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INTRODUCTION TO MENTAL
HEALTH CARE OF PEOPLE WITH
INTELLECTUAL DISABILITY
Andrew Hooper
Psychiatrist
IDS Lentegeur Hospital
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 “Dominique”
She lives with her elderly parents in Fish
Hoek.
The parents describe a change in her
behaviour for the past month with temper
tantrums, swearing, restlessness at night,
crying and refusing to go to a weekly social
and OT activity group that she usually
attends.
Prior to this she had been excited to go to
this group, saying that one of the facilitators
is in love with her.
 Questions

1. What could be the matter? ( Differential

Diagnosis)
2.Which health professionals should be involved?
3. How should her parents respond to her report of
her romantic interest?
4. Dominique’s parents hear of her ID diagnosis
when she is 2 years old. What counselling help
might they need ?
 LEARNING OBJECTIVES
1.   Understand the concept of ID: - Intellectual function (IQ)
- Adaptive function
-Age of onset 
2. Be aware of appropriate terminology.
 
3. Know the classification of severity of ID and be able to reproduce the salient features of
the levels of ID.
 
4. Reproduce the approximate population prevalence for the 4 grades of ID.
 
5. Classify the causes of ID and give important examples of each type of cause.
 
6. Demonstrate knowledge of specific important causes of ID:
Down’s Syndrome Tuberous Sclerosis
Fragile X Syndrome
Foetal Alcohol Syndrome Prader-Willi Syndr.

22q deletion Syndrome

7. Know common conditions that can co-occur with I.D. 

Neurological: Cerebral Palsy Psychiatric: Pervasive Dev. Disorders
Epilepsy Conduct Disorders
Sensory impairments Mood and Anxiety D/Os
ADHD
Self-injurious behaviour
8 Understand the interplay between primary deficit and environmental factors in outcomes in
Intellectual Disability. Understand the concepts of developmental conditions and
developmental interventions.
 
9. Understand the distinction between impairment, disability and handicap and understand
the role of environmental factors in this regard.
 
10. Be aware of the emotional impact of work with intellectually disabled persons and be
aware of the likely emotional stress on parents, relatives and caregivers of intellectually
disabled people.
 
11. Be aware of the possible impact of being disabled on the self-concept and feelings of
intellectually disabled people.
 
12. Demonstrate understanding of Secondary Disability in the context of I.D.

13. Be sensitive to stigma issues in work with intellectually disabled people and have
strategies in mind as to how to address these issues.
 
14. Be aware of issues regarding the human rights of intellectually disabled people such as:
dignity, autonomy, participation and relationships including sexual relationships.
  
15. Have a practical approach to behavioural problems in people with ID.
 
16. Understand the roles of multidisciplinary team members in the treatment of behavioural
or psychiatric problems of people with ID.
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What is Intellectual Disability?

Idiot?
Imbecile?
Cretin?
Moron?
Retard?
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Intellectual Disability (ID) or

Intellectual Developmental Disorder

Impaired Intellectual function

Impaired Adaptive Function

Onset in developmental period (before 18 years)

Developmental Focus/
Environmental Focus
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Causes of ID
Prenatal
Perinatal
Postnatal
Toxins
Infections (Especially Meningitis and HIV)
Trauma
Genetic - nonspecific (familial)
- chromosomal
- X linked
- specific gene
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Effects of ID/Response to ID

Individual
Family

Society - Health
- Education
- Social Services
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DSM 5 Intellectual Disability (Intellectual Developmental Disorder)

Diagnostic Criteria
Intellectual disability (intellectual developmental disorder) is a disorder with
onset during the developmental period that includes both intellectual and
adaptive functioning deficits in conceptual, social, and practical domains.
The following three criteria must be met:
A. Deficits in intellectual functions, such as reasoning, problem solving,
planning, abstract thinking, judgment, academic learning, and learning
from experience, confirmed by both clinical assessment and individualized,
standardized intelligence testing.
B. Deficits in adaptive functioning that result in failure to meet
developmental and sociocultural standards for personal independence and
social responsibility. Without ongoing support, the adaptive deficits limit
functioning in one or more activities of daily life, such as communication,
social participation, and independent living, across multiple environments,
such as home, school, work, and community.
C. Onset of intellectual and adaptive deficits during the developmental
period.
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Intellectual function
Adaptive Function

IQ tests
Verbal
Non Verbal

Vinelands Adaptive
Behaviour
Scale
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Degrees of severity of ID
Prevalence rates

• DSM 4 links severity of ID with IQ scores

• Mild --IQ 50-55 to 70 2-3% of population

• Moderate --IQ 35-40 to 50-55 4 per 1000
• Severe --IQ 20-25 to 35-40 1 per 1000
• Profound --IQ below 20-25
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Profound ID
• IQ below 20-25
• Mental age 3 years and below
• 1-2% of those with ID
• Show profound or considerable impairments
in sensorimotor functioning in early childhood
• Will struggle with basic activities of daily
living
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Severe ID
• IQ 20-25 to 35-40
• Mental age 3-5 years
• 3-4% of those with ID
• Little speech during childhood but may learn
to talk
• May acquire some self-help skills (brushing
teeth, washing, dressing, toileting, eating with
utensils etc)
• May learn to count and sight read a few words
• Need to live in fully supervised settings
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Moderate ID
• IQ 35-40 to 50-55
• Mental age 5-7 years
• 10% of people with ID
• ‘Trainable’ – can acquire vocational skills and
work in unskilled or semi-skilled protected
environments
• Acquire communication skills during childhood
• Can attend to personal care with moderate
supervision
• Unlikely to progress beyond grade 2
• Need to live in supervised settings
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Mild ID
• IQ 50-55 to 70
• Mental age 7-10 years
• 85 % of people with ID have mild ID
• Educable (can be literate – may attain up to
Grade 6) and be socially competent, but may
need support in times of stress
• Develop social and communication skills in
preschool and usually have minimal
sensorimotor impairment
• ID usually only picked up at the start of formal
schooling
• Cause of ID often not known in this group
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Important Syndromes
Down Syndrome
Fragile X Syndrome

Prader-Willi Syndrome
Tuberous Sclerosis
22q Deletion Syndrome/VCF Synd.

Foetal Alcohol Syndrome

TB Meningitis
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Behavioural Phenotypes
Foetal Alcohol Syndrome
Down Syndrome
Fragile X syndrome and sex chromosome
syndromes
22q Deletion Syndrome/Velo-cardio-facial
Syndrome
Prader-Willi Syndrome
Tuberous sclerosis
TB Meningitis?
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Down Syndrome
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Down Syndrome

1.Variants
2.Range Intellectual Disability
3.Physical phenotype
4.Development and
behavioral phenotype
5.Associated medical
problems
6.Incidence
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Fragile X Syndrome

1. Mutation on the X
chromosome at the fragile
site
2. Incidence 1 in 2200
3. Mild to severe ID
4. Physical phenotype
5. Behavioural phenotype and
neurological abnormalities
6. Females usually less
impaired
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Family with Fragile X syndrome

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Young man with Fragile X

Syndrome
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Prader Willi Syndrome

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Prader-Willi Syndrome
• Physical Phenotype
• Behavioural Phenotype
• Co-morbidity- Medical
- Psychiatric
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Velo-cardio-facial/22q11.2
Deletion Syndrome
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Velocardiofacial Syndrome
• Microdeletion at 22q11.2 site
• 1 in 3000 births
• Cardiac, palatial, facial malformations,
hypoparathyriodism, thymic hypoplasia, urinary
system abnormalities, haematological problems
• Language and motor delays in children, autistic
traits
• 40% have ID
• Behavioural phenotype: -poor social skills,
psychotic disorder (20-30% and 1-2% of people
with schizophrenia) Bipolar disorder (60%), ADHD
(36%)
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Tuberous Sclerosis
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Tuberous Sclerosis
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Tuberous Sclerosis Complex

• Spontaneous mutation (70%) or autosomal
dominant (30%)
• 1 in 5800 births
• Characteristic facial skin lesion may be present
• Multisystem involvement, 80% have epilepsy,
50% have ID, 40-50% have ASD and 30-50% have
ADHD and many have anxiety and mood related
disorders.
• Brain or renal tumours can cause medical crises.
• Medication with mTOR inhibitors is being
researched
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Foetal Alcohol syndrome

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Foetal Alcohol Syndrome

Physical features
Cognitive and learning problems
Behavioural problems
Social/health care costs
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Developmentally Friendly Environments

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Response
of the
Family/
Effect on
the
Family
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Family
Loss - Grief
- Guilt
- Shame
Ambivalence
- if not dealt with leads to adverse emotional
environments and care giver burnout

Counselling and professional support

needs
Recognizing Ambivalence
Parents and families usually have to deal with
ambivalent feelings towards disabled children
including anger, guilt, shame or even disgust or
hatred together with their ordinary feelings of love
and care.
The negative emotions may be disavowed but could
be expressed in overprotection or stiltedness in
their interactions or in feelings of stress or
exhaustion.
Caregivers and health-care staff face a similar mix of
positive and negative emotional reactions to being
with or working with disabled people. Awareness of
these reactions is needed in order to avoid
“burnout” and to maximise clinical effectiveness.
Family Grief
Parents and families also face a kind of grief when they
become aware that their baby cannot fulfill their hopes
and dreams and they might feel guilty about their
disappointment.
Role of Health Professionals
Psychological support for parents can enable them to
provide the best possible nurturing environment. All
healthcare professionals, not just psychologists or
psychiatrists, should express explicit respect for the
mixed feelings and disappointment families are likely to
experience.
Parents need reassurance of availability of
comprehensive ongoing services and they need to be
given hope that their child’s development can be
supported.
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Effects on the Individual

• Self esteem
• Stigma and discrimination
• Hardship, vulnerability and risk of
exploitation
• Medical/Neurological comorbidity
• Psychiatric comorbidity
Self Concept in the context of ID
Most people with ID are aware, to a
greater or lesser degree, of their
disability, which affects self esteem.

Self esteem is also affected by failures

in various areas like education or social
and occupational achievement.
 Secondary Disability
• An additional limitation or an exacerbation of
a primary physical, cognitive or
psychological disability caused by
experiences relating to the primary disorder
This may be self imposed or develop in the
context of lowered expectations on the part
of important people in the subject’s life

• Defensive behavioural characteristics not

intrinsic to the condition. These challenging
behaviours develop over time as a function of
a poor fit between the person and his
environment
 Stigma
• Potential to subsume identity and individuality
“I am a (…)” instead of
“I am affected by or suffer from (…) but I am a
person in my own right”

• Set of negative expectations associated with a

devalued subgroup or category. Similar to
prejudice.

• Stigma can cause worse suffering than the

primary condition

• Anticipated stigma
• Self stigma
 Management of stigma
Therapeutic encounters are likely to confirm or disconfirm
the patient’s anticipated stigma or self stigmatizing thoughts
– hence stigma should be attended to in all clinical activities
whatever the presenting problems

• Treat patients with dignity and respect

• Make no assumptions- allow the patient to make a fresh

impression without being influenced by previous diagnoses
or assessments

• Promote maximum collaboration and autonomy

• Focus on individual disability/mastery and avoid use of

technical or diagnostic terms which can categorize or label
• Advocate for patients’ rights and rights to treatment
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Diagnosis x or y

Patient’s Problems

Stigma Venn Diagram

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Comorbid Psychiatric Disorders

Reasons for high comorbidity rates:

• Coping ability/stress/adverse events/adverse

environments/vulnerability to abuse

• Behavioural phenotypes

Diagnostic issues and

Diagnostic Overshadowing
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Comorbid Psychiatric Disorders

Higher incidence

ASD, ADHD and Disruptive Disorders,

Psychotic Disorders, Mood disorders and
Anxiety Disorder are common

Can have any psychiatric disorder as in

the general population, but may be
harder to diagnose
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Medical/Neurological
Comorbidity
• Syndrome specific vulnerabilities

• Epilepsy

• Sensory deficits

• Cerebral palsy
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Response from society

Rights in the Context of

Vulnerability?
One To One

End
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Human rights of People with Intellectual

Disability (1)

Declaration on the Human Rights of Mentally

Retarded Persons:

“The mentally retarded person has, to the

maximum degree of feasibility, the same
rights as other human beings”.

General Assembly of the United Nations

1971
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Human rights of People with Intellectual

Disability (2)

Autonomy

Participation

Normalization –including relationships

Protected environments

Rehabilitative services
Impairment, Disability and Handicap
• Impairment
• Loss of psychological, anatomical or physiological function
or structure (e.g. impairment in cognition)
• Disability
• Loss of functional skill as the result of an impairment

• Handicap
• Inability to fulfill a normal role in society as a result of a
disability
• Influence of environment on disability
• Impairments can be handicapping or not depending on how
the environment is structured. Environments can be
adapted to suit ability levels and adapted to optimize
development and learning of skills. This refers to both the
physical conditions as well as the functional skills required
of an individual.
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Rehabilitative services and Healthcare

Multidisciplinary Team
Examples of multidisciplinary work in ID Services
Medical/psychiatric- Medical comorbidity, Psychiatric diagnoses,
Psychopharmacology, counselling
Psychology- Psychotherapy, family therapy, parent counselling,
Psychometric assessments
Occupational Therapy- Functional assessments, behavioural
assessments, stimulation plans, communication assistance, liaison with
special schools, parenting skills, work assessments
Speech therapist- verbal skills, drooling, swallowing problems
Social work- Family support, liaison with community services, accessing
gov. grants, housing, custody, adoption and fostering
Physiotherapy- Mobility, balance, coordination, seating, posture, exercise
therapy, weight loss
Nurses- Parenting skills, basic skills- toileting, eating, dressing, inpatient
care and observation
Dietician- neurological eating issues, fussy eating , weight loss
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Case: Abduraghman 5 yr
• Referred from Red Cross Hosp to LH PGC with
problems of tantrums, hyperactivity, not talking.
Lives with 8 yr old brother and mother in Wendy
House in yard of mother’s family. Mother
unemployed.

• Premature birth. Delayed motor milestones.

Delayed speech. Unilateral hearing loss. Not yet
toilet trained. CT scan indicated hydrocephalus
and VP shunt was inserted. Abduraghman has a
big head but is not dysmorphic. He is hyperactive,
friendly but does not speak.
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Abduraghman (continued)
• Mother is tearful. Wakes at 3 am in fear. She is tired, irritable and
sometimes spanks the patient. Says she is at the end of her
tether.

• The brother is well behaved and cooperative. He tries to comfort

mother if she cries.

• Stress factors: Father murdered 4 months ago- shot by men

known to the family at 3 am outside the door. Relocated to
mother’s family home- overcrowding. Poor relationship between
mother and her siblings. No involvement from late father’s family.

Task: Consider possible diagnoses for each family member and

assign tasks to multidisciplinary team members to manage the
case.
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Practical Approach to Behaviour Change

1.  Check for physical illness
2. Check for side effects of medication
3. Address environmental problems and self
efficacy issues
Provide emotional warmth, care and respect
Improve communication
Increase autonomy, self-determination and self-help skills
4. Check for psychiatric illness and treat using
Bio-Psycho-Social model
5. Consider possible behavioural phenotypes
6. Apply Behaviour modification techniques
Functional analysis- positive and negative re-enforcers
Consistent consequences
Time Out and restitution
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Summary
• Concept of ID
• Degrees of severity of ID
• Causes of ID /Syndromes associated with ID
• Developmentally Friendly Environments
• Effects of ID and the response of the
Individual, Family and Society
• Human Rights and ID
• Psychiatric and Medical Comorbidity
• Practical Approach To Behaviour Change
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Feedback
Rate from 1 (poor) to 5 (good)
1. Did the lecture help to make you aware of your
emotional responses to intellectually disabled
people and their families?
2. Did the lecture provide an approach to helping
intellectually disabled people and their families
in the medical/psychiatric/OT context?
3. Use of audio-visual material
4. Class participation
5. Lecturer to class communication
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