Mental Retardation: Definition, Classification and Systems of Supports (2002, A.A.M.R., 10th ed.)

1. Mental Retardation: Definition, Classification and Systems of Supports (2002, A.A.M.R., 10th ed.)

2. A state of mental defect from birth, or from an early age, due to incomplete cerebral development, in consequence of which the person affected is unable to perform his duties as member of society in the position of life to which he is born (TREDGOLD,1908)

3. Mental Deficiency is a state of incomplete mental development of such a kind and degree that the individual is incapable of adapting himself to the normal environment of his fellows in such a way to maintain existence independently of supervision, control or external support (TREDGOLD,1937)

4. A state of social incompetence obtained at maturity, resulting from developmental arrest of constitutional origin (heredity or acquired); the condition is essentially incurable through treatment and irremediable through training.We observe that 6 criteria by statement or implication have been generally considered essential to an adequate definition and concept of mental retardation (1) social incompetence (2) due to mental subnormality (3) which has been developmentally arrested (4) which obtains at maturity (5) is of constitutional origin (6) is essentially incurable (DOLL,1941)

5. In 1877 two terms were coined to describe different levels of functioning based on decreasing language and speech abilities: ‘imbecility’ and ‘idiocy’. Since 1910 people were classified (Stanford Binet since beginning of 20th century) based on numeral scores in three different categories : ‘morons’, ‘imbeciles’ and ‘idiots’.Since the AAMR-definition from 1959 on and until 1983 people were classified with levels of severity: mild, moderate, severe and profound.In 1992-definition AAMR wanted to get rid of the ‘power’ of IQ scores and banned the classification in levels of severity. Levels of support were introduced.In 2002 version classification runs parallel with the purpose of measurement.

6. Mental retardation refers to subaverage general intellectual functioning which originates during the developmental period and is associated with impairment in one or more of the following: (1) maturation, (2)learning (3) social adjustment IQ-Cutoff: less than one standard deviation below the population mean of the age group involved in measures of general intellectual functioning Both required : standardised IQ measures and measure of impairment in one or more aspects of adaptive behavior (e.g. Vineland) The developmental period: runs from birth through approximately 16 years (HEBER, 1959)

7. Mental Retardation refers to subaverage general intellectual functioning which originates during the developmental period and is associated with impairment in adaptive behavior (HEBER,1961) –IQ-cutoff: greater than one SD below M (theoretically, 16% of the population)diagnosis: standardised IQ and adaptive behavior testsdevelopmental period: birth through age 16

8. In de loop van de geschiedenis werd de statistische bovengrens verlegd. Daardoor werden minder mensen gelabeld. De definitie van HEBER (1961) sloeg op 16% van de bevolking, GROSSMAN (1973) veranderde de cutoff score van 1 naar twee of meer standaarddeviaties; bovendien moesten intelligentietekort en problemen in adaptief gedrag samen (‘concurrently’) voorkomen. De bedoelde doelgroep werd alzo vernauwd tot 3% van de bevolking. Licht : 50-55 tot 70-75matig: van 35- 40tot 50-55 ernstig: van 20 tot 35- 40 diep: minder dan 20

9. Mental Retardation refers to subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period (GROSSMAN, 1973)IQ-cutoff: two or more (!!) SD’s below the M of the populationDiagnosis: standardised IQ-test and adaptive behavior tetsDevelopmental period: upper age limit of 18 (!!) years

10. Mental retardation refers to significantly subaverage general intellectual functioning resulting in or associated with concurrent impairments in adaptive behavior and manifested in the developmental period (GROSSMAN, 1983)

11. Mental Retardation refers to substantial limitations in present functioning. It is characterized by significantly subaverage intellectual functioning existing concurrently with related limitations in 2 or more of the following applicable adaptive skill areas: communication, selfcare, home living, social skills, community use, self-direction, health and safety, functional academics, leisure and work. Mental retardation manifests before age 18. (1992)

12. theoretisch model 1992: triangle

13. The 1992-definition replaced the concept of global adaptive behavior by 10 broad adaptive skill areas and the requirement to document that 2 or more of these areas could be documented as deficientThe 1992 definition introduced more than ever an ‘ecological approach’: with the term ‘present functioning’ and the introduction of the factor ‘environment’The practice of classifying individuals with mental retardation into IQ-based subgroups was dropped. Professionals were encouraged to accompany diagnosis with descriptions of needed supports

14. Mental Retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. The disability originates before age 18.(2002)

15. Five assumptions essential to the application of the 2002-definition1. limitations in present functioning must be considered within the context of community environments typical of the individual’s age peers and culture2. valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor and behavioral factors3. within an individual, limitations often coexist with strengths4. an important purpose of describing limitations is to develop a profile of needed supports5. with appropriate personalised supports over a sustained period, the life functioning of the person with mental retardation generally will improve

16. « mental retardation is a disability » • « a disability is the expression of limitations in individual functioning within a social context,and represents a substantial disadvantage to the individual. An individual’s disability may be characterized by marked and severe problems in the capacity to function (impairments in bodily functions and structures),the ability to function (activity limitations) and the opportunity to function (participation restrictions)

17. « characterised by significant limitations in intellectual functioning » • « ...intelligence is a general mental capability.It includes: reasoning, planning, solving problems, thinking abstractly, comprehending complex idea’s, learning quickly and learnig from experience... » • Limitations in intellectual functioning have to be considered in light of four other dimensions

18. assessment of intellectual functioning • intellectual functioning is still best represented by IQ-scores (although far from perfect) • cut-off score: two standarddeviations below the mean, considering the standard error of instruments) • m= 100, standard deviation= 15 • 95% reliability: FIQ= 65 (from 59 to 71)

19. assessment of intellectual functioning • GARDNER (1998): multiple intelligences (naturalist – linguistic – logical mathematical – spatial – musical – bodily kinesthetic - interpersonal-intrapersonal ) • GREENSPAN (vanaf 1981): tripartite model (conceptual intelligence – practical intelligence – social intelligence)

20. GARDNER • conceptual intelligence = equivalent to g • practical intelligence = performance of everyday skills • social intelligence = moral judgement, empathy, social skills, gullibility (being tricked/manipulated), credulity(believing exaggerated clearly inaccurate claims

21. adaptive behavior • « ... is the collection of conceptual, social and practical skills that have been learned by people in order to function in their everyday lives... » • adaptive behavior has to be measured by a standardised measures that are normed on the general population • significant limitations = 2 standard deviations below the mean on an overall score or on one of the three domains

22. enkele voorbeelden van adaptive behavior skills in tabel 3.1; handboek pagina 42, werkboek pag.15

23. enkele bruikbare instrumenten om adaptief gedrag te meten

24. measurement problems and adaptive behavior • there is a difference between performance and acquisition of skills • problem behavior is not a characteristic of adaptive behavior • a lot of times we work with indirect observations and informants (multimethod approach) • the individual’s physical condition and mental health plays an enormous role • adaptive behavior has to be studied in the context of different developmental periods (infancy, childhood, adolescence, adulthood) • adaptive behavior must be examined in the context of an individual’s culture that may influence opportunities, motivation and performance

25. theoretisch model 2002: figuur 1.1 (pag 10 in handboek) of figuur 3.1 (pag.13 in werkboek)

26. We need to look at how the whole person functions within their own family, culture, community, school or workplace :* from a trait to a state of functioning *holistic approach*ecological model

27. there are three major functions of assessment: diagnosis, classification, and planning of supports for the personeach function has a number of possible purposes: establishing service eligibility, research, organizing information, development of a plan for the provision of supports for an individualselection of the most appropriate measures or tools will depend on the function and specific purpose to be fulfilled

28. FUNCTION 1: diagnosis of mental retardation based on 3criteria • significant limitations in intellectual functioning • significant limitations in adaptive behavior as expressed in practical, social and conceptual adaptive skills • age of onset before age 18

29. Age of onset : before age 18. We know that a lot of persons don’t get their diagnosis before the age of 18. Date of diagnosis is not a synonym for ‘age of onset’ !!

30. Function 2: Classification and Description We can describe the individual’s strenghts and limitations in each of the five dimensions. This information can be used to develop individual support plans, research, classification, communication about selected characteristics

31. a multidimensional theoretical model: strenghts and limitations • intellectual abilities • adaptive behavior • participation,interactions,social roles • health • context

32. (1992)1.Intellectual functioning and adaptive skills2. Psychological and Emotional Considerations3. Health and Physical Considerations4. Environmental Considerations

33. tabel werkboek pag.8 vergelijkende tabel 1992-2002

34. Dimension 3: Participation, Interactions and Social Roles • positive environments foster growth,development and well-being • participation and interaction are best determined by directly observing one’s engagement in everyday activities • participation refers to an individual’s involvement in and execution of tasks in real life situations.It denotes the degree of involvement, including society’s response to the individual’s level of functioning • social roles refer to a set of valued activities normal for a specific age group • lack of participation and interactions can result from hampered availability or accessibility of resources, accomodations or services • lack of participation and interactions frequently limit the fullfillment of valued social roles

35. Dimension 4 : Health and etiological factors • Physical and Mental Health, social well-being • they can have an enormous impact on functioning • etiology has to be seen in a multifactorial approach: biomedical factors, social factors, behavioral factors and educational factors • primary, secondary and tertiary prevention

36. Dimension 5: context (environment and culture) • context in ecological perspective:micro, mesoand macro-system • the assessment of the context is not typically accomplished with standardized measures • Does the context provide OPPORTUNITIES?: community presence – choice – competence – respect – community participation • Does the context foster WELL-BEING?: health and personal safety – material comforts and financial security – community and civic activities – leisure and recreation – development and stimulation – work ...

37. some informal but interesting questions • What are you doing? • where are doing it? • when are you doing it? • with whom are you doing it?

38. Function 3: Systems of Support • 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 • services are one type of support • individual functioning results from the interaction of supports with the 5 dimensions • well organised and matched supports can improve the functional capabilities of individuals

39. supports model • handboek figuur 9.1, pag.148

40. supports model: key aspects • ecological approach: discrepancy between a person’s capabilities and the competencies required to function in an environment • risk and protective factors have to be taken into account • the model evaluates nine different ‘support areas’ • for each area the ‘intensity of support’ is evaluated • there are different ‘support functions’ • supports can be evaluated through the desired personal outcomes

41. three-step process • identifying relevant support areas • identifying relevant support activities • determining the intensity of support

42. support areas • human development • teaching and education • home living • community living • employment • health and safety • behavioral • social • protection and advocacy

43. support functions • teaching • befriending • financial planning • employee assistance • behavioral support • in home living assistance • community access and use • health assistance

44. level of support • frequency (1)less than monthly (2) monthly (3)weekly (4)daily (5)hourly or more frequently • daily support times (1)none (2) under 30 minutes (3) 30 minutes to less than 2 hours (4)2 hours to less than 4 hours (5)4 hours or more • type of supports: (1) none (2) monitoring (3) verbal/gestural prompting (4) partial physical assistance (5) full physical assistance

45. systems of supports • person • family and friends • informal supports • generic services • specialised services

46. op komst: de SUPPORTS INTENSITY SCALE

47. evaluation of supports • schema : handboek pag.165 • outcome categories • key indicators • measures

48. outcome categories • independence • relationships • contributions • school and community participation • personal well-being indicators : tabel 9.4 pag 167 handboek

49. supports:characteristics • supports occur in regular, integrated environments • support systems are following a certain logic • support activities are person centered • supports need to be coordinated • supports are fluctuating during different life stages • supports should be going if necessary

50. supports: human rights basis • supports are to be based on person-centered planning • supports are to be based on the power of self-advocacy and empowerment • supports are to be based on personal-referenced outcomes (reflecting individuals rights, values, preferences and that involve inclusion and participation)