Disability in CBR (Community-Based Rehabilitation)

1. What is CBR?

"A strategy within general community development for the rehabilitation, equalization of opportunities and social inclusion of all people with disabilities. CBR is implemented through the combined efforts of the people with disabilities themselves, their families, organizations and communities, and the relevant governmental and non-governmental health, education, vocational, social and other services."

2. Understanding "Disability" - The Conceptual Framework

A. ICIDH (1980) - The Original WHO Model

• Intrinsic - arising from within the person (e.g., blindness)
• Extrinsic - arising from the social environment (e.g., loss of parents)
• Primary - the direct handicap (e.g., blindness)
• Secondary - arising from the primary handicap (e.g., poverty resulting from blindness)

B. ICF (2001) - The Current Biopsychosocial Model Used in CBR

Two Parts of the ICF Framework

• Body Function and Structure - Describes actual anatomy, physiology, and psychology of the human body. Problems here are called impairments.
• Activity and Participation - Describes the person's functional status: communication, mobility, interpersonal interactions, self-care, learning, applying knowledge, etc. Problems here are called activity limitations and participation restrictions.

• Environmental Factors - Factors NOT within the person's control: family, workplace, government agencies, laws, cultural beliefs. These can be facilitators (help the person function) or barriers (restrict functioning).
• Personal Factors - Race, gender, age, educational level, coping styles, etc.

3. Two Models of Disability Underlying CBR Philosophy

4. Classification of Disability in CBR

A. Physical Disability (Physically Handicapped)

• Blind or visually impaired
• Deaf and/or mute
• Those with congenital deformities (hare-lip, cleft palate, talipes)
• "Crippled" due to: poliomyelitis, cerebral palsy, congenital heart disease, road accidents, burns, injuries

1. Birth defects - preventable through adequate prenatal/natal/postnatal services and genetic counselling
2. Infections - e.g., polio (preventable by immunization), rubella
3. Accidents - preventable through safety education

B. Mental Disability (Mentally Handicapped)

• Genetic: Down's syndrome, Klinefelter syndrome, PKU, Tay-Sachs disease, galactosaemia, microcephaly, congenital hypothyroidism
• Antenatal: neural tube defects, Rh incompatibility, rubella, CMV, toxoplasmosis, syphilis, drugs, irradiation
• Perinatal: birth injuries, hypoxia, cerebral palsy
• Postnatal: head injuries, encephalitis, lead/mercury poisoning
• Miscellaneous: maternal malnutrition, iodine deficiency, consanguineous marriages, late-age pregnancy

C. Social Disability (Socially Handicapped)

• Parental inadequacy
• Environmental deprivation (lack of stimulation/learning)
• Emotional disturbances
• Orphaned, neglected, or destitute status
• Exploitation or delinquency

5. Magnitude of Disability - Global and Indian Context

• At least 10% of the world's population lives with a disability, the majority in developing countries in conditions of poverty
• Nearly 83 million people globally are estimated to be mentally retarded
• 42 million people have hearing loss (41 dB and above) - 3rd leading cause of disability
• Disability from poliomyelitis has affected about 10 million globally
• In India: approximately 16.15 million persons (1.9% of population) have physical disability; about 3% of 1-14 year age group has developmental delays

6. Prevention of Disability in CBR - Three Levels

Primary Prevention (Prevent the handicap from occurring)

• Genetic counselling (optimal maternal age 20-30 years; avoid consanguineous marriages)
• At-risk approach (identify those at risk of transmitting inherited diseases)
• Immunization - polio is the main cause of disability in India; prevent with OPV
• Proper maternal nutrition to reduce prematurity
• Prenatal care, avoiding teratogenic drugs/X-rays/smoking
• Medical Termination of Pregnancy Act (1971) allows abortion of severely handicapped foetuses

Secondary Prevention (Early diagnosis + treatment)

• Early diagnosis through MCH and School Health Services
• Treatment: physiotherapy, occupational therapy, speech therapy, prosthetics
• "Physical Medicine and Rehabilitation" - the modern term
• Vocational guidance: train the handicapped to "work with what is left"

Tertiary Prevention (Rehabilitation)

• CBR aims to restore the person to the highest possible level of functioning
• Measures are medical, surgical, social, educational, and vocational
• Requires coordinated efforts by Health, Education, Social Welfare departments, and voluntary organizations

7. The CBR Matrix - Five Key Domains Addressing Disability

8. ICF as a Tool in CBR Planning

1. Planning individual intervention programmes - identifying each component of a person's disability to tailor a rehabilitation plan
2. Looking at whole community issues - not just individual impairments but environmental and participation barriers
3. Monitoring and evaluation of CBR generally - standardized language for measuring outcomes
4. Motivating policies that promote inclusion of disabled people

9. Rehabilitation in CBR - A Practical Summary

• National Institute for Mentally Handicapped (NIMH), Secunderabad (1984)
• Ali Yavar Jung National Institute for the Hearing Handicapped, Mumbai
• National Institute for the Visually Handicapped, Dehradun
• National Institute for the Orthopaedically Handicapped, Kolkata

• Park's Textbook of Preventive and Social Medicine - WHO definition of CBR (p. 376), disability classification and ICF (pp. 674-675)
• WHO CBR Guidelines - NCBI Bookshelf
• Linking CBR, Disability and Rehabilitation (ICF Framework)

Impairment, Disability, and Handicap in CBR

The ICIDH Sequence

Disease/Injury → IMPAIRMENT → DISABILITY → HANDICAP
                  (Organ)       (Person)     (Society)

1. IMPAIRMENT

Definition (WHO - ICIDH)

"Any loss or abnormality of psychological, physiological, or anatomical structure or function."

Level: ORGAN level

Key Points:

• Includes defects or loss of a limb, organ, or other body structure
• Includes defects or loss of mental function
• It is a deviation from a biomedical standard - something is structurally or functionally wrong with the body
• Impairment can be permanent or temporary

Additional Impairment Categories:

Examples:

• Loss of a limb (arm, leg)
• Damage to the visual cortex or the eye itself → blindness
• Loss of cochlear function → deafness
• Paralysis of leg muscles after polio
• Loss of mental function after brain injury

2. DISABILITY

Definition (WHO - ICIDH)

"Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being."

Level: PERSON level

Key Points:

• Disability arises from an impairment (it is its functional consequence)
• It is assessed by comparing the person's performance to what is considered normal for a human being
• The same impairment does NOT always cause the same degree of disability - context matters
• Disability represents disturbances at the level of the person

Critical Distinction - Impairment ≠ Disability:

Loss of the fifth finger of the non-dominant hand:

• For an average person - small impairment = small disability
• For a concert pianist - same small impairment = significant disability in work activities

Examples:

• Paralysis of the legs → inability to walk (disability in mobility)
• Deafness → inability to communicate through speech in normal settings
• Blindness → inability to read standard print or navigate independently
• Cognitive impairment → inability to perform activities of daily living

3. HANDICAP

Definition (WHO - ICIDH)

"A disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, and social and cultural practice) for that individual."

Level: SOCIETY/SOCIAL ROLE level

Key Points:

• Handicap is defined by social norms - what is "normal" varies by age, sex, and cultural context
• The same disability can cause different handicaps in different societies
• It is not inherent to the person - it arises from the gap between the person's capacity and society's expectations/accommodations
• Handicap connects CBR to the social model of disability

Types of Handicap:

Examples:

• A person who is deaf (impairment) and cannot hear speech (disability) cannot get a job requiring telephone communication → handicap in the role of "worker"
• A person with paraplegia who cannot walk (disability) but lives in a city with no ramps or accessible transport → handicap in the role of "community member"
• A mentally retarded child who cannot study at a normal school → handicap in the role of "student"

Summary Comparison Table

Why the Distinction Matters in CBR

• Treating impairment alone (purely medical approach) is insufficient
• A person may have significant impairment but little disability if given the right training
• A person may have disability but face minimal handicap if society is inclusive and accessible
• Reducing handicap often requires changing the environment and social attitudes - not just treating the person

• Park's Textbook of Preventive and Social Medicine, p. 674 - ICIDH definitions and handicap types
• Murray & Nadel's Textbook of Respiratory Medicine, p. 832 - impairment vs. disability distinction and clinical examples

Causes and Consequences of Impairment, Disability, and Handicap

As per Park's Textbook of Preventive and Social Medicine

PART 1 - THE SEQUENCE (Concept of Disability)

DISEASE/INJURY → IMPAIRMENT → DISABILITY → HANDICAP

"While impairment, which is the earliest stage, has a large medical component, disability and handicap, which are later stages, have large social and environmental components in terms of dependence and social cost." (p. 55)

PART 2 - IMPAIRMENT

Definition

"Any loss or abnormality of psychological, physiological or anatomical structure or function."

• Example: loss of foot, defective vision, mental retardation

Key Properties of Impairment (Park's p. 55)

• May be visible or invisible
• May be temporary or permanent
• May be progressive or regressive
• One impairment may lead to secondary impairments - e.g., in leprosy, damage to nerves (primary impairment) → plantar ulcers (secondary impairment)

CAUSES OF IMPAIRMENT

A. Major Causes in Developing Countries (p. 55)

1. Communicable diseases (polio, leprosy, tuberculosis, measles, etc.)
2. Malnutrition (protein-energy malnutrition, iodine deficiency, vitamin A deficiency)
3. Low quality of perinatal care (birth injuries, hypoxia, prematurity)
4. Accidents (road traffic, occupational, domestic)

B. Causes of Physical Disability/Impairment (p. 674)

C. Causes of Mental Handicap/Impairment (p. 674-675)

• Down's syndrome
• Klinefelter syndrome
• Phenylketonuria (PKU)
• Tay-Sachs disease
• Galactosaemia
• Microcephaly
• Congenital hypothyroidism
• Chromosomal abnormalities (single and multiple gene action)

• Neural tube defects
• Rh incompatibility
• Infections: rubella, cytomegalovirus, toxoplasmosis, syphilis
• Drugs (teratogenic)
• Irradiation (X-rays)

• Birth injuries
• Hypoxia (oxygen deprivation during delivery)
• Cerebral palsy

• Head injuries and accidents
• Encephalitis (brain inflammation)
• Physical and chemical agents: lead poisoning, mercury poisoning

• Maternal malnutrition
• Protein-energy malnutrition (PEM)
• Iodine deficiency (endemic goitre - a major preventable cause)
• Consanguineous marriages (increases risk of recessive genetic disorders)
• Pregnancy after age 40 (late marriages) - associated with Down's syndrome and other chromosomal defects

CONSEQUENCES OF IMPAIRMENT

1. Leads directly to disability - restricts the person's ability to perform activities
2. Secondary impairments - one impairment generates further impairments (e.g., leprosy nerve damage → plantar ulcers → further tissue loss)
3. Progression - impairment can be progressive, leading to worsening disability over time
4. Need for medical intervention - impairment stage has the largest medical component and is the most amenable to medical treatment

PART 3 - DISABILITY

Definition

"Any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being."

CAUSES OF DISABILITY

1. Late presentation - when a patient reports late in the pathogenesis phase, the mode of intervention is disability limitation. If disease is not treated early, impairment progresses into disability.
2. Inadequate or no treatment - disability is the consequence of untreated or inadequately treated impairment
3. The four major causes (communicable diseases, malnutrition, poor perinatal care, accidents) - responsible for ~70% of disability in developing countries

Types of Disability (Rights of Persons with Disabilities Bill 2016 - Park's p. 677)

1. Blindness
2. Low-vision
3. Leprosy cured persons
4. Hearing impairment (deaf and hard of hearing)
5. Locomotor disability
6. Dwarfism
7. Intellectual disability
8. Mental illness
9. Autism spectrum disorder
10. Cerebral palsy
11. Muscular dystrophy
12. Chronic neurological conditions
13. Specific learning disabilities (added for the first time)
14. Multiple sclerosis
15. Speech and language disability (added for the first time)
16. Thalassemia
17. Haemophilia
18. Sickle cell disease
19. Multiple disabilities including deaf-blindness
20. Acid attack victim (newly included)
21. Parkinson's disease

CONSEQUENCES OF DISABILITY

1. Leads to handicap - disability produces social role disadvantage if not addressed
2. Dependence - disabled persons may become dependent on family and society
3. Social cost - disability has large social and environmental components; the burden falls on family, community, and state
4. Loss of livelihood - inability to work leads to poverty
5. Need for rehabilitation - requires physiotherapy, occupational therapy, speech therapy, prosthetics, vocational guidance

Consequences Requiring Rehabilitation (Park's p. 676):

• Physiotherapy - corrects deformities, exercises weakened muscles (as in polio); uses infrared rays, diathermy
• Occupational therapy - teaches skills (music, painting, weaving, woodwork, pottery, basket making) according to ability and taste
• Speech therapy - trains the person to communicate normally
• Prosthetics - provision of artificial limbs, hearing aids, other equipment

PART 4 - HANDICAP

Definition

"A disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual."

TYPES OF HANDICAP (Park's p. 674)

CAUSES OF HANDICAP

For Physically Handicapped:

• Blindness, deafness/mutism
• Hare-lip, cleft palate, talipes
• Polio, cerebral palsy, congenital heart disease
• Road accidents, burns, injuries

For Mentally Handicapped (p. 674-675):

• Mental handicap is a condition of sub-average intellectual function combined with deficits in adaptive behaviour
• Previously used terms (idiot, moron, imbecile) are now discarded

• Children scoring above 70 are no longer classified as mentally handicapped
• IQ level is not necessarily constant throughout the individual's lifespan
• Severe mental retardation - the great majority remain more or less dependent throughout life
• Mental retardation often involves psychiatric disturbances

For Socially Handicapped (p. 675):

• Parental inadequacy
• Environmental deprivation (lack of stimulation of learning process)
• Emotional disturbances

• Those orphaned due to death or loss of parents
• Neglected and destitute children
• Those who are exploited or victimized
• Delinquent children

"A child who is physically or mentally handicapped also meets with social handicaps to the extent to which he is subject to social rejection or misunderstanding and cannot make use of the normal value of social fulfilment." (Park's p. 675)

CONSEQUENCES OF HANDICAP

1. Unemployment - cannot fulfil the role of a productive worker in society
2. Social exclusion - cannot participate in community life as a normal member
3. Educational deprivation - cannot access mainstream education
4. Poverty - a secondary handicap arising from inability to earn
5. Psychological impact - loss of personal dignity, confidence, and self-worth
6. Family burden - families bear enormous social, financial, and emotional costs
7. Stigma and discrimination - especially severe in conditions like leprosy

• In India, 16.15 million persons (1.9% of population) suffer from physical disability
• ~3% of the 1-14 year age group is affected by developmental delays
• Disability resulting from polio has affected ~10 million people globally
• Hearing loss (41 dB and above) affects 42 million globally - the 3rd leading cause of disability
• Mental retardation affects ~83 million globally (4th leading cause)

PART 5 - DISABILITY PREVENTION (Park's Three-Level Framework, p. 55)

PART 6 - REHABILITATION (Consequences Requiring Action, p. 55-56)

"The combined and coordinated use of medical, social, educational and vocational measures for training and retraining the individual to the highest possible level of functional ability."

"The patient must be restored and retrained 'to live and work within the limits of his disability but to the hilt of his capacity'." (Park's p. 56)

• p. 55 - Concept of disability, causes, disability prevention
• p. 674-675 - Definitions, classification, causes of mental handicap, types of handicap
• p. 675-677 - ICF, approaches to prevention, Rights of Persons with Disabilities Bill 2016
• p. 376 - CBR definition