Intellectual Disabilities

Types
• Intellectual Disability (Intellectual Developmental Disorder).
• Global Developmental Delay.
Intellectual Developmental Disorder
• Intellectual Disability is a descriptive term for subaverage intelligence
and impaired adaptive functioning arising in the developmental
period (< 18 years) (Neurocognitive disorder after the age of 18)
Diagnostic and Statistical Manual of Mental
Disorders -5
• Intellectual Disability is composed of three diagnostic criteria (DSM-5,
American Psychiatric Association):
• Deficits in intellectual functions (e.g., reasoning, problem solving, planning,
abstract thinking, judgment, academic learning, learning from experience),
verified through clinical assessment and formal intelligence testing. One
criterion to measure intellectual functioning is an IQ test.
• Deficits in adaptive functioning. These result in impairments in
developmental and sociocultural standards and limit functioning in
activities of daily life, such as social participation and independent living.
• The onset of A and B occur during the developmental period (childhood or
adolescence).
Global Developmental Delay

• Global Developmental Delay refers to individuals younger than 5 who

do not meet expected developmental milestones in several areas of
intellectual functioning, but are unable to undergo formal
standardized assessments (e.g., they are too young, are blind or
deaf).
History
• cognitive skills delays
• language delay
• delays in adaptive skills

Developmental delays vary depending on the level of MR/ID and the etiology. For example, in mild nonsyndromic MR/ID, delays may not be notable until the preschool years,
whereas with severe or profound MR associated with syndromes or extreme prematurity, for example, significant delays in milestones may be noted from birth.
Cognitive delay
Difficulties with:
Memory
Problem-solving
Logical reasoning
Language delay:
One of the first signs of MR/ID may be language delays, including
• Expressive language (speech)
• Receptive language (understanding).

Red flags include no mama/dada/babbling by 12 months, no 2-word phrases by age 2, and parents reporting they are concerned that the child
may be deaf.
Adaptive Functioning
• Conceptual skills: This includes language and literacy; mathematics;
time and number concepts; and self-direction.
• Social skills: This includes interpersonal skills; social responsibility;
self-esteem; gullibility; social problem solving; and the ability to
follow rules/obey laws. It also includes naïveté. This lack of wariness
leads to victimization.
• Practical skills: This includes activities of daily living (personal care). It
also includes occupational skills, healthcare, travel/transportation,
schedules/routines, safety, use of money, use of the telephone.
Fine Motor

• Significant delays in activities such as self-feeding, toileting, and

dressing
• Prolonged, messy finger feeding and drooling are signs of oral-motor
incoordination.
Social delays
Lack of interest in age-appropriate toys and delays in imaginative play
and reciprocal play with age-matched peers.
Rather than their chronological age, play reflects their developmental
levels.
Gross Motor
• Infrequent unless underlying condition caused both ID and CP
Behavioural disturbances
• Infants and toddlers may be more likely to have difficult
temperaments, hyperactivity, and disordered sleep
• Associated behaviours may include aggression, self-injury, defiance,
inattention and hyperactivity.
Neurologic and physical abnormalities
• Prevalence of ID is increased among children with seizure disorders,
microcephaly, macrocephaly, history of intrauterine or postnatal
growth retardation, prematurity, and congenital anomalies
Plan
• comprehensive medical exam;
• possible genetic and neurological testing;
• social and familial history;
• educational history;
• psychological testing to assess intellectual functioning;
• testing of adaptive functioning;
• interviews with primary caregivers;
• interviews with teachers;
• social and behavioural observations of the child in natural environments
Family History
• Guidelines from the American Academy of Paediatrics recommend that the
evaluation of a child with MR/ID includes family history of:
• MR
• Developmental delays
• Consanguinity
• Psychiatric diagnoses
• Congenital malformations
• Miscarriages
• Stillbirths
• Early childhood deaths
• The clinician should construct a pedigree of 3 generations or more
Co-existing disorders
• Autism Spectrum Disorder (ASD)
• Attention-Deficit/Hyperactivity Disorder (ADHD)
• Depressive and Bipolar Disorders
• Anxiety Disorders
• Impulsive Control Disorders
• Cerebral Palsy
• Major Neurocognitive Disorder
• The prevalence of Intellectual Disability is about 1%
Physical examination
• Height
• Neurologic: assessments of head growth (for
microcephaly/macrocephaly), muscle tone (for hypotonia or
spasticity), strength and coordination, deep tendon reflexes,
persistent primitive reflexes, ataxia, and other abnormal movements,
such as dystonia or athetosis.
• Sensory: More likely than other children to have visual impairment
and hearing deficits
• Skin: Findings can include hyperpigmented and hypopigmented
macules, such as café-au-lait macules (NF1), ash-leaf spots
(associated with tuberous sclerosis), fibromas
Workup
Laboratory studies
• Genetic hybridization (CGH), or microarray
• High-resolution karyotype
• Fragile X testing
• FISH probes
Imaging studies
• Brain magnetic resonance imaging (MRI
• Head computed tomography (CT) scanning
• Skeletal films
 Workup(Additional tests)
• Bayley Scales of Infant Development
• Stanford-Binet Intelligence Scale
• Wechsler Preschool and Primary Scale of Intelligence-Revised
(WPPSI-R)
• Wechsler Intelligence Scale for Children–IV (WISC-IV)
• Vineland Adaptive Behavior Scales-II
Bayley Scales of Infant Development

• Normalized for ages 2-49 months

• Subtest scores for receptive and expressive language, gross motor,
fine motor, cognitive/problem-solving ability, and sustained attention
 Stanford-Binet Intelligence Scale

•Normalized for ages 2 years to 23 years

•Fifteen subtests for assessment of 4 key areas of cognitive

proficiency: verbal reasoning, abstract/visual reasoning, quantitative
memory, and short-term memory
 Wechsler Preschool and Primary Scale of
Intelligence-Revised (WPPSI-R)

•Normalized for ages 3 years to 7.25 years

•Twelve subtests for assessment of verbal and nonverbal intelligence
Wechsler Intelligence Scale for Children–IV
(WISC-IV)

•For ages 6 years to 16 years, 11 months

•Verbal and nonverbal intelligence scores derived from 12
subtests
Vineland Adaptive Behavior Scales-II

•For neonates to adults

•Measures ability to perform daily activities required for personal
and social sufficiency; adaptive or functional behaviors rated by
interviewing the patient or parent/caregiver
•Deficiencies in at least 2 areas of adaptive skills required to
meet the MR/ID diagnostic criteria
Severity
• Severity is specified as mild, moderate, severe, or profound based on
the level of impairment in adaptive functioning, and not IQ scores,
because it is adaptive functioning that determines the level of
support required. The three domains of adaptive functioning are
conceptual, social, and practical.
• In addition to severity, the specifier “associated with a known medical
or genetic condition or environmental factor” may be given.
 .
• Mild: IQ scores of approximately 55-70. Some support with complex daily living tasks, health care and
legal decisions, and vocational training is warranted. Immature social development and social
judgment is demonstrated in addition to difficulties in learning academic skills with support needed in
order to meet age-related expectations.

• Moderate: IQ scores of approximately 40-55. Extended teaching of care for basic personal needs may
be required before an individual may obtain independence. Ongoing supports for household tasks are
expected in addition to the need for vocational supports. Social and communicative behaviors may be
significantly less complex than peers and social judgment is typically limited. Language and pre-
academic skills may develop slowly and the learning rate of academic skills is significantly behind
peers.

• Severe: IQ scores between 25 and 40. Support is expected for all activities of daily living and
supervision is needed at all times. Spoken language may be quite limited and may require
augmentation through devices or other means. Attainment of conceptual skills is vey limited with
respect to written language, numbers, quantity or time.

• Profound: IQ scores below 25. The individual is dependent on others for all aspects of daily living. Very
limited understanding of symbolic communication (speech and gesture) is typical and needs may be
expressed through nonverbal means. Use of objects may be goal-directed and visuospatial skills such
as matching or sorting may be acquired. Co-occuring motor and sensory impairments may impede
functioning.
Causes
Prenatal conditions (genetic)
• Down syndrome
• Fragile X syndrome
• Prader-Willi syndrome
• Angelman syndrome
• Williams syndrome
• DiGeorge syndrome and so on.
Environmental causes
• .Fetal alcohol syndrome and fetal alcohol effect
• Congenital hypothyroidism
Perinatal/postnatal conditions
• Congenital cytomegalovirus (CMV)
• Congenital rubella
• Intraventricular haemorrhage related to extreme prematurity
• Hypoxic-ischemic encephalopathy - Always results in combined
CP/MR
• Traumatic brain injury
• Meningitis
• Trichomoniasis during pregnancy
• Neurodegenerative disorders
DD
• Autism Spectrum Disorder
• Borderline intellectual functioning
• Child Abuse, Neglect, Posttraumatic Stress Disorder
• Learning Disorder, Reading
• Learning Disorder, Written Expression
• Mathematics Learning Disorder
• Paediatric Depression
• Severe communication/language disorders
Management
• The mainstay of ID treatment is the complex habilitation plan for the
individual which requires input from care providers from multiple
disciplines, including special educators, language therapists,
behavioural therapists, occupational therapists, and community
services that provide social support and respite care for families
affected by ID.
• No specific pharmacologic treatment is available for cognitive
impairment in the developing child or adult with ID.
Developing an Individualized Support Plan
• First goal: Assess the individual needs and abilities of each person.
• Second goal: Identify a strategic approach that maximizes functioning.
This is accomplished by using strengths to offset limitations.
Ultimately, optimize functioning and life satisfaction.
• Early intervention. First, inform caregivers about early child
development. Second, help children grow and learn by working with
their strengths and limitations. Third, families learn specialized
techniques to help children function to the best of their abilities.
Individualized Educational Plan
• Depending on IQ
• Special Schools

• Pros and cons of mainstreaming?

Applied Behavioural Analysis

• First, complex tasks or behaviours are broken down into smaller steps. For instance, suppose a
student needs to learn to raise his hand before speaking in a classroom. This might be broken
down into five steps:
• 1) Raise the hand.
• 2) Raise the hand while remaining silent.
• 3) Keep the hand raised, remaining silent, until the teacher acknowledges you.
• 4) Once the teacher acknowledges you, put the hand down.
• 5) After the hand is down, speak.
• Skills are systematically introduced in small steps. As one small skill is mastered, the next step is
introduced.
• Students learn by making simple associations between cause and effect. If they respond
correctly for that step, they are immediately rewarded. If they respond incorrectly, nothing
happens.
• Life skills
• Social skills
• Supported employment
• Housing and community Integration
• Physical and sensory skill training
• Speech therapy
• Financial support
Social Stigma
• How to deal with it?
IDEA
• The Individuals with Disabilities Education Act (IDEA) is the federal law in US that secures special education
• Children aged 0-3 years with cognitive deficits are served by programs like family training, counseling, home visits, speech-
language services, occupational therapy and physical therapy.
• Once a child reaches age 3, referral from early intervention to the public school systems’ special education department is made.
An Individualized Education Program (IEP) may be developed to transition the child to a special education preschool setting and
may involve a specific list of special services, modifications or accommodations needed in order for the child to be educated.
• Prior to age 6-7 years, children with cognitive deficits are likely to have an IEP for developmental delay, but this classification
expires at age 7 necessitating the IEP team to reclassify a child following a school-based evaluation with one of the categories
mentioned above. It is important to note that psychoeducational testing completed by public schools does not result in a medical,
psychiatric or psychological diagnosis; results of school evaluations are utilized to determine eligibility for services and placement
and academic planning in the school setting.
• Children with IEPs are permitted to remain in the public school system until the age of 21. As the child progresses, the IEP will be
revised to include transitional planning (around age 14-15 years) to help the child and family prepare for life after high school.
• Local community mental health centers and agencies may provide case management for individuals with intellectual disability to
assist in the provision of resources and community-based services. Application for Supplemental Security Income (SSI) for the child
may be warranted. Caregivers may wish to extend guardianship over a child with an intellectual disability, pending severity, in
order to have oversight of the child’s medical, legal and financial decisions after the child turns 18 years old.
Case Study:
XYZ is an 18 year old young man with significant intellectual disabilities
who is attending his neighbourhood high school. He receives daily
instruction in Literacy (reading, writing, and communication), Math,
and Science. XYZ also is involved in vocational and daily living skill
training. His coursework is delivered in individual and small group
settings in the special education classroom. XYZ also participates in a
school-based enterprise through the Occupational Course of Study (a
state endorsed curriculum for students with special needs leading to a
high school diploma) and an on-campus work placement in the
school library.
 XYZ has spastic quadriplegic cerebral palsy and uses a manual wheelchair for mobility which has
been adapted with trunk. He is able to use his right hand to manipulate larger items and can use his
left hand for stabilization. XYZ receives physical therapy one time a week for 30 minutes and has
ongoing therapy services in the classroom including positioning on adaptive equipment. XYZ’s
physical therapist would like for him to have a motorized wheelchair but funds have not been
available. XYZ also receives occupational therapy on a consultative basis. His teacher and the
occupational therapist. XYZ has little intelligible speech other than single words and yes/no
responses but within the classroom has used an iTalk2 to communicate simple needs. He does not
use an augmentative communication device at home but does have a picture board which
transitions with him between school, the community, and home. XYZ receives speech therapy 2
times a week for 30 minutes each session.
XYZ has generalized tonic-clonic seizures which are 85% controlled with two different anticonvulsant
medications (Tegretol and Mysoline). He is fed through a gastrostomy tube although he is able to
take some pureed foods by mouth in limited amounts. XYZ can feed himself by mouth using a CP
Feeder but has to be closely monitored and reminded to eat slowly to avoid asphyxiation. Usually
XYZ is only allowed to feed himself during special occasions such as a class party or special meal.
The gastrostomy tube placement was primarily due to asphyxiation of food during meal times that
resulted in recurrent upper respiratory infections.
These URIs have greatly decreased since his surgery. A functional vision assessment
has indicated that his visual acuity with corrective lenses at near distances is 20/80
and at far distances is 20/100. His most effective visual field is slightly below eye
level and he is able to localize to visual stimulus and fixate his gaze on objects and
people as well as shift his gaze. XYZ does not like wearing his glasses but is
cooperative in this area most of the time. XYZ has good hearing. XYZ and his family
plan for him to stay in the public schools until he ages out at age 21 which will
provide him with three more years of services. He lives at home with mother, step-
father, 11 year old sister, and a great aunt that helps with his care. XYZ also has one
older brother who is in college. The funding source is needed which will provide
XYZ with an array of services based on his individual needs including: augmentative
communication devices, case management, one-on-one community and home
support, personal care services, respite, specialized equipment and services and
medical transportation. Funds will also be available for supported employment and
day support after high school graduation. XYZ has had a comprehensive transition
component in place since his 14th birthday.
The development of a complete transition component was determined appropriate for XYZ at an earlier age
due to his complex needs and the length of time needed to obtain appropriate adult services. His school level
transition planning team has consisted of: XYZ and his parents, a special education teacher, case manager, a
regular education teacher, one-on-one worker, and a LEA representative (e.g., school administrator or
diagnostician). He has not been referred for any services other than those he is receiving from Mental Health
through the Developmental Disabilities division. In preparation for transition planning, XYZ has been
administered speech, physical therapy, and occupational therapy assessments focusing on the skills and
equipment needed for functioning in the home and community. XYZs parents have completed Parent
Transition Surveys and XYZ provided input by responding to picture choices in post-school domains. XYZ’s
teacher also administered the Supports Intensity Scale to his parents to determine the frequency, amount, and
type of support needs in the home living, community living, learning, employment, health and safety, and
social activities XYZ will need after graduation from high school. The assessment indicated that XYZ will need
regular and extensive support in all areas of adult life to achieve his post-school goals. In addition he will need
protection and advocacy services for managing money, legal issues, self-advocacy, and protection from
exploitation. It is anticipated that in the area of future employment XYZ will need ongoing supported
employment to work in a competitive employment placement. Using observational data, situational
assessment, and modified picture interest inventories XYZ enjoys interacting with other people, music,
horticulture, computers, and clerical type activities in which he has the opportunity to complete a project. XYZ
responds well to verbal praise and is able to stay focused on a task for 20+ minutes with occasional verbal
redirection
XYZ has developed the skills to operate a variety of switch activated devices (e.g.
button maker, blender, etc.), use a paper shredder. He has worked successfully on
an assembly line in the school-based enterprise and has held an on-campus job in
the school library checking books in and out using a scanning system and shelving
books with the assistance of a teacher assistant. He tried a job in the school
cafeteria bagging cookies for sale but due to hygiene issues (e.g. drooling) it was
determined that this was not a good placement for him. He loves school and is
always eager to learn new skills. He demonstrates a high level of motivation to
please his teachers and his parents report that even when he is sick he begs to go
to school. Everyone who knows him feels that it would be beneficial for him to be
involved in post-secondary education. His recently approved funds will provide
one-on-one ongoing daily and adult living skill training but participation in
continuing or compensatory education classes at the local community college
might be a good option for him. This type of setting would allow him to develop
skills in some of his areas of interest as well as provide a social framework.
His residential plans for after graduation are uncertain. He is very happy at home and indicated that he loves his family. Two of his
classmates have moved into group homes and through classroom discussion and lessons on post-graduate residential options, he
appears to have some understanding of becoming an adult and living more independently, possibly away from his family. his mother
has very mixed feelings about his future living arrangements. As his primary caregiver since birth she feels she would be lost without
him but realizes that as time goes on it might be necessary to seek an out-of-home placement. His father would very much like to see
him move into a group home or other supervised post-school living arrangement as soon after high school as possible. His father
would like to spend more time with his younger daughter and wife and believes that his elderly aunt is not going to be able to assist
them much longer with his personal care. Both his mother and father are very happy about his recent approval for funds and have
stated that this additional support might result in him remaining in their home for several more years. While at home, his mother and
great-aunt provide total physical care. Although XYZ could assist with some personal hygiene tasks this is not an expectation for him
while in the home. Other than insignificant type choices, all decisions are made for XYZ by his parents. He goes into the community
on occasion with his one-on-one worker when she is allowed to use the family wheelchair lift van. XYZ is able to sit in a car using a
seatbelt and then be transferred into a Pogo Buggy for community outings but his parents prefer him not to be transported in that
manner. This limits his community-based learning activities. A great deal of his one on-one worker’s time is spent in the home with
him. While at home XYZ enjoys watching DVDs, looking at books, listening to his I-Pod, watching his younger sister play video games,
family meals, and making music on his electronic keyboard. He has no understanding of money and does not provide input into his
health/medical care. He has been covered under his father’s work insurance policy but his recent approval for a special fund will
assist with medical care, equipment, and supplies. His parents plan to work with his Mental Health case manager to obtain
guardianship since he has now turned 18 years of age.