheplacenta of the mother) are expensive, technicallycomplex, and n o t widely availableandhavetheirownrisks.Oneshouldalso rememberthat there are manyunresolvedethicalissuesinapplyingthesetechniques.

There are somecauses of mentalretardationforwhichdefinitetreatmentisavailableintheformof medicinesorspecialdiets.Some examples arephenylketonuria, galactosemia, and hypothyroidism.Testsareavailabletodetecttheseconditionsatbirthitself.Iftheseconditionsare detectedatbirthandtreatmentisstartedimmediately,theoccurrenceofmentalretardationandotherproblemscanbeprevented.Testingallnewbornbabieshasbecomeastandardpracticeinmanywesterncountries. However, widespread use of neonatalscreening in SEAR Member Countries may not becurrentlypossiblebecauseoflimitationsintheprevailinghealthcare system.

Braindamageinverysicknewbornbabies cansometimesbepreventedbyprovidinghighlyspecializedandtechnology-intensivecareintheneonatalintensivecareunits.Theseareveryexpensivetoset upandthecostofcareisalsoveryhigh.Fromapublichealthpoint of view, the impact of these services on theprevalenceofmentalretardationmaybesmall.

!

!

!

Prenataldiagnosis/screening:

Neonatal screening:

Neonatalintensivecare:

59

! Prospectiveparents,especiallycoupleswhoalreadyhaveachildwithmentalretardationare keento know the risk o f their next child being affected.Professionaladviceto suchparentsmayhelpthemmakeinformed decisions about having the next child. Suchgeneticcounsellingcouldbeassimpleastellingparentswhohaveachildwithmentalretardationcausedbybraininfectionthattheriskfortheirnextchildisverylow.Oritcouldbeaverycomplicatedmatterneedingseveralcostlyinvestigationswhenageneticcauseissuspected.

Recently, therehavebeen rapid advances inthe fie ld ofgenetics.Anewsetoftechniquesforthedetectionofgeneticandotherdisorderscalledmoleculargeneticshasevolvedinthelastdecade.Thoughcostly,thetechniquesarelikelytobecomeinexpensiveand becomeapplicableforwideruseinfuture. One example i s the possibility of detecting thepresence ofDownssyndromebydoingabloodtestonthemotherduringearlypregnancy.Suchtestsperhapswouldbecomecommoninfuture.

ThisisanimportantapproachdevelopedbyWHO,visualizingpreventionatmanylevels.Fromthisviewpoint,allservices,including earlyinterventioncanbeconsideredaspreventivemeasures. The levels include health promotion, specificprotection, early detection and intervention, disabilitylimitation, and rehabilitation. Table 3 showsanoverviewofhow these levels are applicable in the area of mentalretardation.

Geneticcounselling:

Levelsofprevention

Yogeeta

60

Table3Levelsofprevention

PrimaryPrevention(preventingtheoccurrence Healthpromotionretardation)

Earlydiagnosis

Disabilitylimitation(preventingcomplications andrehabilitation

functions)

Healtheducation,especiallyforadolescentgirls

Neonatalscreeningfortreatabledisorders

developmental

Stimulation,trainingandeducation,andvocationalopportunities

Mainstreaming/integration

ImprovementofnutritionalstatusincommunityOptimumhealthcarefacilities

Improvementsinpre,periandpostnatalcare

Universaliodizationofsalt

Rubellaimmunizationforwomenbeforepregnancy

Folicacidadministrationinearlypregnancy

Geneticcounselling

Prenatalscreeningforcongenitalmalformationandgeneticdisorders

Detectionandcareforhigh-riskpregnancies

PreventionofdamagebecauseofRhincompatibility

Universalimmunizationforchildren

Intervention with“atrisk”babies

Earlydetectionandinterventionofdelay

Supportforfamilies

Parentalself-helpgroups

Specificprotection

(haltingdiseaseprogression) andtreatment

andmaximizationof

SecondaryPrevention

TertiaryPrevention

Level Approach Interventions

Primarypreventionstrategiesremaintheoptimumsolutions inSEARMemberCountries.Notonlyarethese effective,thereisno‘cure’formostcasesofmentalretardation,andknowledgeandfacilitiesforsecondaryandtertiarypreventionarelimited.

60

Table3Levelsofprevention

PrimaryPrevention(preventingtheoccurrence Healthpromotionretardation)

Earlydiagnosis

Disabilitylimitation(preventingcomplications andrehabilitation

functions)

Healtheducation,especiallyforadolescentgirls

Neonatalscreeningfortreatabledisorders

developmental

Stimulation,trainingandeducation,andvocationalopportunities

Mainstreaming/integration

ImprovementofnutritionalstatusincommunityOptimumhealthcarefacilities

Improvementsinpre,periandpostnatalcare

Universaliodizationofsalt

Rubellaimmunizationforwomenbeforepregnancy

Folicacidadministrationinearlypregnancy

Geneticcounselling

Prenatalscreeningforcongenitalmalformationandgeneticdisorders

Detectionandcareforhigh-riskpregnancies

PreventionofdamagebecauseofRhincompatibility

Universalimmunizationforchildren

Intervention with“atrisk”babies

Earlydetectionandinterventionofdelay

Supportforfamilies

Parentalself-helpgroups

Specificprotection

(haltingdiseaseprogression) andtreatment

andmaximizationof

SecondaryPrevention

TertiaryPrevention

Level Approach Interventions

Primarypreventionstrategiesremaintheoptimumsolutions inSEARMemberCountries.Notonlyarethese effective,thereisno‘cure’formostcasesofmentalretardation,andknowledgeandfacilitiesforsecondaryandtertiarypreventionarelimited.