Children with disabilities: concept of disability, definitions, categories, causes, rights, health and community care, prevention, community-based rehabilitation.

1. Prof. Dr. Soha Rashed

2. What is disability?
and who are people with
disabilities?

3. The Convention on the Rights of
Persons with Disabilities (UN, 2006)
describes people with disabilities as
“…those who have long-term physical, mental,
intellectual or sensory impairments which, in
interaction with various barriers, may hinder
their full and effective participation in society
on an equal basis with others”.

4. Disability
Evolution of the concept. To understand how disability is
currently viewed, it is helpful to look at the way the concept of
disability has evolved over time.
Historically, disability was largely understood in mythological or
religious terms,
e.g. people with disabilities were considered to be possessed by
devils or spirits; disability was also often seen as a punishment
for past wrongdoing. These views are still present today in many
traditional societies.

5. Evolution of the concept (Cont.)
In the 19th and 20th centuries, developments in science
and medicine helped to create an understanding that:
disability has a biological or
medical basis, with impairments in
body function and structure being
associated with different health
conditions.
This medical model views disability
as a problem of the individual, and
is primarily focused on cure and the
provision of medical care by
professionals.

6. Biological/medical perspective
Disability has been classified by the WHO as part of a
continuum of stages of disease impact that include:
Disease consequences

7. Examples
Impairment
(Abnormal organ
function)
Disability
(Activity
Limitations)
Handicap
(Participation
Restrictions)
Cataract: Prevents the
passage of light and
sensing of form, shape,
and size of visual stimuli
Inability to read or move
around
Exclusion from school
Delayed speech-language
development
Inability to speak clearly
enough to be
understood
Defective communication
with others
Motor deficits,
imbalance, joint
stiffness
Inability to perform
activities of daily living
such as dressing,
feeding, walking
Dependence, immobility

8. Evolution of the concept (Cont.)
Later, in the 1960s and 1970s, the individual and medical view
of disability was challenged, and a range of social approaches
were developed, e.g. the social model of disability.
These approaches shifted attention away from the medical
aspects of disability and instead focused on the social barriers
and discrimination that people with disabilities face.
Disability was redefined as a societal problem rather than an
individual problem, and solutions became focused on
removing barriers and social change, not just medical cure.

9. Current definitions
• International Classification of Functioning, Disability and
Health (ICF), which states that disability is an “umbrella term
for impairments, activity limitations or participation
restrictions” , which result from the interaction between the
person with a health condition and environmental factors
(e.g. the physical environment, attitudes), and personal
factors (e.g. age, gender and coping mechanism).
• Convention on the Rights of Persons with Disabilities, which
states that disability is an evolving concept and “results from
the interaction between persons with impairments and
attitudinal and environmental barriers that hinders their full
and effective participation in society on an equal basis with
others”.

10. People’s experiences of disability are
extremely varied
There are different kinds of impairments, and people
are affected in different ways:
 Some people have one impairment, others multiple
 Some are born with an impairment
 While others may acquire an impairment during the course of their
life.
For example,
– a child born with a congenital condition, such as cerebral palsy
– a young soldier who loses his leg to a landmine
– a middle-aged woman who develops diabetes and loses her
vision
– an older person with dementia

11. May all be described as people
who have disabilities

12. Global statistics about people with
disabilities
• Approximately 10% of the world’s population lives with a disability.
• An estimated 80% of people with disabilities live in developing
countries.
• An estimated 15-20% of the world’s poorest people are disabled.
• No rehabilitation services are available to people with disabilities in
developing countries.
• Only 5-15% of people with disabilities can access assistive devices
in the developing world.
• Children with disabilities are much less likely to attend school than
others.
• People with disabilities tend to experience higher unemployment
and have lower earnings than people without disabilities .

13. Global trends
Globally, the most common causes of disability include:
 chronic diseases (e.g. diabetes, cardiovascular disease and cancer);
 injuries (e.g. due to road traffic accidents, conflicts, falls and landmines);
 mental health problems;
 birth defects;
 malnutrition; and
 HIV/AIDS and other communicable diseases.

14. Global trends (Cont.)
It is very difficult to estimate the exact number of people
living with disabilities throughout the world, however the
number is increasing due to factors such as:
 population growth,
 increase in chronic health conditions,
 the ageing of populations, and
 medical advances that preserve and prolong life.
Many low and middle-income countries face a double burden,
i.e. they need to address both traditional problems, such as
malnutrition and infectious diseases, and new problems, such
as chronic conditions.

15. Categories of childhood disabilities
• Some children will be born with a disabling
health condition or impairment,
• while others may experience/acquire
disability (after birth) as a result of chronic
illness, injuries, mental health problems; birth
defects; malnutrition; and communicable
diseases, etc.

16. Categories of childhood disabilities
• Physical disabilities: e.g. Traumatic Brain injury, spinal cord injury,
cerebral palsy, epilepsy, neural tube defects, muscular dystrophy,
poliomyelitis, congenital or acquired musculoskeletal deformities
• Cognitive/Intellectual disabilities: e.g. Mental retardation.
• Emotional/behavioral disorders: e.g., Anxiety, depression, phobias,
conduct disorders, attention deficit hyperactivity disorder (ADHD)
• Sensory disabilities:
 Visual impairment (non-correctable vision problems): e.g.
partially sighted, blind)
 Hearing impairment: e.g. partial or complete hearing loss
(deafness)
 Speech-language disorders (which have an adverse effect on the
child educational performance)

17. Categories of childhood disabilities (Cont.)
• Autism: A disorder of neural
development characterized by
impaired social interaction, verbal
and non-verbal communication, and
by restricted and repetitive
behavior.
• Specific learning disabilities:
e.g., Reading, writing, math.
• Chronic health conditions: e.g.
Asthma, TB, Juvenile DM,
Rheumatic heart disease, Congenital
heart disease, and malignancies.

18. Causes of childhood disabilities
•Prenatal causes
•Perinatal causes
•Childhood causes

19. Prenatal causes
1. Chromosomal abnormalities: e.g., Down syndrome
2. Genetic causes: e.g: Sickle cell disease.
3. Rh-incompatability: This occurs in Rh-positive father and Rh-negative
mother. The mother's blood begins to form antibodies against the
"foreign" positive Rh factor. This results in hemolysis of RBCs, that may
be limited causing only mild anemia, or excessive causing cerebral palsy,
deafness, mental retardation, heart failure or even death.
4. Maternal stress: Prolonged emotional stress during pregnancy may have
consequences on the child such as low birth weight, hyperactivity and
irritability.

20. 5. Environmental causes:
Most birth defects occur within the first trimester
of pregnancy.
• Exposure to x-ray radiation. The greater danger
for malformation comes between the 2nd and
6th weeks after conception.
• Teratogenic drugs: Teratogens are drugs
producing birth defects. These may include:
 Legal drugs (Nicotine, caffeine),
 Prescription drugs (Certain antibiotics such as
tetracycline, streptomycin, and sulfonamides,
Chemotherapy drugs, Anticonvulsant/seizure
drugs, tranquilizers and anti-anxiety drugs, Non-steroidal
anti-inflammatory,and
 Illegal drugs (Cocaine, heroin, marijuana).

21. • Teratogenic chemicals and environmental pollutants: e.g.,
Alcohol, Lead, Mercury, Arsenic, Cadmium, Pesticides and
Organic solvents
• Maternal nutrition: e.g., deficiency of folic acid is a risk
factor for having a baby with spina bifida.
• Infections contracted during pregnancy can also have a
teratogenic effect, causing a variety of birth defects. E.g.,
Rubella, chickenpox, cytomegalovirus (CMV), and various
sexually transmitted diseases (such as AIDS, Gonorrhea ,
Syphilis and Herpes) are some common examples.

22. 6. Maternal diseases and disorders during
pregnancy: Children whose mothers had severe
toxemia in pregnancy have a risk of lowered
intelligence.
7. Age of the mother: Teenage mothers have a
greater risk to have babies with low birth
weight and neurological defects. Mothers over
40 have an increased risk of having children with
chromosomal abnormality.

23. Perinatal causes
• Drugs taken during labour and delivery: e.g., some painkillers.
• Prematurity: this is more common among economically
deprived mothers. In addition, smoking, alcohol and various
drugs increase the likelihood that the baby will be premature.
• Oxygen deprivation: brain haemorrhage and failure to breathe
are the main causes of oxygen deprivation (more likely to
occur with prolonged labour and birth asphyxia) resulting in
motor deficits
• Birth injuries: e.g., brain damage, Erb's paralysis
• Neonatal infections: e.g., neonatal septicemia, neonatal
meningitis
• Congenital anomalies

25. Childhood causes
• Injuries
• Childhood infections: Postnatally acquired
meningitis and encephalitis
• Severe and prolonged malnutrition can adversely
affect both physical growth and mental
development of the child

26. • Environmental deprivation: For some children
environmental deprivation has a debilitating
effect on the development of abilities such as
language use, adaptive behavior, and cognition.
Deprivation can include poor nutrition, poor
housing, broken families, lack of social interaction
and limited opportunity for varied experiences.

28. What are the rights of children with disabilities?
• The Egyptian Convention on the Rights of the Child (CRC) applies to all
children, including children with disabilities.
• It spells out the basic human rights that children everywhere have: the
right to survival; to develop to the fullest; to protection from harmful
influences, abuse and exploitation; and to participate fully in family,
cultural and social life. It also recognizes the importance of family
assistance and support.
• Protection from discrimination and provision of adequate targeted
services (by national parties) are additional rights specified for children
with disabilities.

31. What factors affect child
development?
Children’s development is influenced by a wide
range of biological and environmental factors,
some of which protect and enhance their
development, while others compromise their
developmental outcomes.
Threats/dangers facing disabled children.
Children who experience disability early in life can
be disproportionately exposed to risk factors such
as:

32. poverty; stigma and discrimination; poor caregiver
interaction; institutionalization; violence, abuse and
neglect; and limited access to programmes and services,
all of which can have a significant effect on their survival
and development.

33. Why support the development of
children with disabilities?
Evidence-based research and multi-country experiences make a strong rationale for
investing in Early Childhood Development (ECD), especially for children at risk of
developmental delay or with a disability.
Human rights rationale: all children with disabilities have the right to develop “to the
maximum extent possible”. These instruments recognize the importance of focusing
not only on the child’s health condition or impairment, but also on the influence of
the environment as the cause of underdevelopment and exclusion.
Economic rationale: Children with disabilities who receive good care and
developmental opportunities during early childhood are more likely to become
healthy and productive adults. This can potentially reduce the future costs of
education, medical care and other social spending.

34. Why support the development of
children with disabilities?
Scientific rationale: The first three years of a child’s life are a critical period. They are
characterized by rapid development particularly of the brain and thus provide the
essential building blocks for future growth, development and progress. If children with
disabilities are to survive, flourish, learn, and be empowered and participate, attention
to ECD is essential.
Programmatic rationale: ECD programmes can lead to improved rates of survival,
growth and development; and ensure later education programmes are more effective.
Well-organized inclusive ECD programmes for young children with disabilities can
provide parents with more time to engage in productive work and enable girls and
boys with disabilities to attend school.
Approaches combining centre-based programmes and parenting interventions,
including home visiting programmes, may help parents and professionals to detect
developmental delays early, improve children’s development, prevent abuse and
neglect, and ensure school readiness.

35. How can we support the development
of children with disabilities?
Promoting development in young children
with disabilities requires a twin-track
approach.
This approach recognizes that:
 children with disabilities and their families have ordinary
needs and must have access to mainstream programmes and
services such as health care, child care and education, and
 also may need access to targeted services such as ECI.
Building on existing health and education service structures for all children is essential,
avoiding as much as possible the organization of separate and/or parallel services.

36. Early Childhood Intervention (ECI)
ECI programmes are designed to support young children
who are at risk of developmental delay, or young
children who have been identified as having
developmental delays or disabilities.
ECI comprises a range of services and supports to:
 ensure and enhance children’s personal development
and resilience,
 strengthen family competencies, and
 promote the social inclusion of families and children.

37. Early Childhood Intervention (ECI)
Examples include specialized services such as:
 medical
 rehabilitation (e.g. therapy and assistive devices)
 family-focused support (e.g. training and counselling)
 social and psychological
 special education
Along with:
 service planning and coordination
 assistance and support to access mainstream services such as preschool
and child-care (e.g. referral)
Settings. Services can be delivered through a variety of settings including:
 primary health-care clinics (MCH, Family health units/centres)
 hospitals
 early intervention centres
 rehabilitation centres
 community centres
 Homes
 schools

38. Early Childhood Intervention (ECI)
A comprehensive approach is required for appropriate care and support including:
early identification; assessment and early intervention planning; provision of services;
and monitoring and evaluation.
A life-cycle approach to programming provides a helpful framework to identify priority
and sustainable interventions during the early childhood stage and to ensure a
continuum of quality care, health services, protection and education as a child
transitions from birth into and through the first grades of primary school.
In addition, the life-cycle approach provides the foundation for organizing the roles
and responsibilities of each sector in support of children and their families, aimed at
guaranteeing a more holistic assistance plan while reducing potential duplication of
services.
A wide range of sectors should be involved in and share responsibility for identifying
children with disabilities, providing ECI services and guaranteeing support for their
families.

39. • Community-based rehabilitation (CBR) has also been
one of the major approaches to addressing the needs
of children with disabilities.
This approach empowers children and their families by
bringing together communities and government and
non-government health, education, vocational, social
and other services.
Further efforts should be made to ensure community-based
approaches become an integral part of national
health and education systems, policies and services.

41. Mission: “to empower people with disabilities,
their families and communities (regardless of
colour, faith, religion, gender, age, type and cause
of disability) through raising awareness,
promoting inclusion, reducing poverty,
eliminating stigma, meeting basic needs and
facilitating access to health, education and
livelihood opportunities”.

43. Five components of CBR
A broader multi-sectoral development strategy

45. The key activities of the CBR programme
include:
• Training family and community members on disability
and CBR using the WHO CBR training manual as a guide
• Providing educational assistance and facilitating
inclusive education through capacity building with
teaching staff and students, and improving physical
access
• Referring people with disabilities to specialist services,
e.g. surgical and rehabilitation services, where
physiotherapists, speech therapists and occupational
therapists are available

46. The key activities of the CBR
programme (Cont.)
• Providing assistive devices, e.g. walking sticks, crutches,
wheelchairs, hearing aids, glasses
• Creating employment opportunities by providing access to
training, job coaching and financial support for income-generation
activities
• Providing support for social activities including sports and
recreation
• Providing financial assistance for living, education and
home modifications.

51. Prevention of disability

52. Prevention of childhood Disabilities
I- Primary prevention: Identification and
preventing/minimizing the risk factors.
 Genetic counseling: Genetic screening, estimation of risk and
counseling prior to conception is important for the control of
genetically- determined disabilities.
 Premarital examination and Pre-pregnancy planning: as checking
medical conditions of women, Rh factor, infections such as venereal
diseases and rubella immunization
 Improved prenatal, natal and postnatal care.
 Pregnant woman should also maintain good physical health
throughout her pregnancy, which means eating a well-balanced
diet, exercising, and allowing herself plenty of rest.

53.  Immunization programs : e.g., poliomyelitis and meningitis
 Prevention and control of environmental pollution: to
reduce/minimize the risk of exposure to dangerous
environmental teratogens.
 While not all birth defects can be prevented, there are
precautions a woman can take to protect herself and her
baby from dangerous environmental teratogens and
reduce the risk of birth defects. Important preventative
measures include avoiding the inhalation or ingestion of
harmful chemicals or substances. Pregnant women should
specifically avoid un-prescribed medications.

54. II- Secondary prevention: Early identification and intervention
Some health conditions associated with disability may be detected during pregnancy
where there is access to prenatal screening, while other impairments may be
identified during or after birth. e.g., Neonatal screening for congenital hypothyroidism
(carried out on the 3rd day after delivery). Specific treatment is given for positive
cases to prevent mental retardation.
Screening or surveillance of children’s development may take place during visits to
child health-care facilities (e.g., MCH centres and Family health units/centres);
there may be targeted early identification procedures in place, such as screening for
visual and hearing impairments in health-care or education settings; and public
health activities, such as immunization campaigns, may also provide opportunities for
early identification.
Some families may also become concerned about their child’s development if there
are delays in the achievement of key developmental milestones such as sitting,
walking or talking.

55. III- Tertiary prevention: Rehabilitation
Limiting or reducing the effects of the disability (that is already present), and
preventing its development into a handicap.
Main aims are:
- To increase awareness of disabilities and the needs of disabled children
- To stimulate a more understanding and supportive attitudes (at both family and
community levels)
- To support and maximize their development potential (optimize their functioning).
- To reduce burden on family/care-givers
- To encourage the full integration of disabled individuals in society
Rehabilitative (Specialized/Targeted) services may include: medical; rehabilitation
(e.g. therapy and assistive devices); family-focused support (e.g. training and
counseling); social and psychological; and special education, along with service
planning and coordination; assistance and support to access mainstream services such
as preschool and child-care (e.g. referral).
ECI

56. AN EXAMPLE OF COGNITIVE (INTELLECTUAL) DISABILITIES
MENTAL RETARDATION
Definition. Mental retardation implies significant deficits, with onset early in life, in
intelligence (as measured by standardized intelligence tests) and in adaptive behavior
(e.g., communication, self-care, social interaction, school, and/or work).
The deficits are recognized in the performance of social roles and age-appropriate
tasks.
The infant and preschool child may fail to achieve developmental milestones of sitting,
responding to familiar faces, walking, talking, and sphincter control at expected ages.
The schoolchild falls short of social expectations for classroom behavior and for
reading, writing, and arithmetic.
The adult may have difficulty in performing work within and outside the home,
communicating, or understanding money, transport, and locality.

57. Functional limitations in mental retardation can
potentially be identified at three levels:
• Impairment: altered brain structure and/or
function,
• Disability (activity limitations): deficits in
intellectual function and adaptive behavior, and
• Handicap (participation restrictions = problems
with involvement in social roles): e.g. school
failure or poor performance at work.

58. Classification of mental retardation

60. Prevention of mental retardation
1. Genetic counseling, prenatal diagnosis, early identification, and
proper treatment are important in preventing mental retardation of
genetic origin.
2. Prevention of infections and parasitic diseases contributes
significantly to the prevention of mental retardation.
3. Monitoring the environment to protect against pollutants and other
chemical and physical hazards is an important part of prevention
programs.
4. Safe environments for young children and the prompt treatment of
injuries should reduce accidental causes of mental retardation.
5. Sound nutrition of mothers and children.

61. Prevention of mental retardation
6. Good obstetrics and good care of the newborn reduce the incidence of mental and
physical handicap.
Good care includes adequate treatment of maternal illness, such as diabetes or
toxemia; prompt recognition of obstetrical abnormalities; adequate monitoring of the
fetus; immediate resuscitation of the infant; and prediction, prevention, and
treatment of biochemical disorders, respiratory distress syndrome, hypoglycemia,
anoxia, and all causes of cerebral damage.

62. Prevention of mental retardation
7. Social and educational stimulation is essential for proper mental growth
and development. It is an important element in preventing mental
retardation, especially mild mental retardation. Suitable interventions are
needed for children whose families do not provide this stimulation.
8. In more severely retarded persons, proper stimulation, modern principles
of rehabilitation, and good remedial service can also reduce disability and
prevent the development of secondary handicaps.
9. Improving living standards and the general health of the population
constitutes an important element of nonspecific prevention of mental
retardation. Preventive programs for mental retardation should be an integral
part of all general health planning and programs.