Intellectual Disability: Definition, Classification, and Systems of Supports (11th Edition) Marc J. Tassé, PhD Director, Nisonger Center - UCEDD Professor, Department of Psychology & Psychiatry The Ohio State University Columbus, OH USA December 11, 2009 Genoa, Italy

The AAIDD Ad Hoc Committee on Terminology and Classification Karrie A. Shogren Martha E. Snell Scott Spreat Marc J. Tassé James R. Thompson Miguel A. Verdugo-Alonso Michael L. Wehmeyer Mark H. Yeager Robert L. Schalock* Sharon A. Borthwick-Duffy Valerie J. Bradley Wil H.E. Buntinx David L. Coulter Ellis M. (Pat) Craig Sharon C. Gomez Yves Lachapelle Ruth Luckasson Alya Reeve

Why Change Terminology? The term “Intellectual Disability” is preferred because: Is less offensive to persons with the disability. Is more consistent with international terminology. 3 Training Curriculum Slide 3

Definition of Intellectual Disability Intellectual disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18. The following five assumptions are essential to the application of this definition. 4 Training Curriculum Slide 4

5 Essential Assumptions Limitations in present functioning must be considered within the context of community environments typical of the individual’s age peers and culture. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. Within an individual, limitations often coexist with strengths. An important purpose of describing limitations is to develop a profile of needed supports. With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve. 5 Training Curriculum Slide 5

5 Essential Assumptions Limitations in present functioning must be considered within the context of community environments typical of the individual’s age peers and culture. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. Within an individual, limitations often coexist with strengths. An important purpose of describing limitations is to develop a profile of needed supports. With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve. 6 Training Curriculum Slide 6

5 Essential Assumptions Limitations in present functioning must be considered within the context of community environments typical of the individual’s age peers and culture. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. Within an individual, limitations often coexist with strengths. An important purpose of describing limitations is to develop a profile of needed supports. With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve. 7 Training Curriculum Slide 7

5 Essential Assumptions Limitations in present functioning must be considered within the context of community environments typical of the individual’s age peers and culture. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. Within an individual, limitations often coexist with strengths. An important purpose of describing limitations is to develop a profile of needed supports. With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve. 8 Training Curriculum Slide 8

5 Essential Assumptions Limitations in present functioning must be considered within the context of community environments typical of the individual’s age peers and culture. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. Within an individual, limitations often coexist with strengths. An important purpose of describing limitations is to develop a profile of needed supports. With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve. 9 Training Curriculum Slide 9

5 Essential Assumptions Limitations in present functioning must be considered within the context of community environments typical of the individual’s age peers and culture. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors. Within an individual, limitations often coexist with strengths. An important purpose of describing limitations is to develop a profile of needed supports. With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve. 10 Training Curriculum Slide 10

Diagnostic Criteria Significant deficits in intellectual functioning: “Significant limitations in intellectual functioning criterion for a diagnosis of intellectual disability is an IQ score that is approximately two standard deviations below the mean, considering the standard error of measurement for the specific instrument used and the instruments’ strengths and limitations.” 11 Training Curriculum Slide 11

Diagnostic Criteria Significant deficits in adaptive behavior: “Significant limitations in adaptive behavior’ criterion for a diagnosis of intellectual disability is performance that is approximately two standard deviations below the mean of either (a) one of the following three types of adaptive behavior: conceptual, social, or practical, or (b) an overall score on a standardized measure of conceptual , social, and practical skills. As with the intellectual functioning criterion, the assessment instrument’s standard error of measurement must be considered when interpreting the individual’s obtained score.” 12 Training Curriculum Slide 12

Defining Adaptive Behavior Conceptual skills: language, reading and writing, and money, time, and number concepts. Social skills: interpersonal skills, social responsibility, self- esteem, gullibility, naïveté (i.e., wariness), follows rules/obeys laws, avoids being victimized, and social problem solving. Practical skills: activities of daily living (personal care), occupational skills, use of money, safety, health care, travel/transportation, schedules/routines, and use of the telephone. 13 Training Curriculum Slide 13

“Significant Deficits” The operational definition of “significant deficits” is a performance that is approximately 2 standard deviations or more below the population mean. Reporting of IQ and AB scores with their respective confidence intervals is a critical consideration underlying the appropriate use of measures of intelligence and adaptive behavior - and best practices; such reporting must be a part of any decision concerning the diagnosis of intellectual disability (95% confidence interval = ± 2 SEm).

“Significant Deficits in AB” A notable change first included in the previous AAIDD Manual (Luckasson et al., 2002) continues to be emphasized in the 11th Edition (Schalock et al., 2010) with regard to AB assessment. “For the diagnosis of intellectual disability, significant limitations in adaptive behavior should be established through the use of standardized measures normed on the general population…” (p. 43 - Schalock et al., 2010

Diagnostic Criteria Age of onset: “This disability originates before age 18.” N.B. This does not imply that a diagnosis of ID cannot be made for the first time beyond the age of 18 years of age. The significant deficits in intellectual functioning and adaptive behavior MUST have been present before age 18 – not the diagnosis. 16 Training Curriculum Slide 16

What are the causes of intellectual disability? A multifactorial approach to the etiology of intellectual disability is presented in the 11th edition. This approach focuses on the types of risk factors (biomedical, social, behavioral, and educational) and the timing of risk factors (prenatal, perinatal, and postnatal). 17 Training Curriculum Slide 17

Classification The primary purposes of classification in the field of intellectual disability are grouping for funding, research, provision of services and supports, and communication about selected characteristics of persons and their environments. Classification is used today for more than its historic purpose of grouping on the basis of IQ range bands or adaptive behavior limitation scores. AAIDD dropped (since 1992) the classification of the condition based solely on IQ deficits. 18 Training Curriculum Slide 18

Classification Professionals need to be familiar with the emerging trends in the development and use of multidimensional classification systems based on the multidimensionality of human functioning that involves: Intellectual abilities Adaptive behavior Health Participation Context, and Individualized supports 19 Training Curriculum Slide 19

Multi-dimensional Model of Human Functioning I. INTELLECTUAL ABILITIES II. ADAPTIVE BEHAVIOR Individual Functioning III. HEALTH SUPPORTS IV. PARTICIPATION V. CONTEXT 20 Training Curriculum Slide 20

Intensity of Supports Needs Supports are resources and strategies that aim to promote the development, education, interests, and personal well- being of a person and that enhance individual functioning. 21 Training Curriculum Slide 21

Supports Needs The support needs construct is based on the premise that human functioning is influenced by the extent of congruence between individual capacity and the environments in which that individual is expected to function. 22 Training Curriculum Slide 22

Supports Needs Creates Support Needs Provide Supports Leading To: Improved Personal Outcome Outcomes may include more independence, enhanced opportunities to contribute to society, increased participation in school and/or community settings and activities, and a greater sense of personal well-being/life satisfaction. Mismatch of competency & demands People with ID experience a mismatch between their personal competency and environmental demands. Creates Support Needs Individualized Supports Thoughtful planning & application of individualized supports Provide Supports Leading To: 23 Training Curriculum Slide 23

Component 3: Develop the Individualized Support Plan Component 2: Determine the Intensity of Support Needs Component 1: Identify desired life experiences and goals Component 3: Develop the Individualized Support Plan The slide shows an abbreviated version of the 4-Component Support Needs Assessment & Planning Process shown in the handout. Component 1- Identify desired life experiences and goals – The first thing to do is to identify what the person wants to do with his or her life through a person centered planning process. Butterworth, Steere, & Whitney-Thomas (1997, p. 7) captured it well when they said the goal is to come up with “a vision of the life-style the individual would like to have, and the goals needed to achieve it, that is unrestricted by current resources or services”. Ideally, an outcome of person-centered planning is the identification of daily experiences and daily settings/environmental conditions that provide an individual with an improved quality of life. It is essential that a person’s current daily activities and environments be compared with what the person prefers or considers being desirable everyday experiences and situations, so that priorities can be established in terms of: (a) things that need to change the most and (b) things that are most important to maintain. Component 2 of the planning process – Determining the Intensity of a person’s support needs – is where the SIS comes in. All SIS sections can provide useful information. Results from the SIS provide a quantitative profile of the frequency, duration, and type of supports needed across six major life activity domains, along with the areas of exceptional medical and behavioral support needs. Information from Component 2 is used in conjunction with person-centered planning to guide a planning team to Component 3 – development of an individualized plan. Component 3 - Developing an ISP involves specifying what, when, where, how, and by whom supports will be provided. The purpose of an ISP is to enable an individual to have life experiences and goals that mirror his or her desired life experiences and goals as closely as possible. Moreover, an effective ISP should improve coordination and management of supports and should maximize available resources, while minimizing the chances of a person receiving supports that are unwanted or unnecessary. An ISP is ready for implementation when the planning team has specified (a) the settings where the person is most likely to be as well as the activities in which the individual will participate during a typical week, and (b) the types of supports that will be provided and who will be providing the support. In Component 4, the planning team compares the actual outcomes of the support planning process to the desired outcomes identified by the individual and his or her team. Further, expected supports received/not received are evaluated. As is shown by the arrow, support assessment and planning is cyclical, in that monitoring may lead to a return to Component 1 (reexamining desired life experiences and goals) and/or Component 2 (assessing intensity of support needs). Component 4: Monitor Progress

Summary Change in terminology from “Mental Retardation” to “Intellectual Disability”. Disability characterized by significant deficits in intellectual functioning and significant deficits in conceptual, practical, or social skills and the onset of these deficits originates prior to the person’s 18th birthday. Importance of understanding the person’s support needs. 25 Training Curriculum Slide 25

Intellectual Disability: Definition, Classification, and Systems of Supports (11th Edition) Marc J. Tassé, PhD Director, Nisonger Center - UCEDD Professor, Department of Psychology & Psychiatry The Ohio State University Email: Marc.Tasse@osumc.edu December 11, 2009 Genoa, Italy 26 Training Curriculum Slide 26

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