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SW 644: Issues in Developmental Disabilities Intellectual Disability: Definition, Classification and Assessment Lecture Presenter: Lara S. Head, Ph.D.

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Presentation on theme: "SW 644: Issues in Developmental Disabilities Intellectual Disability: Definition, Classification and Assessment Lecture Presenter: Lara S. Head, Ph.D."— Presentation transcript:

1 SW 644: Issues in Developmental Disabilities Intellectual Disability: Definition, Classification and Assessment Lecture Presenter: Lara S. Head, Ph.D. Post Doctorate Fellow in Psychology Waisman Center University of Wisconsin-Madison

2 Issue of Change: Providing Context  Terminology Shift from ‘mental retardation’ to ‘intellectual disability’  Definition Evolving  Assessment Balance between intelligence and adaptive behavior  Implications Increasing consistency

3 Issue of Change - Terminology  Historical conceptualizations Presence of individuals with intellectual impairments in society has been well documented over time (Example: Roman and Greek Culture) Early religious leaders were among first to advocate for humane treatment  Changing perceptions John Locke Jean-Marc-Gaspard Itard Edouard Seguin

4 Classification  A classification system is introduced  J. Langdon Hayden Down Classification by physical appearance  Late 1800’s: Recognition of brain pathology in intellectual disabilities  Education reform and Residential Schools  Theodore Simon and Alfred Binet Early 1900s Classification based on IQ

5 What is Intellectual Disability?  Current Perspective A state of functioning rather than a person-centered trait Limitations in intellectual functioning Difficulties in meeting the ordinary challenges associated with daily life A social-ecological view  Not an illness or a disease Medical model view Perception of ‘sick’

6 What is Intellectual Disability?  Types of causes Genetic Chromosomal Prenatal influences Perinatal influences Postnatal influences  Diagnosis of intellectual disability is a process No single diagnostic test  Defined by many organizations

7 Terminology Differences  Many different terms to describe intellectual disability  Shift in terminology in last few years  Mental Retardation / Intellectual Disability Significant limitations in intellectual functioning and in adaptive behavior Before 18 Population of application remains the same (www.aaidd.org)

8 Terminology Differences  Developmental Disability A severe, chronic disability that begins any time from birth through age 21 and is expected to last a lifetime. May be cognitive, physical, or a combination of both Serious limitations in everyday activities (www.nacdd.org)  Disability Personal limitations that represent a substantial disadvantage with attempting to function in society Can originate at any age (www.aapd.org)

9 Terminology Differences  Benefits to terminology change Reflects the changed construct of disability Aligns better with current professional practices Provides a logical basis for individualized supports provision Less offensive to individuals with disability More consistent with international terminology

10 Issue of Change- Definition  Definition Evolving and dependent on assumptions that clarify the context from which it is derived and applied Significant consequences  Service eligibility  Subject or not subject to certain practices  Exempted or not exempted  Included or not included  Entitled or not entitled

11 Development of Definition  1961: AAMR introduces term “mental retardation”  1973: Introduction of standard deviation to describe intellectual disability as well as 18 as upper age limit for initial manifestation of intellectual disability  1980s: Specific IQ values with ranges

12 2002 AAIDD System  Diagnosis Essential to establishing eligibility  Classification A means of communication  Planning Supports Enhancing personal outcomes  Four different definitions for intellectual disability: focus on DSM IV and AAIDD

13 2002 AAIDD System  Multidimensional Approach  Other systems, like DSM IV, is multi- axial and focuses on medical disorders and stressors  Important to assess current functioning and strengths of individual

14 2002 AAIDD System  Diagnosis Core definition (2002) Mental retardation is a disability characterized by significant limitations in intellectual functioning and in adaptive behavior Is expressed in conceptual, social, and adaptive skills Originates before age 18

15 2002 AAIDD System  5 essential assumptions Limitations must be considered within context Diagnosis based on a valid assessment that considers various factors Recognizes that limitations and strengths coexist Limitations provide information to develop support needs With personalized supports provided over time, life functioning will improve

16 2002 AAIDD System: Intelligence  General mental capacity includes: Reasoning Problem-solving Abstract thinking Comprehension Learning from experience  Limitations influence other aspects of functioning  Best represented by intelligence test scores using appropriate test instruments

17 2002 AAIDD System: Adaptive Behavior  Collection of skills that individuals learn to use in order to function in everyday life  Conceptual Skills Receptive and expressive language Reading and writing Money concepts Self-directions

18 2002 AAIDD System: Adaptive Behavior  Social Skills Interpersonal skills Responsibility Self-esteem  Practical Skills Eating Dressing/Bathing Mobility Daily Living tasks

19 2002 AAIDD System: Classification  Classification Dimension I  Intellectual Abilities Dimension II  Adaptive Behavior Dimension III  Participation, Interactions, and Social Roles Dimension IV  Health Dimension V  Context

20 2002 AAIDD System: Supports  Planning Supports Human development Teaching and education Home living Community living Employment Health and safety Behavioral Social Protection and advocacy

21 DSM IV – TR Definition  Significantly below average intellectual functioning: IQ of approximately 70 or below on an individually administered IQ test  Accompanied by significant limitations in adaptive functioning in at least 2 skill areas: Communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work leisure, health, and safety (American Psychiatric Association, 2000, p. 41)  Onset before age 18

22 DSM IV-TR Levels of Mental Retardation  Mild MR 55-70 IQ Adaptive limitations in 2 or more domains  Moderate MR 35-54 IQ Adaptive limitations in 2 or more domains  Severe MR 20-34 IQ Adaptive limitations in all domains  Profound MR Below 20 IQ Adaptive limitations in all domains

23 Who are the Intellectually Disabled?  Prevalence Less than 1% of the overall population Estimated 3% of the population in the United States  Residence WI  Approximately 81% reside in a home/supported living setting  Approximately 19% reside in a state public/private facility (www.cu.edu/ColemanInstitute/stateofthe states/Wisconsin.html)

24 Special Education Services – Fall 2005 StateAges 3-21 Wisconsin130,076 Minnesota116,511 Illinois323,444 Michigan243,607 Indiana177,826 Iowa72,457 Site: www.ideadata.org

25 Special Education Services – Fall 2005 Disability CategoryAge 5Age 10 Specific Learning Disabilities7,607235,787 Speech/Language Impairments164,082115,780 Mental Retardation11,68836,678 Emotional Disturbance3,37330,579 Multiple Disabilities4,1719,753 Hearing Impairments3,2285,909 Orthopedic Impairments3,4075,313 Other Health Impairments6,59051,225 Visual Impairments1,3492,093 Autism13,84818,216 Deaf-blindness86112 Traumatic Brain Injury5041,729 Developmental Delay82,2610 All Disabilities302,194512,994 Site: www.ideadata.org

26 Who are the Intellectually Disabled?  Age differences  Increased prevalence typically from preschool to middle childhood years  Increased prevalence in teen years  Decreased prevalence in older individuals  Gender differences  Increased reports in males

27 Who are the Intellectually Disabled?  Associated impairments 20-25% visually impaired 10% hearing impaired Seizure disorders occur in approximately 33% of individuals in institutional settings Cerebral palsy occurs 30-60% of individuals in individuals with severe intellectual disability

28 Who are the Intellectually Disabled?  Psychiatric disorders Estimates of 4-18% of individuals with ID have a co-occurring psychiatric disorder  4.4% Schizophrenia  2.2% Depressive disorder  2.2% Generalized Anxiety Disorder  4.4% Phobic disorder Deb, Thomas, & Bright 2001

29 Profiles of Intellectual Disability  Mild ID Profile Minor delays in the preschool period Evaluation often only after school entry 2-3 word sentences used in early primary grades Expressive language improvement with time Reading/math skills – 1 st to 6 th grade levels Social interests typically age appropriate Mental age range of 8-11 years of age Persistent low academic skill attainment can limit vocational possibilities

30 Profiles of Intellectual Disability  Moderate ID Profile More evident and consistent delays in milestones At school entry may communicate with single words and gestures Functional language is the goal School entry self-care skills – 2-3 year range By age 14: basic self-care skills, simple conversations, and cooperative social interactions Mental age of 6-8 years of age Vocational opportunities limited to unskilled work with direct supervision and assistance

31 Profiles of Intellectual Disability  Severe ID Profile Identification in infancy to two years Often co-occurring with biological anomalies Increased risk for motor disorders and epilepsy By age 12: may use 2-3 word phrases Mental age typically 4-6 years of age As adults assistance typically required for even self-care activities Close supervision needed for all vocational tasks

32 Profiles of Intellectual Disability  Profound ID Profile Identification in infancy Marked delays and biological anomalies Preschool age range may function as a 1-year- old High rate of early mortality By age 10: some walk/acquire some self-care skills with assistance Gesture communication Recognizes some familiar people Mental age range from birth to 4 years of age Functional skill acquisition not likely

33 Variations in ID Classification  Childhood intervention history  Educational experiences  Socialization opportunities  Adult habilitative and prevocational activities  Presence of physical impairment

34 Issue of Change - Assessment  Assessment Establishing a balance between the importance of IQ and identifying functional behaviors and support needs Increased recognition of the cultural implications of intelligence testing

35 Identifying Individuals with ID  Assessment Cognitive/intellectual ability Adaptive behavior functioning

36 Cognitive Ability Assessment  Standardized and Norm-referenced Tests Standardized: a test given in a certain, prescribed way using the same set of directions with every individual Norm-referenced: Examining an individual’s test performance in comparison to the average performance or “norm”, of other individuals of the same chronological age  Validity and Reliability Validity: Does the test measure what we want? Reliability: Does the test measure consistently?

37 Cognitive Ability Assessment  Normal Curve / Distribution Represents the distribution of abilities in the general population Demonstrates the extent to which individuals deviate from the mean based on a normal distribution of scores Average IQ = 100 Range 85-115 = approximately 68% Fewer people are represented at the extreme ends of the curve  IQ < 70 = approximately 3%

38 Cognitive Ability Assessment  Normal Curve

39 Cognitive Ability Assessment  Types of Intelligence Verbal Ability Nonverbal Ability Other theoretical models

40 Cognitive Ability Assessment  Common Measures WISC Series (WISC IV; WAIS II; WPPSI, etc.) Stanford-Binet V Woodcock-Johnson Test of Cognitive Abilities Bayley Scales of Infant Development Kaufman Assessment Battery for Children

41 Cognitive Ability Assessment  Stability over time For most, intelligence remains stable after 5 years of age (Zigler, Balla, & Hodapp, 1984) However, variability in individual growth patterns warrant periodic evaluation

42 Other Consideration in Cognitive Ability Assessment  How reliable and valid was the test  Other Important Features: culture, language barriers, physical impairments  Ability to accurately compare individual’s performance against a normative group when presence of some physical issues  Need to be vigilant with these issues when conducting testing, review the literature and talking to individuals and their families  Also consider if there was a great deal of scatter within the individual’s performance?  Intellectual disability is a feature of many different conditions, many different disorders  The diagnosis of intellectual disability should always be made whenever the diagnostic criteria are met regardless of whether or not there are other conditions that are present  Individuals with intellectual disability are vulnerable to lots of other conditions simply by the nature of how they do function and the nature by which their ability to execute their skills effectively can be compromised

43 Adaptive Behavior Assessment  “The adaptive behavior approach was originally intended to encourage one to look at the individuals with an eye toward remediation and prescriptive assessment, rather than merely labeling and classifying.” (Nihira, 1999, p. 8)

44 Adaptive Behavior Assessment  Adaptive behavior can be difficult to assess: Adaptive behavior is not independent of intelligence Behaviors accepted as adaptive at one age may not be acceptable at another age What constitutes adaptive behavior is variable

45 Adaptive Behavior Assessment  Adaptive Behavior Conceptual Skills: communication, functional academics, self- direction, money concepts Social Skills: interpersonal skills, self-esteem, naiveté/gullibility, self-governance (obeys rules) Practical Skills: self-care, domestic skills, work, health & safety

46 Adaptive Behavior Assessment  Relationship between IQ and adaptive behavior functioning r =.30 -.50 (Harrison & Oakland, 2003) Highest correlation in the lower IQ ranges More variability in adaptive behavior scores in higher IQ ranges Adaptive behavior and intelligence work together

47 Adaptive Behavior Assessment  Current standards of practice Assess present functioning Assess typical functioning Consider the person’s age and culture Assessment using standardized measure of AB normed on general population Compare person’s adaptive behavior to community standards and expectations Use multiple informants Retrospective assessment (Schalock et al., 2007)

48 Adaptive Behavior Assessment  Measures Vineland II Adaptive Behavior Scales (Sparrow, Cicchetti, & Balla, 2005)  Birth to age 90  Three versions  Four Domains – Communication, Daily Living Skills, Socialization, Motor Skills  Maladaptive Behavior Domain  Adaptive behavior composite score  Survey scale norms based on 3,000+ people

49 Adaptive Behavior Assessment  Measures AAMR Adaptive Behavior Scales (ABS)  School/Community (Lambert, Nihira, & Leland, 1993)  Residential/Community (Nihira, Leland, & Lambert, 1993) Scales of Independent Behavior– Revised (SIB-R) (Brunininks, Woodcock, Weatherman, & Hill, 1996) Adaptive Behavior Assessment System 2nd Edition (ABAS – II) (Harrison & Oakland, 2003)

50 Why Change? - Implications  Professional-Parent Communication Maximize the role of professional in shaping parent perceptions Recognize the adaptation process as an evolving experience for parents Need to listen to and value the perspectives of parents Consider the unique needs of all family members Need to be sensitive about dreams and hopes of parents for their children Need to respect family’s coping style

51 Why Change?  Service Provision Effective resource utilization  Lifetime expenditure -- $51.2 billion for individuals with ID (www.cdc.org) Increased emphasis on adaptive behavior functioning and habilitation services Utilizing support needs assessment as a tool towards improved interventions

52 Why Change?  Legal Implications Identifying individuals at risk as vulnerable adults Individuals within the criminal justice system  As victims – 4 to 10 times increased risk (Sobsey, 1994)  As suspects/offenders – 4-10% of the prison population (Sullivan & Knutson, 2000)

53 Future Directions  Research / discussion will continue Refining the construct of intellectual disability Understanding the influence of terminology Expanding our understanding of the nature of intelligence, adaptive behavior and functional differences Improving reliability of diagnosis Improving knowledge of human functioning Examining the relationships among groups Determining support provision Recognizing the role of advocacy

54 Resources - Websites  www.aaidd.org – American Association on Intellectual and Developmental Disabilities (formerly AAMR) www.aaidd.org  www.nacdd.org – National Association of Councils on Developmental Disabilities www.nacdd.org  www.familyvillage.wisc.edu – Family Village (University of Wisconsin-Madison) www.familyvillage.wisc.edu  www.fragilex.org – National Fragile X Foundation www.fragilex.org  www.cureautismnow.org – Cure Autism Now www.cureautismnow.org

55 Resources - Websites  www.autism-society.org – Autism Society of America www.autism-society.org  www.ndss.org – National Down Syndrome Society www.ndss.org  www.mpssociety.org/content/4163/Tributes/ -- National MPS Society (Hunter syndrome) www.mpssociety.org/content/4163/Tributes/  www.ideadata.org – Special Education Population Figures – Federal/State www.ideadata.org  www.cu.edu/ColemanInstitute/stateofthestates -- Disability Population Figures – State www.cu.edu/ColemanInstitute/stateofthestates  www.aapd.org – American Association of People with Disabilities www.aapd.org

56 Resources – Video/Images  www.fragilex.org/photogallery/photogallery.htm -- Fragile X photographs www.fragilex.org/photogallery/photogallery.htm  www.taaproject.com/media/the-taap-video/ -- Autism Acceptance Project www.taaproject.com/media/the-taap-video/  www.taaproject.com/media/video-vault/the-reason-the-joy-of-adam/ www.taaproject.com/media/video-vault/the-reason-the-joy-of-adam/  www.cdlsusa.org/familyalbum/index.html -- Cornelia de Lange Syndrome Images – CDLS Foundation www.cdlsusa.org/familyalbum/index.html

57 Resources – Video/Images  www.cdlsusa.org/video/index.shtml -- CDLS Video www.cdlsusa.org/video/index.shtml  www.ucp.org/ucp_generalsub.cfm/1/9/12171 -- United Cerebral Palsy “One Life” www.ucp.org/ucp_generalsub.cfm/1/9/12171  www.lndinfo.org/LNDPatients/Equipment.html -- Lesch-Nyhan Disease Registry – Images www.lndinfo.org/LNDPatients/Equipment.html  www.rettsyndrome.org/content.asp?contentid=444 – International Rett Syndrome Association www.rettsyndrome.org/content.asp?contentid  www.youtube.com/watch?v=_TbWcdN-W8o – Living a Life of Disability video www.youtube.com/watch?v=_TbWcdN-W8o

58 Resources – Further Reading  American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4 th ed., Text rev.). Washington, DC: Author.  Deb, S., Thomas, M., & Bright, C. (2001). Mental disorder in adults with intellectual disability: Prevalence of functional psychiatric illness among a community-based population aged between 16 and 64 years. Journal of Intellectual Disability Research, 45 (6), 495-505.  Elks, M. A. (2005). Visual Indictment: A contextual analysis of The Kallikak Family photographs. Mental Retardation, 43 (4), 268- 280.  Luckasson, R., Borthwick-Duffy, S., Buntinx, W. H. E., Coulter, D. L., Snell, M. E., Spitalnik, D. M. Spreat, S., & Tasse´, M. J. (2002). Mental Retardation: Definition, classification, and systems of supports (10 th ed.). Washington, DC: American Association on Mental Retardation.

59 Resources – Further Reading  Snell, M. E. & Vorrhees, M. D. (2006). On being labeled with mental retardation. In H. N. Switzky & S. Greenspan (Eds.), What is mental retardation: Ideas for an evolving disability (pp. 61-80). Washington, DC: American Association on Mental Retardation.  Sattler, J. & Hoge, R. D. (2006). Assessment of children: Behavioral, social, and clinical foundations (5 th ed.). Jerome M. Sattler, Publisher, Inc.: San Diego, CA.  Schalock, R.L., Buntinx, W., Borthwick-Duffy, A., Luckasson, R., Snell, M., Tasse´, M., & Wehmeyer, M. (2007). User’s Guide: Mental retardation: Definition, classification, and systems of supports (10 th ed.). Washington, DC: American Association on Intellectual and Developmental Disabilities.

60 Resources – Further Reading  Schalock, R. L. et al. (2007). The renaming of mental retardation: Understanding the change to the term intellectual disability. Intellectual and Developmental Disabilities, 45 (2), 116-124.  Sullivan, P. & Knutson, J. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24 (10), 1257-1273.  Turnbull, R., Turnbull, A., Warren, S., Eidelman, S. & Marchand, P. (2002). Shakespeare redux, or Romeo and Juliet revisited: Embedding a terminology and name change in a new agenda for the field of mental retardation. Mental Retardation, 40 (1), 65-70.  Zigler, E., Balla, D., & Hodapp, R. (1994). On the definition and classification of mental retardation. American Journal of Mental Deficiency, 89 (3), 215-230.


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