Schalock 2011
Schalock 2011
Schalock 2011
CONCEPTUAL PAPER
ROBERT L. SCHALOCK
Abstract
This article addresses two major areas concerned with the evolving understanding of the construct of intellectual disabil-
ity. The first part of the article discusses current answers to five critical questions that have revolved around the general
question, “What is Intellectual Disability?” These five are what to call the phenomenon, how to explain the phenomenon,
how to define the phenomenon and determine who is a member of the class, how to classify persons so defined and iden-
tified, and how to establish public policy regarding such persons. The second part of the article discusses four critical
issues that will impact both our future understanding of the construct and the approach taken to persons with intellectual
disability. These four critical issues relate to the conceptualisation and measurement of intellectual functioning, the con-
stitutive definition of intellectual disability, the alignment of clinical functions related to diagnosis, classification, and
planning supports, and how the field resolves a number of emerging epistemological issues.
For personal use only.
Keywords: classifying, constitutive definition, defining, etiology, intellectual disability, intellectual functioning, naming,
operational definition
Correspondence: Robert L. Schalock, PhD, PO Box 285, Chewelah, Washington 99109, USA. E-mail: rschalock@ultraplix.com
ISSN 1366-8250 print/ISSN 1469-9532 online © 2011 Australasian Society for Intellectual Disability, Inc.
DOI: 10.3109/13668250.2011.624087
228 R. L. Schalock
member of the American Association on Intellectual terms that have been used historically such as men-
and Developmental Disability (AAIDD; formerly tal retardation or mental deficiency (Schroeder,
AAMR) committee that developed and published Gerry, Gertz, & Velazquez, 2002), and is more con-
the 1992, 2002, and 2010 definition, classification, sistent with international terminology, including
and systems of supports manuals. Second, I have journal titles, published research, and organisation
been involved in cross-cultural research on ID-re- names (Parmenter 2004; Schalock, Luckasson, &
lated definitional and application issues (Schalock, Shogren, 2007; Schroeder et al., 2002; Wehmeyer
2010; Schalock & Luckasson, 2004) and the inter- et al., 2008).
national implications of the emerging disability par-
adigm on policies and practices (Schalock, 2004).
Explaining the phenomenon
Third, I have discussed the relationships among the
articles of the 2006 United Nations’ Convention on Explanations of the phenomenon (i.e., intellectual
the Rights of Persons with Disabilities, the concept disability) have varied historically from those rooted
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of quality of life, and the measurement and use of in deification to those rooted in defectology. Cur-
personal outcomes to enhance public policy and ser- rently, ID is viewed as a disability characterised by
vice delivery system practices (Schalock, Bonham, significant limitations in intellectual functioning and
& Verdugo, 2008). Finally, I have suggested ways to adaptive behaviour and manifest during the develop-
integrate the World Health Organization’s Interna- mental period. ID is also a multidimensional state
tional Classification of Functioning, Disability and of human functioning. Understanding these two key
Health (WHO-ICF) and AAIDD models of dis- concepts—the construct of disability and the mul-
ability, quality of life, and the supports paradigm in tidimensionality of human functioning—is essential
order to enhance professional practices in the field of to not only explaining the phenomenon, but also in
ID (Buntinx & Schalock, 2010). These experiences providing a framework to understand and explain
are reflected throughout the article, which attempts its etiology.
to address both US and international perspectives
For personal use only.
six components: health condition (disability and ing understanding of the construct of ID. Histori-
disease), body functions and structures (impair- cally, four approaches have been used to identify the
ments), activities, participation, environmental class of persons with ID: social, clinical, intellectual,
factors, and personal factors. The AAIDD model and dual-criterion. Initially, persons (with ID) were
includes five components of human functioning defined or identified because they failed to adapt
(intellectual abilities, adaptive behaviour, health, socially to their environment. Since an emphasis
participation, and context) and focuses on the key on intelligence and the role of “intelligent people”
role played by individualised supports in enhanc- in society was to come later, the oldest historical
ing the level of human functioning (Buntinx & approach was to focus on social behaviour and the
Schalock, 2010). “natural behavioral prototype” (Greenspan, 2003).
With the rise of the medical model, the focus for
The etiology of intellectual disability. Increasingly, the defining the class shifted to one’s symptom com-
etiology of ID is conceptualised as a multifactorial plex and clinical syndrome. This approach did not
construct composed of four categories of risk fac- negate the social criterion, but gradually there
tors that interact across time, including across the was a shift toward the role of organicity, heredity,
life of the individual and across generations from pathology, and the need for segregation (Devlieger
parent to child. This multifactorial understanding et al., 2003). With the emergence of intelligence as
of etiology is replacing the historical approach that a viable construct to explain the class and the rise
divided etiology of ID (referred to then as “mental of the mental testing movement, the criterion for
retardation”) into two broad types: those due to defining the class shifted to intellectual functioning as
biological origin and those due to psychosocial dis- measured by an IQ test. This emphasis led to the
advantage. The multifactorial approach to etiology emergence of IQ-based statistical norms as a way to
expands the list of causal factors in two directions: both define the class and classify individuals within it
types of factors (biomedical, social, behavioural, (Devlieger, 2003). In reference to the dual criterion
educational) and timing of factors (prenatal, peri- approach, the first attempt to use both intellectual
natal, and postnatal). Table 1, which is based on and social criteria to define the class was found in the
the work of Emerson, Fujiura, and Hatton (2007), 1959 American Association on Mental Deficiency’s
Schalock et al. (2010), and Walker et al. (2007), (AAMD) manual (Heber, 1959), which defined ID
summarises key risk factors from each of these (then referred to as “mental deficiency”) as referring
perspectives. to sub-average general intellectual functioning which
230 R. L. Schalock
Table 1. Examples of prenatal, perinatal, and postnatal risk factors in intellectual disability
Prenatal
• Biomedical: chromosomal disorders, metabolic disorders, transplacental infections (e.g., rubella, herpes, HIV), exposure to toxins
or teratogens (e.g., alcohol, lead, mercury), undernutrition (e.g., maternal iodine deficiency)
• Social: poverty, maternal malnutrition, domestic violence, lack of prenatal care
• Behavioural: parental drug use, parental immaturity
• Educational: parental disability without supports, lack of educational opportunities
Perinatal
• Biomedical: prematurity, birth injury, hypoxia, neonatal disorders, rhesus incompatibility
• Social: lack of access to birth care
• Behavioural: parental rejection of caretaking, parental abandonment of child
• Educational: lack of medical referral for intervention services at discharge
Postnatal
• Biomedical: traumatic brain injury, malnutrition, degenerative/seizure disorders, toxins
• Social: lack of adequate stimulation, family poverty, chronic illness, institutionalisation
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originates during the developmental period and is to age 18. Each of the first two criteria (significant
associated with impairments in maturation, learn- limitations in intellectual functioning and adaptive
ing, and social adjustments. In the 1961 AAMD behaviour) is defined in terms of cut-off scores and
manual (Heber, 1961), maturation, learning and interpreted in reference to a statistical confidence
social adjustments were folded into a single, largely interval (Schalock et al., 2010). More specifically,
undefined new term, “adaptive behavior.” The dual- the “significant limitations in intellectual function-
criterion approach has also included age of onset as ing” criterion for a diagnosis of ID is an IQ score
an accompanying element. that is approximately two standard deviations below
For personal use only.
be established with parameters of at least one SEM categorisation of various kinds of observations. Clas-
(66% probability) or parameters of two SEM (95% sification systems are used typically for four purposes:
probability). funding, research, services/supports, and communi-
cation about selected characteristics of persons and
Constitutive definition of intellectual disability. Although their environments. Three classification systems are
the operational criteria (based on the operational currently used most frequently internationally in the
definition of ID) for diagnosis have been generally field of ID: the International Classification of Diseases,
consistent for the last 50 ⫹ years (Schalock et al., Ninth Revision, Clinical Modification (ICD-9-CM;
2007), the construct underlying the term ID (and Medicode, 1998), the International Classification of
thus, the constitutive definition of ID) has changed Diseases, Tenth Revision (ICD-10; WHO, 1993),
significantly due to the impact of the social-ecological and the Diagnostic and Statistical Manual of Mental
model of disability. In this model, ID is understood Disorders, Fourth Edition (DSM-IV; American Psy-
as a multidimensional state of human functioning in chiatric Association, 2000). In each system, mental
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relation to environmental demands. retardation (the term ID is not used) is coded pri-
A constitutive definition of ID is used to define marily on the basis of full scale IQ scores.
the construct in relation to other constructs and thus As the field of ID moves increasingly to an eco-
helps to understand better the theoretical underpin- logical focus and a supports paradigm, a number
nings of the construct. For example, Wehmeyer et al. of current policies and practices have emerged that
(2008) discuss the significant differences between the require a broader, multidimensional approach to
construct that underlies the term intellectual disability classification. These changes relate to: (a) group-
and the construct underlying the term mental retarda- ing for reimbursement/funding on the basis of some
tion. The major difference is in regard to where the combination and weighting of levels of assessed
disability resides: the former construct (mental retarda- support need, level of adaptive behaviour, health
tion) viewed the disability as a defect within the per- status, and/or contextual factors such as residential
son, while the current construct (intellectual disabil- platform and geographical location; (b) research
For personal use only.
ity) views the disability as the fit between the person’s methods that focus on multidimensional predictors
capacities and the context within which the person is of human functioning and/or desired personal out-
to function. The term mental retardation referred to a comes; and (c) individualised services and supports
condition internal to the person (e.g., slowness of mind); based on the pattern and intensity of assessed sup-
intellectual disability refers to a state of functioning, not port needs across dimensions of human functioning
a condition. Both constructions see the condition (as and life activity areas. As a result of these changes in
in mental retardation) or the state of functioning (as policies and practices, multidimensional classifica-
in intellectual disability) as best defined in terms of tion frameworks are emerging that reflect the multi-
limitations in typical human functioning. dimensionality of human functioning discussed ear-
Thus, a constitutive definition of ID defines the phe- lier. One such framework, which is consistent with
nomenon in terms of limitations in human functioning, both the AAIDD system (Schalock et el., 2010) and
emphasises an understanding of disability consistent the ICF model (WHO, 2001), is shown in Table 2.
with an ecological and multidimensional perspective, Although “exemplary measures” are referenced in
and recognises the significant role that individualised the table, it is beyond the scope of this article to list
supports play in improving human functioning. The specific assessment instruments or scales. Further-
advantages to a constitutive definition of ID are that more, considerable work is yet to be done in this
it recognises the vast biological and social complexi- area—work that is currently being engaged in by one
ties associated with ID (Baumeister, 2006; Switzky or more ICD-11 and AAIDD work groups.
& Greenspan, 2006), captures the essential charac-
teristics of a person with this disability (Simeonsson
Establishing public policy
et al., 2006), establishes an ecological framework for
supports provision (Thompson et al., 2009), and pro- The final critical question relates to establishing pub-
vides a solid conceptual basis to differentiate among lic policy that aligns societal values with services and
persons with other cognitive and developmental supports for persons with ID. Currently, international
disabilities (Thompson & Wehmeyer, 2008). disability policy regarding persons with ID is pre-
mised on a number of core concepts and principles
that are: (a) person-referenced, such as inclusion,
Classifying members of the class
empowerment, individualised and relevant supports,
All classification systems have as their fundamental productivity and contribution, and family integrity
purpose the provision of an organised scheme for the and unity; and (b) service-delivery referenced, such
232 R. L. Schalock
as antidiscrimination, coordination and collabora- vary from highly segregated classrooms, to resource
tion, and accountability (Brown & Percy, 2007; rooms, to schools providing full inclusion for stu-
Montreal Declaration, 2004; Salamanca Statement, dents with ID; (b) residential options that vary from
1994; Shogren, Bradley, Gomez, Yeager, & Schalock, large, congregate living facilities and nursing homes,
2009). These concepts and principles have resulted to group homes, to supported community living pri-
in significant changes in service delivery policies and vate residences (It should be noted, however, that
practices, and a significant effort to conceptualise across the globe, only a small proportion of persons
and measure important life domains. In reference with ID live in residential settings; most reside with
For personal use only.
to the former, we have seen internationally poli- their family [Emerson et al., 2007].); (c) occupa-
cies and practices enacted that provide education, tional opportunities that vary from day activity cen-
community living and employment opportunities, ters, to sheltered workshops, to general work skills
technological supports and assistive technology, and vocational preparation, to integrated employ-
person-centred planning, and a framework to assess ment; and (d) support services that include special-
person- and family-referenced valued outcomes. In ised health and behaviour supports, leisure activities,
reference to the latter, the concepts and principles transportation, assistive technology, rights and advo-
mentioned above have been operationalised in the cacy support, and/or nutritional assistance.
following eight universally recognised life domains The concept of supports is being applied to per-
(United Nations, 2006): rights (access and privacy); sons with ID in different ways. For some, the sup-
participation; autonomy, independence, and choice; ports orientation has brought together the related
physical well-being; material well-being (work and practices of person-centred planning, personal
employment); inclusion, accessibility, and participa- growth and development opportunities, community
tion; emotional well-being (freedom from exploita- inclusion, self-determination, empowerment, the
tion, violence, and abuse); and personal development application of positive psychology, and the applica-
(education and rehabilitation). Although there is con- tion of a “systems of supports” that includes policies
siderable variability across countries, the net effect of and practices, incentives, cognitive supports (i.e.,
these concepts, principles, and related changes has assistive technology), prosthetics, skills and knowl-
been the development of an array of services and edge, environmental accommodation, and profes-
supports for persons with ID and an increasing focus sional services (Shogren, Wehmeyer, Buchanan, &
on measuring public policy outcomes. Lopez, 2006; Thompson et al., 2009). For others, we
Array of services and supports. As discussed more have seen the integration of a quality of life frame-
fully by Emerson et al. (2007) and Mercier, Sax- work into the individualised planning process so as
ena, Lecomte, Cumbrera, and Harnois (2008), to align supports provision within the quality of life
persons with disabilities, including those with ID, framework, and thus focus on the role that individu-
are provided in many countries with an array of alised supports play in the enhancement of quality
educational, residential, occupational, and support of life-related personal outcomes (van Loon, 2008).
services. Although the availability and composi- And for others, supports are provided through
tion vary across countries, the general parameters a community-based rehabilitation model, which con-
of this array are (a) educational opportunities that sists of small programs implemented through the
What is intellectual disability? 233
combined efforts of those with disability, their and supports planning, and how the field resolves a
families, and the community using indigenous sup- number of emerging epistemological issues.
ports (McConkey & O’Toole, 1995). According to
Emerson et al. (2007), this model remains the cen-
terpiece of international development strategies. Conceptualisation and measurement of intellectual
functioning
Measuring public policy outcomes. Public policy out-
Historically, there have been three broad conceptual
comes can be used for multiple purposes including
frameworks used to describe and measure intel-
analysing the impact of specific public policies, mon-
lectual functioning: intelligence as a general factor
itoring the effectiveness and efficiency of services
(e.g., Gottfredson, 1997), intelligence as a multi-
and supports, providing a basis for continuous qual-
trait, hierarchical phenomenon (e.g., Carroll, 1993),
ity improvement and performance enhancement,
or intelligence as a multidimensional construct
meeting the increasing need for accountability, and
(Gardner, 1998; Horn & Cattell, 1966; Naglieri &
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(2007), Schalock and Verdugo (2002). bBased on the work of Aznar and Castañón (2005), Isaacs et al. (2007), Summers et al. (2005).
cBased on the work of Arthaud-Day, Rode, Mooney, and Near (2005), Emerson, Graham, and Hatton (2006), Emerson and Hatton
(2008).
234 R. L. Schalock
practical skills (Schalock, 1999, 2006; Thompson & program standards (Walter, Helgenberger, Wiek, &
Wehmeyer, 2008). Scholz, 2007). This research approach also incorpo-
A number of potential benefits would accrue with rates a more functional perspective of ID based on
such a change in the conceptualisation and mea- a multidimensional model of etiology and the prin-
surement of intellectual functioning. Chief among ciples of human potential, positive psychology, and
these would be (a) a subtle, but important, shift in self-determination (Emerson et al., 2007; Schalock,
terminology from “intelligence” (a unitary concept) Bonham, & Verdugo, 2008; Shogren et al., 2006;
to “intellectual functioning” (a multidimensional Wehmeyer et al., 2008).
concept); (b) a closer alignment between the term
intellectual disability and the diagnostic criteria Alignment of clinical functions
(e.g., significant limitations in conceptual, social,
The third critical issue involves a better understand-
and practical intelligence/intellectual skills); (c) a
ing of the role of assessment in ID and the alignment
singular operational definition of ID that focuses on
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