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Intellectual Disabilities

Models with Down syndrome have been making inroads into advertising lately as part of ensemble casts in circulars and catalogs. Now, a 10-month-old Miami girl, Valentina Guerrero, is fronting a whole campaign from the notable Spanish swimwear designer Dolores Cortés. Valentina graces the cover of the new Dolores Cortés USA catalog, and is the face of the brand's 2013 DC Kids ads. Last Friday, Cortés showed off her new collection in Miami Beach, and brought Valentina out on to the runway. Valentina is said to be the first person with Down syndrome in history to be the main model of a campaign from a prestigious fashion designer. "People with Down syndrome are just as beautiful and deserve the same opportunities

Idiot

Imbecile

Moron

Feebleminded

Mentally deficient

Mentally Retarded/retard

Tradition?

In any case, as we saw in our first lecture, special ed = mental retardation in the early years and most of the world has a concept of what it means, so that’s where we’ll start with the charac. phase of the class.

Earliest treatment of disabled and mentally ill: ship of fools—literally taking them to another country or area.

DEFINITION OF INTELLECTUAL DISABILITY

IDEA: “Significantly subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period that adversely affects a child’s educational performance.”

This is the most frequently used definition
From American Association on Mental Retardation in 1973, but they’ve come up with another, more recent definition that they would prefer to be used. This is one was incorporated into IDEA, however.
Why are definitions important?
They define who gets the services allotted by law
They can show changes in attitude and policy over time
And sometimes, it means life or death for the person in a court of law

Atkins v. Virginia

See notes

IDEA Definition

3 key criteria:
First: “significant subaverage intellectual functioning” must exist. Significant= IQ score is 2 or more standard deviations below the mean on standardized intelligence test. More later…
Second: intellectual functioning is not sole criteria, must also have deficits in adaptive behavior—life skills
Third: deficits must have appeared during developmental period of child’s life—not a result of traumatic brain injury, head injury as an adult.

The other aspect of the definition: “adversely affect child’s educational performance” is assumed when the child exhibits the aforementioned subaverage intellectual and adaptive behavior deficits

Classification by IQ Score

Level	IQ Score
Mild	50-55 to approximately 70
Moderate	35-40 to 50-55
Severe	20-25 to 35-40
Profound	Below 20-25

Classification by IQ score—not desirable but still pervasively used.

Do you live somewhere where the terms EMR and TMR still exist? Not accepted now due to implied limitation on student’s abilities

Educable mental retardation outdated term for mild mental retardation (EMR).

Trainable mental retardation outdated term for moderate mental retardation (TMR).

AAIDD’s Definition

“Intellectual disability is a disability 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 the age of 18.”

the AAMR, once the AAMD, is now the American Association of Intellectual and Developmental Disabilities. This is their updated definition..

This is a slight rewording of their original definition adopted by IDEA, but with there are some strong perspectives and factors attached---it considers the individual’s functioning in the context of his/her present environment and the supports needed to improve it.

Changes in Perspectives about ID

Changes in expectations for people with disabilities
Functional descriptions of disabilities
Chronologically age appropriate activities
Consumer-driven services and supports
Support networks that provide individualized supports

These trends were cited by the AAIDD as they attempted to develop a non IQ-based method of classifying people with ID—the Supports Intensity Scale…

Assumptions in Defining and Identifying ID (AAIDD)

Levels of Support: from Supports Intensity Scale (AAIDD, 2002)

Intermittent: as needed; episodic—for a period of transition (job loss, medical crisis)
Limited: time limited, but not intermittent—transition to living in group home
Extensive: usually ongoing, daily involvement, long term support and long term home living support
Pervasive: possibly lifelong, high intensity, across environments, may be life-sustaining

The SIS is a unique [non IQ-based] tool for assessing and planning support needs for adults with intellectual and developmental disabilities. As such, it does not provide instructional planning for children per se, but can certainly aid in transition planning and provides a non-IQ based model emphasizing support.

Identification and Assessment: IQ Testing

IQ tests are norm-referenced, standardized tests—test is administered to a random selection of the population for which it is intended and conclusions are drawn from the score distributions…

Show normal curve fig. 4.1 This illustrates the bell-shaped curve phenomenon.

Limitations of IQ Scores

Concept of intelligence is hypothetical construct.
IQ tests measure only performance on items on test, at one point in time.
IQ scores can change significantly.
IQ testing is not an exact science.
IQ can be culturally biased.

Intelligence is inferred from observing performance on a test. We assume someone is intelligent because they can do mazes, etc.
Only measures a small portion of skills and abilities—we infer their performance will be similar in other situations
Particularly in the borderline 70 – 85 range and especially after intensive intervention
Standard acceptable error is 3- 5 points. Scores depend on individual’s motivation; time & location of the test; inconsistency or bias of the test giver in scoring responses in judgment areas; selection of test; selection of edition of test
We’ve covered non discriminatory evaluation—the Binet and Weschler still favor middle class children, and because they are primarily verbal, not a good choice for students w/other primary language

Limitations of IQ Scores

IQ scores can never be used a sole basis for providing or not providing special education services.
Results of IQ tests should never be used for identifying objectives or designing instruction.

Remember multifactored, nondiscriminatory assessment?
Better to used criterion referenced (curriculum- specific skills) test to guide instructional objectives We can’t spend time teaching students how to do mazes and block configurations—teach life skill instead

IQ is still the single best predictor of academic success, however.
Also remember that IQ is not the only characteristic needed…

Assessing Adaptive Behavior

Adaptive behavior: “the collection of conceptual, social and practical skills that have been learned by people in order to function in their everyday lives” (AAIDD, 2015).
Critical in determining level of support
Completed by someone familiar with the individual

Cover adaptive (eating, toileting, time, money handling, initiating interactions, following rules) And maladaptive (inappropriate) behaviors: trustworthiness, self abuse, social engagement---critical factors in determining needed supports

Sample assessments:

Adaptive Behavior Scale--School

AAIDD Diagnostic Adaptive Behavior Scale

Vineland Adaptive Behavior Scales

Adaptive Behavior Assessment System-II

Adaptive behavior tests suffer the same cultural subjectivity issues as other assessments—what is considered independent or acceptable behavior in one culture might not be in another

Plug TTAC—assessment library and site visits

Characteristics

Mild ID
Difficulty with academics
Social and communication skills close to age-appropriate.
Likely to become independent or semi-independent adults.

Children with mild ID may not be identified until academic tasks become more organized in 2nd or 3rd grade. Most learn basic academic, vocational and daily living skills well enough to support themselves independently or semi-independently as adults.

Characteristics

Moderate ID
Likely to show significant delays in preschool years.
More likely than those with mild ID to have health and behavior problems.
Severe ID
Identified at birth
Additional disabilities and/or health problems.

Moderate: discrepancies in intellectual and adaptive development as compared to age-matched peers widen as child grows.

Severe and profound identified at birth or shortly afterward—most have attendant CNS damage and additional disabilities and/or health problems. We’ll cover severe disabilities later…

Characteristics

Cognitive functioning:

Learning rate: slower
Memory: difficulty with short-term and working memory
Once skills are committed to long-term memory, retention as good as others without ID

Learning rate: child with ID may require 20-30 trials to criterion to learn a skill that a typically developing child masters in 2-3, but teachers should still use a lively pace for instruction.
Deficits in working memory—(the ability to remember one item while performing another task) and short term memory—(the ability to recall and use information that was just presented) may impair the ability to recall a specific sequence of job tasks stated a few minutes or hours earlier without considerable practice. Once information is committed to long term memory, it is recalled as well an any individual can do it.
Research on teaching of metacognitive strategies (like rehearsing and organizing info into sets), which individuals without ID do naturally (like going to the ATM to make a deposit: got to have the card, the check, try not to go at night, get cash for lunch, etc.)

Characteristics

Attention: may have attentional problems related to relevant features of learning task
Generalization and maintenance of learning: trouble using skills in different situations
Motivation: Outer-directed, learned helplessness

Attention: May focus on distracting stimuli and have difficulty sustaining attention—compounds other learning problems. Control for distracting stimuli initially and direct student’s focus to the core goal of the activity—add complexity later. Selective and sustained attention will improve as skill is gained.

Generalization: What happens automatically in other students needs to be specifically taught and remains a primary goal

Learned helplessness: After so many failures, they distrust own responses and rely on others for solutions (outer directedness)and expect failure. They have low expectations for themselves. Self determination training helps—see figure 4.2.

Characteristics

Adaptive behavior:

Self-care and daily living: dressing, eating and hygiene; self-management
Social relationships: appropriate social and interpersonal skills
Behavioral excesses and challenging behavior
Positive attributes
Meet Mary Warm

SC: Dressing, etc. for those requiring extensive support; self- determination skills training to reach level of independent living for those with requiring less support

Social: Making and sustaining appropriate relationships: teach skills like maintaining personal distance, not interrupting, staying on topic and making eye contact; Also learning how not to be taken advantage of!

Behavioral: Difficulty accepting criticism, limited self control, aggression, self-injury, sometimes attached to syndromes like Prader-Willi, pica or comorbid psychiatric diagnosis—dual diagnosis cases. Mental health problems are comorbid and need further research

Positive attributes: highly individual personalities; tenacity; curiosity; high social motivation and positive models for those around them.

Prevalence

About 0.78 - 1.27% of the general population
6.7% of students (ages 3 – 21) receiving special education (USDOE, 2014)

5th largest IDEA category

Original estimates of 2.3% were based on the normal curve—why isn’t this correct? (must be IQ and concurrent adaptive deficits)

Varies from state to state and district to district, based on differing criteria for identification, changing definition of ID,

Generally, there is a stigma—learning disabilities can be overcome with support, but intellectually disabled is forever…

No process for identification once student leaves high school

Causes

Biomedical Causes

2/3rd of severe forms have specific biological etiology.
Most common biomedical causes of ID are Down syndrome and fragile X syndrome. See Table 4.2 for full descriptions.

There are more than 350 risk factors associated with ID. In 35% of the cases, there is a genetic cause; another ~33% involves external trauma or toxins and the etiology is unknown in the remainder.

This categorization by the AAID characterizes disorders in which ID may occur by when they appear: prenatal, perinatal or postnatal. These causal factors can further be categorized as bio-medical or environmental

See Figure 4.3 and Table 4.2 for full information.

Causes

Environmental Causes

Psychosocial disadvantage
Intellectual disability of cultural/familial origin

While there is no direct evidence that proves that social and environmental deprivation cause ID, researchers believe that these influences cause many cases of mild ID. Book uses the term psychosocial disadvantage for limited opportunities to develop early language, child abuse and neglect, chronic social or sensory deprivation, poverty as causal factors

Etiological Risk Factors

Prenatal (before birth)

View all of Figure 4.3 on p. 122

Biomedical	Social	Behavioral	Educational
Chromosomal disorders	Poverty	Parental drug use	Parental ID w/o supports
Single gene disorders	Maternal malnutrition	Parental alcohol use	Lack of preparation for parenthood
Syndromes	Domestic violence	Parental smoking
Metabolic disorders...	No prenatal care	Parental immaturity

Discuss why these are called “risk factors” rather than proven causal factors, i.e., not all children who were abandoned may test as ID: “Because intellectual disability is characterized as impaired functioning, its etiology is whatever causes impaired functioning.” (AAIDD, 2010, as cited in Heward). When ID is diagnosed, often one or more of these traits or characteristics is evident.

Focus on:

Prader-Willi Syndrome

Weight gain between 1 - 6 years of age
Distinctive facial features
Global developmental delay before age 6; mild to moderate intellectual disability or learning problems in older children
Hyperphagia/food foraging/obsession with food

Infants and young children with PWS are typically happy and loving, and exhibit few behavior problems. Most older children and adults with PWS, however, do have difficulties with behavior regulation, manifested as difficulties with transitions and unanticipated changes. Onset of behavioral symptoms usually coincides with onset of hyperphagia (although not all problem behaviors are food-related), and difficulties peak in adolescence or early adulthood. Daily routines and structure, firm rules and limits, "time out," and positive rewards work best for behavior management. Psychotropic medications—particularly serotonin reuptake inhibitors, such as fluoxetine and sertroline—are beneficial in treating obsessive-compulsive (OCD) symptoms, perseveration, and mood swings. Depression in adults is not uncommon.

http://www.pwsausa.org/syndrome/basicfac.htm

Focus on:

Fragile X Syndrome

Males and females can be carriers or have the full mutation
Full mutation = distinct facial characteristics
Educational problems range from ADHD, LD, anxiety to ID

One of the most common genetic causes of ID. Autistic-like behavior.

Focus on:

Fetal Alcohol Spectrum Disorder

Ranges from:

Fetal alcohol effect (FAE)
Fetal alcohol syndrome (FAS)
Alcohol-related Neurodevelopmental Disorder (ARND)

FAE: no characteristic cranio-facial abnormalities, but hyperactivity and learning problems

FAS: characteristic craniofacial abnormalities, ID, sleep disturbance, aggression, conduct disorder, hyperirritability

ARND: range of neurodevelopmental problems, including cognitive problems,

Etiological Risk Factors

Perinatal (during birth)

View all of Figure 4.3 on p. 122

Biomedical	Social	Behavioral	Educational
Prematurity	Lack of access to birth care	Lack of parental caretaking	Lack of referral for intervention services
Birth injury	Parental abandonment
Neonatal disorders

See Figure 4.3 and Table 4.2 for full information.

Etiological Risk Factors

Postnatal (after birth)

View all of Figure 4.3 on p. 122

Biomedical	Social	Behavioral	Educational
Traumatic brain injury	Impaired child caregiver	Child abuse and neglect	Impaired parenting
Malnutrition	Lack of adequate stimulation	Domestic violence	Delayed diagnosis
Meningoence-phalitis…	Family poverty…	Inadequate safety measures…	Inadequate early intervention…

Juniper Gardens Children’s Project

Prevention

Rubella vaccine
Parental screening/diagnostic tests for genetic influences
Newborn screening
Education and training
Early intervention

Rubella: vaccine—dev. in 1962. When rubella (German measles) is contracted within the 1st 3 months of pregnancy, it causes severe damage in 10-40 % of newborns
Noninvasive screening: ultrasound/Alphafetoprotein test (can detect Down syn. & spina bifida). Diagnostic: amniocentesis or Chorionic Villus Sampling (can be done sooner than amnio) Genetic counseling for parents with at-risk backgrounds
Newborn screens: Phenylketonuria and other metabolic disorders can be detected with simple blood test and treated.
Education: to combat maternal substance abuse and expose to environmental pollutants like lead
EI: best defense for those at risk to develop intellectual disability from psycho-social disadvantage

Educational Approaches: Curriculum Goals

Academic Curriculum:

Meaningful academics
High expectations in general education curriculum for students with mild intellectual disabilities
Use actual materials to teach
Use lots of drill and practice

We have almost 200 years of experience educating individuals with ID—and WE’VE learned a lot! Your book recounts the history on p. 126

Conduct an ecological inventory to find what skills are needed now and in the future:

Writing: Making a grocery list

Reading: a bus schedule

Arithmetic: making sure that you got the correct change

Traditional academic skills can be functional—learning rock types can be functional for a student who is a rock collector

Functional academics: Ask, “Will the student need it when he or she is 21?”

Curriculum Goals

Functional curriculum:

Teaches skills that lead to independence, self-direction and enhancement of daily life.
Life skills: Teach personal independence
Self-determination: (set goals, implement course of action, evaluate performance, and make necessary adjustments to meet goal)

Life skills: especially critical at middle and high school ages. Several established curricula to do this. Life Skills Instruction Curricula

Self determination: acquiring the skills to take control of one’s life. Ex: wants to be student of the week: be on time, turn in all work, ask for help if not clear on directions. 4 step process: “What is the problem?”, “What can I do about it?,” “Did that fix the problem?”& “Did I meet my goal?”

Heward’s research on “recruitment training” positively recruiting teacher attention 2 –3 times in a learning session got more praise and work was more accurate—combats learned helplessness—p.144

Teaching in context—a teacher of students with MR may spend 1 – 2 days a week in the community with her students, teaching skills in the context that they will be used.

Show sequence from Instructional Strategies video

Instructional Methods

Task analysis--breaking tasks into simpler sub-tasks
Active student response--observable response to instructional antecedent
Systematic feedback--Change focus and timing as learning progresses (see Figure 4.6)

Task analysis: teaching 2 students with severe ID to use a pay phone to call home. 17 steps—researchers established time goals for each step by timing 2 adults with disabilities as they completed the task . Figure 4.5 gives a data collection sheet on a preschool student’s morning arrival routine for example.

ASR: AKA opportunity to respond—virtually any appropriate response to instruction results in more learning than instances in which there is no observable response. Acceptable responses are: words read, problems solved, questions answered, stitches sewn, etc.

Feedback: Use in first learning (acquisition stage)—follows each attempt and focus on accuracy and form of response. Practice stage—several responses before feedback—emphasize correct rate rather than accuracy and form to encourage fluency.

Instructional Methodology

Transfer of stimulus control
Generalization and maintenance
Naturally occurring contingencies
Program common stimuli
Community based instruction
Direct and frequent measurement
Spotlight on assistive technology

Transfer: Use of prompts (picture cards, verbal cues for each step) with trial and error learning—prompts are gradually withdrawn when environment serves to prompt correct reponse

G & M: extent to which students are able to use what they have been taught across setting and time.

Naturally occurring: increase probability that this skill is likely to be reinforced in natural env.

Program common stimuli: make teaching situation as much like real life setting as possible

Community-based: teaching in the actual setting where students will use new skills. Research-proven strategy if instruction is well-designed.

Direct measurement occurs when it records use of the skill in a natural environment. Frequent measurement should occur as often as the instruction in the skill

People with intellectual disabilities and/or developmental disabilities, like all people, have inherent sexual rights. These rights and needs must be affirmed, defended, and respected.

Last Word: Statement on Sexuality

Educational Placement Alternatives:

General education class 17%
Resource room 27%
Separate class 49%
Separate schools or residential facilities, including institutions 7%

General education class placements do not guarantee social acceptance or appropriate instructional programming.

Full/partial inclusion in elementary using cooperative learning groups, peer tutoring, etc.

Functional curriculum in secondary using life skills and community based instruction.

Acceptance and Membership

Jill is a strong example of social role valorization:

“The major goal of SRV is to create or support socially valued roles for people in their society, because if a person holds valued social roles, that person is highly likely to receive from society those good things in life that are available to that society, and that can be conveyed by it, or at least the opportunities for obtaining these.

In other words, all sorts of good things that other people are able to convey are almost automatically apt to be accorded to a person who holds societally valued roles, at least within the resources and norms of his/her society (http://www.socialrolevalorization.com/).”

Misconceptions

MYTH:
Once diagnosed, a person remains within this classification for the rest of his/her life.

FACT:
Level of mental functioning does not necessarily remain stable, particularly for mild.

Misconceptions

MYTH:
If an individual achieves a low score on an IQ test, this means that his or her adaptive skills are also subnormal.

FACT:
Possible for an individual to have a low tested IQ and still have adequate adaptive skills; depends on training.

Misconceptions

MYTH:
Children with Down syndrome are always happy and pleasant to have around.

FACT:
The idea that they are significantly more so than other children is exaggerated.

Misconceptions

MYTH:
Most children with intellectual disabilities look different from other children.

FACT:
The vast majority of children who have intellectual disabilities look like children without disabilities.