Basic Concepts in ID

7/21/2019 Basic Concepts in ID

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Related Readings In Basic Concepts Of Intellectual Disabilities

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Intellectual de+elop,ental disorders$ to-ards a ne-na,e definition and fra,e-or/ for ,ental

retardationintellectual disability in ICD311

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7lthough intellectual disability has -idely replaced the ter, ,ental retardation the debate as to-hether this entity should be conceptualiEed as a health condition or as a disability has intensified as the

re+ision of the World @ealth OrganiEation !W@O#Fs International Classification of Diseases !ICD#

ad+ances. Defining intellectual disability as a health condition is central to retaining it in ICD -ith

significant i,plications for health policy and access to health ser+ices. ?his paper presents the consensusreached to date by the W@O ICD Wor/ing 9roup on the Classification of Intellectual Disabilities.

4iterature re+ie-s -ere conducted and a ,iGed Hualitati+e approach -as follo-ed in a series of ,eetings

to produce consensus3based reco,,endations co,bining prior eGpert /no-ledge and a+ailable e+idence.?he Wor/ing 9roup proposes replacing ,ental retardation -ith intellectual de+elop,ental disorders

defined as a group of de+elop,ental conditions characteriEed by significant i,pair,ent of cogniti+e

functions -hich are associated -ith li,itations of learning adapti+e beha+ior and s/ills. ?he Wor/ing9roup further ad+ises that intellectual de+elop,ental disorders be incorporated in the larger grouping

!parent category# of neurode+elop,ental disorders that current subcategories based on clinical se+erity

!i.e. ,ild ,oderate se+ere profound# be continued and that proble, beha+iors be re,o+ed fro, the

core classification structure of intellectual de+elop,ental disorders and instead described as associatedfeatures.

?he health condition currently defined as ,ental retardation !)R# is a cluster of syndro,es and

disorders characteriEed by lo- intelligence and associated li,itations in adapti+e beha+iour. :Ga,inationof the conceptual basis and ter,inology related to )R is rele+ant at present because the World @ealth

OrganiEation !W@O# is in the process of re+ising the International Classification of Diseases and Related

@ealth Proble,s ?enth Re+ision !ICD310# . ?his paper describes the rationale and process for replacing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188762/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188762/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188762/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188762/citedby/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188762/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188762/citedby/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3188762/


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the ICD310 conceptualiEation of )R -ith the concept of intellectual de+elop,ental disorders !IDD# in

ICD311.

IDD ha+e a long history -ithin the taGono,y of ,ental disorders.?heir pre+alence is around 1 in highinco,e countries and 2 in lo- and ,iddle inco,e !47)I# countries. ?hey ha+e a ,aJor i,pact on

functioning and disability throughout the life course and high co,orbidity -ith other ,ental disorders.

?hey are freHuently ,isdiagnosed are associated -ith poor access to health care ser+ices and in+ol+e+ery high costs for the health care syste, and for society as a -hole. In spite of these facts IDD are

largely disregarded in the ,ental health sector -here specific training on IDD and specialiEed ser+icesare li,ited to a fe- high inco,e pri,arily Western countries.

During the past 1& years an intense debate has ta/en place on ho- to properly na,e define and assessIDD.In su,,ary the ter, intellectual disability !ID# has -idely replaced )R for policy

ad,inistrati+e and legislati+e purposes in ,any de+eloped countries and in an increasing nu,ber of

47)I countries. @o-e+er the Huestion as to -hether IDD are a disability or a health condition re,ains a

hotly debated one -ith t-o co3eGisting approaches used as a basis for ne- conceptualiEations of thisentity. Based on a health condition perspecti+e )R is currently coded as a disorder in ICD !category

;.%0#. 7t the sa,e ti,e i,pair,ents in intellectual functions that are central co,ponents of IDD can be

classified -ithin W@OFs International Classification of ;unctioning Disability and @ealth !IC;# and

therefore seen as a part of disability.

Based on a disability perspecti+e the 7,erican 7ssociation on Intellectual and De+elop,ental

Disabilities !77IDD# has asse,bled a co,prehensi+e definition classification and syste, of supports

that focus ,ainly on functioning adapti+e beha+iour and support needs and are consistent -ith theconceptual ,odel proposed by the IC;. 7ccording to 77IDD ID is a disability characteriEed by

significant li,itations both in intellectual functioning and in adapti+e beha+iour as eGpressed in

conceptual social and practical adapti+e s/ills. ?his disability originates before age 1(.

In contrast the WP7 6ection on Psychiatry of Intellectual Disability considers IDD to be a healthcondition$ a syndro,ic grouping or ,eta3syndro,e analogous to the construct of de,entia -hich is

characteriEed by a deficit in cogniti+e functioning prior to the acHuisition of s/ills through learning. ?heintensity of the deficit is such that it interferes in a significant -ay -ith indi+idual nor,al functioning aseGpressed in li,itations in acti+ities and restriction in participation !disabilities#.

?he debate regarding these differing conceptualiEations of IDD has gained ,o,entu, and i,portance in

the conteGt of the current re+ision of the t-o ,aJor classifications of ,ental disorders$ the ICD310 and

the 7,erican Psychiatric 7ssociation !7P7#Fs Diagnostic and 6tatistical )anual of )ental Disorders!D6)#. 7n eGtre,e position in this debate suggests that if IDD are defined solely as disabilities and not as

a health condition they should be deleted fro, the ICD and classified using only codes fro, the IC;.

Regardless of -hether there is conceptual +alidity to this position it is the ICD ' not the IC; ' that is-idely used by the 1KL W@O ,e,ber countries to define the responsibilities of go+ern,ents to pro+ide

health care and other ser+ices to their citiEens. ICD categories including categories related to IDD areused throughout the -orld to specify -hich people are eligible for -hat health care educational andsocial ser+ices under -hat conditions. ?herefore re,o+ing IDD fro, the list of health conditions -ould

ha+e a ,aJor i,pact on the +isibility of IDD on national and global health statistics on health policy and

on the ser+ices a+ailable to this +ulnerable population.

Con+ersely if IDD are considered solely as a health condition then the ter, disability should not beused to refer to the,. But this -ould be at odds -ith the position already adopted by ,any go+ern,ents

and international organiEations. 6uch a solution ,ight be Judged as a reductionist bio,edical approach

and reJected by ,any /ey international sta/eholders users and eGperts in the field. 7dditionally thereare ,aJor unresol+ed Huestions in the definition of IDD as a health condition including in -hat part of a


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health classification IDD should be placed the age cut3off for onset and the nature of the association

bet-een cogniti+e i,pair,ents and beha+ioural s/ills.

Collecti+e eGperience related to ter,inology and ontology in the IDD field ,ay help to clarify theconceptualiEation of the disease and disability co,ponents in ICD311 and IC; that is -here the health

condition co,ponent of IDD can be appropriately placed -ithin a classification of diseases and disorders

and ho- their functional conseHuences can be conceptualiEed using a classification of functioning anddisability. 6uch an approach ,ay pro+ide alternati+e solutions to si,ilar proble,s related to other

,ental disorders that ,ay be associated -ith disability.

?he -or/ described in this article has been conducted in the conteGt of the re+ision of the classification of

,ental and beha+ioural disorders -ithin the ICD310 led by the W@O Depart,ent of )ental @ealth and6ubstance 7buse -hich has been described else-here. In the area of IDD an i,portant purpose of the

ICD311 -ill be to pro+ide tools to enable ,ore -idespread efficient and accurate identification and

prioritiEation of persons -ith IDD -ho need ser+ices. In ,ost countries ser+ice eligibility and treat,ent

selection for persons -ith IDD are hea+ily influenced by diagnostic classification. Persons -ith IDD are,ore li/ely to recei+e the ser+ices they need if health -or/ers in the settings -here they are ,ost li/ely to

be seen ha+e a diagnostic syste, that is reliable +alid clinically useful and feasible. It is +ery unli/ely

that such frontline personnel -ill be psychiatrists and in 47)I countries they are unli/ely to be

specialist ,ental health professionals of any /ind and are often not physicians. ?hese factors ha+estrongly influenced the conceptualiEation of the tas/s and -or/flo- for the re+ision of the ICD310 as -ell

as the co,position of ICD re+ision Wor/ing 9roups including the one on IDD. ?he re+ision process isalso influenced by the ne-ly created Content )odel for the o+erall ICD311 -hich deter,ines the

structure and nature of the infor,ation to be pro+ided for each diagnostic category integrating the

category -ithin ,uch larger infor,ational infrastructure

7 ,iGed Hualitati+e approach -as used by the Wor/ing 9roup on IDD to co,bine a+ailable e+idence-ith prior eGpert /no-ledge. ?his approach -as applied in three face3to3face ,eetings se+en

teleconferences and electronic eGchanges to generate consensus on the proposals sub,itted to the ICD

International 7d+isory 9roup. ?his paper focuses on the proposals agreed upon by the Wor/ing 9roup

related to the parent or supra3ordinal category for IDD the na,e of the entity its definition and itssubtypes.

O5?CO): O; ?@: WORAI>9 9RO5PF6 DI6C566IO>6

Place,ent in the classification

?here -as consensus a,ong the Wor/ing 9roup on the need to relocate IDD in the larger grouping

!supraordinal or parent category# of neurode+elop,ental disorders. In ontological ter,inologysubcategories are called children categories and the supraordinal category is called the parent category.

?his position recogniEes IDD as a health condition and not solely as a constellation of disabilities.

?er,inology

?he ter, intellectual -as fa+oured because in ,ost countries it is -ell understood and -idely used

and is broadly acceptable in the conteGt of clinical and policy applications. In parallel -ith current

definitions of intelligence it does not refer to a unitary characteristic but rather is an u,brella ter, thatincludes cogniti+e functioning adapti+e beha+iour and learning that is age3appropriate and ,eets the

standards of culture3appropriate de,ands of daily life. :+en though cogniti+e ,ay be seen as a ,ore


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precise ter, that ,ore closely reflects underlying pheno,ena of IDD it also has a broader ,eaning in

psychology. ?he use of the ter, cogniti+e in connection -ith de,entia and schiEophrenia ,ay also

cause confusion.

9eneral support -as eGpressed for adopting the ter, de+elop,ental in that it refers to a period of

ti,e during -hich the brain and its functions are de+eloping. ?he ter, de+elop,ental i,plies a

process and a lifespan perspecti+e and e,phasiEes the dyna,ic nature of IDD.

During the discussion three -ords e,erged as possible descriptors of the entity in Huestion$i,pair,ent difficulties disorder. ?he ter, i,pair,ent is specifically used in the IC; to refer

to proble,s in body functions and body structures that ,ay be associated -ith a -ide +ariety of health

conditions. ?he ter, difficulties -as proposed to a+oid ,edical connotations and because it is lessli/ely to be reJected by consu,ers fa,ily groups and care pro+iders. It ,ay i,ply that the person can

o+erco,e hisher proble,s -ith so,e help or support but it ,ay also be confusing because for ,any

people these difficulties are long3standing and -ill not be o+erco,e co,pletely. ?he ter, spectru, -as

also discussed but it -as discarded due to its lo- taGono,ical +alue -ithin a categorical classification.

W@OFs Clinical Descriptions and Diagnostic 9uidelines for ICD310 )ental and Beha+ioural Disorders

define a disorder as clinically recogniEable set of sy,pto,s or beha+iour that is usually associated

-ith interference -ith personal functions or -ith distress. ?he ter, disorder -as seen as ha+ing utilitybecause it places intellectual disability at the sa,e le+el of other ,aJor disorders such as de,entia or

schiEophrenia. ?he ter, i,plies that it is not Just a Huestion of intelligence and it fits -ith the eGistence

of ,ultiple etiologies and co,orbidities and -ith the +ariability of IDD.

Definition

It -as agreed that the definition of IDD should include ter,s related to the de+elop,ental origin of the

brain i,pair,ent ,anifestations in cogniti+e functioning and adapti+e deficits aetiology course and

outco,es. ?he Wor/ing 9roupFs proposed definition and its ,ain descriptors are sho-n in ?able 1

?able 1

?able 1 Definition and ,ain descriptors of intellectual de+elop,ental disorders !IDD# agreed by the ICD

Wor/ing 9roup

Definition

7 group of de+elop,ental conditions characteriEed by significant i,pair,ent

of cogniti+e functions -hich are associated -ith li,itations of learning

adapti+e beha+iour and s/ills.

)ain descriptors

M IDD is characteriEed by a ,ar/ed i,pair,ent of core cogniti+e functions

necessary for the de+elop,ent of /no-ledge reasoning and sy,bolic

representation of the le+el eGpected of oneFs age peers cultural and co,,unity

en+iron,ent. >e+ertheless +ery different patterns of cogniti+e i,pair,ents

appear for particular conditions of IDD.

M In general persons -ith IDD ha+e difficulties -ith +erbal co,prehension


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perceptual reasoning -or/ing ,e,ory and processing speed.

M ?he cogniti+e i,pair,ent in persons -ith IDD is associated to difficulties in

different do,ains of learning including acade,ic and practical /no-ledge.

M Persons -ith IDD typically ,anifest difficulties in adapti+e beha+iour that is

,eeting the de,ands of daily life eGpected for oneFs age peers cultural and

co,,unity en+iron,ent. ?hese difficulties include li,itations in rele+ant

conceptual social and practical s/ills.

M Persons -ith IDD often ha+e difficulties in ,anaging their beha+iour

e,otions and interpersonal relationships and ,aintaining ,oti+ation in the

learning process.

M IDD is a life span condition reHuiring consideration of de+elop,ental stages

and life transitions.

?able 1 Definition and ,ain descriptors of intellectual de+elop,ental disorders !IDD# agreed by the ICDWor/ing 9roup

6ubcategories

?he Wor/ing 9roup reached a consensus to ,aintain the subcategories !children categories#corresponding to the four clinical se+erity le+els of ,ild ,oderate se+ere and profound IDD in addition

to the pro+isional categories of other and unspecified IDD.

7 nu,ber of i,portant organiEations in the field ha+e called for a discontinuation of children categoriesbased solely on IN. ?he 77IDD for eGa,ple proposes a ,ultidi,ensional syste, for classification andconsiders IN ranges insufficient to be the sole deter,inant of cogniti+e functioning or clinical se+erity

le+el. ?he Wor/ing 9roup argued that the deter,ination of clinical se+erity le+els for IDD should rely on

a clinical description of the characteristics of each subcategory and that the IN score should beconsidered as one clinical descriptor a,ong others also considered i,portant in deter,ining se+erity

le+el.

?he Wor/ing 9roup decided against discontinuing clinical se+erity le+els due to their current diagnostic

and clinical utility. ;or eGa,ple increasing se+erity of IDD has been sho-n to be associated -ith lo-erle+els of self3deter,ination in choosing li+ing arrange,ents including -here and -ith -ho, to li+e.

?hose -ith profound IDD are ,uch ,ore li/ely to li+e in a long3ter, care facility than those -ith ,ildIDD and are less often able to deter,ine their li+ing arrange,ent. In addition se+erity le+els are alreadyin -ide use in ,any public health syste,s deter,ining the le+el of ser+ices and benefits pro+ided. ?hey

,ay be helpful for co,,unication bet-een professionals in different disciplines fa,ilies and users.

?he subcategoriEation by clinical se+erity le+els does not contradict the use of other approaches to

subclassification including ,ultidi,ensional approaches ai,ed at connecting the IDD diagnosis toneeded supports including inter+ention and planning . In the future subcategoriEation based on clinical

se+erity le+els should be co,ple,ented by subcategoriEation based on functional and personal

characteristics andor supports needed !IC;#. 7 nu,ber of tools ha+e been de+eloped for classifying


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support needs and rele+ant characteristics of persons -ith IDD but this field is still in its infancy and

has not progressed to the point that such ,easures are a+ailable for -orld-ide use.

?he subcategories of other and unspecified IDD -ill be ,aintained in the ICD311 as they are standardco,ponents of the ICD311 taGono,ical syste,. @o-e+er they -ill be used as pro+isional diagnoses for

specific age3defined populations. In children less than L years of age there are -ell3/no-n difficulties in

diagnosing IDD or se+erity le+el due to the lac/ of reliable cogniti+e assess,ent tools and the te,poralinstability of ,easured cogniti+e i,pair,ents . ;or these reasons it has been agreed that the pro+isional

diagnosis of unspecified IDD should be used for all infants and children less than L years of age -heree+idence eGists of significant cogniti+e i,pair,ent. While a subset of these children -ill not go on to ,eet

criteria for IDD the ability to ,a/e this transitional diagnosis allo-s for the pro+ision of earlyinter+ention ser+ices and clinical e+aluation that are critical to i,pro+ing de+elop,ental outco,e.

?he subcategory of other IDD is a pro+isional diagnosis to be used -hen IDD can be diagnosed but

-here clinical se+erity le+el cannot be deter,ined due to barriers in assess,ent such as those presented

by certain proble, beha+iours psychiatric disorders sensory or physical i,pair,ents. @o-e+er thispro+isional diagnosis is reser+ed for persons o+er the age of L years of age so that the subcategories of

unspecified and other IDD are ,utually eGclusi+e.

Proble, beha+iours

?he Wor/ing 9roup agreed that proble, beha+iours though +ery rele+ant to treat,ent and ser+ice

usage are not a core co,ponent of the linear structure of IDD as in ICD310 and therefore they ,ay be

considered associated features rather than being subcategories or specifiers for IDD.

R:7C?IO>

?o the best of our /no-ledge this is the -idest international effort underta/en to date to reach a

consensus on the na,e and definition of IDD. It has in+ol+ed "0 eGperts fro, 1" countries representing

the different W@O regions and eGperts fro, both high inco,e and de+eloping countries. ?his processhas ta/en place in the conteGt of an intense social and scientific debate on ho- to properly na,e and

define IDD -hich ,ay ha+e broad i,plications for users and fa,ilies and for eligibility and care

pro+ision in the future.

One of the ,aJor changes reco,,ended by the Wor/ing 9roup is the integration of IDD -ithneurode+elop,ental disorders. In ICD3K IDD -ere separated into a different large grouping fro, other

neurode+elop,ental disorders an action intended to pro+ide greater +isibility to these disorders and to

underscore their co,,on co3occurrence -ith other de+elop,ental disorders. 6ubseHuently the 7P7FsD6)3III -hich -as ,ultiaGial eGcluded )R fro, 7Gis I -hile analogous ,eta3syndro,ic categories

,ore characteristic of adults !e.g. de,entia# -ere retained as part of the ,ain aGis of ,ental disorders.

5nfortunately the separation of IDD diagnoses fro, other de+elop,ental disorders does not see, toha+e spurred the de+elop,ent of ,ore specifically targeted ser+ices in ,ost countries as ,ay be deduced

fro, W@OFs 9lobal 7tlas on Intellectual Disabilities . ?he incorporation of IDD in the large grouping of

neurode+elop,ental disorders -ill ha+e significant i,plications for this supraordinal or parent categoryand it ,ay reHuire a re3analysis of the hierarchy and the conceptual ,ap of neurode+elop,ental

disorders to a+oid double coding !e.g. in the case of RettFs and fragile syndro,es#.

?he reco,,ended na,e and definition of IDD clearly identify the, as a health condition. ?hese

reco,,endations are consistent -ith the 200( position paper by the WP7 6ection on Psychiatry ofIntellectual Disability -hich reco,,ended a polyse,ic3polyno,ial approach for co,pleG entities such

as IDD allo-ing for the use of ,ore than one na,e and ,eaning for different audiences and purposes so


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long as their relationship and se,antic si,ilarity is una,biguous and for,ally defined . It is i,portant

to ha+e a clear description of the different ,eanings and uses of these ter,s in the scientific social and

policy arenas.

Disabilities should be seen as potential conseHuences of IDD health conditions. ?his is consistent -ith the

approach pro,oted by the W@O -ithin the ;a,ily of International Classifications in -hich

conceptually separate though clinically o+erlapping disease entities and functional i,pacts are codedusing the ICD and the IC;. ?he position adopted by the Wor/ing 9roup on IDD ,ay pro+ide an eGa,ple

on ho- to for,ulate the hierarchy and the operationaliEation of the disease and disability co,ponents inICD and IC; -hich -ould also apply to other neurode+elop,ental disorders !e.g. autis, specific

de+elop,ental disorders# and ,ore broadly to other ,ental disorders !e.g. de,entia schiEophrenia#.

?he na,e and definition of IDD proposed by the Wor/ing 9roup do not conflict -ith the use of the

ter,inology of ID the functional definition appro+ed by 77IDD or a functional definition based on the

IC; ,odel. ?he proposed ,odel preser+es the distinction ,ade in the W@O ;a,ily of International

Classifications and therefore in international health policy bet-een disease and disorder on the onehand and the functional i,pacts of health conditions !i.e. disability# on the other .

In conclusion the Wor/ing 9roup conceptualiEed IDD as a ,eta3syndro,ic health condition parallel to

other ,eta3syndro,ic conditions such as de,entia -hich ,ay be related to a +ariety of specificetiologies. ?he Wor/ing 9roup endorses a polyse,ic3polyno,ial approach to the classification of IDD.

?his approach distinguishes bet-een IDD !a clinical ,eta3syndro,e# and ID !the functioningdisability

counterpart# -hich ha+e different scientific social and policy applications. ?he Wor/ing 9roup belie+es

that this approach best supports the public health ,ission of W@O and the pro+ision of appropriateser+ices and opportunities to persons -ith IDD.

R:;:R:>C:6

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Prepared by $ >o,ar B. Capoy 6ub,itted to$ Dr. 9regorio

Basic Concepts in ID

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