Definitions of MR



Class 3 Definitions of ID

QUESTIONS:

Why and How Do We Define “Intellectual disability”

How has the definition of ID changed across the years and what factors have influenced

these changes?

Within intellectual disability, how and why are individuals classified according to “levels”?

What is the incidence and prevalence of individuals with intellectual disability within the US? And, why do we care what these figures are?

First, WHY do we Define ID?

SMALL GROUPS: put up 2 sheets of chart paper – groups discuss the pros/cons and write their consensus opinions on each paper – discuss as whole group

• To determine eligibility for educational, medical, social services, benefits, legal protections; Having that label can lead to provision of vital services and supports; “Gatekeeper” idea—that you can go through the gate to receive services if you have the right “credentials”

• However, being given a label of “ID” comes with a price tag—is a devalued role in our society, one which highly values intelligence and success; associated with stigma and even loss of civil rights, educational opportunities, and, sometimes, loss of life itself.

• So---the criteria we use to determine ID are very important. We want to be sure that everyone receives the services and supports they need to lead a life “just as good as” their fellow citizens w/o ID (so don’t want to fail to label someone who needs those services and supports—a “false negative”) but we don’t want to unnecessarily stigmatize someone either

• And determining who has ID and who doesn’t isn’t as easy as you might think. ID is not a trait, like eye color, or height; it is a state in which functioning is impaired in specific ways. Dan Reschly says thinking of ID as a dichotomy (you either have or don’t have ID) vs. a continuum is a mistake—b/c this makes it difficult to figure out what is going on with people who may be at the “margins” . Thinking of ID as a dichotomy minimizes the complexity of ID. What ID means—the concept of ID—has to do with (a) what a society conceptualizes intelligence to be, (b) what the social norms of a society are, and (c) how much a society tolerates differences in social behavior. And as you will see, even in our own country, the conceptualization of what ID is has changed over time, and thus, who receives services and the types of services they receive has changed.

• ACTIVITY: On pages 42-43 of your text is a discussion of other ways to think about or define ID: Phenomenological (socially constructed—a social invention used to categorize people different from us), sociological (a function of social competence or performance or a condition caused by society’s lack of appropriate education and support), behavioral ( a function of a limited behavioral repertoire), and the idea of multiple intelligences (ID only exists b/c we look at a narrow view of what intelligence is vs. looking at multiple areas of intelligence).

o Look those over for a couple of min. Decide which of these perspectives best fits your thinking of what ID is and discuss your position within your group. Start by going around the group and having everyone make a “I think ID is a ____________ ” statement (2 min). Then discuss among yourselves why you hold the views you do (7-10 min). Finally, discuss briefly in large group.

2002 Definition specifies a framework for assessment; indicates there are 3 functions of assessment (KNOW THESE)

DIAGNOSIS

Diagnosis – we’ve just talked about that – do this to establish eligibility for services, benefits, or legal protections

Classification:

Classification means separating individuals into subgroups (hx note: France was place where a classification system was first put into place to separate individuals with developmental disabilities into categories;

▪ Grouping for services and funding but there are many ways to group: could do so by causal factors, such as genetic or accident; or by need for supports such as needs help with daily living skills or needs help with money only, etc.

• Prior to 1992 AAMR definition, used Mild(55-70)Mod (40-55)-Severe(25-40)-Profound (25 or below); before that used Educable-Trainable; now we are moving towards classifying by using intensities of supports (we’ll look in depth at this tomorrow)

Planning Supports – this gets back to the first question on the first slide. Why should we define ID and diagnosis people with this unless the information will be used to benefit them? So after we’ve determined someone has ID, decided the intensity of supports they need, we take this information and actually plan the types of supports they will receive to improve functioning. These could include educational services, equipment, work training, medical care, etc.

Some Historical Definitions of ID

• Early definitions focused on “incurability”; also viewed ID as a permanent status—that one’s functioning remained static across time and contexts [i.e., saw it as a TRAIT vs. a STATE]; looked at IQ only or primarily

• Gradual change to consider importance of adaptive behavior and current level of functioning (implying that functioning may vary across the lifespan); began to recognize that one’s functioning could change so emphasized diagnosis based on CURRENT level of functioning (Six Hour Retarded Child—ID during school hours but functioning within social norms outside of school – Jane Mercer)

• 1973 definition changed diagnosis criteria from 1 SD to 2 SD below the mean, resulting in an 85% reduction in the number of individuals labeled as having intellectual disability

o Look at Normal Curve

• By 1977 definition emphasized importance of “clinical judgment”, especially for determining status of individuals on the margins (borderline); clinical judgment = experience and expertise of a professional who has appropriate training

• By 1983, IQ could be extended to 75 if adaptive behavior deficits were present

• 1992 emphasized importance of the interaction between an individual’s capabilities, the environment, and support needs; this was a MAJOR change

o also moved away from mild-moderate-severe-profound categories to consideration of intensities of support ; this was also first time that individuals with ID were included in the discussions around the definition

• In half of the cases of persons with ID, we cannot find the cause of this condition. In the half of the cases we can find the cause, 60% are genetic and 40% we can trace to such factors as environmental influences, chemical drugs, and brain injury. Some genes are involved in chemical pathways and we are just beginning to understand how they contribute to brain injury. We are also just beginning to understand developmental changes and questions such as how the structure of the brain has changed in some of these conditions and if changes alter the structure of the brain altogether or just the electricity of the brain."

Current (2002) Definition of ID NOTE: Text does not discuss this definition so this is NOT in your book! Required readings include first chapter from the AAID ID Definition book

• New definition of ID – just came out in 2002; Official definition of ID has been altered 10 times. Remember that ID is not something you “have” like a disease or something you are, like tall or short—in other words it is not a trait. “It is a particular state of functioning that begins in childhood and is characterized by limitations in intelligence and adaptive skills.” It “reflects the “fit” between an individual’s capabilities, the structure/expectations of the environment, and supports.

o Look at Model of new Definition: New Definition can be said to come from an ECOLOGICAL perspective b/c it recognizes the multiple dimensions that affect someone’s functioning at a particular moment; All of the items on the left affect an individual’s functioning; But this effect is mediated by the presence or absence of supports

o Look at wording:

Three Broad Requirements or Criteria – MUST KNOW THEM

Requirement 1.Significant limitations in intellectual functioning [2 SD below the mean] and

Requirement 2. Significant limitations in adaptive behavior as expressed in conceptual, social, and practical adaptive skills [2 SD below the mean]

Requirement 3. Originates before age 18

To apply the def for ID to an individual the examiner must consider all the testing information within the context of 5 assumptions:

• Five Assumptions for AAMR 2002 Definition

o Valid assessment considers limitations within context of community environments typical of the individual’s age peers and culture, i.e., measures individual against standards for his or her community – age, culture, language

o Valid assessment considers language, culture, communication, behavioral, motor and sensory factors

o Limitations coexist with strengths – i.e., no one’s abilities are a flatline

o A key purpose of describing limitations is to develop appropriate supports i.e., What is the point of identifying weak areas unless we are going to build a support plan that will have a positive impact on the individual (Dan Reschley)

o With appropriate supports over time, functioning improves

• Changes from 1992 Definition

o Reorganization of adaptive behavior into 3 categories

o Adding a 5th dimension to the multidimensional approach - reorganized

o Adding a standard deviation criterion to the intellectual and adaptive behavior components of the diagnosis of ID

o Expanding the discussion of clinical judgment

o Presenting a multifactorial approach to etiology: 4 factors: biological, social, behavioral, and educational

Important Terms

• Adaptive Behavior – collection of conceptual, social, and practical skills that have been learned by people in order to function in their everyday lives (p. 73, Luckasson et al., 2002).

• In our discussions of intellectual disability in this course, we need to always be considering multicultural issues. This is especially true when we talk about assessment. When you have a country in which multiple cultures exist, what is considered normative (acceptable or typical) varies from group to group. Have to be careful not to diagnose ID when the behavioral differences a person exhibits are actually due to language or cultural differences. Not doing so can result in disproportionate representation of one or more ethnic groups in a disability category. This is true in the case of ID. AFF males, for example, are over-represented in this category (and in ED)

• JULIA’S DATA

• Supports – “resources and strategies that aim to promote the development, education, interests, and personal well-being of a person and that enhance individual functioning.(p. 145, 2002) Examples: help with banking and money; a job coach; a peer buddy in PE class

Disagreements with new AAMR Definition

Although the AAMR definition is used throughout the world, not all professional groups agree with it. Example being the Am Psy Association—DSM-IV. They include birth -22 in dev period and keep classification system based on IQ

Other criticisms:

• Did away with mild ID (which is 75-89% of total ID pop)

• We don’t’ have a precise way to measure adaptive behavior so it is difficult to diagnose ID precisely with a def that relies on that

IDEA Def (used by NM) – HANDOUT from TEAM MANUAL

Classification

Classification

Why classify “levels” of intellectual disability?

To group individuals to most efficiently provide services and supports

Classification Systems: Levels of Support (1992, 2002)

Intermittent – as needed

Limited – time-limited

Extensive – on-going, across most settings

Pervasive – usually life long, in virtually all areas

Incidence

• Total number of new cases in a population in a defined period of time – usually a year

• Helps in looking at causes/prevention

• Varies at different chronological ages

o Highest during school years (5-18); lowest during pre- post-school years

o B/c only those with the most severe impairment will be identified before school and about 90% of children with intellectual disability have MILD impairment; after school year, this larger group may not “appear” as having ID b/c the demands of their environments don’t include academic skills so they don’t perform significantly differently from the “normal” population

Prevalence

• Total number of cases in a population at any given time

o Given as a percentage (1-3% of gen population has ID; 10-11% of population of school-aged children with disabilities have ID)

o Used for planning services needed in future

o Can see that how we define ID will affect the prevalence rate

Some Important Facts Related to Incidence and Prevalence

• More males than females [about 2:1 for mild intellectual disability and 1.5:1 for more severe impairment]: probably due to biological effects (X-linked disorders [males only have one X chromosome so more likely to “show” problems]), childrearing practices and social demands, and different societal expectations for self-sufficiency

• Differences in rural and urban environments will affect # of individuals diagnosed at ID: people in urban communities are more likely to be diagnosed as having ID b/c urban communities are typically considered to be more complex than rural; urban school districts tend to have systems that refer and diagnose more often; interaction of poverty –

• Also socioeconomic differences affect prevalence (EXCEPT in cases of severe ID). New KIDSCOUNT Data show NM has highest poverty rate for children in the nation – 26%. Also, again think about multicultural factors. Know that persons from ethnic minorities are more likely to live in poverty. This may mean less opportunities for education and experiences, poor or nonexistent health care (pre and postnatal), and different societal (and educational) expectations. So, again, children from nonmajority cultures may be disproportionally represented in ID category.

• A related issue: children from poor countries are more likely to have conditions resulting in ID so incidence is higher BUT, b/c of infant mortality rates, Prevalence is actually lower; societies that are more subsistence oriented will have less “need” to identify people with ID – much as in our country up until the “age of testing” began as we became more industrialized. Now, as our society becomes more and more technological, what will the possible implications be for identifying people with ID?

• # of students receiving sp ed services with ID label has dropped since 1976—probably are being labeled as LD; also consideration of CLD factors, and b/c of positive effects of early intervention

• ACTIVITY: IN APS use letters to designate (at least informally) student’s classification. Using what you’ve learned about intellectual disability as a condition and how it is defined, what might be factors making this an inappropriate way to determine where a child receives services? In fact, using what you’ve learned about diagnosing ID, can we appropriately determine a child’s placement and services based on his/her classification? Why or why not?

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