mental retardation: definition, classification and systems of supports (2002, a.a.m.r., 10th ed.)

Mental Retardation: Definition, Classification and Systems of

Supports (2002, A.A.M.R., 10th ed.)

Bedoelingen van het multidimensioneel systeem

een diagnose stellen

een classificatiesysteem uitwerken

een ondersteuningsplan opstellen

The 2002 system

« ...we need to look at how the whole person functions within their own family, culture, community, school or workplace... »

The 2002 system

« ...The 10th edition conceptualizes mental retardation as functional and contextual instead of statistical... »

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)

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)

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)

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.

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)

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

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 70-75

matig: van 35- 40tot 50-55 ernstig: van 20 tot 35- 40

diep: minder dan 20

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

population 

Diagnosis: standardised IQ-test and adaptive behavior tets 

Developmental period: upper age limit of 18 (!!) years

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)

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)

theoretisch model 1992: triangle

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 deficient

 The 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

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)

Five assumptions essential to the application of the 2002-definition

1. 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 factors

3. within an individual, limitations often coexist with strengths

4. an important purpose of describing limitations is to develop a profile of needed supports

5. with appropriate personalised supports over a sustained period, the life functioning of the person with mental

retardation generally will improve

theoretisch model 2002, pag. 10 handboek

« 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)

« 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

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 instrumentsm= 100, standard deviation= 15 IQ:65, 95% reliability score between 59 and 71

assessment of intellectual functioning

GARDNER (1998): multiple intelligences (naturalist – linguistic – logical mathematical – spatial – musical – bodily kinesthetic - interpersonal - intrapersonal )

GREENSPAN (since 1981): tripartite model (conceptual intelligence – practical intelligence – social intelligence)

GREENSPAN

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)

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... »

significant limitations = 2 standard deviations below the mean on an overall score or on one of the three domains

limitations should be considered in light of the four other dimensions

enkele voorbeelden van adaptive behavior skills in tabel

3.1; handboek pagina 42, werkboek pag.15

enkele bruikbare instrumenten om adaptief gedrag te meten

Vineland Adaptive Behavior Scales

AAMR Adaptive Behavior Scales

Scales of Independent Behavior

Comprehensive Test of Adaptive Behavior

Adaptive Behavior Assessment System

measurement problems and adaptive behavior

there is a difference between performance and acquisition of skillsproblem behavior is not a characteristic of adaptive behaviora lot of times we work with indirect observations and informants (multimethod approach)the individual’s physical condition and mental health plays an enormous roleadaptive 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

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

there are three major functions of assessment: diagnosis, classification, and planning of supports for the person

 each function has a number of possible purposes:

establishing service eligibility, research, organising information, development of a plan for the provision of

supports for an individual 

selection of the most appropriate measures or tools will depend on the function and specific purpose to be fulfilled

FUNCTION 1: diagnosis of mental retardation based on 3 criteria

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

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’ !!

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

a multidimensional theoretical model: strenghts and limitations

intellectual abilities

adaptive behavior

participation,interactions,social roles

health

context

(1992)

1.Intellectual functioning and adaptive skills2. Psychological and Emotional Considerations

3. Health and Physical Considerations4. Environmental Considerations

vergelijkende tabel 1992-2002

tabel werkboek pag.8

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

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

Dimension 5: context (environment and culture)

context in ecological perspective:micro, meso and macro-systemthe assessment of the context is not typically accomplished with standardized measuresDoes the context provide OPPORTUNITIES?: community presence – choice – competence – respect – community participationDoes 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 ...

some informal but interesting questions

What are you doing?

where are doing it?

when are you doing it?

with whom are you doing it?

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 functioningservices are one type of supportindividual functioning results from the interaction of supports with the 5 dimensionswell organised and matched supports can improve the functional capabilities of individuals

supports model

handboek figuur 9.1, pag.148

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

three-step process

identifying relevant support areas

identifying relevant support activities

determining the intensity of support

support areas

human developmentteaching and educationhome livingcommunity livingemploymenthealth and safetybehavioralsocialprotection and advocacy

support functions

teaching

befriending

financial planning

employee assistance

behavioral support

in home living assistance

community access and use

health assistance

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

systems of supports

person

family and friends

informal supports

generic services

specialised services

op komst: de SUPPORTS INTENSITY SCALE

evaluation of supports

scheme : book pag.165

outcome categories

key indicators

measures

outcome categories

independence

relationships

contributions

school and community participation

personal well-being

indicators : tabel 9.4 pag 167 handboek

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: 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)

werkbladen A.A.M.R.