COVER PAGE

NAME
IDENTITY PAGE
CERTIFICATE
ACKNOWLEDGEMENT
INDEX
GENERAL TOPIC

INTELLECTUAL
DISABILITY
SPECIFIC TOPIC
FACTORS
RESPONSIBLE FOR ID;
CHROMOSOMAL OR
ENVIRONMENTAL?
ABSTRACT
Intellectual disability (ID) is a neurodevelopmental condition
characterized by significant limitations in both intellectual
functioning and adaptive behavior. It affects individuals
across a range of severity levels, from mild to profound, and
typically manifests during the developmental period, usually
before the age of 18. Intellectual disability can result from a
variety of causes, including genetic factors (e.g., Down
syndrome, Fragile X syndrome), prenatal exposures (e.g.,
alcohol, drugs, infections), perinatal complications, and
postnatal environmental factors (e.g., head injury,
malnutrition). Individuals with ID often face challenges in
learning, problem-solving, communication, and daily life
skills, which can impact their ability to live independently.
While ID can significantly affect a person’s quality of life,
early intervention, individualized education programs, and
supportive services can improve outcomes. Treatment
strategies often focus on enhancing cognitive and adaptive
skills through educational and therapeutic interventions
tailored to the individual’s needs. The inclusion of individuals
with intellectual disabilities in social, educational, and
employment settings is increasingly emphasized, promoting
greater community integration and participation. This abstract
provides an overview of the key characteristics, causes, and
interventions associated with intellectual disability, as well as
the ongoing efforts to improve the quality of life and societal
inclusion for those affected by this condition.
INTRODUCTION
Intellectual disability (ID) is a developmental condition
characterized by limitations in intellectual functioning
and adaptive behavior, which affect a person’s ability to
perform daily tasks and participate in activities typically
expected for their age. It is generally diagnosed before
the age of 18 and presents in varying degrees of
severity, from mild to profound. The condition can
result from a wide range of causes, including genetic
factors (such as Down syndrome or fragile X
syndrome), prenatal exposures (e.g., maternal
infections, alcohol use, or malnutrition), birth
complications (e.g., oxygen deprivation), or
environmental factors (such as lead poisoning or
childhood trauma).
Intellectual disability impacts cognitive abilities,
including reasoning, problem-solving, memory, and
learning. In addition to cognitive impairments,
individuals with ID often experience challenges in
communication, social interactions, self-care, and other
adaptive skills necessary for independent living. These
challenges can affect all aspects of a person’s life, from
education to employment, social integration, and health
care.
While the precise causes and manifestations of
intellectual disability can vary widely, it is important to
recognize that individuals with ID have unique
strengths, and with appropriate support, they can lead
fulfilling lives. Early identification, intervention, and
individualized support programs are critical in helping
individuals with intellectual disabilities reach their full
potential and lead more independent, satisfying lives.
Over the years, efforts to improve societal inclusion and
reduce stigma have also increased, promoting greater
understanding, support, and acceptance for people with
ID in various community settings.
The Diagnostic and Statistical Manual of Mental
Disorders, Fifth Edition (DSM-5) provides specific
criteria for diagnosing Intellectual Disability (ID),
which is classified under the category of
Neurodevelopmental Disorders. The DSM-5 outlines
intellectual disability as a disorder characterized by
significant limitations in both intellectual functioning
and adaptive behavior, affecting a person’s ability to
perform daily activities and meet age-appropriate
expectations in a variety of life settings.
According to ICD-10 mental retardation is a
condition of arrested or incomplete
development of the mind, which is
especially characterised by impairment of
skills characterised by impairment of skills
manifested during the developmental period
contributing to the overall level of period,
contributing to the overall level of
intelligence- cognitive, language, motor and
social abilities
Severity of Intellectual Disability:
The DSM-5 provides a framework for classifying the
severity of intellectual disability based on the level of
adaptive functioning:
 Mild ID: Individuals may have an IQ between 50–
70 and are often able to live independently with
minimal support. They may struggle in academic
settings but can usually develop practical life skills.
 Moderate ID: Individuals have an IQ between 35–
50. They may require more support in daily life and
are likely to achieve limited independence, often
needing assistance with basic self-care and social
interactions.
 Severe ID: Individuals have an IQ between 20–35.
They typically require significant support in all
areas of functioning and may have substantial
impairments in communication, social skills, and
self-care.
 Profound ID: Individuals have an IQ below 20–
25. They have severe limitations in all areas of
functioning, including communication and physical
mobility, and require intensive, lifelong support for
all aspects of daily living.
REVIEW OF
LITERATURE
1)

D. E. M. C. Jansen, B. Krol, J. W. Groothoff, D.

Post
14 January 2004
People with intellectual disability and their
health problems: a review of comparative
studies

Abstract
Background The transition of people with
intellectual disability (ID) from care
institutions to the community – according to
Western policy – results in a shift of
responsibility towards primary health care
services. In order to provide optimal care to
people with ID living in the community,
general practitioners need to be aware of
the specific health problems of this patient
category. The aim of this paper is to present
an overview of recent studies on the specific
health problems of people with ID, in
particular on health problems of people with
ID in the community, compared to those of
the general population.
Method To reliably compare health
problems of individuals with and without ID,
this review is limited to comparative
research using a control group of individuals
without ID. The focus of the review
concentrates on international literature,
published between 1995 and 2002.
Results Most comparative research
among people with ID presents higher
prevalence rates for epilepsy, diseases of
the skin, sensory loss and (increased risk of)
fractures. These health problems are
specific for people with ID, both in general
and living in the community in particular.
Conclusions there are only few studies
focusing on health problems in people with
ID in which a control group of individuals
without ID is included. Most comparative
studies on health problems in people with ID
are based on comparison with reported
prevalence rates of general health surveys.
2) Mauricio Medina-Rico, Hugo López-
Ramos & Andrés Quiñonez
Published: 04 October 2017
Sexuality in People with Intellectual Disability:
Review of Literature
Sexuality is an important component in people’s
lives, however forgotten in people with intellectual
disabilities. Faced with this situation, people with
intellectual disabilities tend to be in a situation of
vulnerability with greater risk of sexual abuse and
altered sexual behavior that give them difficulties
to have a lasting relationship. A review of the
literature was performed in the databases: Medline,
Embase, Lilacs and Scielo. Included studies must
mention the perception of people with intellectual
disabilities about their sexuality in relation to:
education, difficulties, strengths, gender
identification, the role of the family and their close
circle. 898 articles were reviewed by title and
abstract. In total, 38 references were selected for
full-text review. Being evident the importance of
sexuality in people with intellectual disability, this
topic should be addressed from a personal level and
their close circle (family and support networks)
through sex education about: sexuality, anatomy
and functioning of the body, sexual abuse, use of
 contraceptives, and sentimental relationships.
Sexuality in people with intellectual disability
should be approached in a multidimensional way.
An overarching theme is to teach family and
educators not to diminish the value that represents
sexuality in people and to assist when needed to
address the process of sexual development and
sexuality.

3)Evan E. Dean; Kim W. Fisher; Karrie A. Shogren;

Michael L. Wehmeyer
December 01 2016
Participation and Intellectual Disability: A Review of
the Literature

Participation is a central aspect of human

functioning and a key focus of research and
practice in the intellectual disability field.
However, there is not an accepted definition of
participation that guides research and practice.
To inform the development of a definition, a
scoping review of the intellectual disability
literature from 2001−2015 was conducted.
Findings suggest that existing research rarely
uses definitions of participation, but does
examine participation across multiple domains
 and addresses issues of access and inclusion.
Less focus was placed on individual aspects of
participation such as meaning, responsibility, and
choice. Based on the findings, implications for
future research and practice are provided.

4)M. Warburg
07 July 2008
Visual impairment in adult people with
intellectual disability: Literature review
The present paper reviews studies on
the prevalence of visual impairment (VI)
in adults with intellectual disability (ID).
Every publication describes an alarming
prevalence of blindness and VI. Cataract
and keratoconus were common. Many
cases of poor distance vision were
treatable by ordinary spherical or
astigmatic glasses, but few people had
had such prescriptions. Elderly residents
in community and institutional care often
did not receive glasses for near vision.
Professional assessments disclosed
higher prevalences of VI than
questionnaires mailed to the care
personnel. The prevalence of VI
 increased dramatically with the severity
of ID and with age. Regular professional
assessment of eye disorders, visual
acuity and refraction are warranted in
residents in both hospital and
community care.

5)Barth Oeseburg; Geke J Dijkstra; Johan W

Groothoff; Sijmen A Reijneveld; Daniëlle E. M. C
Jansen
April 01 2011
Prevalence of Chronic Health Conditions in Children
With Intellectual Disability
A systematic review of the prevalence rates of chronic
health conditions in populations of children with
intellectual disability was provided. We identified
2,994 relevant studies by searching Medline, Cinahl,
and PsycINFO databases from 1996 to 2008. We
included the 31 studies that had sufficient
methodological quality. The 6 most prevalent chronic
health conditions in children with intellectual
disability were epilepsy (22.0/100), cerebral palsy
(19.8/100), any anxiety disorder (17.1/100),
oppositional defiant disorder (12.4/100), Down
syndrome (11.0/100), and autistic disorder (10.1/100).
The reported prevalence rates of chronic health
conditions in this population was much higher than in
the general population. However, both the number of
studies that were included and the number of chronic
health conditions they reported about were limited.
There is an urgent need for better evidence on the
prevalence of chronic health conditions among
children with intellectual disability.

6)Stewart L. Einfeld,Louise A. Ellis &Eric Emerson

25 May 2011
Comorbidity of intellectual disability and mental
disorder in children and adolescents:
Background Mental disorder and intellectual
disability each accounts for substantial burden of
disease. However, the extent of this co-occurrence
varies substantially between reports. We sought to
determine whether studies in children and/or
adolescents with acceptably rigorous methods can
be distinguished from existing reports, and
whether key risk factors could be ascertained.
Method Published studies investigating the
prevalence of mental disorders in children and/or
adolescents with intellectual disability were
reviewed.
Results Nine studies with acceptable methods
were identified, 4 which compared the prevalence
of mental disorder in populations of those with and
without intellectual disability, and a further 5
studies that estimated the rates of mental disorder
in those with intellectual disability were identified.
Collectively, these studies demonstrate rates of
comorbidity for children and adolescents between
30 and 50% with a relative risk of mental disorder
associated with intellectual disability ranging from
2.8–4.5. The risks for this comorbidity associated
with age, gender, severity of intellectual disability,
and socioeconomic status remain uncertain.
Conclusions Appreciation of this comorbidity
needs to be a fundamental component of both
mental health and intellectual disability services.

7)Suzie Beart, Gillian Hardy, Linda Buchan

First published: 04 February 2005
How People with Intellectual Disabilities View Their
Social Identity: A Review of the Literature
Objectives This review aims to show how
people who are categorized as having
intellectual disabilities view their social
identity, and the impact that this identity
has on them. It is felt that research in this
area gives valuable insights that are directly
applicable to, and raise important questions
about, clinical work with people with
intellectual disabilities.
Methods The diagnostic criteria for and the
process of gaining the identity of intellectual
disabilities are considered. The literature on
stigma and social identity is reviewed and
methodological difficulties within these
studies are highlighted.
Results It is argued that having intellectual
disabilities is a powerful and stigmatizing
identity. There is a consistent finding in the
literature that many people with intellectual
disabilities appear unaware of this identity.
The possible reasons put forward for this
finding are considered, and the clinical
implications of the studies reviewed are
discussed.
Conclusions The few studies that have
been undertaken offer useful insights into
the effects that having an identity of
intellectual disabilities has on an individual.
It is argued that further research is needed
and that this will be particularly applicable
to intellectual disabilities services, where
many questions concerning the possible
impact of an intellectual disabilities identity
remain unanswered.
8)Agnes Kozma; Jim Mansell; Julie Beadle-
Brown Eric Emerson
May 01 2009
Outcomes in Different Residential Settings for People
With Intellectual Disability:
Large-scale reviews of research in
deinstitutionalization and community living were last
conducted about 10 years ago. Here we surveyed
research from 1997 to 2007. Articles were included if
the researchers based the study on original research,
provided information on the participants and
methodology, compared residential arrangements for
adults with intellectual disability, and were published
in English-language peer-reviewed journals. Sixty-
eight articles were found. In 7 of 10 domains, the
majority of studies show that community-based
services are superior to congregate arrangements.
These studies provide more evidence of the benefits
of deinstitutionalization and community living and
continue to indicate variability in results, suggesting
that factors other than the basic model of care are
important in determining outcomes.
9)S. Cleaver, H. Ouellette-Kuntz, A. Sakar
 11 February 2010
Participation in intellectual disability
research: a review of 20 years of studies
Background Researchers have noted
difficulties in attracting adequate numbers
of participants with intellectual disabilities
(ID) to their studies.
Methods This study was a review of
participation by adults with ID in research
conducted in South Eastern Ontario over a
20-year period (1987–2006). Original
research studies were identified by local
investigators and then reviewed for
inclusion and exclusion criteria. The report
of each study was then reviewed by three
reviewers and key information was
extracted. The extent of study participation
was calculated using three methods and
compared along with key design
characteristics.
Results Nine studies met all
inclusion/exclusion criteria and provided
sufficient data to calculate participation.
Among the studies there was a variety of
purposes, research designs and recruitment
strategies. Using the participant/approached
calculation, participation varied between
41.8% and 100%. Higher participation was
observed in studies where investigators had
direct access to participants, the data
collection was non-invasive and consent was
required from substitute decision-makers
only. There was no clear trend of increasing
or decreasing participation over time.
Conclusions Researchers seeking the
participation of adults with ID in their
studies must incorporate factors influencing
participation into study designs to ensure
robust results and effective use of research
resources.
10) Claudio Di Lorito, Alessandro Bosco,
Linda Birt, Angela Hassiotis
12 December 2017
Co-research with adults with intellectual
disability
Background
Co-research with people with intellectual disability is a
distinct form of patient and public involvement (PPI).
This systematic review summarize published studies
and protocols to report on the process of co-research in
social and healthcare research.
Method
Relevant studies were identified using electronic
searches on ASSIA, PsycInfo and MedLine. Study
quality was assessed, and information relevant to the
process of working with co-researchers was extracted
and thematically analysed.
Results
Thirteen studies were retrieved. Data are reported under
three themes: (i) challenges of co-research; (ii)
facilitators of co-research; (iii) benefits of co-research.
Best practice is presented as a model of co-research.
Content analysis on 12 research protocols identified
four themes related to PPI.
Conclusions
All stakeholders involved in co-research with people
with intellectual disability can benefit, providing there
is adequate infrastructure to accommodate and
empower the co-researchers. Many current intellectual
disability research projects still lack systematic
involvement of PPI members.
11) M. M. L. Verdonschot, L. P. De Witte,
E. Reichrath, W. H. E. Buntinx, L. M. G.
Curfs
11 December 2008
Impact of environmental factors on
community participation of persons with an
intellectual disability:
Objectives To describe which
environmental factors have an impact on
community participation of persons with an
intellectual disability.
Methods A systematic literature search
was conducted for the period of 1996–2006
in Pubmed, CINAHL and PSYCINFO. Search
terms were derived from the International
Classification of Functioning, Disability and
Health. Three investigators assessed the
relevance of the studies identified using
predefined selection criteria. Aspects of
community participation included were:
domestic life; interpersonal interactions and
relationships; major life areas; community,
civic and social life. Environmental factors
included were: products and technology;
natural environment and human-made
changes to environment; support and
relationships; attitudes; services, systems
and policies.
Results Out of 236 initial hits, 9
quantitative studies and 2 qualitative
studies met the predefined selection criteria
and were included in the study. Various
research instruments were used in the
studies and only one study used a
conceptual framework. The review allowed
the identification of a number of
environmental factors positively affecting
participation: opportunities to make choices;
variety and stimulation of the environment
of facilities; opportunities for resident
involvement in policy making; small
residential facilities; opportunities for
autonomy; vocational services; social
support; family involvement; assistive
technology; and positive staff attitudes. A
number of identified environmental factors
negatively affecting participation are: lack of
transport and not feeling accepted.
Discussion It can be concluded that little
has been published about the impact of
environmental factors on community
participation. Many studies do not clearly
define the concept of community
participation. Research on the impact of
environmental factors on community
participation so far seems not to be based
on a theoretical framework. Most studies
focused on the impact of services on
community participation in general.
12) Jason Buckles,Ruth Luckasson &Elizabeth
Keefe
06 Mar 2013
A Systematic Review of the Prevalence of
Psychiatric Disorders in Adults With Intellectual
Disability
Research regarding the prevalence of
psychiatric conditions co-occurring with
intellectual disability in adults was reviewed.
Particular attention was paid to the qualities of
sampling and diagnostic methodology, which
have been identified as needs in two recent
reviews. Sixteen articles published in peer-
reviewed journals between 2003 and 2009 met
inclusion criteria for this review. Overall
prevalence rates for co-occurring psychiatric
symptoms or disorders reported in these
studies ranged from 13.9% to 75.2% with
much of this variation due to differences in the
diagnostic criteria utilized and the specific
samples examined. Results indicated that
although several studies have evidenced
improvement in methodology, problems
remain regarding sampling and general lack of
consistency regarding diagnostic definitions
and tools. Suggested directions for future
research include expansion of geographic and
cultural diversity in participants, increased use
 of population-based sampling, and improved
concurrence regarding evaluation methods
and diagnostic criteria.
13) Hadewych R. M. M. Schepens, Joris Van
Puyenbroeck, Bea Maes
21 December 2018
How to improve the quality of life of elderly
people with intellectual disability:
Background
The increased life expectancy of people with
intellectual disability intensifies the need for age-
specific support. Research on effects of support
strategies on quality of life (QoL) of these people
remains scattered.
Methods
A systematic search of peer-reviewed publications since
1995 was performed, with participants having
intellectual disability and being aged ≥50 years. Studies
include experimental, observational and exploratory
designs, analysing links between support strategies and
outcomes. The present authors adopted a narrative
approach.
Conclusions
The studies indicated the importance of funding,
provision and organization of services/personnel,
education, and cooperation among different support
systems. The provision of good housing or activities,
support when these provisions change, provision of
(mental) health care, dementia care and end-of-life care,
life story work, future planning and support for
(I)ADLs are crucial.

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