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Children withChildren with
Disabilities:Disabilities:
Experiences, ChallengesExperiences, Challenges
Anita RajahAnita Rajah
Dept of Clinical PsychologyDept of Clinical PsychologyAmrita Institute of Medical Sciences,Amrita Institute of Medical Sciences,
KochiKochi
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Magnitude of the problemMagnitude of the problem
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IdentificationIdentification
Greater possibility ofGreater possibility of
identification whenidentification when
staying in urban areasstaying in urban areas
HelpHelp--seeking behaviourseeking behaviour
influenced by severalinfluenced by several
factorsfactors
Accessibility, availabilityAccessibility, availabilityof helpof help
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What these children may not attainWhat these children may not attain
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And therefore, may miss out on this..And therefore, may miss out on this..
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AnnaAnna 6 yr old nursery student6 yr old nursery student
Reported by teachers as suddenly unresponsiveReported by teachers as suddenly unresponsive--
would stop whatever she was doing, starewould stop whatever she was doing, stare
vacantly into space for a while, would notvacantly into space for a while, would not
respond to teachers, friends, calling herrespond to teachers, friends, calling her
Parents felt that she was okay, came for helpParents felt that she was okay, came for help
only because a cousin had recommendedonly because a cousin had recommended
psychological evaluationpsychological evaluation
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JijoJijo
4 yr old boy, older of 2 children4 yr old boy, older of 2 children Developed wounds, bruises in his jointsDeveloped wounds, bruises in his joints
whenever he hit somethingwhenever he hit something
Parents prevented him from playing, toldParents prevented him from playing, toldteachers at school to restrict his activitiesteachers at school to restrict his activities
Pediatrician has told parents that they shouldPediatrician has told parents that they should
take him for further tests with specialisttake him for further tests with specialist Parents confused, upsetParents confused, upset
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AhmedAhmed
11 yrs old11 yrs old
Road traffic accident 6 months agoRoad traffic accident 6 months ago
Fractured his right hand and legFractured his right hand and leg Lost his father,( was working in the gulf, comesLost his father,( was working in the gulf, comes
home once in two years)home once in two years)
Difficulties in concentration, unable to completeDifficulties in concentration, unable to completehis home work, poor marks at school, does nothis home work, poor marks at school, does not
feel interested in studiesfeel interested in studies
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What does having a child withWhat does having a child with
disability really mean?disability really mean?Endless seriesEndless series
Constant careConstant care
TimeTime
EffortEffort
MoneyMoney
Neglect of othersNeglect of others
No light at the end of theNo light at the end of thetunneltunnel
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Other related needsOther related needs
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Types of disabilitiesTypes of disabilities
Different types of classificationDifferent types of classification
GeneticGenetic-- CongenitalCongenital AcquiredAcquired
EarlyEarly Late onsetLate onset MildMild-- ModerateModerate-- SevereSevere
PhysicalPhysical MentalMental
PrimaryPrimary-- SecondarySecondary
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Sensory deficitsSensory deficits
HearingHearing
VisionVision
MotorMotor
Caused by inadequacy inCaused by inadequacy in
sense organssense organs
Or faulty brainOr faulty brain
developmentdevelopment
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Cerebral palsyCerebral palsy
Affects both physical asAffects both physical as
well as mentalwell as mental
developmentdevelopment
Rigidity of limbsRigidity of limbs
Clumsiness ofClumsiness of
movementsmovements
Psychomotor slowingPsychomotor slowing Can have normalCan have normal
intelligenceintelligence
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Abnormal development of the brainAbnormal development of the brain
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EpilepsyEpilepsy
Abnormal firing of neuronsAbnormal firing of neurons
Can be in one area orCan be in one area or
generalised to all parts of thegeneralised to all parts of the
brainbrain Can be in response to certainCan be in response to certain
situations or stimulisituations or stimuli
Need detailed investigationsNeed detailed investigations
and longand long--term medicationterm medication
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Trauma to the BrainTrauma to the Brain
Otherwise normal childOtherwise normal child
Injury due to infection,Injury due to infection,
traumatrauma
Disrupts normalDisrupts normal
development in the childdevelopment in the child
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HemophiliaHemophilia
Bleeding DisorderBleeding Disorder
Usually affects only malesUsually affects only males
Deficiency of clotting factorDeficiency of clotting factor Genetic transmissionGenetic transmission
Also through gene mutationAlso through gene mutation
No complete cure possibleNo complete cure possible Factor infusion whenever necessaryFactor infusion whenever necessary
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DiabetesDiabetes
Inadequacy of insulin secretionInadequacy of insulin secretion
Oral supplement or injectionOral supplement or injection Diet restrictionsDiet restrictions
Fear of injuryFear of injury
Delay in healingDelay in healing
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Effects of disabilityEffects of disability
PhysicalPhysical
EmotionalEmotional
SocialSocial EducationalEducational
EconomicEconomic
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Impact of Childs Disability onImpact of Childs Disability on
CommunityCommunity ParentsParents
SiblingsSiblings
NeighbourhoodNeighbourhood Extended family membersExtended family members
SchoolSchool
PeersPeers
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WHO ICF ModelWHO ICF Model HANDBOOK.htm#Handbookpg8
WHO 2001
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International ClassificationofInternational Classificationof
Function, Disability & Health (ICF)Function, Disability & Health (ICF)
Developedby WHODevelopedby WHO -- 19921992--2001.2001.
ICF model:ICF model:
recognisesrecognises disability as a universal human experience .disability as a universal human experience .shifting the focus from cause to impact .. takes into accountshifting the focus from cause to impact .. takes into account
the social aspects of disabilitythe social aspects of disability
PrimaryfunctionistocodethecomponentsofhealthPrimaryfunctionistocodethecomponentsofhealthandtheirinteractionsandtheirinteractions
Purpose:Purpose: NegativeNegative NeutraltermsNeutralterms
ExpandthinkingbeyondprimaryimpairmentsExpandthinkingbeyondprimaryimpairments
Movesfrom medicaltobioMovesfrom medicaltobio--psychosocialapproachpsychosocialapproach
WHO 2001
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Learning OutcomesLearning Outcomes
WHO International Classification of Function, Disability &WHO International Classification of Function, Disability &Health (ICF)Health (ICF)
Detection & DiagnosisDetection & Diagnosis Toincreaseknowledgeofthescreening methodsfordevelopmentaldisabilitiesToincreaseknowledgeofthescreening methodsfordevelopmentaldisabilities
CopingCoping TorecognisefactorsinfluencingafamilyscopingabilityTorecognisefactorsinfluencingafamilyscopingability
Toidentify & applystrategiestofacilitatefamilycopingToidentify & applystrategiestofacilitatefamilycoping
Challenging BehaviourChallenging Behaviour
TorecognisetypesofchallengingbehaviourTorecognisetypesofchallengingbehaviour Toidentify & applystrategiestoaddresschallengingbehaviourToidentify & applystrategiestoaddresschallengingbehaviour
Family InvolvementFamily Involvement TorecognisebarrierstofamilyinvolvementTorecognisebarrierstofamilyinvolvement
Toidentify & applystrategiestofacilitatefamilyinvolvementToidentify & applystrategiestofacilitatefamilyinvolvement
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What is the help available?What is the help available?
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AnnaAnna
Diagnosis of seizure disorderDiagnosis of seizure disorder
Moderate disability but not permanentModerate disability but not permanent
Medication until she fits are under controlMedication until she fits are under control Restriction on certain activitiesRestriction on certain activities
Likely to have difficulties at schoolLikely to have difficulties at school-- slowness,slowness,
difficulties in concentrationdifficulties in concentration
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JijoJijo
Diagnosis of hemophiliaDiagnosis of hemophilia
Father blamed mother for being the cause of theFather blamed mother for being the cause of the
problem; motherproblem; mother-- guilty, upsetguilty, upset HospitalisationHospitalisation whenever factor infusion waswhenever factor infusion was
necessary, expensive, missed out on schoolnecessary, expensive, missed out on school
Unco
Unco--operative child, refused to followoperative child, refused to followinstructions, threw tantrumsinstructions, threw tantrums
Developed permanent limp in legsDeveloped permanent limp in legs
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AhmedAhmed
Initially in griefInitially in grief
Gradually learned to cope with situationGradually learned to cope with situation
Physical disability diminished over timePhysical disability diminished over time Emotional loss persisted for a whileEmotional loss persisted for a while