1.

INTRODUCTION TO DISABILITIES

Unit 1: Understanding Disability

1.1 Historical perspectives of Disability - National and International &

Models of Disability;
1.2 Concept, Meaning and Definition - Handicap, Impairment,
Disability, activity limitation, habilitation and Rehabilitation;
1.3 Definition, categories (Benchmark Disabilities) & the legal
provisions for PWDs in India;
1.4 An overview of Causes, Prevention, prevalence & demographic
profile of disability: National and Global;
1.5 Concept, meaning and importance of Cross Disability Approach
and interventions;

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1.1 Historical perspectives of Disability - National and International &
Models of Disability

Disability is not a new concept and not something that has emerged as a
result of increasing numbers of people affected. Rather, disability is an ancient
concept that has existed for as long as people have existed. Although disability
has not changed, our views of the meaning of disability have changed over
time-for the better.
Early Views of Disability
In the medieval era, disability was considered a punishment from God
for one education, care, employment, and a place in the family or in society.
Disability was viewed as inability and those with disabilities were often
viewed as a burden to their families and to society as a whole.
People with disabilities have been considered sick or unhealthy. Being
healthy and having a disability have been perceived as a contradiction in
terms. Disability was seen as an issue blamed on the individual with a
disability. Quality of life of individuals with disability was often seen---and still
is by some---to be poor by others who have very negative views about
disability, even though only an individual can determine the quality of life of
his or her own life.
Changing Views about Disability
By the 1800s disability began to be viewed as an issue that had
individual health and public health implications, as well as social and policy
implications. Disability was seen as a medical problem due to disease, trauma,
or other health conditions. This generally led to the medical model of
disability, which viewed disability as an issue of the person with a disability.
The goal of medical management was cure of the disabling condition or
modification of behaviors of the individual with a disability. The medical
model viewed physicians as the experts who knew what was best for those
with disabilities. Those with disabilities were not seen as capable of knowing
what they needed in the way of health care and other services.
More recently, disability has been viewed as a result of environmental
and societal factors that serve as barriers to the ability of persons with
disabilities to participate fully in their communities or families or to obtain the
care and services they need. Individuals with disability, their families, and
advocacy groups have viewed disability as a consequence of an inaccessible
environment and rejected the medical model in favor of other models, such as

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the social and bio psychosocial models of disability that address barriers to
health care from different perspectives.

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The Models of Disability
Models of Disability are tools for defining impairment and, ultimately,
for providing a basis upon which government and society can devise strategies
for meeting the needs of disabled people. They are often treated with
skepticism as it is thought they do not reflect a real world, are often
incomplete and encourage narrow thinking, and seldom offer detailed
guidance for action. However, they are a useful framework in which to gain an
understanding of disability issues, and also of the perspective held by those
creating and applying the models.
For Models of Disability are essentially devised by people about other
people. They provide an insight into the attitudes, conceptions and prejudices
of the former and how they impact on the latter. From this, Models reveal the
ways in which our society provides or limits access to work, goods, services,
economic influence and political power for people with disabilities.
Models are influenced by two fundamental philosophies. The first sees
disabled people as dependent upon society. This can result in paternalism,
segregation and discrimination. The second perceives disabled people as
customers of what society has to offer. This leads to choice, empowerment,
equality of human rights, and integration. As we examine the different Models
in this and subsequent articles, we will see the degree to which each
philosophy has been applied.
We should not see the Models as a series of exclusive options with one
superior to or replacing previous sets. Their development and popularity
provides us with a continuum on changing social attitudes to disability and
where they are at a given time. Models change as society changes. Given this
degree of understanding, our future objective should be to develop and
operate a cluster of models, which will empower people with disabilities,
giving them full and equal rights alongside their fellow citizens.
Biomedical Model of Health
The biomedical model of health is the most dominant in the western
world and focuses on health purely in terms of biological factors. Contained
within the biomedical model of health is a medical model of disability. In a
similar vein, this focuses on disability purely in terms of the impairment that it
gives the individual.
Medical Model of Disability
The medical model of disability is presented as viewing disability as a
problem of the person, directly caused by disease, trauma, or other health
condition which therefore requires sustained medical care provided in the
form of individual treatment by professionals.
 In the medical model, management of the disability is aimed at a "cure,"
or the individual's adjustment and behavioral change that would lead to an
"almost-cure" or effective cure.

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 In the medical model, medical care is viewed as the main issue, and at
the political level, the principal response is that of modifying or reforming
health-care policy.
What it looks like: People in your community perceive you as
Identity Model
Disability as an identity model is closely related to the social model of
disability - yet with a fundamental difference in emphasis - is the identity
model (or affirmation model) of disability.
This model shares the social model's understanding that the experience of
disability is socially constructed, but differs to the extent that it 'claims
disability as a positive identity'
Social Model of Disability
The social model of disability sees the issue of "disability" as a socially
created problem and a matter of the full integration of individuals into society.
In this model, disability is not an attribute of an individual, but rather a
complex collection of conditions, many of which are created by the social
environment. Hence, the management of the problem requires social action
and is the collective responsibility of society at large to make the
environmental modifications necessary for the full participation of people
with disabilities in all areas of social life.
The issue is both cultural and ideological, requiring individual, community,
and large-scale social change. From this perspective, equal access for someone
with an impairment/disability is a human rights issue of major concern.
Minority Model of Disability
The minority model of disability, also known as sociopolitical model of
disability, adds to the social model, the idea that disability is imposed on top of
impairment via negative attitudes and social barriers, in suggesting that
people with disabilities constitute a entitative, (relating to or possessing
material existence), social category that shares in common the experience of
disability.
The minority model normalizes the experience of disability as a minority
experience no more or less aberrant or deviant than other minority groups'
experiences (sex, race, sexual orientation, etc.). Essentially, this is the
assertion that people with disabilities are, in part, disabled not by what's going
on with our bodies per se, but by the manner in which the able-bodied
majority of society views us and either molds or does not mold itself to allow
us to fit.
Expert or Professional Model of Disability
The expert or professional model of disability has provided a traditional
response to disability issues and can be seen as an offshoot of the medical
model.

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 Within its framework, professionals follow a process of identifying the
impairment and its limitations (using the medical model), and taking the
necessary action to improve the position of the disabled person. This has
tended to produce a system in which an authoritarian, over-active service
provider prescribes and acts for a passive client.
This relationship has been described as that of fixer (the professional)
and fixed (the client), and clearly contains an inequality that limits
collaboration. Although a professional may be caring, the imposition of
solutions can be less than benevolent. If the decisions are made by the
"expert", the client has no choice and is unable to exercise the basic human
right of freedom over his or her own actions. In the extreme, it undermines the
client

Tragedy and/or Charity Model of Disability

The tragedy and/or charity model of disability depicts disabled people
as victims of circumstance who are deserving of pity.
This, along with the medical model, are the models most used by non-
disabled people to define and explain disability.
What it looks like: People in your community assume you will always
need help and pity you. You are considered a burden requiring charitable
resources for support.
Moral Model of Disability
The moral model of disability refers to the attitude that people are
morally responsible for their own disability. For example, the disability may be
seen as a result of bad actions of parents if congenital, or as a result of
practicing witchcraft if not.
This attitude may also be viewed as a religious fundamentalist offshoot of the
original animal roots of human beings when humans killed any baby that
could not survive on its own in the wild. Echoes of this can be seen in the
doctrine of karma in Indian religions.
Legitimacy Model of Disability
The legitimacy model of disability views disability as a value-based
determination about which explanations for the atypical are legitimate for
membership in the disability category. This viewpoint allows for multiple
explanations and models to be considered as purposive and viable.
Empowering Model of Disability
The empowering model of disability allows for the person with a
disability and his/her family to decide the course of their treatment and what
services they wish to benefit from. This, in turn, turns the professional into a
service provider whose role is to offer guidance and carry out the client's
decisions. In other words, this model "empowers" the individual to pursue
his/her own goals.
Social Adapted Model of Disability
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 The social adapted model of disability states although a person's
disability poses some limitations in an able-bodied society, oftentimes the
surrounding society and environment are more limiting than the disability
itself.
Economic Model of Disability
The economic model of disability defines disability by a person's
inability to participate in work.
It also assesses the degree to which impairment affects an individual's
productivity and the economic consequences for the individual, employer and
the state. Such consequences include loss of earnings for and payment for
assistance by the individual; lower profit margins for the employer; and state
welfare payments. This model is directly related to the charity/tragedy model.
Diversity Model of Disability
Disability as Human Variation, an alternative model intended to focus
attention on how society's systems respond to variation introduced by
disability (Scotch and Shriner 1997). Under this model, accessibility in the
built environment, for example, is not solely achieved by anti-discrimination
regulation requiring a 'universal solution; the diversity of disability must be
acknowledged (Scotch and Shriner 1997). Shriner and Scotch (2001) further
question the socio-political definition of disability, in which (all) barriers faced
by people with disability are (built-environment) imposed and therefore
removable, feeling that this common underlying ideology of disability rights
activists and independent living movements insufficiently recognizes that
impairment does have a bearing on accessibility outcomes.
Seeking to overcome the false dichotomy of
ability/disability, Bickenbach et al. (1999) pursue the concept of universalism,
proposing: While the social model is now universally accepted, it is argued
that universalism as a model for theory development, research and advocacy
serves disabled persons more effectively than a civil rights or minority group
approach.
Religious Model of Disability
The moral/religious model of disability is the oldest model of disability
and is found in a number of religious traditions, including the Judeo-Christian
tradition (Pardeck & Murphy 2012:xvii). The religious model of disability is a
pre-modern paradigm that views disability as an act of a god, usually a
punishment for some sin committed by the disabled individual or their family.
In that sense, disability is punitive and tragic in nature.
This model frames disability as something to be ashamed of and
insinuates that disabled people or their families are guilty of some unknown
action that caused their impairment. But that mentality only serves to
stigmatize disability, and the claim that praying heals disability is based on
purely anecdotal evidence.

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 Sometimes the presence of "evil spirits" is used to explain differences in
behavior, especially in conditions such as schizophrenia. Acts of exorcism or
sacrifice may be performed to expel or placate the negative influence, or
recourse made to persecution or even death of the individual who is
"different".
In some cases, the disability stigmatizes a whole family, lowering their
status or even leading to total social exclusion. Or it can be interpreted as an
individual
It is an extreme model, which can exist in any society where deprivation
is linked to ignorance, fear and prejudice.

Market Model of Disability

The market model of disability is a minority rights and consumerist
model of disability that recognizing people with disabilities and their
Stakeholders as representing a large group of consumers, employees and
voters. This model looks to personal identity to define disability and
empowers people to chart their own destiny in everyday life, with a particular
focus on economic empowerment.
By this model, based on US Census data, there are 1.2 billion people in
the world who consider themselves to have a disability. An additional two
billion people are considered Stakeholders in disability
(family/friends/employers), and when combined to the number of people
without disabilities, represents 53% of the population. This model states that,
due to the size of the demographic, companies and governments will serve the
desires, pushed by demand as the message becomes prevalent in the cultural
mainstream.
Human Rights Based Model of Disability
From the mid 1980's countries such as Australia enacted legislation
which embraced rights-based discourse rather than custodial discourse and
seeks to address the issues of social justice and discrimination. The
legislations embraced the shift from disability being seen as an individual
medical problem to it instead being about community membership and fair
access to social activities such as employment, education and recreation.
The emphasis in the 1980's shifted from dependence to independence as
people with disabilities sought to have a political voice. Disability activism also
helped to develop and pass legislation and entitlements became available to
many people. However, while the rights-based model of disability has helped
to develop additional entitlements, it has not changed the way in which the
idea of disability is constructed. The stigma of 'bad genes' or 'abnormality' still
goes unchallenged and the idea of community is still elusive.
What it looks like: A person with a disability is able to attend a school, go
to work, participate in community activities alongside non-disabled people,

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perhaps using disability-related accommodations or modifications that make
the environment more accessible to them.
Relational Model of Disability
In the late 1960s Nirje, a Swedish social theorist, formulated the
principles of normalization emphasizing strong support of de-
institutionalization, recognition of the diversity of the human condition, and
belief that people with disability and 'normal' (ordinary) life, including access
to the built environment, are not mutually exclusive.
This work represents part of an emerging grand idea of social inclusion
for people with disability in the community and within the
neighborhood (Nirje [1969] 1994). Following on in this continuum of Nordic
interest in people - environment interaction, a new disability model developed
around the end of 1990s - early2000s, and has subsequently been recognized
as the (Nordic) Relational Model of Disability (Goodley 2011)
Affirmation Model of Disability
The affirmation model of disability is essentially a non-tragic view of
disability and impairment which encompasses positive social identities, both
individual and collective, for disabled people grounded in the benefits of
lifestyle and life experience of being impaired and disabled. This view has
arisen in direct opposition to the dominant personal tragedy model of
disability and impairment, and builds on the liberators imperative of the social
model.
Rooting their idea in the values of Disability Pride and perspectives
emerging from the disability arts movement, Swain and French identified the
affirmation model as a critique of the personal tragedy model corresponding
to the social model as a critique of the medical model.
Spectrum Model of Disability
The spectrum model of disability refers to the range of visibility,
audibility and sensibility under which mankind functions. The model asserts
that disability does not necessarily mean reduced spectrum of operations.

1.2 Concept, Meaning and Definition - Handicap, Impairment, Disability,

activity limitation, habilitation and Rehabilitation
Education is a lifelong process involving many planned and unplanned
experiences that enable children and adults alike to develop and learn through
interaction with the society and culture in which they live. It involves
experiences at all stages of life, from infancy through to old age.
Education also involves adaptations to society and culture. With all the
combinations of life events, adaptation will mean that each person is subject to
a unique set of learning and problem-solving experiences that constitute an
understanding of the world and the events that take place in it. However, if we
limit our attendance to intentional learning and instruction of children across
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the time from preschool to tertiary education, this would involve learning
from a curriculum that has been determined by the central or state education
authority.
There are many children who, for some reason, are unable to take full
advantage of the school curriculum as it is normally offered. For these children
special arrangements must be made to ensure that they receive the
opportunities and experiences, which will help them to learn and develop to
the extent of their capabilities.
To help us to deal with the question of who these children may be, we
need first to understand a few adjectives which you will, no doubt, encounter
in your reading about children with special needs. These adjectives are

International Classification of Impairment, Disability and Handicap as

given by World Health Organization (WHO)
The World Health Organization (WHO) has defined the terms

Definitions of Impairment, Disability, Handicap

Impairment: According to the ICIDH, impairment is any loss or
abnormality of psychological, physiological or anatomical structure or
functions, generally taken to be at organ level
Impairment is damage to tissue due to disease or trauma. A person who has
poor or no vision due to damage to retina or optic nerve may be said to have a
visual impairment.
Disability: Disability has been defined as any restriction or lack of
ability (resulting from an impairment) to perform an activity in the manner or
within the range considered normal for a human being, generally taken to be
at the level of the individual.
Disability denotes the consequences of impairment in terms of
functional performance and activity by the individual. A person who has an
optic nerve or retinal damage would have limitations in performing those
tasks that requires the use of eyesight.
Handicap: The ICIDH defines Handicap as a disadvantage for an individual, resulting from an
impairment or disability, which limits or prevents fulfillment of a role that is normal (depending on age,
sex and social cultural factors) for that individual.
Condition Concerned with Represents

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Impairment Abnormalities of body structure, Disturbances at organ /
organs, appearance and system tissue level
functioning
Disability Limitations/loss of functional Disturbance at personal
performance and activities level
Handicap Disadvantages resulting from Situation specific
impairment and disabilities limitations
Fferences among the terms.
The differences have been clearly outlined in the definitions of each of
the terms by WHO in the International Classification of Impairment,
Disability and Handicaps.
Impairment represents exteriorization of a pathological state and
occurs at tissue level.
Disability refers to excesses or deficiencies of customarily expected
activity, performance and behavior, and is located at the level of the person.
Handicap reflects the consequences for the individual - cultural, social,
economic and environmental - that stem from the presence of impairment and
disability.
Activity limitation is a dimension of health/disability capturing long-
standing limitation in performing usual activities (due to health problems).
Indicators based on this concept can be used to evaluate the general health
status, disability and related inequalities and health care needs at the
population level.
Example of an operational definition used within the European
Statistical System:
One question instrument
Although they work side-by-side, rehabilitation and habilitation mean
two different things:
Habilitation refers to a process aimed at helping disabled people attain,
keep or improve skills and functioning for daily living; its services include
physical, occupational, and speech-language therapy, various treatments
related to pain management, and audiology and other services that are offered
in both hospital and outpatient locations.
Rehabilitation refers to regaining skills, abilities, or knowledge that
may have been lost or compromised as a result of acquiring a disability or due
to a change in one
As defined in the CRPD, Habilitation and Rehabilitation
Without adequate habilitation and rehabilitation services, persons with
disabilities may not be able to work, go to school, or participate in cultural,
sports, or leisure activities. At the same time, barriers to other human rights
can prevent persons with disabilities from claiming the right to habilitation
and rehabilitation. Services may exist, but if there is not accessible
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transportation, many persons with disabilities will not receive the benefit of
these services. If information about habilitation and rehabilitation services is
not available in accessible formats, persons with certain disabilities may never
know that they exist.

1.3 Definition, categories (Benchmark Disabilities) & the legal

provisions for PWDs in India
The Ministry of Social Justice and empowerment of Person with
Disability (Divyangjan) Department administers the following three Acts:-
The Rights of Persons with Disabilities Act, 2016
The National Trust for the Welfare of Persons with Autism, Cerebral
Palsy, Mental Retardation and Multiple Disabilities Act, 1999
Rehabilitation Council of India Act, 1992
The RPwD Act, 2016 was enacted on 28.12.2016 which came into force
from 19.04.2017. The salient features of the Act are:-
i. Responsibility has been cast upon the appropriate governments to take
effective measures to ensure that the persons with disabilities enjoy their
rights equally with others.
ii. Disability has been defined based on an evolving and dynamic concept.
iii. The Act covers the following specified disabilities:-
1. Physical Disability
a. Locomotor Disability
i. Leprosy Cured Person
ii. Cerebral Palsy
iii. Dwarfism
iv. Muscular Dystrophy
v. Acid Attack Victims
b. Visual Impairment
i. Blindness
ii. Low Vision
c. Hearing Impairment
i. Deaf
ii. Hard of Hearing
d. Speech and Language Disability
2. Intellectual Disability
a. Specific Learning Disabilities
b. Autism Spectrum Disorder
3. Mental Behavior (Mental Illness)
4. Disability caused due to-
a. Chronic Neurological Conditions such as-
i. Multiple Sclerosis
ii. Parkinson
b. Blood Disorder-
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 i. Hemophilia
ii. Thalassemia
iii. Sickle Cell Disease
5. Multiple Disabilities
iv. Additional benefits have been provided for persons with benchmark
disabilities and those with high support needs.
v. Every child with benchmark disability between the age group of 6
and 18 years shall have the right to free education.
vi. 5% reservation in seats in Government and Government aided
higher educational institutions for persons with benchmark disabilities.
vii. Stress has been given to ensure accessibility in public buildings
(both Government and private) in a prescribed time-frame.
viii. 4% reservation in Government jobs for certain persons or class of
persons with benchmark disability.
ix. The Act provides for grant of guardianship by District Court or any
authority designated by the State Government under which there will be joint
decision
x. Broad based Central & State Advisory Boards on Disability to be set
up as policy making bodies.
xi. The Act provides for strengthening of the Office of Chief
Commissioner of Persons with Disabilities and State Commissioners of
Disabilities which will act as regulatory bodies and Grievance Redressal
agencies and also monitor implementation of the Act. These Offices will be
assisted by an Advisory Committee comprising of experts in various
disabilities.
xii. Creation of National and State Fund to provide financial support to
the persons with disabilities.
xiii. The Act provides for penalties for offences committed against
persons with disabilities.
xiv. Designated special Courts to handle cases concerning violation of
rights of PwDs.
There are innumerable types of disabilities that can affect a human
being. Some of these conditions are more common than others. Some of the
types of disabilities are recognized by the government in order to provide
disability benefits to the needy ones. Often people wonder what the disabling
conditions that are more prevalent are. Here is the list of 21 disabilities that
have been identified under the RPWD Act 2016 of India.
1. Blindness
Blindness is defined as the state of being sightless. A blind individual is unable
to see. In a strict sense the word blindness denotes the condition of total

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blackness of vision with the inability of a person to distinguish darkness from
bright light in either eye.
2. Low-vision
Low-vision means a condition where a person has any of the following
conditions, namely:
1. Visual acuity not exceeding 6/18 or less than 20/60 upto 3/60 or upto
10/200 (Snellen) in the better eye with best possible corrections; or
2. Limitation of the field of vision subtending an angle of less than 40 degree
up to 10 degree.
3. Leprosy Cured Persons
Leprosy, also known as Hansen
4. Hearing Impairment
Hearing impairment is a partial or total inability to hear. It is a disability which
is sub-divided in two categories of deaf and hard of hearing.
5. Locomotor Disability
Strictly speaking Locomotor Disability means problem in moving from one
place to another
6. Dwarfism
Dwarfism is a growth disorder characterized by shorter than average body
height.
7. Intellectual Disability
Intellectual disability, also known as general learning disability and mental
retardation (MR), is a condition characterized by significant limitation both in
intellectual functioning (reasoning, learning, problem solving) and in adaptive
behavior which covers a range of every day, social and practical skills.
8. Mental Illness
Mental illness or mental disorder refers to a substantial disorder of thinking,
mood, perception, orientation or memory that grossly impairs judgment,
behavior, capacity to recognize reality or ability to meet the ordinary demands
of life. But it does not include retardation which is a condition of arrested or
incomplete development of mind of a person, specially characterized by sub-
normality of intelligence.
9. Autism Spectrum Disorder
Autism Spectrum Disorder (ASD) is a neurological and developmental
disorder which affects communication and behavior. Autism can be diagnosed
at any age. But still it is called a
10. Cerebral Palsy

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Cerebral Palsy (CP) is a disabling physical condition in which muscle
coordination is impaired due to damage to the brain. It occurs at or before
child birth. Cerebral Palsy is not a progressive condition; meaning it does not
get worse with time. However, muscle disuse could increase the extent of
disability over the period of time. At present there is no cure available for this
condition. Thus, Cerebral Palsy is incurable and life-long condition, at present.
11. Muscular Dystrophy
Muscular Dystrophy (MD) is a group of neuromuscular genetic disorders that
cause muscle weakness and overall loss of muscle mass. MD is a progressive
condition; meaning that it gets worse with the passage of time.
12. Chronic Neurological Conditions
Examples of Chronic Neurological Conditions:
1. Alzheimer
2. Parkinson
3. Dystonia
4. ALS (Lou Gehrig
5. Huntington
6. Neuromuscular disease
7. Multiple sclerosis
8. Epilepsy
9. Stroke
13. Specific Learning Disabilities
Specific Learning Disabilities is a group of disabling conditions that hampers a
person
14. Multiple Sclerosis
In Multiple Sclerosis (MS), the immune system of body attacks the Central
Nervous System, which includes brain and spinal cord. As a result of MS,
the myelin sheath covering on neurons gets damaged. This exposes the nerve
fiber and causes problems in the information flow through nerves. With time,
MS can lead to the permanent damage to nerves.
15. Speech and Language Disability
A permanent disability arising out of conditions such as laryngectomy or
aphasia affecting one or more components of speech and language due to
organic or neurological causes.
16. Thalassemia
Thalassemia is a genetically inherited blood disorder which is characterized
by the production of less or abnormal hemoglobin. As we know, hemoglobin is
a protein found in Red Blood Cells. Hemoglobin is responsible for carrying
oxygen around in the body. Thalassemia results in large numbers of red blood
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cells being destroyed, which leads to anemia. As a result of anemia, person
affected with Thalassemia will have pale skin, fatigue and dark coloration of
urine.
17. Hemophilia
Hemophilia is a blood disorder characterized by the lack of blood clotting
proteins. In the absence of these proteins, bleeding goes on for a longer time
than normal. Hemophilia almost always occurs in males and they get it from
their mothers. Females are rarely affected with hemophilia.
18. Sickle Cell Disease
Sickle Cell Disease is a group of blood disorders that causes red blood cells
(RBCs) to become sickle-shaped, misshapen and break down. The oxygen-
carrying capacity of such misshapen RBCs reduce significantly. It is a
genetically transferred disease. Red Blood Cells contain a protein called
hemoglobin. This is the protein that binds oxygen and carry it to all the parts
of the body.
19. Multiple Disabilities including Deaf-blindness
Multiple Disabilities is the simultaneous occurrence of two or more disabling
conditions that affect learning or other important life functions. These
disabilities could be a combination of both motor and sensory nature.
20. Acid Attack Victims
An acid attack victim means a person disfigured due to violent assaults by
throwing of acid or similar corrosive substance.
21. Parkinson
Parkinson
Government of India uses the term benchmark disability quite often in the
official communications regarding persons with disabilities. Often you come
across question like For example, in the Rights of Persons with disabilities Act
2016 (RPWD Act 2016), this term is used at many places. Department of
Personnel and Training (DoPT) also uses it often in their job vacancy ads
where certain seats are reserved for the disabled people. Then you also find
mention of this term in context of examinations like UPSC, Bank Services, NET
Exams etc.
But most people do not understand what exactly this benchmark disability is.
Well, here is the answer!
Benchmark disability refers to having at least 40% disability of any type
recognized under the RPWD Act 2016.
So, to be in the category of having benchmark disability, a person has to have
at least 40% disability as mentioned on her disability certificate or UDID Card.

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1.4 An overview of Causes, Prevention, prevalence & demographic
profile of disability: National and Global;
Prevalence of a condition or disability in determined by epidemiology.
Epidemiology is a science concerned with the study of factors that
influence the occurrence and distribution of disease, defect, disability, or death
in aggregation of individuals. Epidemiology involves making a determination
or estimate of the number of cases of some condition in a population. In
addition, it attempts to relate this estimate to other classification of
population, such as age, sex, and social class.
A good epidemiologist depends upon the definition of the condition in
question. If the condition is poorly or vaguely defined, there will be a problem
with the estimates of its occurrence.
An epidemiologist uses two methods for estimating the occurrence of a
condition in a population: the incidence rate and the prevalence rate.

Difference between Incidence and Prevalence

Incidence refers to the number of new cases in population during a
specified period of time. Prevalence refers to the total number of cases in a
population group during a specified period of time.
As per the Census 2011, the differently abled population in India is 26.8
million. In percentage terms, this stands at 2.21 %. There has been a marginal
increase in the differently-abled population in India, with the figure rising
from 21.9 million in 2001 to 26.8 million over the period of 10 years.
As per the Census 2011, there are 14.9 million men with disabilities as
compared to 11.9 million women in the country. The total number of
differently-abled people is over 18.0 million in the rural areas and just 8.1
million enumerated in the urban settings. The percentage of men with
disabilities is 2.41 per cent as against 2.01 in women. Social group’s wise
analysis shows 2.45 per cent of the total disabled population belong to the
Scheduled Castes (SC), 2.05 per cent to the Scheduled Tribes (ST) and 2.18 per
cent to other than SC/ST.
About 15% of the world's population lives with some form of disability,
of whom 2-4% experience significant difficulties in functioning. The global
disability prevalence is higher than previous WHO estimates, which date from
the 1970s and suggested a figure of around 10%. This global estimate for
disability is on the rise due to population ageing and the rapid spread of
chronic diseases, as well as improvements in the methodologies used to
measure disability.

17
 A few outstanding figures of disability around the world (according to
the WHO
253 million people are affected by some form of blindness and visual
impairment. This represents 3.2% of the world
466 million people have a disabling deafness and hearing loss. This
represents 6% of the world
About 200 million people have an intellectual disability (IQ below 75).
This represents 2.6% of the world
75 million people need a wheelchair on a daily basis. This
represents 1% of the world
These statistics may remain an evolutionary average, but one thing is
certain: the number of people affected by any form of disability represents a
significant part of the world population, from children to adults alike. It is also
important to underline the fact that some people may have multiple
disabilities. This explains why the total number of people with disabilities in
the world ins

CAUSES
Risk factors for the disabilities:
Communicable diseases (Infectious diseases) such as lymphatic
filariasis, tuberculosis, HIV/AIDS, and other sexually transmitted diseases;
neurological consequences of some diseases such as encephalitis, meningitis,
and childhood cluster diseases (such as measles, mumps, and poliomyelitis)
contribute to disability.
Non communicable diseases (NCDs)
Chronic diseases such as diabetes, cardiovascular disease, arthritis and
cancer cause the majority of long-term disabilities. The increase in NCDs
observed in all parts of the world, will have a profound effect on disability.
Lifestyle choices and personal behavior such as obesity, physical
inactivity, tobacco use, alcohol consumption, illicit drugs that lead to non-
communicable diseases are also becoming major contributing factors;
Air pollution, occupational disease, poor water supply, sanitation, and
personal and domestic hygiene, malnutrition also contribute for disability.
Injuries due to road traffic accidents, occupational injury, violence, conflicts,
falls and landmines have long been recognized as contributors to disability.
Mental health problems
Those with lower education levels, lower incomes, and those who are
unemployed were also more likely to suffer a disability.
There is higher risk of disability at older ages.

PREVENTION OF DISABILITIES
 Primary Prevention
 Secondary Prevention
18
 Tertiary Prevention
It is extremely important that the women undertake adequate and
effective preventive measures during their pregnancy and immediate
postnatal period and also for their children especially during the early
childhood period, in order to significantly reduce the incidence of impairment
and disabilities in them. Therefore, in this chapter examples of easily
understood primary preventive measures, for mother and child are
summarized.
General preventive measure
1. Marriage between very close blood relations like uncle, niece, and first
cousin should be avoided for prevention of hereditary disorders.
2. Avoid pregnancies before the age of 18 years and after the age of 35 years.
3. Consult a doctor before planning the pregnancy;
o If there is incidence of birth defects in your family.
o If you have had difficulty in conceiving or have had a series of
miscarriages, still births, twins, delivery by operation (Caesarean), obstructed
labour/prolonged labour (more than 12 hours) and/or severe bleeding in
previous pregnancy.
o If you have RH - negative blood type.
o If you have diabetes.
Care during pregnancy
1. Avoid hard physical work such as carrying heavy loads, especially in
fields, and other accident - prone activities such as walking on slippery ground
or climbing stools and chairs.
2. Avoid unnecessary drugs and medications. Even the normally considered
safe drugs which are sold commonly can potentially cause serious defects in
an unborn child.
3. Avoid smoking, chewing tobacco, consuming alcohol and narcotics.
4. Avoid X - rays, and exposure to any kind of radiation.
5. Avoid exposure to illnesses like measles, mumps etc, especially during the
first 3 months of pregnancy.
6. Avoid sexual contact with a person having venereal disease.
7. Take precautions against lead poisoning.
8. Avoid too much use of
9. Eat a well-balanced and nourishing diet supplemented with green leafy
vegetables, proteins and vitamins.
10. All women of the child bearing age need 0.4mg of folic acid daily. It is also
available in folic acid plus iron tablets which should be taken for at least 3
months during the third trimester when the risk of developing iron deficiency
anemia is greatest.
11. Ensure weight gain of at last 10 kgs. Have regular medical checkups.
12. All pregnant women should be given tetanus injection.
13. Woman at
19
14. Must consult a doctor, in case of edema (swelling) of feet, persistent
headache, fever, difficulty or pain in passing urine, bleeding from the vagina,
and yellowness of eyes (jaundice)

Care at the time of birth

1. Delivery must be conducted by trained personnel, preferably in a hospital
where all facilities are available.
2. If a baby does not cry immediately after birth, resuscitation measures
should be undertaken at once.
3. Babies born prematurely and with a low birth weight (<2.5 Kg) may need
Neonatal Intensive Care.
4. If the baby
5. To protect a child from infections, breast - feeding must be started
immediately after birth. First milk (colostrum) must be fed to the baby and
should not be thrown away, as it has antibodies which are protective.

Early childhood care

1. Do not allow a child
2. If a child gets a fit take him to doctor immediately.
3. Every child should be immunized against infectious diseases as per the
recommended schedule of immunization.
4. Do not allow a child to have too much contact with paint, newsprint ink,
lead etc. as they are toxic.
5. Take precautions against head injury, and other accidents.
6. Ensure that the child gets a well-balanced diet and clean drinking water.
7. Introduce additional foods of good quality and in sufficient quantity when
the child is 4 -6 months old.
8. Vitamin A deficiency and its consequences including night blindness can
be easily prevented through the use of Vitamin A supplementation.
9. Protect a child from Meningitis and Encephalitis by providing a hygienic
environment which is free of overcrowding.
10. Common salt must be iodized as a precaution against goiter and
cretinism.
11. Do not allow a child to use hairpins, matchsticks and pencils, to remove
wax from the ears.
12. Use ear protectors to reduce the exposure to high levels of noise, if
children are living or working in a noisy environment.
13. Do not slap a child over the face as this may lead to injury of the eardrum
and consequent hearing loss

20
1.5 Concept, meaning and importance of Cross Disability Approach
and interventions;
CROSS DISABILITY APPROACH:- This historical fact changed with the
emergence of DPI(Disabled people international) the slogan of DPI is
DEFINITION:- it is an approach that does not distinguish between types of
disability.
In other words
In this approach focusing on particular subgroup should b avoided whenever
possible because
Includes different disabled persons and with different abilities.
NEEDS OF CROSS DISABILITY:-
For fulfillment of right to equality there is very necessary to include all the
persons in a same frame work unless they have different abilities.
Better access to decision-making.
Without involvement of all disabled/differently able in a same context, it is not
easy to access to making decision on their rights and needs.
Disabled people should be participated their own policies decision and
program for themselves.
We cannot access the needs of disabled people because the disabled people
know their needs very well. So, participation of disabled people is very
necessary.
Main need is equal opportunities.
Equal Membership to the society and respect of the individual and equal right
is necessary.
For respect of the equal right, there should be equal membership of the entire
person (normal/disabled) to the society is needed.
Need to be protected, need to be promoted and spread out.

BENEFITS OF CROSS DISABILITY APPROACH: - The cross-disability

movement has rainbow approach to include all those who are given a
disability label in fact some have named it the movement of the dis-labled.
It leads to-
o Independence: as we have discussed cross disability approach provide
exposure to disabled to mix in society, the disabled learn to live independent,
work independent for achieving equality level.
o Full citizenship: in past disabled person did not consider as a full citizen
because they were not an active part of society due to disability, but cross
disability approach provided opportunities in making decision and
participation, they considered as full citizen.
o Total inclusion:
o Promote leader ship:
o Full enforcement and implementation of disability related laws.

21
o Program-to enhances the life and it reduces the poverty and
unemployment.
o It ensures the right to live.
o Uniformity in the terminology of the disability.
o To educate the public and government policy makers regarding issues and
affecting people with disability.

Unit 2: Definition, Causes & Prevention, Types,

Educational Implication, and Management of

2.1 Locomotor Disability - Poliomyelitis, Cerebral Palsy,

Muscular Dystrophy;
2.2 Visual Impairment-Blindness and Low Vision;
2.3 Hearing Impairment-Deafness and Hard of Hearing;
2.4 Speech and language Disorder;
2.5 Deaf-blindness and multiple disabilities;

22
2.1 Locomotor Disability-Poliomyelitis, Cerebral Palsy/Muscular
Dystrophy;

Strictly speaking Locomotor Disability means problem in moving from

one place to another
The term Locomotor is derived from the Latin
words loco motivus disability hampers movement from one place to another.
A person's inability to execute distinctive activities associated with moving,
both personally and objects, from place to place, and such inability resulting
from afflictions of musculo-skelatol and, or nervous system, has been defined
as the Locomotor Disability Locomotor disability can be classified as:
congenital and acquired. The common causes of these two forms of affliction
can be classified as: congenital and developmental. Common examples being :
cerebral palsy, CTEV, meningocele, meningo myelocele, phocomelias,
congenital dislocation of hip. Causes of the acquired disability can be put
within the following jackets : Infective and Traumatic. The infective ones are:
tuberculosis of spine or other joints, chronic osteomyelitis, septic arthritis,
acute poliomyelitis, G.B. syndrome, leprosy, encephalitis, AIDS etc. Traumatic
ones are: traffic accidents (air, water, road), domestic accidents, industrial
accidents, agricultural accidents, fall from height, bullet injuries, explosions,
violence, sports injuries, natural catastrophies like earthquakes, floods etc.
Then there can be other causes as well, such as vascular. Common examples
are: cerebro vascular disease, peripheral vascular disease, perthe's disease.
Neoplastic conditions are yet another cause of locomotor disability. For
example, brain tumors like astrocytoma, meningioma, spinal tumors like
meningioma, astrocytoma, and osteo sarcoma etc.

CEREBRAL PALSY
Cerebral palsy (commonly referred to as CP) affects normal movement
in different parts of the body and has many degrees of severity.
CP causes problems with posture, gait, muscle tone and coordination of
movement.
The word
Cerebral Palsy is a group of conditions that are characterized by chronic
disorders of movement or postures; it is cortical in origin, manifests itself
early in life and is not the outcome of a progressive disease.

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CHARACTERISTICS OF CP
Spastic
Difficulties with fine motor skills due to jerky reflexes
Stiff muscles (hypertonia)
Exaggerated reflexes
Athetoid/dyskinetic
Tremors and shakiness
Involuntary reflexes
Variations in muscle tone (hypertonia and hypotonic)
Slow, writhing movement
Ataxic
Lack of coordination
Difficulty with balance
Trouble with fine motor skills
These developmental movement disorders can be limited to: one side of
the body, the legs, the arms, all four limbs or just one limb.
POLIO
DEFINITION
Poliomyelitis, also called polio or infantile paralysis, is a highly
infectious viral disease that may attack the central nervous system and is
characterized by symptoms that range from a mild nonparalytic infection to
total paralysis in a matter of hours.
DESCRIPTION
The reason it is called poliomyelitis is because the prefix polio means
'grey' in ancient Greek, myelo refers to the spinal cord, and its refers to the
inflammation of something. Therefore, when we combine all of these terms
together we get the inflammation of the spinal cords grey matter, or
poliomyelitis.
Poliomyelitis or infantile paralysis is a viral infection that affects the
nerves of the spinal cord, located inside the spinal bones (vertebrae) at the
back of the body. This infection can cause permanent paralysis of muscles.
Poliomyelitis mostly affects children up to 15 years of age, but can affect adults
too. After the acute phase, the disease is not communicable to others. Since
poliomyelitis does not affect the brain, the intellectual ability of children with
poliomyelitis remains intact.
SPINAL CORD INJURIES
DEFINITION
A spinal cord injury
Medical providers divide the spinal cord into four distinct regions.
Knowing the region in which the injury is located is often the key to
understanding diagnosis and treatment. The four spinal cord regions are:

24
The cervical spinal cord: This is the topmost portion of the spinal cord,
where the brain connects to the spinal cord, and the neck connects to the back.
This region consists of eight vertebrae, commonly referred to as C1-C8. All
spinal cord numbers are descending, so C1 is the highest vertebra, while C8 is
the lowest in this region.
The thoracic spinal cord: This section forms the middle of the spinal cord,
containing twelve vertebrae numbered T1-T12.
The lumbar spinal cord: This is a lower region of the spinal cord, where your
spinal cord begins to bend. If you put your hand in your lower back, where
your back bends inward, you're feeling your lumbar region. There are five
lumbar vertebrae, numbered L1-L5.
The sacral spine: This is the lower, triangle-shaped region of the spine, also
with five vertebrae. While the lumbar cord bends inward, the vertebrae of the
sacral region bend slightly outward. There is no actual spinal cord in this
section, it is made up of nerve roots which exit the spine at their respective
vertebral levels.
The coccygeal region, sometimes known as the coccyx or tail bone, consists
of a single vertebra at the very base of the spinal cord.
Types of spinal cord injuries
All spinal cord injuries are divided into two broad
categories: incomplete and complete.
Incomplete spinal cord injuries: With incomplete injuries, the cord is only
partially severed, allowing the injured person to retain some function. In these
cases, the degree of function depends on the extent of the injuries.
Complete spinal cord injuries: By contrast, complete injuries occur when the
spinal cord is fully severed, eliminating function. Though, with treatment and
physical therapy, it may be possible to regain some function.
Incomplete spinal cord injuries are increasingly common, thanks in part to
better treatment and increased knowledge about how to respond account for
more than 60% of spinal cord injuries, which means we're making real
progress toward better treatment and better outcomes.
Some of the most common types of incomplete or partial spinal cord injuries
include:
Anterior cord syndrome: This type of injury, to the front of the spinal cord,
damages the motor and sensory pathways in the spinal cord. You may retain
some sensation, but struggle with movement.
Central cord syndrome: This injury is an injury to the center of the cord, and
damages nerves that carry signals from the brain to the spinal cord. Loss of
fine motor skills, paralysis of the arms, and partial impairment
Brown-Squared syndrome: This variety of injury is the product of damage to
one side of the spinal cord. The injury may be more pronounced on one side of
the body; for instance, movement may be impossible on the right side, but may

25
be fully retained on the left. The degree to which Brown-Squared patients are
injured greatly varies from patient to patient.
Knowing the location of your injury and whether or not the injury is complete
can help you begin researching your prognosis and asking your doctor
intelligent questions. Doctors assign different labels to spinal cord injuries
depending upon the nature of those injuries.
SPINA BIFIDA
Spina bifida literally means
A fault in the development of the spinal cord and surrounding bones
(vertebrae) leaves a gap or split in the spine. The spinal cord has not formed
properly, and may also be damaged. To help understand what it is, it is useful
to explain the composition of the nervous system.
TYPES OF SPINA BIFIDA
The three main types of spina bifida always present at birth are:
Spina Bifida Cystica (cyst-like)
The visible signs are a sac or cyst, rather like a large blister on the back,
covered by a thin layer of skin. There are two forms:
1) Myelomeningocele (meningomyelocele)
Myelomeningocele is the most serious and more common of the two
forms of cystic spina bifida. Here the cyst not only contains tissue and cerebro-
spinal fluid but also nerves and part of the spinal cord. The spinal cord is
damaged or not properly developed. As a result, there is always some
paralysis and loss of sensation below the damaged region.
The amount of disability depends very much on where the spina bifida
is, and the amount of affected nerve tissue involved. Bladder and bowel
problems occur in most people with myelomeningocele, as the nerves come
from the bottom of the spinal cord, so are always below the lesion. It is also
necessary to have intact nerve pathways to the brain for complete control and
sensation.
The outer part of the vertebrae is split. The spinal cord and meninges are
damaged and pushed out through the opening. Hydrocephalus is usually
associated with this form.
2) Meningocele
In this form, the sac contains meninges (tissues which cover the brain
and spinal cord) and cerebro-spinal fluid, which bathes the central nervous
system. Development of the spinal cord may be affected, but impairment is
usually less severe than myelomeningocele. Meningocele is the least common
form of spina bifida.
26
 The outer part of the vertebrae is split. The spinal cord is normal. The
meninges are damaged and pushed out through the opening.
3) Spina Bifida Occulta (hidden form)
This is a mild form of spina bifida which is very common. Estimates vary
but between 5% and 10% of people may have spina bifida occulta. It must be
emphasised that, for the vast majority of those affected, having spina bifida
occulta is of no consequence whatsoever. Often people only become aware
that they have spina bifida occulta after having a back x-ray for an unrelated
problem.
The outer part of the vertebrae is not completely joined. The spinal cord
and its covering (the meninges) are undamaged Encephalocele.
Encephalocele
This is a sac which is formed when the bones of the skull fail to develop. It may
contain only cerebro-spinal fluid or part of the brain may also be present in
the sac, resulting in brain damage.
Anencephaly
This is where the brain does not develop properly or is absent, and the baby is
either still born or dies shortly after birth.
Hydrocephalus Most babies born with myelomeningocele also have
hydrocephalus (from the Greek hydro, meaning water, and cephalie meaning
brain). This is an accumulation of cerebro-spinal fluid which arises from an
imbalance in the production and drainage of that fluid.
MUSCULAR DYSTROPHY
Muscular Dystrophy (MD) is a group of inherited diseases in which the
voluntary muscles progressively weaken overtime.
Heart and other organs can also be affected.
9 major types:
Duchenne, Myotonic, Becker, Limb-girdle, Facioscapulohumeral, Congenital,
Oculopharyngeal, Distal, and Emery-Dreifuss
Can occur at any age
Most common in young males.
Type is based on what age the individual is when muscular dystrophy appears
Also depends on how severe the disease is, which muscles it affects, rate of
progression, and the way it appears.
Some types of muscular dystrophy only affect males.
Some individuals with this disease experience mild symptoms, while others
suffer from severe muscle weakness, dying at an early age.

27
MULTIPLE SCLEROSIS
Multiple sclerosis (MS) is a potentially disabling disease of the brain and
spinal cord (central nervous system).
In MS, the immune system attacks the protective sheath (myelin) that
covers nerve fibers and causes communication problems between your brain
and the rest of your body. Eventually, the disease can cause the nerves
themselves to deteriorate or become permanently damaged.
Signs and symptoms of MS vary widely and depend on the amount of
nerve damage and which nerves are affected. Some people with severe MS
may lose the ability to walk independently or at all, while others may
experience long periods of remission without any new symptoms.
There's no cure for multiple sclerosis. However, treatments can help
speed recovery from attacks, modify the course of the disease and manage
symptoms.
The cause of multiple sclerosis is unknown. It's considered an
autoimmune disease in which the body's immune system attacks its own
tissues. In the case of MS, this immune system malfunction destroys myelin
(the fatty substance that coats and protects nerve fibers in the brain and spinal
cord).
Myelin can be compared to the insulation coating on electrical wires.
When the protective myelin is damaged and nerve fiber is exposed, the
messages that travel along that nerve may be slowed or blocked. The nerve
may also become damaged itself. It isn't clear why MS develops in some people
and not others. A combination of genetics and environmental factors appears
to be responsible.

2.2 Visual Impairment-Blindness and Low Vision;

How We See: The eye functions like a camera. Vision is a complex function.
The act of seeing requires light to see by and the brain to interpret what is
seen. The light rays reflected from an object in a person
The rays pass through the cornea, aqueous humour, and through pupil
which dilates or contracts to control light in accordance to the brightness of
the object. The rays then pass through crystal lineless and the rays of light are
focussed on the retina. The process of focusing is called accommodation. The
cornea and the lens combine to bend the light rays as they pass through. The
rays pass through the vitreous body and penetrate on retina, where they set

28
up a photo-chemical response in the outermost layers, stimulating the rods &
cones.
The impulse is picked by retinal nerve fibres and passes along the optic
nerve to the brain where an upside down image is formed. Based on
experience, the inverted image is psychologically transposed.
Definition of visual impairment as adopted in the persons with
Disabilities (Equal opportunities, Protection of Right & Full Participation) Act
1995 as well as National Programme for control of Blindness (NPCB).
Blindness: refers to a condition where a person suffers from any of the
following conditions, namely:
1. Total absence of sight; or
2. Visual acuity not exceeding 6/60 or 20/200 (snellen) in the better eye
even with the correction lenses, or
3. Limitation of the field of vision subtending an angle of 20 degree or worse
For deciding blindness visual acuity and / or field of vision are considered.
Low vision: As per PWD Act, 1995 also recognizes low vision as a category of
disability and defines it as follows:-
For teachers this definition is of no use as it does not give the range of visual
acuity as well as field of vision. Practitioners therefore follow the WHO
working definition of low vision-
The World Health Organization uses the following classifications of
visual impairment. When the vision in the better eye with BEST
POSSIBLE glasses correction is:
20/30 to 20/60 is considered mild vision loss, or near-normal vision
20/70 to 20/160 is considered moderate visual impairment, or moderate low
vision
20/200 to 20/400 is considered severe visual impairment, or severe low
vision. In the United States, a person with 20/200 in the BETTER eye is
considered legally blind.
20/500 to 20/1,000 is considered profound visual impairment, or profound
low vision
Less than 20/1,000 is considered near-total visual impairment, or near total
blindness
No light perception is considered total visual impairment, or total blindness.
The International Classification of Diseases 11 (2018) classifies vision
impairment into two groups, distance and near presenting vision
impairment.
Distance vision impairment:
29
Mild
Moderate
Severe
Blindness
Near vision impairment:
Presenting near visual acuity worse than N6 or M.08 with existing correction.

2.3 Hearing Impairment-Deafness and Hard of Hearing;

THE PHYSIOLOGY OF HEARING

The process of hearing begins with the occurrence of a sound. Sound is
initiated when an event moves and causes a motion or vibration in air. When
this air movement stimulates the ear, a sound is heard and the human ear can
hear from 20 Hz to 20,000 Hz.
In the human ear, a sound wave is transmitted through four separate
mediums along the auditory system before a sound is perceived: in the outer
ear
Sound Transmission through the Outer Ear - Air transmitted sound waves
are directed toward the delicate hearing mechanisms with the help of the
outer ear, first by the pinna, which gently funnels sound waves into the ear
canal, then by the ear canal.
Sound Transmission through the Middle Ear- When air movement strikes
the tympanic membrane, the tympanic membrane or eardrum moves. At this
point, the energy generated through a sound wave is transferred from a
medium of air to that which is solid in the middle ear. The ossicular chain of
the middle ear connects to the eardrum via the malleus, so that any motion of
the eardrum sets the three little bones of the ossicular chain into motion.
Sound Transmission through the Inner Ear- The ossicular chain transfers
energy from a solid medium to the fluid medium of the inner ear via the
stapes. The stapes is attached to the oval window. Movement of the oval
window creates motion in the cochlear fluid and along the Basilar membrane.
Motion along the basilar membrane excites frequency specific areas of the
Organ of Corti, which in turn stimulates a series of nerve endings.
Sound Transmission to the Brain- With the initiation of the nerve impulses,
another change in medium occurs: from fluid to neural. Nerve impulses are
relayed through the VIII C.N., through various nuclei along the auditory

30
pathway to areas to the brain. It is the brain that interprets the neural
impulses and creates a thought, picture, or other recognized symbol.

MEANING OF HEARING IMPAIRMENT AND DEAFNESS

A person who is not able to hear as well as someone with normal hearing

Person with disability act- (PWD, 1995)

Definition of disability in pwd act includes hearing impairment
Hearing impairment means loss of 60 decibel or more in the better ear in
speech conversation frequencies.
Chapter 5 education have point for restructuring the curriculum for benefit of
students with hearing impairment, to facilitate them to take only one language
as part of their curriculum.
Idea- individual with disability education act, 2004
Defines hearing impairment as impairment in hearing, whether permanent or
fluctuating that adversely affects a chill educational performance but is not
included under the definition of deafness.
World health organization (WHO) -
Defines
TYPES OF HEARING LOSS
According to place of impairment
Conductive hearing loss
Sensory-neural hearing loss
Mixed hearing loss - combination of both; sometimes called a flat loss
According to degree of hearing loss
Loss Slight 27-40 dB
Mild 41-55 dB
Moderate 56-70 dB
Severe 71-90 dB
Profound 91 dB or more
According to the age at onset of deafness
Congenitally deaf
Adventitiously deaf
According to language development-

National institute for the hearing handicapped-

Various types of impairments

31
 Category Type of DB Word recognition % of
impairment level score impairment
I. Mild hearing 26- 40 80-100 % in better Less than 40%
impairment dBHL ear
II. Moderate hearing 41-60 50-80 % in better 40-50%
a impairment dBHL ear
b Severe hearing 61-70 40-50 % in better 71-100%
impairment dBHL ear
III. a)profound 71-90 Less than 40% in
hearing dBHL better ear 100%
impairment
b) total loss 91 and Very poor
above discrimination

2.4 Speech and language Disorder;

Speech and language disorders refer to problems in communication and
related areas such as oral motor function. These delays and disorders range
from simple sound substitutions to the inability to understand or use language
or use the oral-motor mechanism for functional speech and feeding. Some
causes of speech and language disorders include hearing loss, neurological
disorders, brain injury, mental retardation, drug abuse, physical impairments
such as cleft lip or palate, and vocal abuse or misuse. Frequently, however, the
cause is unknown.
Characteristics
A child's communication is considered delayed when the child is
noticeably behind his or her peers in the acquisition of speech and/or
language skills. Sometimes a child will have greater receptive (understanding)
than expressive (speaking) language skills, but this is not always the case.
Speech disorders refer to difficulties producing speech sounds or
problems with voice quality. They might be characterized by an interruption
in the flow or rhythm of speech, such as stuttering, which is called dysfluency.
Speech disorders may be problems with the way sounds are formed, called
articulation or phonological disorders, or they may be difficulties with the
pitch, volume or quality of the voice. There may be a combination of several
problems. People with speech disorders have trouble using some speech
sounds, which can also be a symptom of a delay. They may say "see" when they
mean "ski" or they may have trouble using other sounds like "l" or "r".
Listeners may have trouble understanding what someone with a speech

32
disorder is trying to say. People with voice disorders may have trouble with
the way their voices sound.
For children with speech disorders, it can be tough forming the sounds that
make up speech or putting sentences together. Signs of a speech disorder
include:
Trouble with p, b, m, h, and w sounds at 1 to 2 years of age
Problems with k, g, f, t, d, and n sounds between the ages of 2 and 3
When people who know the child well find it hard to understand them
The causes of most speech disorders are unknown.
There are three major types:
Articulation: It
Fluency: Your child may have problems with how their words and
sentences flow. Stuttering is a fluency disorder. That
Voice: If your child speaks too loudly, too softly, or is often hoarse, they
may have a voice disorder. This can happen if your child speaks loudly and with
too much force. Another cause is small growths on the vocal cords called nodules
or polyps. They

A language disorder is an impairment in the ability to understand

and/or use words in context, both verbally and nonverbally. Some
characteristics of language disorders include improper use of words and their
meanings, inability to express ideas, inappropriate grammatical patterns,
reduced vocabulary and inability to follow directions. One or a combination of
these characteristics may occur in children who are affected by language
learning disabilities or developmental language delay. Children may hear or
see a word but not be able to understand its meaning. They may have trouble
getting others to understand what they are trying to communicate.
Your child may have this disorder if they:
Don
Only speak a few words by 17 months
Can
Have problems when they play and talk with other kids from the ages of 2 to 3
There are two major types of language disorders. It
Receptive: This is when your child finds it hard to understand speech. They
may find it hard to:
Follow directions
Answer questions
Point to objects when asked
Expressive: If your child has trouble finding the right words to express
themselves, they may have this type of language disorder. Kids with an
expressive disorder may find it tough to:
33
Ask questions
String words into sentences
Start and continue a conversation
It head, illness, or ear infections. These are sometimes called acquired
language disorders.
There are many types of disorders within various categories, and each person
1. Childhood Apraxia of Speech
With childhood apraxia of speech, a child has trouble making accurate
movements when speaking. It occurs because the brain has difficulty
coordinating the movements.
2. Orofacial Myofunctional Disorders
Children, teenagers, and adults may suffer from these abnormal movement
patterns of the face and mouth. They occur due to an abnormal growth and
development of facial muscles and bones, the cause of which is unclear.
Individuals with orofacial myofunctional disorders may have trouble eating,
talking, breathing through the nose, swallowing, or drinking.
3. Speech Sound Disorders/Articulation Disorders
Especially common in young children, articulation disorders are based on the
inability to form certain sounds. Instead, certain words and sounds may be
distorted, such as making the
4. Stuttering and Other Fluency Disorders
Stuttering can come in a number of forms, including
Individuals who stutter may feel tenseness in their bodies and may even avoid
situations or words that may trigger their stuttering. Secondary physical
behaviors may include excessive eye blinking or jaw tightening.
5. Receptive Disorders
Receptive disorders are characterized by trouble understanding and
processing what others say, causing trouble following directions or a limited
vocabulary. Disorders such as autism can lead to receptive disorders.
6. Autism-Related Speech Disorders
Communication concerns are one aspect of autism spectrum disorder, which
involves challenges with social skills and repetitive behaviors. An individual
with autism may have difficulty understanding and using words, learning to
read or write, or having conversations.
He or she may also be hard to understand, use a robotic voice, and speak very
little or not at all.
7. Resonance Disorders
Resonance disorders occur due to a blockage or obstruction of airflow in the
nose, mouth, or throat, which may affect the vibrations that determine voice
quality. Cleft palate and swollen tonsils are two causes of resonance disorders.
8. Selective Mutism

34
Most often seen in children and teens, selective mutism is an anxiety
disorder characterized by a child communicate effectively in select social
settings. Teenagers who experience selective mutism may have more
pronounced social phobias.
9. Brain Injury-Related Speech Disorders/Dysarthria
Dysarthria occurs when the muscles in the lips, mouth, tongue, or jaws are too
weak to properly form words, usually due to brain damage. These include
traumatic brain injury and right hemisphere brain injury.
10. Attention Deficit/Hyperactivity Disorder Symptoms
ADHD makes it hard for individuals to pay attention and control their own
behavior, leading to various problems with communication. Although not
everyone with ADD has the hyperactivity aspect of the disorder, those who do
may have trouble sitting still as well. A speech and language pathologist can
help improve the communication aspect of ADHD.

2.5 Deaf-blindness and multiple disabilities;

Deaf blindness is the combination of significant auditory and visual

impairments in a person. These dual sensory losses vary in severity from
person to person and do not necessarily lead to total deafness and/or total
blindness. It is entirely possible that the person will retain some useful vision
and hearing. However, in combination, these impairments of the distant
senses causes serious developmental delays in the child, affecting cognitive
development, social development, acquisition of communication and language
skills, orientation and mobility. A combination of visual and hearing
impairment causes such severe developmental, communication and learning
needs that the person cannot be educated in special education programs
meant for the hearing impaired, for the visually impaired or for severe
disabilities. Supplementary assistance would be required to address their
unique educational needs consequential to the concurrent impairments of
vision and hearing. Deaf blindness leads to a severe disabling condition caused
by combined losses in hearing and vision. A deaf blind child cannot be thought
of as blind and also deaf, nor as deaf and also blind. Various terms have been
used in the past to refer to this heterogeneous group of population. Earlier, the
term communication, mobility, and in accessing information.
Deaf blind people fall into four groups:
1. Those who are born deaf and blind, which can happen if the mother, inter
alia, contacted Rubella (German Measles) during pregnancy.
2. Those who were born deaf and then lost their sight. This is often caused by
the Usher Syndrome
35
3. Those who were born blind and then lost their hearing.
4. The adventitious deaf blind, as a result of old age, or through an illness or
accident later in life.
Definition of Deaf blindness
Sight and hearing. As with the word
Deaf-blind people have an experience quite distinct from people who are only
deaf or blind and not both.
Federal Definition of Deaf blindness
Educational needs that they cannot be accommodated in special education in
programs solely for children with deafness or children with blindness.
and visual impairments, the combination of which creates such severe
communication and other developmental and learning needs that they cannot
be appropriately educated without special education and related services,
beyond those that would be provided solely for children with hearing
impairments, visual impairments, or severe disabilities to address their
educational needs due to these concurrent disabilities.

Children who have a combination of severe disabilities are called

Realizing the need for promotion of services for children with multiple
disabilities, an autonomous organization of the Ministry of Social Justice and
Empowerment, Government of India, was set up under the
Definition of Multiple Disabilities
Multiple disabilities - (IDEA)
According to the act Educators.
The combination of disabilities and degree of severity is different in each child.
The time at which the disability occurs in the child, what is known as the
Multiple Disability refers to: a combination of two or more disabling
conditions that have a combined effect on the child communication, mobility
and performance of day-to-day tasks.
We can say that just as every child is different, similarly every child with MD is
different. However there are some things that this group of children have in
common.
It affects the all-round development of the child
Communication with the world around is most severely affected
Opportunities to interact with the environment becomes very limited
Ability to move around in the environment is restricted
Need regular help in simple day-to-day activities such as wearing a shirt,
opening a door,
Finding a chair to sit down and so on.
A highly structured educational / rehabilitation programme helps in their
training.

Some examples of multiple disabilities are:

36
Deaf blind (Visual Impairment + Hearing Impairment)
Visual Impairment + Hearing Impairment + Mental Retardation
Visual Impairment + Mental Retardation
Cerebral Palsy + Mental Retardation/ Hearing/ Speech/ Visual problems
Given the numerous disability category combinations possible, the
designation multiple disabilities encompasses a broad range of traits.
However, the National Dissemination Center for Children with
Disabilities (usually referred to as NICHCY) lists several common
characteristics, including hampered speech and communication skills,
challenges with mobility and a need for assistance in performing everyday
activities.

Unit 3: Definition, Causes & Preventive measures,

Types, Educational Implications, and Management of-

3.1 Intellectual Disability;

3.2 Specific Learning Disabilities;
3.3 Autism Spectrum Disorder;
3.4 Mental Illness, Multiple Disabilities;
3.5 Chronic Neurological conditions and Blood Disorders;

37
3.1 Intellectual Disability;
There are many definitions of mental retardation, the most
comprehensive among them is the one given by the American Association on
Mental Retardation (AAMR) 1983 restated till 2004.
The Mental Deficiency Act of 1921 in England considered
According to American Association on Mental Dediciency (AAMD),
1956....
This definition refers to sub-average intelligence, which is explained as
one SD below the mean (approximately 85 and below 100-15=85). This
developmental period was described as birth to 16years. Using this definition
for legal purposes, it was observed that a number of persons who were close
to normal (IQ 70 to 85) were receiving support. By incidence too they are
more in number and as the severity increases the number of persons affected
reduces. As it was not serving the purposes and the right population, the
definition was revised in 1973.
AAMR, 1992....
Communication, self-care, home living, social skills, community use, self-
direction, health and safety, functional academics, leisure and work. Mental
retardation manifest before age 18.
q Limited Functioning
The first part of this definition establishes mental Retardation as a
category of concern for people whose current levels of functioning are limited.
Mental Retardation is difficulty in learning and performing certain daily life
skills as a result of substantial limitations in conceptual, practical and social
intelligence.
q Intellectual Functioning
The second part of the definition
q Adaptive Skills
The third part that the individual must also demonstrate lilted adaptive
skills in key areas- is an important part of the definition. First, adaptive skill
limitations must occur at the same time as intellectual limitations; intellectual
functioning alone is insufficient basis for a diagnosis of mental retardation.
Second, more than one area of adaptive skills must be limited to reduce the
chances of making a mistake in diagnosing Mental Retardation.
AAMR, 2002...
TYPES OF INTELLECTUAL DISABILITY
q CLASSIFICATION BY IQ (WECHSLER SCALES)
38
130+ Very Superior (Gifted)
120-129 Superior
110-119 High Average
90-119 Average
80-89 Low Average
70-79 Borderline
69 and below Mental impairment
q AAMD/AAMR Classification Systems
Heber (1961)
Borderline 68-84
Mild 52-67
Moderate 36-51
Severe 20-35
Profound <20
q Profiles of Intellectual Disability

Mild ID Profile
Minor delays in the preschool period
Evaluation often only after school entry
2-3 word sentences used in early primary grades
Expressive language improvement with time
Reading/math skills st to 6th grade levels
Social interests typically age appropriate
Mental age range of 8-11 years of age
Persistent low academic skill attainment can limit vocational possibilities

Moderate ID Profile
More evident and consistent delays in milestones
At school entry may communicate with single words and gestures
Functional language is the goal
School entry self-care skills
By age 14: basic self-care skills, simple conversations, and cooperative social
interactions
Mental age of 6-8 years of age
Vocational opportunities limited to unskilled work with direct supervision and
assistance

39
Severe ID Profile
Identification in infancy to two years
Often co-occurring with biological anomalies
Increased risk for motor disorders and epilepsy
By age 12: may use 2-3 word phrases
Mental age typically 4-6 years of age
As adults assistance typically required for even self-care activities
Close supervision needed for all vocational tasks

Profound ID Profile
Identification in infancy
Marked delays and biological anomalies
Preschool age range may function as a 1-year-old
High rate of early mortality
By age 10: some walk/acquire some self-care skills with assistance
Gesture communication
Recognizes some familiar people
Mental age range from birth to 4 years of age
Functional skill acquisition not likely

3.2 Specific Learning Disabilities;

Learning disabilities (LEARNING DISABILITYs) are real. They affect the
brain's ability to receive, process, store, respond to and communicate
information. LEARNING DISABILITYs are actually a group of disorders, not a
single disorder.
Learning disabilities are not the same as intellectual disabilities
(formerly known as mental retardation), sensory impairments (vision or
hearing) or autism spectrum disorders. People with LEARNING DISABILITY
are of average or above-average intelligence but still struggle to acquire skills
that impact their performance in school, at home, in the community and in the
workplace. Learning disabilities are lifelong, and the sooner they are

40
recognized and identified, the sooner steps can be taken to circumvent or
overcome the challenges they present.
ACCORDING TO WHO:
ICD-10 (INTERNATIONAL CLASSIFICATION OF DISEASES, 2010)
A condition of arrested or incomplete development of the mind, which
is especially characterized by impairment of skills manifested during the
developmental period, which contribute to the overall level of intelligence, i.e.
cognitive, language, motor and social abilities.
ACCORDING TO AAMR:
Specific learning disability refers to heterogeneous clusters of disorders
that significantly impede the normal progress of academic achievement in 2%-
3% of the school population. The lack of progress is exhibited in school
performance that remains below expectation for chronological and mental
ages, even when provided with high-quality instruction. The primary
manifestation of the failure to progress is significant underachievement in a
basic skill area (i.e., reading, math, and writing) that is not associated with
insufficient educational, interpersonal, cultural/familial, and/or sociolinguistic
experiences. The primary severe ability-achievement discrepancy is
coincident with deficits in linguistic competence (receptive and/or
expressive), cognitive functioning (e.g., problem solving, thinking abilities,
maturation), neuropsychological processes (e.g., perception, attention,
memory), or any combination of such contributing deficits that are presumed
to originate from central nervous system dysfunction. The specific learning
disability is a discrete condition differentiated from generalized learning
failure by average or above (> 90) cognitive ability and a learning skill profile
exhibiting significant scatter indicating areas of strength and weakness. The
major specific learning disability may be accompanied by secondary learning
difficulties that also may be considered when planning the more intensive,
individualized special education instruction directed at the primary problem.
41
Specific types of learning disabilities and related disorders

Symptoms
Disability Area of difficulty include Example
trouble with

Confusing letter names

and sounds, difficulties
Reading blending sounds into
Processing
Dyslexia Writing words, slow rate of
language
Spelling reading, trouble
remembering after
reading text

Computation
Difficulty learning to
Remembering
count by 2s, 3s, 4s, poor
math facts
Dyscalculia Math skills mental math skills,
Concepts of
problems with spatial
time
directions
and money

Handwriting Illegible handwriting,

Written expressio
Dysgraphia Spelling difficulty organizing ideas
n
Composition for writing

Coordination
Trouble with scissors,
Dyspraxia Fine motor skills Manual
buttons, drawing
dexterity

Information Processing Disorders

42
Auditory Interpreting Language Difficulty anticipating
Processing auditory development how a speaker will end a
Disorder information Reading sentence

Visual Reading
Interpreting visual Difficulty distinguishing
Processing Writing
information letters like
Disorder Math

Other Related Disorders

Attention-
Deficit/ Over-activity Can't sit still, loses
Concentration and
Hyperactivit Distractibility interest quickly,
focus
y Disorder Impulsivity daydreams
(ADHD)

3.3 Autism Spectrum Disorder;

World Health Organization (WHO) 2013

Core symptoms: Mixture of impaired capacity for reciprocal socio-
communicative interaction and a restricted, stereotyped repetitive repertoire
of interests. Individuals with ASD may have decreased general intellectual
ability.
Neuro-developmental impairments in communication, social
interaction and unusual ways of perceiving and processing information
hinders daily functioning of people with ASDs and impede their educational
and social attainments.

The Individuals with Disabilities Education Act (IDEA)

A developmental disability affecting verbal and non-verbal communication
and social interaction,(Age<3).

43
 Engagement in repetitive activities and stereotyped movements, resistance to
environmental change or change in daily routines, and unusual responses to
sensory experiences.

Rehabilitation Council of India (RCI)

Autism is one of five developmental disorders included under the umbrella of
the Pervasive Developmental Disorders.
Autism is characterized by deficits in social interaction and communication,
and unusual and repetitive behavior. Autism manifests at birth or within the
first two-and-a-half years of life.
The Americans with Disabilities Act of 1990 (ADA)
Autism is defined as a developmental disability significantly affecting verbal
and non- verbal communication and social interaction, generally (< age 3),
which adversely affects a child's educational performance
Types of ASD
The most recent and updated version of the Diagnostic and Statistical
Manual of Mental Disorders version 5 (DSM -5) of American Psychiatric
Association has just a single category for the diagnosis of an autistic disorder
Autism or Autistic Disorder: Children who seem to have met most of the
rigid criteria of a diagnosis of Autism are said to have Autism or Autistic
Disorder. They have moderate to severe impairments in Social and Language
skills, possess Repetitive Behaviors and Restricted Interests. Often the
children and individuals with Autistic Disorder also have mental retardation
and seizures.
Asperger: AS, is the mildest form of Autism. It is found to have affected boys
three times more in comparison with girls.
The most common symptoms of Asperger Syndrome are the children affected
become excessively interested in a single subject or topic. They tend to find
out and learn everything about their preferred subject and talk about it all the
time. As compared with other form of Autism, children with Asperger have
extremely good vocabulary however their social skills are markedly impaired
and they are often awkward and uncoordinated.
It is also found that the children with Asperger
PDD-NOS (Pervasive Development Disorder, Not Otherwise Specified):
PDD-NOS is a little complex syndrome to diagnose amongst children on the
Autism Spectrum. Commonly children & individuals whose behavioral
symptoms are more severe than Asperger

44
No two children/individuals with PDD-NOS exhibit similar symptoms. This
makes generalizing the disorder rather more complex. Commonly, children
with PDD-NOS exhibit following symptoms:
Impaired social communication/interaction (similar to Autistic Disorder)
Better language/communication skills as compared to children with Autistic
Disorder however these skills are not as good as of children with Asperger
Lesser sensory dysfunction as a result fewer repetitive behaviors
Ret Syndrome: Ret Syndrome is severe form of Autism and it mostly occurs in
girls. It is mostly caused by a genetic mutation wherein the mutation occurs
randomly and has no inherited significance. It is a rare syndrome affecting
about one in 10,000-15,000 girls.
In this syndrome, girls aging between 6 to 18 months of age regress marginally
and lose linguistic and social skills. They habitually wring hands and develop
coordination problems. Head growth slows down significantly and by the age
of two their head appears to be far below normal. The treatment of Rett
Syndrome focuses mostly on physical therapy and speech therapy to improve
function.
Child Disintegrative Disorder: It is the least common and most severe form
of Autism Spectrum Disorder. In CDD, the child rapidly loses multiple areas of
function between the ages of 2 to 4 years of age. This regression takes place in
social skills, linguistic skills as well as in intellectual abilities.
Very often the child develops a seizure disorder. The children with CDD
The number of children affecting CDD is lesser than 2 children per 100,000
children with Autism Spectrum Disorder. Boys are more commonly affected by
CDD than girls.

3.4 Mental Illness,

The WHO stress that mental health is

They also emphasize that preserving and restoring mental health is crucial on
an individual basis, as well as throughout different communities and societies
the world over.

According to WHO-
Mental disorders comprise a broad range of problems, with different
symptoms. However, they are generally characterized by some combination of
abnormal thoughts, emotions, behavior and relationships with others.
Examples are schizophrenia, depression, intellectual disabilities and disorders
due to drug abuse. Most of these disorders can be successfully treated.
45
There are many different conditions that are recognized as mental illnesses. The
more common types include:
Anxiety disorders: People with anxiety disorders respond to certain
objects or situations with fear and dread, as well as with physical signs of anxiety
or panic, such as a rapid heartbeat and sweating. An anxiety disorder is
diagnosed if the person's response is not appropriate for the situation, if the
person cannot control the response, or if the anxiety interferes with normal
functioning. Anxiety disorders include generalized anxiety disorder, panic
disorder, social anxiety disorder, and specific phobias.
Mood disorders: These disorders, also called affective disorders, involve
persistent feelings of sadness or periods of feeling overly happy, or fluctuations
from extreme happiness to extreme sadness. The most common mood disorders
are depression, bipolar disorder, and cyclothymic disorder.
Psychotic disorders: Psychotic disorders involve distorted awareness
and thinking. Two of the most common symptoms of psychotic disorders
are hallucinations -- the experience of images or sounds that are not real, such as
hearing voices -- and delusions, which are false fixed beliefs that the ill person
accepts as true, despite evidence to the contrary. Schizophrenia is an example of
a psychotic disorder.
Eating disorders: Eating disorders involve extreme emotions, attitudes,
and behaviors involving weight and food. Anorexia nervosa, bulimia nervosa,
and binge eating disorder are the most common eating disorders.
Impulse control and addiction disorders: People with impulse control
disorders are unable to resist urges, or impulses, to perform acts that could be
harmful to themselves or others. Pyromania (starting fires), kleptomania
(stealing), and compulsive gambling are examples of impulse control disorders.
Alcohol and drug are common objects of addictions. Often, people with these
disorders become so involved with the objects of their addiction that they begin
to ignore responsibilities and relationships.
Personality disorders: People with personality disorders have extreme
and inflexible personality traits that are distressing to the person and/or cause
problems in work, school, or social relationships. In addition, the person's
patterns of thinking and behavior significantly differ from the expectations of
society and are so rigid that they interfere with the person's normal functioning.
Examples include antisocial personality disorder, obsessive-compulsive
personality disorder, and paranoid personality disorder.
Obsessive-compulsive disorder (OCD): People with OCD are plagued by
constant thoughts or fears that cause them to perform certain rituals or routines.
The disturbing thoughts are called obsessions, and the rituals are called
compulsions. An example is a person with an unreasonable fear of germs who
constantly washes his or her hands.
Post-traumatic stress disorder (PTSD): PTSD is a condition that can
develop following a traumatic and/or terrifying event, such as a sexual or
46
physical assault, the unexpected death of a loved one, or a natural disaster.
People with PTSD often have lasting and frightening thoughts and memories of
the event, and tend to be emotionally numb.

3.5 Chronic Neurological conditions and Blood Disorders;

A lot of people feel confused about which diseases are covered under the
umbrella term Chronic Neurological Conditions. India RPWD Act
2016 mentions Chronic Neurological Conditions as one of the recognized
disabilities. In order to provide a meaning or definition of these conditions, the
guidelines give examples of Multiple Sclerosis and Parkinson.
Definition and Meaning of Chronic Neurological Conditions
The 4th July 2018 notification of the Ministry of Social Justice and
Empowerment give definition as below:
Chronic neurological conditions, such as communicate with each other;
But MS and PD have been cited only as examples.
Neurological disorders are diseases of the central and peripheral
nervous system. In other words, the brain, spinal cord, cranial nerves,
peripheral nerves, nerve roots, autonomic nervous system, neuromuscular
junction, and muscles. These disorders include epilepsy, Alzheimer disease
and other dementias, cerebrovascular diseases including stroke, migraine and
other headache disorders, multiple sclerosis, Parkinson's disease,
neuroinfections, brain tumors, traumatic disorders of the nervous system due
to head trauma, and neurological disorders as a result of malnutrition.
Many bacterial (i.e. Mycobacterial tuberculosis, Neisseria meningitides), viral
(i.e. Human Immunodeficiency Virus (HIV), Enter viruses, West Nile Virus,
Zika), fungal (i.e. Cryptococcus, Aspergilla’s), and parasitic (i.e. malaria,
Chases) infections can affect the nervous system. Neurological symptoms may
occur due to the infection itself, or due to an immune response.

TYPES OF CHRONIC NEUROLOGICAL CONDITIONS

There are other conditions that can be categorized under Chronic Neurological
Conditions. Some more examples can be:
1. Alzheimer
2. Parkinson
3. Dystonia
4. ALS (Lou Gehrig
5. Huntington
6. Neuromuscular disease
7. Multiple sclerosis

47
8. Epilepsy
9. Stroke

ALZHEIMER
Dementia is a deterioration of intellectual function and other cognitive
skills that is of sufficient severity to interfere with social or occupational
functioning. Of the many diseases that lead to dementia, AD is the most
common cause worldwide among people age 65 and older, followed by
vascular dementia, mixed dementia consisting of AD plus vascular dementia,
and dementia caused by general medical conditions. Although distinguishing
AD from other causes of dementia is important, particularly for treatment with
acetyl cholinesterase inhibitors, the burden from all causes of dementia is
similar. Although the discussion in this chapter deals mostly with AD, the role
of treatable dementias in developing countries is important as it can reduce
the burden of caring in families. In the early stages of Alzheimer's disease,
memory loss is mild, but in its late-stage, individuals lose the ability to
complete daily tasks, carry on a conversation, and respond to their
environment. Alzheimer's disease is the sixth leading cause of death in the
United States. Those with Alzheimer's disease live an average of eight years
after their symptoms become noticeable. However, depending on age and
other health conditions, survival can range from four to 20 years.
Risk and Protective Factors and Survivorship
Three separate genes (APP, PS1, and PS2) are linked to early onset,
familial AD. Another gene (APO E4) is a risk factor for late-onset, nonfamilies’
cases (Henderson and Jorum 2000). Other genes have been implicated but not
confirmed in large studies. Other risk factors reported in the literature include
increasing age, positive family history of dementia, female gender (but this
factor is controversial), lower level of education, several medical conditions,
and exposure to such environmental factors as organic solvents and
aluminum. Protective factors reported in the literature include a higher level
of education, a specific gene (APO E2), the intake of antioxidants, and the use
of some anti-inflammatory medications. The use of estrogen supplements for
women was believed to be a protective factor for AD (Henderson 1997), but a
recent study of women taking a combination of estrogen and progesterone
showed that these women had twice the risk of developing dementia than
women taking a placebo. Studies from developed countries have reported
median survival after the onset of dementia symptoms ranging from 5.0 years
48
to 9.3 years (Walsh, Welch, and Larson 1990). In developing countries, the
reported median survival was 3.3 years for all demented subjects and 2.7
years for those with AD.
PARKINSON
PD is characterized by bradykinesia, resting tremor, cogwheel rigidity,
postural reflex impairment, progressive course, and good response to
dopaminergic therapy. Other distinct forms of Parkinsonism include relatively
rare genetic forms and the less common neurodegenerations with multiple
system involvement or significant striatal lesions (for example, progressive
supranuclear palsy or multiple system atrophy). Parkinsonism secondary to
external causes, such as manganese poisoning or carbon monoxide poisoning,
although now rare, is referred to as secondary Parkinsonism. Because the
burden of these diseases to the patient is similar to or greater than that for PD
and there is no evidence for addressing these disorders separately, they will
not be distinguished here.

Parkinson's signs and symptoms may include:

Tremor. A tremor, or shaking, usually begins in a limb, often your hand or
fingers. You may a rub your thumb and forefinger back-and-forth, known as a
pill-rolling tremor. Your hand may tremor when it's at rest.
Slowed movement (bradykinesia). Over time, Parkinson's disease may slow
your movement, making simple tasks difficult and time-consuming. Your steps
may become shorter when you walk. It may be difficult to get out of a chair.
You may drag your feet as you try to walk.
Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff
muscles can be painful and limit your range of motion.
Impaired posture and balance. Your posture may become stooped, or you
may have balance problems as a result of Parkinson's disease.
Loss of automatic movements. You may have a decreased ability to perform
unconscious movements, including blinking, smiling or swinging your arms
when you walk.
Speech changes. You may speak softly, quickly, slur or hesitate before talking.
Your speech may be more of a monotone rather than with the usual
inflections.
Writing changes. It may become hard to write, and your writing may appear
small.
Causes and Risk Factors
The cause of PD is unknown. A specific environmental risk factor has not been
identified. Pure genetic forms account for 10 to 15 percent of cases or fewer.
Increasing age and male gender are risk factors worldwide. Exposure to
49
toxins, head trauma, frequent infections, diets high in animal fat, and midlife
adiposity have been reported to increase PD risk, but none do so consistently.
The most consistent association is an inverse association with cigarette
smoking and caffeine consumption, suggesting a protective effect.

EPILEPSY
Epilepsy is a common brain disorder characterized by two or more
unprovoked seizures. Seizures are discrete events caused by transient, hyper
synchronous, abnormal neuronal activity. Seizures may occur in close
temporal association with a variety of acute medical and neurological diseases,
such as acute stroke, sepsis, or alcohol withdrawal. However, the vast majority
of seizures have no immediate identifiable cause. Epilepsy can be broadly
divided into three categories: idiopathic epilepsy (for example primary
generalized childhood-onset absence epilepsy), which is thought to have a
genetic basis; secondary or symptomatic epilepsy, which is caused by a known
central nervous system injury or disorder, such as infection, stroke, traumatic
brain injury, or cerebral dysgenesis; and cryptogenic epilepsy, for which there
is no clear evidence of an etiological factor. Idiopathic and cryptogenic cases
represent approximately 70 percent of epilepsy cases; the remaining 30
percent are symptomatic (secondary). Seizures are the main symptom of
epilepsy.

Symptoms differ from person to person and according to the type of seizure.
Focal seizures
When seizures appear to result from abnormal activity in just one area of your
brain, they're called focal (partial) seizures. These seizures fall into two
categories:
Focal seizures without loss of consciousness. Once called simple partial
seizures, these seizures don't cause a loss of consciousness. They may alter
emotions or change the way things look, smell, feel, taste or sound. They may
also result in involuntary jerking of a body part, such as an arm or leg, and
spontaneous sensory symptoms such as tingling, dizziness and flashing lights.
Focal seizures with impaired awareness. Once called complex partial
seizures, these seizures involve a change or loss of consciousness or
awareness. During a complex partial seizure, you may stare into space and not
respond normally to your environment or perform repetitive movements,
such as hand rubbing, chewing, swallowing or walking in circles.
Symptoms of focal seizures may be confused with other neurological
disorders, such as migraine, narcolepsy or mental illness. A thorough
50
examination and testing are needed to distinguish epilepsy from other
disorders.

Generalized seizures
Seizures that appear to involve all areas of the brain are called generalized
seizures. Six types of generalized seizures exist.
Absence seizures. Absence seizures, previously known as petit mal seizures,
often occur in children and are characterized by staring into space or subtle
body movements such as eye blinking or lip smacking. These seizures may
occur in clusters and cause a brief loss of awareness.
Tonic seizures. Tonic seizures cause stiffening of your muscles. These
seizures usually affect muscles in your back, arms and legs and may cause you
to fall to the ground.
Atonic seizures. Atonic seizures, also known as drop seizures, cause a loss of
muscle control, which may cause you to suddenly collapse or fall down.
Clonic seizures. Clonic seizures are associated with repeated or rhythmic,
jerking muscle movements. These seizures usually affect the neck, face and
arms.
Myoclonic seizures. Myoclonic seizures usually appear as sudden brief jerks
or twitches of your arms and legs.
Tonic-clonic seizures. Tonic-clonic seizures, previously known as grand mal
seizures, are the most dramatic type of epileptic seizure and can cause an
abrupt loss of consciousness, body stiffening and shaking, and sometimes loss
of bladder control or biting your tongue.

Risk Factors
A reported risk factor for idiopathic (presumed genetic) epilepsy is
family history of epilepsy. Reported risk factors for symptomatic epilepsy
include prenatal or perinatal causes (obstetric complications, prematurity, low
birth weight, neonatal asphyxia). Recent data suggest that the effect of
obstetric complications or neonatal asphyxia may have been overemphasized.
Prematurity, low birth weight, and neonatal seizures may be independent risk
factors as well as markers of underlying disease. Other causes include
traumatic brain injuries, central nervous system infections, cerebrovascular
disease, brain tumors, and neurodegenerative diseases. Developmental
disabilities are not a risk factor for epilepsy in themselves, but they may be
associated with seizure disorder.

MULTIPLE SECLEROSIS

51
 Multiple sclerosis (MS) is an inflammatory demyelinating condition of
the central nervous system (CNS) that is generally considered to be
autoimmune in nature. In people with MS, the immune trigger is unknown, but
the targets are militated CNS tracts. In regions of inflammation, breakdown of
the blood
Numbness or weakness in one or more limbs that typically occurs on one side
of your body at a time, or your legs and trunk
Electric-shock sensations that occur with certain neck movements, especially
bending the neck forward (Lhermitte sign)
Tremor, lack of coordination or unsteady gait
Vision problems are also common, including:
Partial or complete loss of vision, usually in one eye at a time, often with pain
during eye movement
Prolonged double vision
Blurry vision
Multiple sclerosis symptoms may also include:
Slurred speech
Fatigue
Dizziness
Tingling or pain in parts of your body
Problems with sexual, bowel and bladder function

Types of MS
There are four types of MS:
Clinically isolated syndrome (CIS): This is a single, first episode, with
symptoms lasting at least 24 hours. If another episode occurs at a later date, a
doctor will diagnose relapse-remitting MS.
Relapse-remitting MS (RRMS): This is the most common form, affecting
around 85% of people with MS. RRMS involves episodes of new or increasing
symptoms, followed by periods of remission, during which symptoms go away
partially or totally.
Primary progressive MS (PPMS): Symptoms worsen progressively, without
early relapses or remissions. Some people may experience times of stability
and periods when symptoms worsen and then get better. Around 15% of
people with MS have PPMS.
Secondary progressive MS (SPMS): At first, people will experience episodes
of relapse and remission, but then the disease will start to progress steadily.

Risk Factors
52
 The worldwide distribution of MS can be only an indirect reflection of its
cause, implicating some environmental factor that varies with latitude, and can
be interpreted in at least three different ways in the search for clues to a
specific c etiology. First, an environmental risk factor may be more common in
temperate than tropical climates. Second, such a factor may be more common
in tropical climates, where it is acquired at an earlier age and consequently has
less impact. Third, this factor may be equally common in all regions, but the
chance of its acquisition or of the manifestation of symptoms is either
increased by some enhancing factor present in temperate climates or reduced
by a protective factor present in tropical areas. Among those factors that have
been most closely scrutinized are:
Infections, including a number of viral infections such as measles and Epstein
Climate and solar conditions;
Living conditions;
Diet and trace elements.
It is now generally accepted that the etiology of MS involves some
interplay of genetic and environmental factors. Evidence of racial or ethnic
resistance, the increased risk among MS family members, and elevated
monozygotic twin concordance rate all favor a genetic contribution to
acquisition of the disease. The studies from which this evidence is derived,
however, also indicate that heredity cannot entirely explain the occurrence of
MS. This is underlined by the fact that no population-based study of
monozygotic twins has found a concordance rate in excess of 30%. Some
environmental factor, such as a virus or toxin, must still play a role.

DYSTONIA
Dystonia is a very complex, highly variable neurological movement
disorder characterized by involuntary muscle contractions. Dystonia results
from abnormal functioning of the basal ganglia, a deep part of the brain which
helps control coordination of movement. These regions of the brain control
the speed and fluidity of movement and prevent unwanted movements.
Patients with dystonia may experience uncontrollable twisting, repetitive
movements or abnormal postures and positions. These can affect any part of
the body, including the arms, legs, trunk, face and vocal cords.
Depending on the part of the body affected, dystonia can seriously impact
daily functions. For example, if neck muscles are affected, a patient may have
difficulty chewing and swallowing. Though not life-threatening, the
involuntary nature of the disorder may be embarrassing, causing emotional
distress or depression in some individuals. There are a number of local

53
support groups throughout the United States that can help address some of
these issues, but patients may need to be treated separately for mental health
issues caused by the challenges of coping with this disorder.

ALS (LOU GEHRIG)

ALS, or amyotrophic lateral sclerosis, is a progressive
neurodegenerative disease that affects nerve cells in the brain and the spinal
cord. A-myo-trophic comes from the Greek language. "A" means no. "Myo"
refers to muscle, and "Trophic" means nourishment
Motor neurons reach from the brain to the spinal cord and from the
spinal cord to the muscles throughout the body. The progressive degeneration
of the motor neurons in ALS eventually leads to their demise. When the motor
neurons die, the ability of the brain to initiate and control muscle movement is
lost. With voluntary muscle action progressively affected, people may lose the
ability to speak, eat, move and breathe. The motor nerves that are affected
when you have ALS are the motor neurons that provide voluntary movements
and muscle control. Examples of voluntary movements are making the effort
to reach for a smart phone or step off a curb. These actions are controlled by
the muscles in the arms and legs. Signs and symptoms might include:
Difficulty walking or doing normal daily activities
Tripping and falling
Weakness in your leg, feet or ankles
Hand weakness or clumsiness
Slurred speech or trouble swallowing
Muscle cramps and twitching in your arms, shoulders and tongue
Inappropriate crying, laughing or yawning
Cognitive and behavioral changes

HUNTINGTON
Huntington the symptoms of HD are described as having ALS, Parkinson
Symptoms usually appear between the ages of 30 to 50, and worsen over a 10
to 25-year period. Ultimately, the weakened individual succumbs to
pneumonia, heart failure or other complications. Everyone has the gene that
causes HD, but only those that inherit the expansion of the gene will develop
HD and perhaps pass it on to each of their children. Every person who inherits
the expanded HD gene will eventually develop the disease. Over time, HD
affects the individual
Personality changes, mood swings & depression
Forgetfulness & impaired judgment

54
Unsteady gait & involuntary movements (chorea)
Slurred speech, difficulty in swallowing & significant weight loss
Causes
Huntington's disease is caused by an inherited defect in a single gene.
Huntington's disease is an autosomal dominant disorder, which means that a
person needs only one copy of the defective gene to develop the disorder.
With the exception of genes on the sex chromosomes, a person inherits two
copies of every gene

NEUROMUSCULAR DISEASE
Neuromuscular disease is a broad term that encompasses many diseases
and ailments that impair the functioning of the muscles. These may directly
involve the muscle directly or indirectly by involving the nerves or the
neuromuscular junction (the meeting point of the motor nerves and muscle
fiber). The symptoms of neuromuscular diseases may include- Numbness,
painful abnormal sensation, muscle weakness, muscle atrophy, muscle pain or
twitching (fasciculation). The Neuromuscular diseases may be categorized into
the following groups:
Diseases of Anterior Horn Cells (Junction between spinal cord and motor
nerve)
Diseases involving motor and sensory nerves
Disorders of the Neuromuscular function
Diseases of the muscles (Myopathies)- Muscular Dystrophy and Inflammatory
myopathies

Blood Disorders
Thalassemia is a genetically inherited blood disorder which is
characterized by the production of less or abnormal hemoglobin. As we know,
hemoglobin is a protein found in Red Blood Cells. Hemoglobin is responsible
for carrying oxygen around in the body. Thalassemia results in large numbers
of red blood cells being destroyed, which leads to anemia. Anemia is a
condition in which your body doesn’t
Thalassemia is inherited, meaning that at least one of your parents must be a
carrier of the disorder. It
TYPES
Thalassemia beta
Beta thalassemia occurs when your body can
Thalassemia major

55
Thalassemia major is the most severe form of beta thalassemia. It develops
when beta globin genes are missing.
The symptoms of thalassemia major generally appear before a child
 fussiness
 paleness
 frequent infections
 a poor appetite
 failure to thrive
 jaundice, which is a yellowing of the skin or the whites of the eyes
 enlarged organs
This form of thalassemia is usually so severe that it requires regular blood
transfusions.
Thalassemia intermedia
Thalassemia intermedia is a less severe form. It develops because of
alterations in both beta globin genes. People with thalassemia intermedia don
Thalassemia alpha
Alpha thalassemia occurs when the body can
This type of thalassemia also has two serious types: hemoglobin H disease and
hydrops fetalis.
Hemoglobin H
Hemoglobin H develops as when a person is missing three alpha globin genes
or experiences changes in these genes. This disease can lead to bone issues.
The cheeks, forehead, and jaw may all overgrow. Additionally, hemoglobin H
disease can cause:
 jaundice
 an extremely enlarged spleen
 malnourishment
Hydrops fetalis
Hydrops fetalis is an extremely severe form of thalassemia that occurs before
birth. Most babies with this condition are either stillborn or die shortly after
being born. This condition develops when all four alpha globin genes are
altered or missing.
Thalassemia and anemia
Thalassemia can quickly lead to anemia. This condition is marked by a lack of
oxygen being transported to tissues and organs. Since red blood cells are

56
responsible for delivering oxygen, a reduced number of these cells means you
don
Your anemia may be mild to severe. Symptoms of anemia include:
 dizziness
 fatigue
 irritability
 shortness of breath
 weakness
Anemia can also cause you to pass out. Severe cases can lead to widespread
organ damage, which can be fatal.
CAUSES
Thalassemia is caused by mutations in the DNA of cells that make hemoglobin
Hemoglobin molecules are made of chains called alpha and beta chains that
can be affected by mutations. In thalassemia, the production of either the
alpha or beta chains are reduced, resulting in either alpha-thalassemia or beta-
thalassemia.
In alpha-thalassemia, the severity of thalassemia you have depends on the
number of gene mutations you inherit from your parents. The more mutated
genes, the more severe your thalassemia.
In beta-thalassemia, the severity of thalassemia you have depends on which
part of the hemoglobin molecule is affected.
Alpha-thalassemia
Four genes are involved in making the alpha hemoglobin chain. You get two
from each of your parents. If you inherit:
One mutated gene, you'll have no signs or symptoms of thalassemia. But you
are a carrier of the disease and can pass it on to your children.
Two mutated genes, your thalassemia signs and symptoms will be mild. This
condition might be called alpha-thalassemia trait.
Three mutated genes, your signs and symptoms will be moderate to severe.
Inheriting four mutated genes is rare and usually results in stillbirth. Babies
born with this condition often die shortly after birth or require lifelong
transfusion therapy. In rare cases, a child born with this condition can be
treated with transfusions and a stem cell transplant.
Beta-thalassemia
Two genes are involved in making the beta hemoglobin chain. You get one
from each of your parents. If you inherit:
One mutated gene, you'll have mild signs and symptoms. This condition is
called thalassemia minor or beta-thalassemia.

57
Two mutated genes, your signs and symptoms will be moderate to severe.
This condition is called thalassemia major, or Cooley anemia.
Babies born with two defective beta hemoglobin genes usually are healthy at
birth but develop signs and symptoms within the first two years of life. A
milder form, called thalassemia intermediate, also can result from two
mutated genes.
RISK FACTORS
Factors that increase your risk of thalassemia include:
Family history of thalassemia. Thalassemia is passed from parents to
children through mutated hemoglobin genes.
Certain ancestry. Thalassemia occurs most often in African Americans and in
people of Mediterranean and Southeast Asian descent.

HEMOPHILIA
Hemophilia is a bleeding disorder that slows the blood clotting process.
People with this condition experience prolonged bleeding or oozing following
an injury, surgery, or having a tooth pulled. In severe cases of hemophilia,
continuous bleeding occurs after minor trauma or even in the absence of
injury (spontaneous bleeding). Serious complications can result from bleeding
into the joints, muscles, brain, or other internal organs. Milder forms
of hemophilia do not necessarily involve spontaneous bleeding, and the
condition may not become apparent until abnormal bleeding occurs following
surgery or a serious injury.

TYPES OF HEMOPHILIA
The two main types of hemophilia are A and B, according to the National
Hemophilia Foundation. A third, rarer form of the disease is called hemophilia
C. Each type is directly related to a specific factor, namely, hemophilia A is a
Factor VIII deficiency, hemophilia B is a Factor IX deficiency and hemophilia C
is a Factor XI deficiency.

Hemophilia type A
Hemophilia A is a genetic disorder caused by missing or defective Factor
VIII protein. It is inherited, but in about one-third of known cases it is caused
by a spontaneous genetic mutation.
The blood disorder affects all ethnic groups equally. More than half of all
people with hemophilia A have a severe form of the disease.
Hemophilia A is carried by the X chromosome. It is inherited in an X-
linked recessive manner. As such, two hemophilia-carrying X chromosomes
must be inherited for the disease to be active in women, but only in one X
chromosome for men.

58
 A female inherits two XX chromosomes, one from her mother and one
from her father (XX). A male inherits an X chromosome and a Y chromosome
from her father (XY). This means that if a son inherits an X chromosome from
his mother who carries hemophilia, he will have hemophilia. But because
women receive two X chromosomes, only if both parents carry the defective
gene can they develop the disease.
Hemophilia A has three stages: mild, moderate and severe, depending on
the ratio of Factor VIII clotting protein in the blood. Mild hemophilia 6-49
percent, moderate hemophilia is 1-5 percent, and severe is less than 1 percent.
People with hemophilia A bleed longer than others, internally or
externally. Those with mild hemophilia A generally bleed only after serious
injury, trauma or surgery. Often, the disease is diagnosed after one of these
situations due to prolonged bleeding, and the first episode may occur only in
adulthood. Women often experience heavy menstrual periods and can
hemorrhage after giving birth.
Moderate hemophilia patients tend to have more frequent bleeding
episodes after less important injuries, or even spontaneously. In severe cases,
bleeding may occur spontaneously in the joints and muscles.
Hemophilia A should be diagnosed and treated at a specialized
hemophilia center. Tests that evaluate clotting time and a patient
The main treatment for hemophilia A is concentrated Factor
VIII product, which is administered intravenously.
Patients with severe hemophilia may be given a routine treatment
regimen called prophylaxis to maintain enough clotting factor in their
bloodstream to prevent bleeds.

Hemophilia type B
Hemophilia B is a genetic disorder caused by missing or defective Factor
IX clotting protein. It is also inherited, and just like hemophilia A, it can be
caused by a spontaneous genetic mutation in one-third of the cases. This type
of hemophilia also affects all ethnic groups equally, but it is about four times as
rare as hemophilia A.
Hemophilia B is also carried in the X chromosome, in an X-linked
recessive manner, meaning that two hemophilia-carrying X chromosomes
must be inherited for the disease to be active in women, but only in one X
chromosome in men.
Females inherit two XX chromosomes, one from their mother and one
from their father (XX). Males inherit an X chromosome and a Y chromosome
from their father (XY). This means that is a son inherits an X chromosome
from his mother that has carries hemophilia, he will have hemophilia. But
because women receive two X chromosomes, it
Severity levels are the same as hemophilia A, as well as symptoms.

59
Like hemophilia A, hemophilia B should be diagnosed at a specialized medical
facility. Tests that evaluate clotting time and a patient
In hemophilia B, the most common treatment is the administration of
concentrated Factor IX, administered intravenously. Severe cases of
hemophilia B will also be on prophylaxis treatment, to maintain Factor
IX clotting factor.

Hemophilia type C
Hemophilia C is a genetic disorder caused by missing or defective Factor
XI clotting protein. The disease was first recognized in 1953 in patients who
experienced severe bleeding after dental extractions.
The incidence of hemophilia C is estimated at one in every 100,000
people in the general population. In Israel, Factor XI deficiency occurs in up to
8 percent of Ashkenazi Jews due to intermarriage. This is because a Factor XI
deficiency is inherited in an autosomal recessive pattern, meaning both
parents must carry the gene to pass it on to their children. Unlike hemophilia A
and B, men and women are affected equally.
Factor XI plays an important role in the clotting cascade, which leads to
clotting. It helps generate more thrombin, a protein that converts fibrinogen to
fibrin, which traps platelets and helps hold a clot in place.
Unlike hemophilia A and B, symptoms don
Many women may not know they
To diagnose hemophilia C, doctors will order a bleeding time test,
platelet function tests, and prothrombin time (PT) and activated partial
thromboplastic time (aPTT) tests.
Factor XI concentrates are unavailable in the United States as yet, so
doctors normally treat hemophilia C with fresh frozen plasma. But because
Factor XI is not concentrated in this treatment, large amounts may be
necessary, which can lead to blood clots. This treatment must be administered
carefully.
Fibrin glue is also used to maintain clots after mouth bleeds. When
combined with fresh frozen plasma, it arrests bleeding after circumcision and
hernia repair. Antifibrinolytics are used to control nose bleeds or bleeding
after tooth extraction.
SYMPTOMS
The major symptom is bleeding, either prolonged external bleeding or
bruising after minor trauma or for no apparent reason. Symptoms vary
depending on whether the patient has the mild, moderate, or severe form of
the disorder:
 In severe hemophilia, unprovoked (spontaneous) bleeding episodes
occur often.
 In moderate hemophilia, prolonged bleeding tends to occur after a more
significant injury.
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 In mild hemophilia, a patient might have unusual bleeding, but only after
a major injury, surgery, or trauma.
People with hemophilia may have any type of internal bleeding, but most often
it occurs in the muscles and joints, such as the elbows, knees, hips, shoulders
and ankles. There may be no pain at first, but if the bleeding continues, the
joint may become hot to the touch, swollen, and painful to move.
Repeated bleeding into the joints and muscles over time may cause permanent
damage, such as joint deformity and reduced mobility.
Bleeding in the brain is a very serious problem for those with severe
hemophilia. It may be life-threatening. Get medical help immediately if you
have signs of bleeding, such as:
 Changes in behavior.
 Excessive sleepiness.
 Headache that will not go away.
 Neck pain.
 Double vision.
 Vomiting.
 Convulsions or seizures.
CAUSES
When you bleed, your body normally pools blood cells together to form a clot
to stop the bleeding. The clotting process is encouraged by certain blood
particles. Hemophilia occurs when you have a deficiency in one of these
clotting factors.
There are several types of hemophilia, and most forms are inherited. However,
about 30% of people with hemophilia have no family history of the disorder.
In these people, an unexpected change occurs in one of the genes associated
with hemophilia.
Acquired hemophilia is a rare variety of the condition that occurs when a
person's immune system attacks clotting factors in the blood. It can be
associated with:
Pregnancy
Autoimmune conditions
Cancer
Multiple sclerosis

SICKLE CELL DISEASE

Sickle Cell Disease is a group of blood disorders that causes red blood cells
(RBCs) to become sickle-shaped, misshapen and break down. The oxygen-
carrying capacity of such misshapen RBCs reduce significantly. Sickle cell
anemia is an inherited red blood cell disorder in which there aren't enough
healthy red blood cells to carry oxygen throughout your body. It is a
61
genetically transferred disease. Red Blood Cells contain a protein called
hemoglobin. This is the protein that binds oxygen and carry it to all the parts
of the body.
A gene on chromosome 11 is responsible for producing hemoglobin
protein. This gene sometimes becomes abnormal due to mutation. If a person
inherits two abnormal copies of this gene, one from each parent, then that
person will develop sickle cell disease. The sickle cell gene is passed from
generation to generation in a pattern of inheritance called autosomal
recessive inheritance. This means that both the mother and the father must
pass on the defective form of the gene for a child to be affected. There's no
cure for most people with sickle cell anemia. But treatments can relieve pain
and help prevent complications associated with the disease.
TYPES OF SCD
Following are the most common types of SCD:
HbSS
People who have this form of SCD inherit two sickle cell genes (sickle cell
anemia and is usually the most severe form of the disease.
HbSC
People who have this form of SCD inherit a sickle cell gene (
HbS beta thalassemia
People who have this form of SCD inherit one sickle cell gene (
There also are a few rare types of SCD:
HbSD, HbSE, and HbSO
People who have these forms of SCD inherit one sickle cell gene (

SICKLE CELL TRAIT (SCT)

HbAS
People who have SCT inherit one sickle cell gene (sickle cell trait (SCT).
People with SCT usually do not have any of the signs of the disease and live a
normal life, but they can pass the trait on to their children. Additionally, there
are a few, uncommon health problems that may potentially be related to sickle
cell trait.
SYMPTOMS
Signs and symptoms of sickle cell anemia usually appear around 5
months of age. They vary from person to person and change over time. Signs
and symptoms can include:
Anemia. Sickle cells break apart easily and die, leaving you with too few red
blood cells. Red blood cells usually live for about 120 days before they need to
be replaced. But sickle cells usually die in 10 to 20 days, leaving a shortage of
red blood cells (anemia).
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Without enough red blood cells, your body can't get enough oxygen, causing
fatigue.
Episodes of pain. Periodic episodes of pain, called pain crises, are a major
symptom of sickle cell anemia. Pain develops when sickle-shaped red blood
cells block blood flow through tiny blood vessels to your chest, abdomen and
joints. Pain can also occur in your bones.
The pain varies in intensity and can last for a few hours to a few weeks. Some
people have only a few pain crises a year. Others have a dozen or more pain
crises a year. A severe pain crisis requires a hospital stay.
Some adolescents and adults with sickle cell anemia also have chronic pain,
which can result from bone and joint damage, ulcers, and other causes.
Swelling of hands and feet. The swelling is caused by sickle-shaped red blood
cells blocking blood flow to the hands and feet.
Frequent infections. Sickle cells can damage your spleen, leaving you more
vulnerable to infections. Doctors commonly give infants and children with
sickle cell anemia vaccinations and antibiotics to prevent potentially life-
threatening infections, such as pneumonia.
Delayed growth or puberty. Red blood cells provide your body with the
oxygen and nutrients needed for growth. A shortage of healthy red blood cells
can slow growth in infants and children and delay puberty in teenagers.
Vision problems. Tiny blood vessels that supply your eyes can become
plugged with sickle cells. This can damage the retina
CAUSES
Mutations in the HBB gene cause sickle cell disease.
Hemoglobin consists of four protein subunits, typically, two subunits
called alpha-globin and two subunits called beta-globin. The HBB gene
provides instructions for making beta-globin. Various versions of beta-globin
result from different mutations in the HBB gene. One particular HBB gene
mutation produces an abnormal version of beta-globin known as hemoglobin
S (HbS). Other mutations in the HBB gene lead to additional abnormal versions
of beta-globin such as hemoglobin C (HbC) and hemoglobin E (HbE). HBB gene
mutations can also result in an unusually low level of beta-globin; this
abnormality is called beta thalassemia.
In people with sickle cell disease, at least one of the beta-globin subunits
in hemoglobin is replaced with hemoglobin S. In sickle cell anemia, which is a
common form of sickle cell disease, hemoglobin S replaces both beta-globin
subunits in hemoglobin. In other types of sickle cell disease, just one beta-
globin subunit in hemoglobin is replaced with hemoglobin S. The other beta-
globin subunit is replaced with a different abnormal variant, such as
hemoglobin C. For example, people with sickle-hemoglobin C (HbSC) disease
63
have hemoglobin molecules with hemoglobin S and hemoglobin C instead of
beta-globin. If mutations that produce hemoglobin S and beta
thalassemia occur together, individuals have hemoglobin S-beta
thalassemia (HbSBetaThal) disease.
Abnormal versions of beta-globin can distort red blood cells into a sickle
shape. The sickle-shaped red blood cells die prematurely, which can lead to
anemia. Sometimes the inflexible, sickle-shaped cells get stuck in small blood
vessels and can cause serious medical complications.

Unit 4: Early Identification and Intervention:

4.1 Concept, need, importance and domains of early identification

and intervention of disabilities and twice exceptional children;
4.2 Organizing Cross Disability Early Intervention services;
4.3 Screening and assessments of disabilities and twice exceptional
children;
4.4 Role of parents, community, ECEC and other stakeholders in early
intervention as per RPD- 2016 and NEP 2020;
4.5 Models of early intervention-(home-based, center-based, hospital-
based, combination) with reference to transition from home to school;

64
4.1 Concept, need, importance and domains of early identification
and intervention of disabilities and twice exceptional children

Early Identification refers to a parent, educator, health professional, or

other adult
The earliest years of a child's life are critical. These years determine
child's survival and thriving in life, and lay the foundations for her/ his
learning and holistic development. It is during the early years that children
develop the cognitive, physical, social and emotional skills that they need to
succeed in life. The World Health Organization (WHO) states that early
childhood is the most important phase for overall development. Factors like
disability and malnutrition pose particularly difficult challenges. However, if
these problems are solved at an early age, it minimizes developmental risks
and enhances child development.
However as per guidelines of IDEA (Individuals with establishing the
socio-demographic profiles & the Disabilities Education Act) of United States,
"Early pattern of clinical features in children attending EIP. The intervention
services are designed to meet the study also sought to assess the profile and
expectations of developmental needs of children, from birth to three years
people who attended the clinic with the long term of age, who have a delay in
physical, cognitive, objective of modifying the program as per their needs.
Communicative, social, emotional or adaptive development or have a
diagnosed condition that has a high probability of resulting in developmental
delay “Individuals with (Disabilities Education Act, 2001.
If children with developmental delays or disabilities and their families
are not provided with timely and appropriate early intervention, support and
protection, their difficulties can become more severe often leading to lifetime
consequences, increased poverty and profound exclusion. Typical
development is sometimes a struggle. Everyone likes to think that all babies
will be okay, that parents will have nothing to worry about. But the reality is
that not all babies will keep up, and some will continue to fall further and
further behind. Science demonstrates that intellectual and cognitive potential
is determined by how the brain develops during the first few years of life. The
brain controls the biological effects of all the other organ systems and
influences cognition, intelligence, learning, coping and adaptive skills, and
behavior. Because the brain controls these different aspects of human life,
impaired brain function leads to impaired physical, mental, and emotional
health and decreased functioning in society. Therefore, investments in early
65
childhood to support healthy brain development help to reduce societal costs
in remediation, health care, mental health services, and increased rates of
incarceration.

There are a number of reasons for this early identification:

Early Identification leads to early intervention, which is considered essential
in remediation.
The children have not yet faced academic failure therefore it becomes easier to
work with them as they still retain their motivation to learn.
At that young an age they have not developed the compensatory strategies,
which will later form barriers in the remedial process.
Research has shown that children who received assessment and remedial
services at a younger age were better able to cope with the disability and had a
better prognosis than those who received help later.
To determine eligibility for early intervention, a child will either receive a
qualifying diagnosis (such as autism) or greater delay in one or more of the
five domains of development. These include: physical, cognitive,
communicative, socioemotional, and adaptive. Let

Physical
This domain involves the senses (taste, touch, sight, smell, hearing, and
proprioception

Humans develop physical ability directionally, from top to bottom and the
center outward. A baby will at first have the ability to turn the head and sit
upright, before being able to reach, grab, and eventually walk and run as they
progress into toddlerhood (2-3 years). All the while child should be able to
instinctively respond and react to stimuli in his or her physical environment.
Cognitive
The cognitive domain of development refers to the ability to mentally process
information
1. During the sensorimotor stage of cognitive development (0-2 years),
humans are essentially limited to perceiving the world on a purely sensory
level. And adult makes a funny face at you? Laugh at what you see. Dangles a
toy in front of you? Reach for it.
2. By the time a child reaches the preoperational stage (2-6 years), he or
she is beginning to incorporate language into his or her analysis of people and
surroundings. However, in most cases, logical functioning ins
3. Prior to hitting puberty, a child should have arrived in the concrete
operational stage (7-11 years), where he or she can process events and

66
information at face value, but will still generally not be able to accommodate
abstracts or hypotheticals.
4. Persons 12 years and up are said to be in the formal operational stage,
able to perform the intricate mental gymnastics that make human beings so
remarkable. Thinking in the abstract
Communicative
The ability to comprehend, utilize, and manipulate language may be the single
most powerful skill a person can develop. The four aspects of language
development are phonology (forming a language telegraphic speech, simple
sentences communicating the essence of a want or need.

Socioemotional
To truly thrive, we must learn to exist peacefully within ourselves and coexist
with others. As a child develops within the socioemotional dimension, he or
she learns how to successfully regulate his or her own internal emotional state
and read the social cues of others. Strong emotions can be controlled or
expressed properly; confrontation can be managed without violence; we can
evolve empathy toward others.
By 6 months, a baby should be reacting to facial expressions and
reciprocating.
By a year, clear preferences in terms of likes and dislikes should begin to
surface
By two years, a child should be engaging in parallel play with his or her peers.
Each child may be involved in a separate activity, but they are interested in
each other
By three years, the awareness of self should have begun to form, and an ability
to express feelings.
By four years, the child should be able to cooperate with others, abide by
simple rules, and manage emotions without tantrums or aggression.
Adaptive
Adaptive development refers to the self-care component of growing up, taking
care of things like eating, drinking, toileting, bathing and getting dressed
independently. It also entails being aware of one

An intervention is a deliberate process by which change is introduced

into peoples' thoughts, feelings and behaviors.
Purpose of Intervention
Identifying curriculum & Instructional practices.
Developing new, or modifying existing preschool curricula
Appropriate teacher professional development.
Establishing the efficacy of existing preschool curricula
Developing and validating early assessment tools
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 Early Intervention (EI): Supporting infants and toddlers
At some point almost all early educators work with a child who receives
or needs early intervention (EI) services. Early intervention consists of
services and supports designed to help children who have a developmental
delay or special need, and their families. Through collaboration with families
and related service providers, supportive practices for infants and toddlers
who receive EI services can be implemented within existing routines and
across environments.
Early intervention is a resource that increases the likelihood of long-
term success as children transition into formal schooling and eventually move
into the work force.
Early Intervention
The introduction of planned program deliberately timed and arranged in-
order to alter the anticipated or projected course of development. [Siegel -
1972].
Preventive
Curative
Remedial
Alternative methods
Early intervention can sometimes help a child catch up to peers there are
three primary reasons for intervening early with an exceptional child:
1. To enhance the child's development,
2. To provide support and assistance to the family, and
3. To maximize the child's and family's benefit to society.
Effectiveness of Early Intervention
Needing fewer special education and other facilitative services later in life;
Being retained in grade less often; and
In some cases being indistinguishable from non-handicapped classmate’s
years after intervention.
Focus of Early Intervention
Screening
Identification
Prevention of disability or delay
Promotion of positive assets of a developmentally delayed child
Enhance the capacity of the family to meet the special needs of their infants
and toddlers

The IFSP as a guiding tool: Progress-driven vs outcome-focused

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An Individualized Family Service Plan (IFSP) is a document that accompanies a
child with developmental delays/special needs from birth until the age of
three. It summarizes the child

When early care and education (ECE) professionals observe a child using his
IFSP as a guide, it is important for professionals to:
1. Communicate often with the parent/guardian about the whole child and
how she exhibits specific outcomes. For example, she uses key words or signs
such as
2. Keep a running record of observations related to the whole child, not only
to the outcome that he is working on.
3. Utilize the early intervention providers working with the child, ask for
support strategies or adaptations for the individual child and, as appropriate,
with the whole class.
4. Identify the child
5. Do what works for as long as it works. Reassess often to ensure that
supports progress as the child progresses.

Twice-exceptional students (also known as 2e children or students) are

among the most under-identified and underserved population in schools. The
reason for this is two-fold: (1) the vast majority of school districts do not have
procedures in place for identifying twice-exceptional students and (2)
inadequate identification leads to the lack of access to appropriate educational
services. Additionally, twice-exceptional students, whose gifts and disabilities
often mask one another, are difficult to identify. Without appropriate
educational programming, twice exceptional students and their talents go
unrealized. In this article, we
What is twice exceptional (2e)?
The term education programs and counseling support.
What are the characteristics of twice exceptional children?
Twice exceptional kids may display strengths in certain areas and weaknesses
in others. Common characteristics of twice exceptional students include:
Outstanding critical thinking and problem-solving skills
Above average sensitivity, causing them to react more intensely to sounds,
tastes, smells, etc.
Strong sense of curiosity
Low self-esteem due to perfectionism
Poor social skills
Strong ability to concentrate deeply in areas of interest
Difficulties with reading and writing due to cognitive processing deficits
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Behavioral problems due to underlying stress, boredom and lack of motivation

4.2 Organizing Cross Disability Early Intervention services

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4.3 Screening and assessments of disabilities and twice exceptional
children;

Screening
Screening refers to the use of standardized assessment to identify delays
in development that may indicate the need for further evaluation.
Screening is the first step in the assessment process. It is a fast, efficient
way to identify students who may have disabilities and should undergo further
testing. It quickly establishes for the assessor that the student may require the
services of a professional who will then be able to administer the necessary
measures to either diagnose or rule out the presence of a disability. Screening
tools are often easy to administer and classroom teachers can be trained to
use these effectively to collect the initial impressions and information.

71
Screening of students may result in either the conclusion that there may be no
requirement of further investigation but adjustment of teaching or it may lead
to a referral for further, more comprehensive assessment.

Though often they are a part of the same process it is important to

distinguish between screening, evaluation and assessment.
It is usually these teachers who do the screening through their informal
measures including classroom tests. They are the ones that observe the
students over a period time and can talk of a pattern of behavior, which is so
important in the assessment process. Therefore it is appropriate to say that
the assessment procedure requires input from both informal measures
adopted by teachers for screening and tracking the progress of the student and
the formal tests that firmly establish the diagnose and provide the standards
for comparison.
Referral
Referral is the initial request to consider a student for a special education
evaluation.
It is usual for classroom teachers or parents to make the initial request. This is
a follow up of observations over a period of time and collection of initial
impressions about the student

Assessments of disabilities
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 "To assess" derives from the Latin verb "Assidere", to sit by (originally,
as an assistant-judge in the context of taxes). Hence, in "assessment of
learning" we "sit with the learner
In education, the term assessment refers to the wide variety of methods
or tools that educators use to evaluate, measure, and document the academic
readiness, learning progress, skill acquisition, or educational needs of
students.
Definition
"Assessment is the process of gathering and discussing information from
multiple and diverse sources in order to develop a deep understanding of
what students know, understand, and can do with their knowledge as a result
of their educational experiences; the process culminates when assessment
results are used to improve subsequent learning."(Huba, M. E. and Freed, J. E.
(2000).

Major forms of Educational Assessment and Purposes

1. High-stakes assessments are typically standardized tests used for the
purposes of accountability
2. Pre-assessments are administered before students begin a lesson, unit,
course, or academic program. Students are not necessarily expected to know
most, or even any, of the material evaluated by pre-assessments
3. Formative assessments are in-process evaluations of student learning
that are typically administered multiple times during a unit, course, or
academic program. The general purpose of formative assessment is to give
educators in-process feedback about what students are learning or not
learning so that instructional approaches, teaching materials, and academic
support can be modified accordingly. Formative assessments are usually not
scored or graded, and they may take a variety of forms, from more formal

73
quizzes and assignments to informal questioning techniques and in-class
discussions with students.
4. Summative assessments are used to evaluate student learning at the
conclusion of a specific instructional period for learning because educators use
the results to modify and improve teaching techniques during an instructional
period, while summative assessments are said to be of learning because they
evaluate academic achievement at the conclusion of an instructional period. Or
as assessment expert Paul Black put it,
5. Interim assessments are used to evaluate where students are in their
learning progress and determine whether they are on track to performing well
on future assessments, such as standardized tests, end-of-course exams, and
other forms of assessments, which are integrated into the instructional
process).
6. Placement assessments are used to
7. Screening assessments are used to determine whether students may need
specialized assistance or services, or whether they are ready to begin a course,
grade level, or academic program. Screening assessments may take a wide
variety of forms in educational settings, and they may be developmental,
physical, cognitive, or academic. A preschool screening test, for example, may
be used to determine whether a young child is physically, emotionally, socially,
and intellectually ready to begin preschool, while other screening tests may be
used to evaluate health, potential learning disabilities, and other student
attributes.
Assessments are also designed in a variety of ways for different purposes:
8. Standardized assessments are designed, administered, and scored in a
standard, or consistent, manner. They often use a multiple-choice format,
though some include open-ended, short-answer questions. Historically,
standardized tests featured rows of ovals that students filled in with a
number-two pencil, but increasingly the tests are computer-based.
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Standardized tests can be administered to large student populations of the
same age or grade level in a state, region, or country, and results can be
compared across individuals and groups of students.
9. Standards-referenced or standards-based assessments are designed to
measure how well students have mastered the specific knowledge and skills
described in local, state, or national learning standards. Standardized tests
and high-stakes tests may or may not be based on specific learning standards,
and individual schools and teachers may develop their own standards-
referenced or standards-based assessments.
10. Common assessments are used in a school or district to ensure that all
teachers are evaluating student performance in a more consistent, reliable,
and effective manner. Common assessments are used to encourage greater
consistency in teaching and assessment among teachers who are responsible
for teaching the same content, e.g. within a grade level, department,
or content area. They allow educators to compare performance results across
multiple classrooms, courses, schools, and/or learning experiences (which is
not possible when educators teach different material and individually develop
their own distinct assessments). Common assessments share the same format
and are administered in consistent ways assessment, or they use the same
scoring guides to interpret results. Common assessments may be e.
11. Performance assessments typically require students to complete a
complex task, such as a writing assignment, science experiment, speech,
presentation, performance, or long-term project, for example. Educators will
often use collaboratively developed common assessments, scoring guides,
rubrics, and other methods to evaluate whether the work produced by
students shows that they have learned what they were expected to learn.
Performance assessments may also be called
12. Portfolio-based assessments are collections of academic work learning
standards. As individuals, each of us has a unique combination of strengths
75
and weaknesses. But sometimes we are exceptionally strong or weak in
certain areas. In the school setting, students with exceptional strengths and
weaknesses may have different instructional needs than other students. Twice
exceptional or 2e is a term used to describe students who are both
intellectually gifted (as determined by an accepted standardized assessment)
and learning disabled, which includes students with dyslexia.

The NAGC (National Association for Gifted Children) recognizes three types of
students who could be identified as 2e:
Identified gifted students who have a learning disability
Students with a learning disability whose giftedness has not been identified
Unidentified students whose gifts and disabilities may be masked by average
school achievement
How can we identify 2e students?
Parents and teachers may fail to notice both giftedness and dyslexia. Dyslexia
may mask giftedness, and giftedness may mask dyslexia. Some common
characteristics of 2e individuals follow:
Superior oral vocabulary
Advanced ideas and opinions
High levels of creativity and problem- solving ability
Extremely curious, imaginative, and questioning
Discrepant verbal and performance skills
Clear peaks and valleys in cognitive test profile
Wide range of interests not related to school
Specific talent or consuming interest area
Sophisticated sense of humor
Key points to consider about assessments:
An assessment should be developmentally appropriate. Some tests are better
suited for identifying skills in the very young rather than the older
Developmental change can cause changes in test scores because the types of
variables that tests measure can change with age, and a child
Child to test as gifted at age 5 but not test as gifted when tested again at age 7.
This is one reason that a thorough evaluation that includes more than one
aptitude test is very important.
The tests used should validly measure the relevant skills. Some schools have a

Achievement Tests
Achievement tests determine what the students already have learned and if they
are more advanced than their grade level peers. They may be academic specific

76
(i.e. Math or Language Arts) or standardized tests (such as SATs, ITBS, SRA, and
MATs). These assessments should not have a ceiling so students are able to
show all of what they know. Tests specifically designed for the gifted population
include Test of Mathematical Abilities for Gifted Students or Screening
Assessment for Gifted Elementary Students (SAGES).
Ability Tests
Intelligence quotient (IQ) or cognitive abilities test scores are also used to
identify gifted and talented students. While these tests provide information for
the intellectual domain, these tests are not as helpful in identifying someone with
creative, leadership, or other abilities. Typical ability tests include:

Individual
Stanford Binet (L-M)
Wescher Intelligence Scale for Children, 4th Edition. Read NAGC's position
papesr Use of the WISC-V in Gifted Education and the WISC-IV.
Woodcock Johnson
Nonverbal tests, such as the Naglieri Nonverbal Ability Test or the Test of
Nonverbal Intelligence, may be more effective for students from culturally and
linguistically different or low-income backgrounds to eliminate barriers.

Group
CogAT
Otis-Lennon
Hemmon-Nelson
Ravens Progressive Matrices
Matrix Analogies Test

4.4 Role of parents, community, ECEC and other stakeholders in early

intervention as per RPD- 2016 and NEP 2020;
It is observed that though mental illness has been included as a condition
of disability, special needs of persons with mental illness (PMI) and their families
have not been properly addressed. PWD with mental illness require special and
different types of attention and care due to the nature of their illnesses.
Frequently, persons with severe mental illness are not in a position to be aware
of their illness because of the lack of insight. In these circumstances, their
families are great asset in providing them care and support. In our country,

77
where personnel resources in mental health care are extremely scarce, family is
a very important asset in the management of mental illness. Family members
need to be involved to the greatest extent in the mental healthcare and family
support should be encouraged as it provides moral, emotional, and physical
support to the PMI. However, the provisions of the section 7(2) of the Act may
result in a situation, in which the family members and other caregivers may be
less willing to be proactive and rather be scared to provide the required help.
In this way it can be said that RPwD Act, 2016 is praiseworthy step to ensure the
aim is to provide social justice, equality and opportunity to all persons with
disabilities of India. To fulfill these aims various organizations either
government or non-government play a vital role. So, for the implementation of
the act at its high and progressive level all these agencies should work hand in
hand with firm determination and honesty.

Parental involvement in a child

Parental involvement may be different from culture to culture and society to
society. Parental involvement may have different types, which might have
differential influence on academic performance of their children. Parental
expectations have a greater impact on student
Parental involvement categorized into four broad strands;
Parental involvement in children
Parental involvement in children
Direct parental involvement in academic activities of children and
Indirect parental involvement in academic activities of children.
It is true that parental involvement level vary among parents. For example
mother parent of young children, educated or uneducated parents, and father
Parents
Parents increase interaction with their children, become more responsive and
sensitive to their needs and more confident in their parenting skills.
Educators acquire a better understanding of families
Schools, by involving parents and the community, tend to establish better
reputations in the community.
The role of a community towards the disabled individual can be easily elaborated
if we emphasize on creating friendly relationships with pure intent and
understanding. First of all
The common ideology of all these platforms is to provide a sense of belonging for
the disabled individuals where they can share their real life experiences online in
a safe, comforting and friendly environment.

78
 One of the major step towards a collaborative community is to be provided
with trained teachers taking the responsibility of engaging the disabled
individuals. The importance of a trained teacher is substantial in an inclusive
education and the necessity of achieving better results by filling the space for the
disabled individual with knowledge and a sense of recognition. The right training
of the teachers should not be overlooked by the authorities but instead encourage
the trainee/trainers to participate in professional development courses. Hence,
teachers are the pioneers of a community in building a common ground for the
individuals facing any disability. Thus, with their training, the disabled
individuals can succeed and shine in any desired platform.

Special Educators
Teachers with a degree in special education are trained to work with
children with special needs. There are even specializations within the field of
special education for specific disabilities like learning disabilities. Special
educators are trained to design IEPs, conduct informal assessments, identify
children with disabilities, design intervention and deliver the remedial
programme to the children. Schools may employ special educators, or they may
work privately to help support children with disabilities.

Role of the Special Education Teacher

 Instruct students in the development of skills and knowledge that enables
them to participate independently to the highest degree possible, based on
assessment needs
 Provide consultation and support services including in-service training to
regular & special education teachers, school personnel, and peers concerning
Adapted Physical Education needs and appropriate methods of adaptation for
the student that will foster maximum independence and safety
 Works with members of the IEP team (i.e. parents, classroom teachers,
speech providers, occupational & physical therapists, orientation & mobility and
vision specialists) to provide a functional and meaningful program
 Create a program geared to the assessed needs, goal & objectives,
functional levels and motivational levels of the student
 Prepare and utilize equipment and materials for the development of skill
as it is related to Adapted Physical Education (i.e. beeper balls. sponge balls,
batting tees, etc.)
 Conduct assessment which focuses on both long and short-term needs of
the student
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Early childhood education
Early Childhood Education or ECE, as it is commonly known, is a stream of
education which relates to the formal and informal teaching of children from
birth up to the age of eight. This particular field of study originated in European
countries and has since gained a lot of popularity. It has now become a norm in
most developed and developing countries.

A child Benefits of early childhood education

In order to provide a child with an environment that is supportive, as well
as nurturing, it is very important that we understand how crucial these early
years are and how we as parents and educators can contribute to making it
intellectually stimulating. The power of early year education is immense with a
plethora of benefits such as better social skills, increased confidence levels,
greater coordination, creativity and increased confidence levels.
4.5 Models of early intervention-(home-based, centre-based, hospital-
based, combination) with reference to transition from home to school;

In the field of disability, early intervention refers to planned and organized

efforts to enhance the development of children, who have a disability or who are
at risk of developing it. Typically, early intervention programmes focus on
children from birth to six years of age.
The aim of early intervention is to provide the child with an environment
that fosters his development in all areas; including language, cognitive (mental),
behavioral, social and emotional. Thus, the objective is to minimize the negative
impact of the impairment or the disabling condition on the overall development
of the child, and the inter-relationships within the family. Early intervention thus
involves:
(i) Providing appropriate stimulation to the child with disability and carrying
out individualized educational and therapeutic activities, and
(ii) Providing necessary support, guidance, and training to the family.
There are different ways in which early intervention services can be provided.
The services can be direct or indirect. When the services are provided by the
professional or early intervention team member(s) directly to the child, they are
called direct services. When they are provided to the parents or caregivers, who
in turn work with the child, they are called indirect services. The services can be
provided in the home setting, in a center, or by adopting an approach that
combines the two.

80
Home-based Intervention
This is a common method of providing intervention - the services are
provided to the child and the family members at home. The professional
intervener visits the house of the child with, interacts with the family members,
and observes their routine, practices, cultural and social activities. She/he
estimates the available resources in terms of family members, finances, and
materials. This helps the professional to understand the background of the child
with disability and his family. Also to find out the strengths and needs of the
child. If the child needs any medical help, she helps to arrange for it. Her home
visit may have been a referral from the Primary Health, Centre, where the child's
medical needs are being taken care of. In such cases, the home intervener helps
to ensure follow-up of medical requirements, such as taking medicines on time.
She also guides the family in getting the child's hearing loss assessed, and in the
procurement of appropriate hearing aids. She evaluates the child to determine
what skills and abilities he already has, and which the ones that he is ready to
acquire are.
After understanding the family and its environment, assessing the child,
and ensuring medical intervention (if needed) and the acquisition of suitable
hearing aids, the home trainer focuses on the training aspect. She works with the
parents to prioritize the training needs, and to plan the required training
activities. Further, she demonstrates to the parents and other family members
how to carry out the programme suited to the child's needs.
Having taught the parents how to do the various training activities with
the child, the trainer makes periodic visits to the house in order to monitor the
progress of the child and to help the parents with any problem. These visits could
vary from one to three times a week, depending on the need of the family as well
as mutual convenience. She also maintains a record, in simple form, of her
assessment of the child, his progress, and the present activities being carried out.
Thus in the home-based intervention model, the parents become the child's
primary teachers. This type of programme demands much of I parental time,
dedication and motivation. Therefore, it is important for the home trainer to
identify at least one other person at home, apart from the mother (for example
the grandfather or aunt) who can give training to the child. Ideally, all family
members should be involved and sensitized. Even brothers and sisters can be
trained to give home-based training to the hearing impaired child. The siblings
can be taught play way methods of providing stimulation to the child - they often
do it more effectively than an adult!

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Centre-based Intervention
This is a system where the parents take the child to a Centre for children
with disability, where training is provided to the child and often, to the parents
as well. At the center, a group of experts, including a doctor, audiologist, social
worker, special educator, speech therapist, occupational therapist, and so on,
attend to the child and train the parents and other caregivers to carry out tasks
at home to foster the development of the child. These types of services are
essential for children with multiple handicaps, for instance the deaf-blind, or
deaf and mentally challenged, or deaf with cerebral palsy etc.
There are three ways in which the expert team at the Centre may interact
with -the parents and the child:
Each member of the expert team meets the parents and the child, and
provides intervention.
The team of experts, collectively, attends to the child and the family and
provides intervention.
All experts meet and discuss the child's case and one team member
receives information and guidance from all of them and in turn interacts with
the child and the family.
Any of these three ways of functioning or a combination can be found at a
Centre. Each of these ways of functioning of the professional team at the Centre
has its own strengths and limitations.

Combined Model
The combined model is, as the name suggests, a combination of home-
based and Centre-based intervention strategies.
Under this model, the parent and the child receive a combination of
services. That is, the child visits the centre periodically, say once a month. During
the other days, the home trainer, who is the link between the centre and the
family, visits the child at home once every 2-3 days and provides services. Thus,
the child receives both kinds of services - home-based and centre-based.
Depending on the location of the centre, residence 01 the child, availability
of resources, practical conven;c.nce, needs of the child and availability of
services, a parent can choose the combined programme - if it is available! This
will have the advantages of both home-based and centre-based programmes.

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 Unit 5: Human Resource in Disability
Sector

5.1 Human resource development in disability sector – Current

status, Needs, Issues and the importance of working within an ethical
framework;
5.2 Role of international bodies (International Disability Alliance
(IDA) UNESCO, UNICEF UNDP, WHO) in Disability Rehabilitation
Services;
5.3 International conventions and Policies such as UNCRPD, MDGs and
SDGs;
5.4 Role of National Institutes (AYJNISLD, ISLRTC, NIEPID, NIEPMD,
NIEPVD, NILD, NIMHR, PDUNIPPD, SVNIRTAR) in Disability
Rehabilitation Services;
5.5 Role of Information and Communication Technology (ICT) in
disability inclusive services and development programs;

83
5.1 Human resource development in disability sector – Current
status, Needs, Issues and the importance of working within an ethical
framework;
Organizations are increasingly aware that a better vocational inclusion
of persons with disabilities (PWD) is in their self-interest for reasons such as a
shortage of skilled labor, an increasing prevalence of disability in their aging
workforces, and changed societal attitudes and laws regarding the promotion
of diversity and equity in the workplace. Human resource (HR) practices have
been identified as a primary enabler of inclusion, yet research on disability-
related HR Management is scattered across disciplines.
Among the other factors of production, labour i.e. human resource is the
most important factor. Every organization depends not so much on either
material or financial resources, but it mainly depends on the able and willing
human resource for its growth and success. When the human resource are
motivated to use their talents for creating new ideas, then there is no limit to
what the people can accomplish. No other resource can do what a human
resource do. All the other resources are inanimate and cannot act in the way
how the human resource reacts. Compared to other resources, only human
resource can help the organization to attain sustained competitive advantages.
Moreover, human resources appreciate in value by increasing experience and
skills but other resources generally depreciate as the time goes on.

Human Resource development and Disability

Disability rehabilitation in India has a long past but a short scientific
history. Groups and individuals initiated for betterment and improvement of
the disabled person but unfortunately these efforts were individualistic and
perhaps unorganized and ad-hoc in nature though they were committed to
improve the condition of disabled persons. There was little concern for
systematic and scientific efforts in this direction. Systematic efforts has started
as of IYDP 1981.
Disability though to a large extent inherited, environment has a
substantial role to play in growth and development. One can visualize
disability Rehabilitation and HRD

84
The following model would explain the range of activities in relation to Human
Resource

5.2 Role of International bodies (International Disability Alliance

(IDA) UNESCO, UNICEF UNDP, WHO) in Disability Rehabilitation Services

The UN Declaration on the Rights of Mentally Retarded Persons6 and the

Declaration on the Rights of Disabled Persons, adopted in the 1970s, were the
first international instruments to set forth human rights principles relating
specifically to persons with disabilities. The adoption of these instruments
represented, at the time, progress in terms of situating disability rights on the
international agenda. Nonetheless, these documents were soon seen as
outdated by the disability community for their approach to disability as they
reflected medical and charity models of disability which served to reinforce
paternalistic attitudes (Oliver 1996). Progressively, the disability community

85
supported a social model of disability, which offered a fundamental conceptual
shift “away from focusing on the physical limitations of particular individuals
to the way the physical and social environments impose limitations on certain
groups or categories of people”.
On December 19, 2001, the UN General Assembly, with resolution
56/168, established an Ad Hoc Committee "to consider proposals for a
comprehensive and integral international convention to promote and protect
the rights and dignity of persons with disabilities, based on the holistic
approach in the work done in the fields of social development, human rights
and non-discrimination and taking into account the recommendations of the
Commission on Human Rights and the Commission for Social Development."
The CRPD expressly recognizes that international cooperation supports
national efforts to effectively implement States Parties’ obligations. States
Parties are to cooperate internationally through partnerships with other
States, and/or with relevant international and regional organizations and civil
society in support of national measures to give effect to the CRPD. Specifically,
Article 32 identifies a range of measures that States can take within the
framework of international cooperation which include inter alia: (1) “capacity
building, including through the exchange and sharing of information,
experiences, training programs and best-practices”; (2) research programs
and the facilitation of access to scientific knowledge; and (3) technical and
economic assistance, including the facilitation of access to accessible and
assistive technologies. In addition, Article 32 also states “that international
cooperation, including international development programmes, is inclusive of
and accessible to persons with disabilities,” thus Article 32 has important
provisions not only for State Parties, but also for bilateral and multilateral
development partners.
· Working with the private sector and funding institutions to influence their
policies and practices to include issues of disabilities and other development
issues, specially the issues of women and children.
· Working with UN and other international bodies for regular updates from
all over the World.
· Signing and ratification of different UN treaty and policy formulation to
fulfill that obligations. The policies should govern the various laws and
programmes. The proper budget allocation for implementation of those
programmes.
· Formulation of rules and provisions for the Corporate and private sector
to motivate them to join hands with the Govt. and NGOs for the development
of the nation through a right based model.
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International Disability Alliance (IDA)
The International Disability Alliance is an alliance of eight global and six
regional organizations of persons with disabilities. They advocate at the
UN for a more inclusive global environment for persons with disabilities and
their organizations. The Convention on the Rights of Persons with
Disabilities (CRPD) is their touchstone. They are invested in ensuring that
the 2030 Agenda and the Sustainable Development Goals are inclusive and in
line with CRPD. They support organizations of persons with disabilities
worldwide to take part in UN and international human rights processes, and
use international accountability mechanisms.
With member organizations globally, IDA represents the estimated one
billion people worldwide with disabilities. This is the world’s largest and most
frequently overlooked marginalized group. IDA, with its unique composition
as a network of the foremost international disability rights organizations, is
the most authoritative representation of persons with disabilities on the global
level, and acknowledged as such by the United Nations system both in New
York and Geneva.
The cornerstone of their work is the United Nations Convention on the
Rights of Persons with Disabilities (UN CRPD). They promote the effective and
full implementation of the UN CRPD, and compliance by governments and the
UN System, through the active and coordinated involvement of representative
organizations of persons with disabilities at the national, regional and
international levels. The 2030 Agenda and its Sustainable Development Goals
are also integral to IDA's work to promote inclusive, sustainable development
in line with the UN CRPD and the rights of persons with disabilities.
Their Principles
 - to respect the sovereignty of all member organizations and recognize
their expertise on issues affecting their own constituency;
 - to promote the capacity of its member organizations in the interest of
their disability constituencies;
 - to follow democratic governance ensuring transparency, accountability
and full consultation with its member organizations;
 - to promote solidarity among and equal treatment of all disability
constituencies in all regions of the world;
 - to fully respect in all of its work non-discrimination on any grounds
including disability, race, gender, religion, age, language, ethnic origin, and
sexual orientation; and,
 - to ensure the leadership of persons with disabilities through their
representative organizations in all decisions affecting their lives;
UNESCO
Persons with disabilities are more likely to be out of school or to leave
school before completing primary or secondary education.
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 Article 24 of the UN Convention on the Rights of Persons with
Disabilities stipulate that countries must take steps to ensure that persons
with disabilities access an inclusive, quality and free primary and secondary
education on an equal basis with others in the communities in which they live.
Through a rights-based approach, UNESCO encourages the development and
implementation of inclusive education policies, programmes and practices to
ensure equal education opportunities for persons with disabilities.
UNESCO promotes effective practices and knowledge
sharing through various platforms, such as the Inclusive education in action:
Empowering teachers, empowering learners’ website, developed in
cooperation with the European Agency for Special Needs and Inclusive
Education and the online Knowledge Community on ‘Building Inclusive
Societies for Persons with Disabilities’.
UNESCO supports countries in their efforts towards the inclusion of
children with diverse learning challenges and children with disabilities in
education through the development of guidelines and tools, teacher training
and the use of ICTs in education.
Advocacy and awareness raising are another area of UNESCO’s actions
to ensure the fulfillment of the right to education for persons with disabilities.
This includes celebration of the International Day of Persons with Disabilities,
on 3 December.
UNESCO’s actions are carried out with key partners and networks, such
as the Global Partnership for Children with Disabilities, co-led with UNICEF
and Leonard Cheshire Disability, an international NGO in official partnership
with UNESCO.
UN Children's Fund (UNICEF)
UNICEF is the driving force that helps build a world where the rights of
every child are realized. UNICEF was created with the purpose to work with
others to overcome the obstacles that poverty, violence, disease and
discrimination place in a child’s path.
INDIA has established a very close relationship with UNICEF, in
particular following the appointment of a Senior Disability Advisor.
United Nations Development Programme
UNDP recognizes the centrality of human rights to sustainable
development, poverty alleviation and ensuring a fair distribution of
development opportunities and benefits. UNDP is committed to supporting
universal respect for, and observance of, human rights and fundamental
freedoms for all. UNDP’s Strategic Plan, 2018 – 2021, aims to support
countries in addressing development challenges and recognizes that a set of
core development needs underpin those challenges including the need to
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strengthen gender equality and the empowerment of women and girls, and to
ensure the protection of human rights.
As the development branch of the UN system, UNDP supports member
states as they seek to achieve the SDGs by 2030 and fulfil their human rights
obligations under the Convention on the Rights of Persons with Disabilities
(CRPD); we do so through a human rights-based approach to our
programming. The CRPD and the SDGs are the twin frameworks which are
mutually reinforcing and within which UNDP supports disability inclusive
development.
WHO
To improve access to and coverage of health services for people with
disability, WHO:
 guides and supports Member States to increase awareness of disability
issues, and promotes the inclusion of disability as a component in national and
sub-national health programmes;
 facilitates collection and dissemination of disability-related data and
information;
 develops normative tools, including guidelines to strengthen disability
inclusion within health care services;
 builds capacity among health policymakers and service providers;
 promotes strategies to ensure that people with disability are
knowledgeable about their own health conditions, and that health care
personnel support and protect the rights and dignity of persons with
disability;
 contributes to the United Nations Disability Inclusion Strategy (UNDIS)
to promote “sustainable and transformative progress on disability inclusion
through all pillars of work of the United Nations”; and
 provides Member States and development partners with updated
evidence, analysis and recommendations related to disability inclusion in the
health sector.

5.3 International conventions and Policies such as UNCRPD, MDGs and

SDGs
UN Convention on the Rights of Persons with Disabilities
The United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD) is an international treaty which identifies the rights of
disabled people as well as the obligations on Parliament and the NI
Assembly to promote, protect and ensure those rights. It aims to ensure that
disabled people enjoy the same human rights as everyone else and that they
can participate fully in society by receiving the same opportunities as others.
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 By ratifying the UN Convention in 2009, the UK is committed to
promoting and protecting the full enjoyment of human rights by disabled
people and ensuring they have full equality under the law. The Convention
covers a wide range of areas including:
· Health
· Education
· Employment
· Access to justice
· Personal security
· Independent living, and
· Access to information.

Millennium Development Goals

The eight Millennium Development Goals (MDGs) – which ranged from
halving extreme poverty to halting the spread of HIV/AIDS and providing
universal primary education, all by the target date of 2015 – formed a
blueprint agreed to by all the world’s countries and all the world’s leading
development institutions. They have galvanized unprecedented efforts to meet
the needs of the world’s poorest. However, approximately 426 million people
with disabilities in developing countries live below the poverty line. Lack of
access and inclusion for persons with disabilities in policies and programmes
aimed at achieving the MDGs means that the achievement of the MDGs is
impossible.
However, a key failure of the MDGs has been the exclusion of disability
issues and disabled people in the process. Ten percent of the global population
is disabled (WHO) and yet not one of the MDG indicators addresses the rights
and needs of disabled people. The impact of this exclusion is considerable:
- Only one to two percent of disabled children in developing countries go to
school (UNESCO)
- Eighty two percent of disabled people live below the poverty line (World
Bank)
The MDGs will not be achieved unless the rights of disabled people are
comprehensively mainstreamed in all development action - with disabled
people involved in decision-making at all levels.
The United Nations Sustainable Development Goals
The CRPD significantly altered the environment, the expectations and
the participation of persons with disabilities in the creation of the 2030
Agenda, and its 17 Sustainable Development Goals, a universal commitment
by all UN Member States.
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 The 2030 Agenda and CRPD should be used together: in order to
implement sustainable development in any given country, it will also need to
implement the CRPD. Through the implementation of the 2030 Agenda, more
resources and data will be available for implementation of the CRPD. It is up to
DPOs and their partners, including governments, to provide this connection
and synergy between the two instruments for the benefit of the rights of
persons with disabilities.
‘Leave no one behind’ is the overarching principle of the Sustainable
Development Goals. All the targets of the 2030 Agenda are universal i.e. they
include everybody without an exception. UN Convention on the Rights of
Persons with Disabilities (CRPD) is one of the guiding frameworks for the
implementation of SDGs thus ensuring inclusion and equal participation of
PwDs. These global goals have opened doors of opportunities, participation
and recognition for persons with physical and intellectual disabilities.

5.4 Role of National Institutes (AYJNISLD, ISLRTC, NIEPID, NIEPMD,

NIEPVD, NILD, NIMHR, PDUNIPPD, SVNIRTAR) in Disability
Rehabilitation Services

Objectives of National Institutes

National Institutes are engaged in Human Resource Development in the
field of disability, providing rehabilitation services to the Persons with
Disabilities and undertaking Research and Development efforts. National
Institutes also provide vocational skill training, placement and distribution of
assistive aids and appliances to PwDs.
There are nine National Institutes under this Ministry working in the
field of disability. National Institutes are autonomous bodies established for
different types of disabilities. These institutes are engaged in Human
Resources Development in the field of disability, providing rehabilitation
services to the persons with disabilities and Research and Development
efforts:-
(i) National Institute for the Empowerment of Persons with Visual
Disabilities (NIEPVD), Dehradun: The government of India provides numerous
support for the empowerment of PWD. Hence the government is giving the
special attention for the people with visual disabilities including the braille
system in educational sector, employment opportunities and so on. The
National institute for the empowerment of person with visual disability
(NIEPVD) is one of the major organization launched by the government of
India for the People with Visual Disability (PVD). This organization is giving a
handholding support, rehabilitation services, Educational services, creating
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employment opportunities, medical services and so on. NIEPVD taking the
major role in providing special education courses, research development,
application technology and so on. Their important responsibilities are make
them to educate and to learn the braille system, manufacturing braille
appliances, providing skill development activities for the VD.
(ii) Ali Yavar Jung National Institute of Speech and Hearing Disabilities
(AYJNISHD), Mumbai
(iii) National Institute for the Empowerment of Persons with Intellectual
Disabilities (NIEPID), Secunderabad
(iv) National Institute for Empowerment of Persons with Multiple
Disabilities (NIEPMD), Chennai
(v) Pt. Deendayal Upadhyaya National Institute for Persons with Physical
Disabilities (PDUNIPPD), Delhi
(vi) Swami Vivekanand National Institute of the Rehabilitation Training and
Research (SVNIRTAR), Cuttack.
(vii) National Institute for Locomotor Disabilities (NILD), Kolkata
(viii) Indian Sign Langauge Research & Training Centre (ISLRTC), New Delhi
(ix) National Institute of Mental Health and Rehabilitation (NIMHR), Sehore,
Madhya Pradesh
The Persons with Multiple Disabilities have equal rights to lead a better
quality of life. This may be enabled with committed professionalism, accessible
environment, equal opportunities, positive attitudes and appropriate,
affordable, acceptable and available technological interventions.
The mission is to provide need based comprehensive rehabilitation
through team approach facilitating inclusion, ensuring empowerment of
persons with Multiple Disabilities and their families and by substantiating field
based research and development of human resources.
To meet the requirements of specific disabilities, Govt. of India has
established 7 National Institutes in specific disabilities under the Department.
These are engaged in Human Resource Development, providing Rehabilitation
Services to the persons with disabilities and Research & Development. These
Institutes are engaged in Human Resource Development in the field of
disability, providing rehabilitation services to the Persons with Disabilities
and undertaking Research and Development efforts.

5.5 Role of Information and Communication Technology (ICT) in

disability inclusive services and development programs

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 In an increasingly digital age, information and communication
technologies (ICTs) offer new ways of meeting this commitment towards those
members of our society who have disabilities. While there have been great
advances in the development of specialized assistive technology, such as
microprocessor-controlled prosthetics or digital hearing aids, more general-
purpose technologies, such as ordinary computers, tablets and smartphones,
offer significant opportunities for broader social and economic inclusion of
persons with disabilities. Real-life examples include:
 A person is blind that now pays their bills online.
 A wheelchair user who is able to use the internet to access training at a
tertiary learning institution.
 A person who has lost the use of their limbs, but carries out the day-to-
day business of an organization by accessing a computer using voice-
recognition software.
 A blind person who reads printed paper documents by using the camera,
audio and text-recognition capabilities of a smart phone.
 A person who is deaf who uses closed-captioned YouTube videos to
learn new skills.
All of these examples show that the ICTs in widespread use today can
make a significant difference in the lives of persons with disabilities.
Unfortunately, their use of ICTs can be limited by their lack of access to
technology. Barriers to access can include a lack of awareness of available
technologies and of what can be achieved through their use, a lack of available
training in their adaptive use, and a lack of financial resources to purchase the
hardware, software, network connectivity and specialized support equipment
that may be necessary. Thus, there is a need for initiatives that build
awareness, expand digital literacy, finance the acquisition of devices and
software, and provide technical support for the use of ICTs among the
disabled.
Both governments and private institutions have a responsibility to
ensure that the means through which they digitally interface with the public –
such as websites, apps, and electronic kiosks – can be used by those who are
visually or mobility impaired. Sadly, this is not universally the case; in the
Caribbean, even many government web portals fail to meet this standard.
Clearly, ICT specialists are in need of training to ensure that the systems they
build and services they provide are compliant with established accessibility
guidelines for digital content.
Implementing programmes to meet these challenges costs money.
Unfortunately, funds to support access for those with disabilities are often not
prioritized in national budgets to the extent that they are needed. However,
most Caribbean countries now have Universal Service Funds (USFs) - paid for
out of a surtax on telecommunications services - which offer a potential
vehicle to fund initiatives for expanding access to technology among persons
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with disabilities. Indeed, USF-funded projects in Jamaica and Saint Lucia,
among others, have provided important means of reducing barriers to ICT
access for the disabled, such as through the distribution of laptops or through
financial assistance to ICT-based initiatives spearheaded by disability support
organizations. In many cases, however, these funds have been underutilized.
There is a need to alert organizations that support persons with disabilities to
the potential availability of USF funding for ICT-related projects, and to help
them clear any regulatory, compliance, or organizational difficulties associated
with making use of these resources.

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