“The children of today will make the India of tomorrow
“The children of today will make the India of tomorrow. The way we bring them up will determine the future of the country.” By Jawahar Lal Nehru
“The greatest legacy one can pass on to one’s children and grandchildren is not money or other material things accumulated in one’s life, but rather a legacy of character and faith.”
— Billy Graham, Evangelist
“Children are like wet cement whatever falls on them makes an impression.” “A child is a beam of sunlight from the Infinite and Eternal, with possibilities of virtue and vice, but as yet unstained.” “Children are the hands by which we take hold of heaven.” “The soul is healed by being with children.”
The children are the most beautiful creation of God for mankind. Children create the world of every family beautiful and merry. Life without child is like life without smile. Parents are the ones who build and create this creation of God to a beautiful architecture. Parents are the creators of future generation because they enhance moral and values to children so that they can be a better human.
A child is a human being between the stages of birth and puberty. The legal definition of child generally refers to a minor, otherwise known as a person younger than the age of majority. Every child goes through many stages of social development. An infant or very young child will play alone happily. If another child wanders onto the scene, he or she may be physically attacked or pushed out of the way by the other. Next, the child can play with another child, gradually learning to share and take turns. Eventually, the group grows larger, to three or four children. By the time a child enters kindergarten; he or she can usually join in and enjoy group experiences.
As a child is growing they are learning how to do some tasks in chronological order. They learn how to prioritize their goals and actions. Their behaviour is transcending as they learn new perspectives from other people. They learn how to represent certain things symbolically and learn new behaviour.
Child population encompasses that proportion of the total population of the country which lies in the age group of 0-6 years which is an important indicator since it overlooks a delicate segment of the population. India is the second most populous country in the world where 13.12 percent of her population lies in the tender age bracket of 0-6 years as per the provisional Census 2011 figures. The decline in total child population since Census 2001 stands at 5,030,327 where the decline in rural child population is 8,885 which is in contrast to the increase in urban child population reported as 3,855. The highest rural and urban child population have been reported from Uttar Pradesh whereas the lowest figures for both the mentioned categories are recorded from Lakshadweep.
“One of the greatest titles in the world is parent, and one of the biggest blessings in the world is to have parents to call mom and dad” by Jim DeMint
“To be a good father and mother requires that the parents defer many of their own needs and desires in favour of the needs of their children. As a consequence of this sacrifice, conscientious parents develop a nobility of character and learn to put into practice the selfless truths taught by the Saviour Himself.” James E. Faust
Parents are the care takers of the children. Parents are the value givers and moral developers of the children. Parents without children are like tree without the strong roots. They are the true developing agent. They have the power to build and construct their generations.
Parent is a caregiver of the offspring in their own species. In humans, a parent is the caretaker of a child (where “child” refers to offspring, not necessarily age).
Parents of every race, religion, culture and nationality in all parts of the world are the primary caregivers and teachers of their children, preparing them for a happy, fulfilling and productive life. Parents are the anchors of the family and the foundation of our communities and societies.
Traditionally in many societies, fathers have been moral teachers, disciplinarians and breadwinners. In many countries, there is now an increased emphasis on the father’s role as a co-parent, fully engaged in the emotional and practical day-to-day aspects of raising children. Recent research has affirmed the positive impact of active involvement by fathers in the development of their children. Yet challenges persist for fathers — and for society and social policy. As our understanding of fatherhood grows, there is an opportunity for men to re-envision imaginatively what it means to be a father and to see opportunities to make a difference in communities. Mothers play a critical role in the family, which is a powerful force for social cohesion and integration. The mother-child relationship is vital for the healthy development of children. Violence against women, many of whom are mothers, remains one of the most pervasive human rights violations of our time. The benefits of educating women and girls accrue not only to individual families, but to whole countries, unlocking the potential of women to contribute to broader development efforts. Statistics also show that educated mothers are much more likely to keep their children in school, meaning that the benefits of education transcend generations. In order to support mothers in their caregiving work, the international community needs to develop and expand family-friendly policies and services, such as childcare centres that would reduce some of the workload placed on women. Women and men, alike, need stronger public support to share equally in work and family responsibilities. Families built on the recognition of equality between women and men will contribute to more stable and productive societies.
DISABILITY
Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.
Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.
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Disability is an impairment that may be cognitive, developmental, intellectual, mental, physical, sensory, or some combination of these. It substantially affects a person’s life activities and may be present from birth or occur during a person’s lifetime. Disability is an umbrella term, covering impairments, activity limitations, and participation restrictions. Impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. — World Health Organization.
COMMON DISABILITIES
• Vision Impairment
• Deaf or Hard of Hearing
• Mental Health Conditions
• Intellectual Disability
• Acquired Brain Injury
• Autism Spectrum Disorder
• Physical Disability
Vision impairment refers to people who are blind or who have partial vision. People who are deaf or hard of hearing impairments can range from mild to profound. People who are hard of hearing may use a range of strategies and equipment including speech, lip-reading, writing notes, hearing aids or sign language interpreters. A person with mental health conditions is a general term for a group of illnesses that affect the mind or brain. These illnesses, which include bipolar disorder, depression, schizophrenia, anxiety and personality disorders, affect the way a person thinks, feels and acts. People with intellectual disability may have significant limitations in the skills needed to live and work in the community, including difficulties with communication, self-care, social skills, safety and self-direction. People with acquired brain injury refer to any type of brain damage that occurs after birth. The injury may occur because of infection, disease, lack of oxygen or a trauma to the head. People with Autism Spectrum Disorder are an umbrella description which includes Autistic disorder, Asperger’s syndrome and atypical autism. Autism affects the way information is taken in and stored in the brain. People with autism typically have difficulties in verbal and non-verbal communication, social interactions and other activities. A person with physical disability is that some aspect of a person’s physical functioning, usually their mobility, dexterity, or stamina, is affected.
INTELLECTUAL DISABILITY
Intellectual disability (ID), also known as general learning disability, and mental retardation (MR), is a generalised neurodevelopment disorder characterized by significantly impaired intellectual and adaptive functioning. It is defined as IQ score under 70 in addition to deficient in two or more adaptive behaviours that affect every day , general living.
Once focused almost entirely on cognition, the definition now includes both a component relating to mental functioning and one relating to individuals’ functional skills in their environments. As a result of this focus on the person’s abilities in practice, a person with an unusually low IQ may not be considered to have intellectually disability.
Intellectual disability is subdivided into syndrome intellectual disability, in which intellectual deficits associated with other medical and behavioural signs and symptoms are present, and non-syndrome intellectual disability, in which intellectual deficits appear without other abnormalities. Down syndrome and fragile X syndrome are examples of syndrome intellectual disabilities.
Intellectual disability affects about 2–3% of the general population. Seventy-five to ninety percent of the affected people have mild intellectual disability. Non-syndrome or idiopathic cases account for 30–50% of cases. About a quarter of cases are caused by a genetic disorder, and about 5% of cases are inherited from a person’s parents. Cases of unknown cause affect about 95 million people as of 2013.
Someone with intellectual disability has limitations in two areas. These areas are:
1. Intellectual functioning: Also known as IQ, this refers to a person’s ability to learn reason, make decisions, and solve problems.
2. Adaptive behaviours: These are skills necessary for day-to-day life, such as being able to communicate effectively, interact with others, and take care of oneself.
IQ (intelligence quotient) is measured by an IQ test. The average IQ is 100, with the majority of people scoring between 85 and 115. A person is considered intellectually disabled if he or she has an IQ of less than 70 to 75.
To measure a child’s adaptive behaviours, a specialist will observe the child’s skills and compare them to other children of the same age. Things that may be observed include how well the child can feed or dress himself or herself; how well the child is able to communicate with and understand others; and how the child interacts with family, friends, and other children of the same age.
Intellectual disability is thought to affect about 1% of the population. Of those affected, 85% have mild intellectual disability. This means they are just a little slower than average to learn new information or skills. With the right support, most will be able to live independently as adults.
SPECIAL CHILDREN (MENTAL CHALLENGED)
Special children are the children who need more care and special watch while they grow as their developments are special and different from the children who are not special. Children with Special Healthcare Needs are defined by the maternal and Child Health Bureau (2018) as: “Those who have one or more chronic physical, developmental, behavioural, or emotional conditions and who. Also require health and related services of a type or amount beyond that required by children generally”.
The growth and development of every child is directly linked with care and love what they receive from their parents. The holistic development of child is directly associated with the holistic development of the parents. If parents are mentally and emotionally sound then they can provide best form of care for their children. ‘Giving birth to a child with a disability is no different than giving birth to a child without a disability. Neither one comes with an owner’s manual. Parenting is not an innate skill. It’s complicated enough having a healthy child, but having a child with special needs means that our needs are special, too. As parents we just want to do the right thing for our children.’
“People with disabilities are vulnerable because of the many barriers we face: attitudinal, physical, and financial. Addressing these barriers is within our reach and we have a moral duty to do so. But most important, addressing these barriers will unlock the potential of so many people with so much to contribute to the world. Governments everywhere can no longer overlook the hundreds of millions of people with disabilities who are denied access to health, rehabilitation, support, education, and employment—and never get the chance to shine.”
Late Stephen Hawking.
Children are the blessing from God. Parents are the backbone and foundation value giver for children. For special children also, these points are equally needed as for any other child. Family is the place where a child learns values, morals and behavioural traits. Parents are also to been seen as important as the children of the special needs. There was a case in Bangalore few months back in which a mother killed her special child by throwing from the fourth floor of the building. Mother was a teacher. The point here to be seen is not what the society wants to tell about the incident but to take your heart and mind to the problem of ignoring the parents of the special children. Parents need education, encouragement and awareness regarding what they are for their children. It’s not easy to develop a child, so imagine how difficult it would be to develop a special child.
Internationally, the definition of mental retardation has moved away from a medical model to that of an educational model which is functional and support based and emphasizes the rights of the individual. According to the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, enacted in India, mental retardation means a “condition of arrested or incomplete development of mind of a person which is specially characterized by sub-normality of intelligence”. Field workers, parents and professionals in India opine that this definition has scope for improvement. To this date, a systematic enumeration of the number of persons with disabilities in the country has not been made, the reason being the large geographical area. Data on educational and other needs of pre-school, school going children, youth, adults and senior citizens is not available.
Mental Retardation: Changing Concepts
The American Association on Mental Deficiency (AAMD) The American Association on Mental Deficiency (AAMD), now the American Association on Mental Retardation (AAMR), and also known as the American Association on Intellectual Disabilities (AAID), has made a formal Mental Retardation in India change between 1959 and 1983, to include both measured intelligence and adaptive behaviour. With the WHO definition, which is in use in Britain, and that of the Persons with Disabilities Act, 1995 in India, the American Association on Mental Deficiency definition (1983) is more prevalent among the service providers and the institutions, the usage being more of academic interest than for operational reasons. The American Association on Mental Deficiency (1983) definition reads “Mental retardation refers to a significantly sub-average general intellectual functioning resulting in or associated with concurrent impairments in adaptive behaviour and manifested during the developmental period” (Grossman, 1983). It is a more functional definition which stresses the interaction between the person’s capabilities, the environment in which the individual functions, and the need for support systems. The American Association on Mental Retardation (1992) definition of mental retardation, manifesting before age 18, refers to a substantial limitations in present functioning, characterized by significantly sub-average intellectual functioning which exists concurrently with related limitations in two or more of the following adaptive skill areas: communication, selfcare, home living, social skills, community use, selfdirection, health and safety, functional academics, leisure and work. In adopting this definition and the accompanying classification system, American Association on Mental Retardation (1992) suggests the mild, moderate, severe and profound. Classification in the previous definitions to be substituted with ‘levels’ of support needed by an individual: intermittent, limited, extensive, and
pervasive. These terms may be summarized as below:
• Intermittent: Support of high or low intensity is provided as and when needed. Characterized as episodic or short-term during life-span transitions.
• Limited: Supports are provided consistently over time, but may not be extensive at any one time. Supports may require fewer staff members and lower expense than more intense levels of support.
• Extensive: Supports characterized by regular involvement (daily) in at least some environments (work or home) and not limited (example: long term support and long term home living support).
• Pervasive: High intensity supports are provided constantly, across environments, and may be of life sustaining and intrusive nature. Pervasive supports typically involve a variety of staff members. This definition essentially restates the 1983AAMD definition except that it raises the American Association on Mental Deficiency developmental period to age 22, consistent with he federal definitions of developmental disabilities.
The Diagnostic and Statistical Manual-IV (DSM-IV) – 1994; International Classification of
Diseases (ICD-10) The American Psychiatric Association in its fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV); 1994, also retains the essence of the 1983 AAMD definition of mental retardation as well as the levels of severity of mental retardation. Further, DSM-IV and the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) have coordinated sections on mental and behavioral disorder sconcurring with a common definition and classification system for mental retardation. This coordination specifies four degrees of severity reflecting the level of intellectual impairment.The AAMR 2002 definition reads “Mental retardation is a disability characterized by significant limitations, both in intellectual functioning and in adaptive behaviour, as expressed in conceptual, social, and practical adaptive skills, the disability originating before the age of 18. A complete and accurate understanding of mental retardation implies that mental retardation refers to a particular state of functioning, which begins in childhood, having many dimensions, and affected positively by individualized supports. As a model of functioning, it includes the contexts and environment within which the person functions and interacts, requiring a multidimensional and ecological approach that reflects the interaction of the individual with the environment. The outcomes of that interaction are with regard to independence, relationships, societal contributions, participation in school and community and to personal well being.229
Classification of Persons with Mental Retardation
Based on the 1983 AAMR definition, the operational classification for persons with mentalretardation is as follows:
Level of Retardation IQ Range Approximate percentage Stanford-Binet Wechsler Scales of persons with mentaland Cattell Tests retardation
Mild 52 – 67 55 – 69 89
Moderate 36 – 51 40 – 54 7
Severe 20 – 35 25 – 39 3
Profound 0 – 19 0 – 24 1
Educational Classification
In the special education centres in India, the classroom classification in operation is as shown below:
I. Pre-Primary (A) level
– Chronological ages 3 – 6 years
– Mental ages Upto 5 years
II. Pre-Primary (B) level
– Chronological ages Over 6 years
– Mental ages Around 4½ years
III. Primary level
– Chronological ages 7 – 10 years
– Mental ages 5 – 7 years
IV. Secondary level
– Chronological ages 10 – 13 years
– Mental ages 7 – 9 years
V. Pre-Vocational level
– Chronological ages 14 – 16 years
– Mental ages 8 + years
Most of the classification systems define mental retardation with emphasis on significantly sub-average intellectual functioning of the individual (assessed by the standardized intelligence tests).
In India, where a majority live in rural areas, engaged mostly with traditional, semi-skilled vocations, the adapted Indian intelligence tests have limitations in assessing the exact levels of intelligence due to lack of standardization on such population. No standard test has been so far developed suited to the Indian cultural milieu.
Certification
A disability certificate is issued by a Medical Board duly constituted by the Central and the State Governments. The State Government will constitute a Medical Board consisting of at least three members out of which at least one may be a specialist in the concerned field. In need of correction in the certification process are: limited availability of the specialists in respective areas of disability, distance from theresidence to the assessment and certification place, lack of guidelines on the standard test and the person to be used for assessment. No indigenously established behavior normsare available.
Characteristics of Persons with Mental Retardation
Severity Mild Moderate Severe Profound
Pre-school Can develop social Can talk or learn to Poor motor Gross retardation, and communicative communicate, poor development, minimal capacity for skills, minimal social awareness, fine speech functioning in retardation in motor development. minimal, sensory motor areas sensory- motor Profits from training, generally needs running care. areas, often not self help can be unable to distinguished from managed. profit from those normal until training, self late age. help little, no communicative skills. School age Can learn academic Can profit from Can talk or Some motor 6–20 years skills up to training in social and learn to development approximately 6th occupational skills to communicate, present. Many grade level by late progress beyond 2nd can be trained respond to minimal teens. Can be grade level in in elementary to limited training in guided on social academic subjects, skills and can self help. skills. may learn to travel profit from alone in familiar systematic places. training. Adult 21 & Can usually achieve May achieve self May contribute Some motor and over. social and maintenance in partially to self speech development vocational skills unskilled, under maintenance may be achieved, adequate to sheltered conditions, under complete but very limited self minimum, self needs supervision supervision, care needs are support but may and guidance when can develop achieved. need guidance and under mild social or self protection assistance when economic stress. skills to a under social or minimal useful economic stress. levels in controlled environment.
Incidence and Magnitude of Mental Retardation in India
Estimates in India
Most available data on the prevalence of mental retardation in the country is derived from the psychiatric morbidity surveys conducted by the mental health professionals in specific or circumscribed geographical areas or on target populations, such as rural-urban, industrial population and educational institutions. The prevalence rates of mental retardation, some from the school population, some from the general population, is reported from 1951 to 1994, in the range of 0.07 to 40 per 1000. The prevalence rates for mental retardation in the school population and the general population, rural and urban, based on psychiatric morbidity survey ranges from 0.1 to 140. The sample selected hasbeen a skewed one. The variation in these figures does not give a clear picture of the situation.
The National Sample Survey Organisation (NSSO)
The National Sample Survey Organisation (NSSO) under the Department of Statistics, Government of India conducts large scale survey for socio-economic planning and policy formulation. The first large scale attempt to collect information on the prevalence of developmental delays was made in the 47th round of survey by NSSO. Data obtained from various sources indicate that the prevalence rate of mental retardation is about 20 per 1000 general population while the prevalence of developmental delays is about 30 per 1000 in the 14 year-old population.
In rural areas, the incidence of mental retardation is 3.1% and in urban, it is 0.9%. The NIMH mentions that 2% of the general population is MR. Three quarters of them are with mild retardation and one-fourth are with severe retardation (Panda, 1999). A door-to-door survey conducted in Tamil Nadu in the districts of Kancheepuram (RajaramDist. Collector), Ramanathapuram (Vijay KumarDist. Collector), in 2001 and earlier in 1984 in Tiruchirapalli in a population of 50,000, (Jeyachandran) indicates a prevalence of 1 per 1000.
Difficulties in Collecting Accurate Prevalence Rates
A large, population which is diverse in psychosocial, educational, economical and cultural background, limited number of specialists and lackof standard tools for assessment are the main difficulties. Those with mild mental retardation remain unidentified as they could be involved in a semiskilled vocation and in a structured and restricted environment.
Government of Tamil Nadu Initiative
The Government of Tamil Nadu has initiated creation of a data base on disabilities (2007) on the population with a door-to-door survey in all its districts.
Standard formats have been developed to identify disabilities as listed in Persons with Disabilities Act and the National Trust Act. The survey is based on the etiology of each of the listed disabilities. All the District Disability Rehabilitation Officers, village health workers, Anganwadi workers, the CBR workers, NGOs, working in the field of disability, members of the National Cadet Corps and retired veterans from the armed forces received the required training for the survey.
In India, the incidence and magnitude of mental retardation needs to be looked into.Theoretically, the horizon of special education is often restricted only up to the age of 18 years for persons with disabilities. “Schooling” or attendance in a class room alone is often considered ‘education’ even among the literate population of the nation. NSSO Survey, 1991 The National Sample Survey Organisation (NSSO) under the Department of Statistics, Government of India conducts large scale studies and surveys for socio-economic planning and policy formulation. The first large scale attempt to collect such information on the prevalence of developmental delays was made in the 47th round of survey by NSSO carried out between JulyDecember, 1991, on children age group 0-14 years, coming from 4,373 villages and 2,503 urban blocks.
Data obtained from various sources indicate that the prevalence rate of mental retardation is about 20 per 1000 general population, while the prevalence of developmental delays is about 30 per 1000 in the population of children up to the age of
It is difficult to collect the accurate prevalence rate of mental retardation in a country like India reasons for which have been given above. In the Census of India, 2001, an attempt has been made to assess the disability population in the country belonging to different categories. Unfortunately, no reliable information could be obtained from such data as regards mental retardation since it has been clubbed with mental illness, a term alien to mental retardation in its current conceptualization.
HISTORY OF MENTAL RETARDATION IN INDIA
Identification of persons with mental retardation and affording them care and management for their disabilities is not a new concept in India. The concept had been translated into practice over several centuries as a community participative culture. The status of disability in India, particularly in the provision of education and employment for persons with mental retardation, as a matter of need and above all, as a matter of right, has had its recognition only in recent times, almost after the enactment of the Persons with Disabilities Act (PWD), 1995.
Pre-Colonial India
Historically, over different periods of time and almost till the advent of the colonial rule in India, including the reigns of Muslim kings, the rulers exemplified as protectors, establishing charity homes to feed, clothe and care for the destitute persons with disabilities. The community with its governance through local elected bodies, the Panchayati system of those times, collected sufficient data on persons with disabilities for provision of services, though based on the philosophy of charity. With the establishment of the colonial rule in India, changes became noticeable on the type of care and management received by the persons with the influence from the West.
Pre-Independence–Changing Life Styles in India
Changes in attitudes towards persons with disabilities also came to about with city life. The administrative authorities began showing interest in providing a formal education system for persons with disabilities, particularly for families which had taken up residences in the cities. Changes in the lifestyle of the persons with mental retardation were also noticed with their shifting from ‘community inclusive settings’ in which families rendered services to that of services provided in ‘asylums’, run by governmental or non-governmental agencies (Chennai, then Madras, Lunatic Asylum, 1841). It was at the Madras Lunatic Asylum, renamed the Institute of Mental Health, that persons with mental illness and those with mental retardation were segregated and given appropriate treatment. Special schools were started for those who could not meet the demands of the mainstream schools (Kurseong, 1918; Travancore, 1931; Chennai, 1938). The first residential home for persons with mental retardation was established in Mumbai, then Bombay (Children Aid Society, Mankhurd, 1941) followed by the establishment of a special school in 1944. Subsequently, 11 more centres were established in other parts of India.
Post-Independent India–Current Scenario
Establishment of Special Schools
Article 41of the Constitution of India (1950) embodied in its clause the “Right to Free and Compulsory Education for All Children up to Age 14 years”. Many more schools for persons with mental retardation were established including an integrated school in Mumbai (Sushila Ben, 1955). Notwithstanding this obligatory clause on children’s mainstream education, more and more special schools were also being set up by nongovernmental organizations (NGOs) in an attempt to meet the parents’ demands.
Special Schools
Establishment of special schools in the country since independence is shown below:
Year Number of Special Schools
for Children with
Mental Retardation
1950 10
1960 39
1970 120
1980 290
1990 1100
2007 More than 3000
Indian Education Commission, 1964-66
The Indian Education Commission, 1964-66 made a clear mention of the presence of only 27 schools for persons with mental retardation in the entire country at that time.
In 1953, training teachers to teach persons with mental retardation was initiated in Mumbai by Mrs. Vakil. In 1971, special education to train persons with mental retardation was introduced in Chennai at the Bala Vihar Training School by Mrs. M.
Clubwala Jadhav. In the same year, the Dilkush Special School was established in Mumbai initiating special teachers’ training programs. The various Acts passed and the policies touching the lives of the disabled are dealt with in. This introductory chapter is intended to dispel the myth that very few services were available in India until the period of the Colonial rule. With the rights approach established through several legislations, the quality, accessibility, affordability and availability of an array of services
have been strengthened.
SIGNS OF SPECIAL CHILDREN
There are many different signs of being a special child. Signs may appear during infancy, or they may not be noticeable until a child reaches school age. It often depends on the severity of the disability. Some of the most common signs are:
1. Rolling over, sitting up, crawling, or walking late
2. Talking late or having trouble with talking
3. Slow to master things like potty training, dressing, and feeding himself or herself
4. Difficulty remembering things
5. Inability to connect actions with consequences
6. Behaviour problems such as explosive tantrums
7. Difficulty with problem-solving or logical thinking
8. In children with severe forms, there may be other health problems as well. These problems may include seizures, mood disorders (anxiety, autism etc.), motor skills impairment, vision problems, or hearing problems.
CAUSES
Anytime something interferes with normal brain development, intellectual disability can result. However, a specific cause for intellectual disability can only be pinpointed about a third of the time.
The most common causes of intellectual disability are:
i. Genetic conditions: These include things like Down syndrome and fragile X syndrome.
ii. Problems during pregnancy: Things that can interfere with fetal brain development include alcohol or drug use, malnutrition, certain infections, or preeclampsia.
iii. Problems during childbirth: Intellectual disability may result if a baby is deprived of oxygen during childbirth or born extremely premature.
iv. Illness or injury: Infections like meningitis, whooping cough, or the measles can lead to intellectual disability. Severe head injury, near-drowning, extreme malnutrition, infections in the brain, exposure to toxic substances such as lead, and severe neglect or abuse can also cause it.
v. None of the above: In two-thirds of all children who have intellectual disability, the cause is unknown.
PREVENTION
Certain causes are preventable. The most common of these are fetal alcohol syndrome. Pregnant women shouldn’t drink alcohol. Getting proper prenatal care, taking a prenatal vitamin, and getting vaccinated against certain infectious diseases can also lower the risk that your child will be born special.
In families with a history of genetic disorders, genetic testing may be recommended before conception.
Certain tests, such like ultrasounds and antenatal tests can also be performed during pregnancy to look for problems. Although these tests may identify problems before birth, they cannot correct them.
DIAGNOSIS
A child is special can be suspected for many different reasons. If a baby has physical abnormalities, a variety of tests may be done to confirm the diagnosis. These include blood tests, urine tests, imaging tests to look for structural problems in the brain, or electroencephalogram to look for evidence of seizures.
In children with developmental delays, the doctor will perform tests to rule out other problems, including hearing problems and certain neurological disorders. If no other cause can be found for the delays, the child will be referred for formal testing.
Three major factors for the diagnosis of intellectual disability are:
i. Interviews with the parents
ii. Observation of the child
iii. Testing of intelligence and adaptive behaviours.
A child is considered intellectually disabled if he or she has deficits in both IQ and adaptive behaviours. If only one or the other is present, the child is not considered intellectually disabled.
After a diagnosis of intellectual disability is made, a team of professionals will assess the child’s particular strengths and weaknesses. This helps them determine how much and what kind of support the child will need to succeed at home, in school, and in the community.
REMEDIES
Learn everything you can about your Childs special needs. The more you know the better advocate you can be for your child. Encourage your child’s independence. Let your child try new things and encourage your child to do things by him or herself. Provide guidance when it’s needed and give positive feedback when your child does something well or masters something new. Get your child involved in group activities. Taking an art class or participating in Scouts will help your child build social skills. Stay involved. By keeping in touch with your child’s teachers, you’ll be able to follow his or her progress and reinforce what your child is learning at school through practice at home. Get to know other parents facing the same challenges. They can be a great source of advice and emotional support. (Child line reports, 2016)
SPECIAL CHILDREN IN INDIA
Children with Disabilities are the children who need special assistance for their life. According to UN Enable, around 10% of the world’s populations, 650 million people, live with disabilities. Women and girls with disabilities are particularly at a risk of abuse. According to a UNICEF survey, 30% of street youth are disabled. Some countries where IMR rates are high, mortality rates for children with disabilities is as high as 80%. Some suspect that children with disabilities are being purposely weeded out. 90% of children with disabilities worldwide do not attend school. Conflict areas find that for every one child that is killed, three are injured and permanently disabled. Children with disabilities are at a 1.7 times greater risk of being subjected to some form of violence.
According to Child Rights over 150 million children worldwide have a disability. 50% of children with a hearing impairment and 60% of those with an intellectual impairment are sexually abused. There are many medical professionals who kill children with disabilities and right them of as mercy killings. 90% of the children with disabilities will not survive pass twenty years of age. Children with disabilities face discrimination not only in services but also in the justice system as they are often not considered credible witnesses.
In India children with disabilities mainly comes under the purview of the Ministry of Social Justice & Empowerment. Some of the issues are dealt with by the health ministry. But no single ministry has been assigned the protection of these children, which leads to varying data about occurrence of disability amongst children. In India 1.67% of the 0-19 population has a disability. 35.29% of all people living with disabilities are children. Other estimates say that India has 12 million children living with disabilities. Only 1% of children with disabilities have access to school and one third of most disabilities are preventable. Under-nutrition is a severe problem with children who suffer from cerebral palsy. In India 80% of children with disabilities will not survive past age forty.
Disability in India is still functioning in the realm of social welfare instead of a rights perspective. Teachers are not trained and schools don’t have the infrastructure to deal with children with disabilities. Neither are paediatric wards of hospitals equipped to deal with them. There is not enough data on the number of children living with disabilities to allow the government to provide the necessary services. Mental health disorders account for one sixth of all health disorders yet India spends 0.83% of its health budget on mental health.
Census 2001 has revealed that over 21 million people in India as suffering from one or the other kind of disability. This is equivalent to 2.1% of the population. Among the total disabled in the country, 12.6 million are males and 9.3 million are females. The number of disabled is more in rural compared to urban areas. Such proportion has been reported between 57-58 percent for males and 42-43 percent females. The disability rate (number of disabled per 100,000 populations) for the country as whole works out to 2130. This is 2,369in the case of males and 1,874 in the case of females.
Among the five types of disabilities on which data has been collected, disability In seeing at 48.5% emerges as the top category. Others in sequence are: In movement (27.9%), Mental (10.3%), In speech (7.5%), and In hearing (5.8%). The disabled by sex follow a similar pattern except for that the proportion of disabled females is higher in the category In seeing and In hearing.
Across the country, the highest number of disabled has been reported from the state of Uttar Pradesh (3.6 million). Significant numbers of disabled have also been reported from the state like Bihar (1.9 million), West Bengal (1.8million), Tamil Nadu and Maharashtra (1.6 million each). Tamil Nadu is the only state, which has a higher number of disabled females than males. Among the states, Arunachal Pradesh has the highest proportion of disabled males (66.6%) and lowest proportion of female disabled.
As per Census 2011, in India, out of the 121 Cr population, about 2.68 Cr persons are ‘disabled’ which is 2.21% of the total population. In an era where ‘inclusive development’ is being emphasised as the right path towards sustainable development, focussed initiatives for the welfare of disabled persons are essential. This emphasises the need for strengthening disability statistics in the Country. Census 2001 has revealed that over 21 million people in India as suffering from one or the other kind of disability. This is equivalent to 2.1% of the population. Among the total disabled in the country, 12.6 million are males and 9.3 million are females. Although the number of disabled is more in rural and urban areas. Such proportion of the disabled by sex in rural and urban areas. Such proportion has been reported between 57-58 percent for males and 42-43 percent females. The disability rate (number of disabled per 100,000 populations) for the country as whole works out to 2130. This is 2,369in the case of males and 1,874 in the case of females.
Among the five types of disabilities on which data has been collected, disability In seeing at 48.5% emerges as the top category. Others in sequence are: In movement (27.9%), Mental (10.3%), In speech (7.5%), and In hearing (5.8%). The disabled by sex follow a similar pattern except for that the proportion of disabled females is higher in the category In seeing and In hearing.
Across the country, the highest number of disabled has been reported from the state of Uttar Pradesh (3.6 million). Significant numbers of disabled have also been reported from the state like Bihar (1.9 million), West Bengal (1.8million), Tamil Nadu and Maharashtra (1.6 million each). Tamil Nadu is the only state, which has a higher number of disabled females than males. Among the states, Arunachal Pradesh has the highest proportion of disabled males (66.6%) and lowest proportion of female disabled.
TABLE 20 : NUMBER OF DISABLED POPULATION AND TYPE OF DISABILITY
Population Percentage (%)
Total population 1,028,610,328 100.0
Total disabled population 21,906,769 2.1
Disability rate ( per lakh population) 2,130 —
Type of Disability
(a) In seeing 10,634,881 1.0
(b) In speech 1,640,868 0.2
(c) In hearing 1,261,722 0.1
(d) In movement 6,105,477 0.6
(e) Mental 2,263,821 0.2
Source: Census of India 2001.
There are ample reasons for developing a sound national disability statistic. Information on their socio – demographic profile is essential for welfare of disabled persons. Information about their functional status is important to identify needs since two individuals with the same impairment may face different types of difficulties in undertaking certain activities, and so have different needs that require different kinds of interventions.
Functional status data is essential for determining the broader social needs of persons with disabilities, such as provision of assistive technology for use in employment or education or broader policy and laws.
Population disability data is essential for monitoring the quality and outcomes of policies for persons with disabilities. In particular, these data help to identify policy outcomes that maximize the participation of persons with disabilities in all areas of social life from transportation and communication, to participation in community life. Finally, with complete and reliable disability statistics, state agencies will have the tools for assessing the cost-effectiveness of policies for persons with disabilities, which in turn can provide the evidence to persuade governments of their ultimate benefit for all citizens.
The National Policy for Persons with Disabilities (2006) recognizes that Persons with Disabilities are valuable human resource for the country and seeks to create an environment that provides equal opportunities, protection of their rights and full participation in society. To facilitate the national objective, there is a need for collection, compilation and analysis of data on disability.
The Sustainable Development Goals (2015) pledges for ‘leaving no one behind’. Recognizing that the dignity of the human being is fundamental, the SDGs wish to see the Goals and targets met for all nations and peoples and for all segments of society and to endeavour to reach the furthest behind first. The implementation and monitoring of these international commitments demand sound database of disabled persons.
In India children with disabilities mainly comes under the purview of the Ministry of Social Justice & Empowerment. Some of the issues are dealt with by the health ministry. But no single ministry has been assigned the protection of these children, which leads to varying data about occurrence of disability amongst children. In India 1.67% of the 0-19 population has a disability. 35.29% of all people living with disabilities are children. Other estimates say that India has 12 million children living with disabilities. Only 1% of children with disabilities have access to school and one third of most disabilities are preventable. Under-nutrition is a severe problem with children who suffer from cerebral palsy. In India 80% of children with disabilities will not survive past age forty.
Census 2001 has revealed that over 21 million people in India as suffering from one or the other kind of disability. This is equivalent to 2.1% of the population. Among the total disabled in the country, 12.6 million are males and 9.3 million are females. The number of disabled is more in rural compared urban areas. Such proportion has been reported between 57-58 percent for males and 42-43 percent females. The disability rate (number of disabled per 100,000 populations) for the country as whole works out to 2130. This is 2,369in the case of males and 1,874 in the case of females.
Among the five types of disabilities on which data has been collected, disability In seeing at 48.5% emerges as the top category. Others in sequence are: In movement (27.9%), Mental (10.3%), In speech (7.5%), and In hearing (5.8%). The disabled by sex follow a similar pattern except for that the proportion of disabled females is higher in the category In seeing and In hearing.
Viewing disability from a human rights perspective involves an evolution in thinking and acting by States and all sectors of society so that persons with disabilities are no longer considered to be recipients of charity or objects of others’ decisions but holders of rights. A rights-based approach seeks ways to respect, support and celebrate human diversity by creating the conditions that allow meaningful participation by a wide range of persons, including persons with disabilities. Protecting and promoting their rights is not only about providing disability-related services. It is about adopting measures to change attitudes and behaviours that stigmatize and marginalize. Understanding disability as human rights
SPECIAL CHILDREN IN TAMIL NADU
District wise population of the Differently Abled Persons in Tamil Nadu
as per the census 2011 of Government of India
S. No District VI HI LD MR MI MD OTHERS TOTAL
1. Chennai 10506 27273 14146 5495 2716 4780 25148 90064
2. Coimbatore 5985 15605 10452 4141 1385 3531 11353 52452
3. Cuddalore 5604 12202 9225 3625 825 3109 8042 42632
4. Dharmapuri 2903 5978 7381 1953 547 2366 4155 25283
5. Dindigul 3038 9973 7287 2769 837 2467 6582 32953
6. Erode 3930 8417 9793 2874 1185 3155 6007 35361
7. Kancheepuram 7242 17046 15082 5619 1739 4707 17626 69061
8. Kanyakumari 2820 7597 8720 3249 1660 2863 8443 35352
9. Karur 1601 3099 4475 1342 469 1365 1691 14042
10. Krishnagiri 3081 7324 7473 2232 528 2208 5845 28691
11. Madurai 5462 11339 11530 4384 1275 3271 9587 46848
12 Nagapattinam 3244 6024 7577 2974 1103 2726 4575 28223
13 Namakkal 3177 6322 8033 2231 596 1992 3994 26345
14 Nilgiris 1115 2161 2566 1016 317 860 1985 10020
15. Perambalore 1079 3203 2199 833 202 778 2092 10386
16. Pudukkottai 2614 5485 6128 2453 831 2524 4443 24478
17. Ramnad 2462 6359 5222 2230 692 1822 4645 23432
18. Salem 4822 9702 13639 4019 1140 3751 6595 43668
19. Sivakangai 2411 6227 5993 2235 692 2190 4374 24122
20. Thanjavur 3592 8048 9970 3981 1403 3350 5968 36312
21. Trichy 4460 8376 11139 4381 1283 3480 7157 40276
22. Theni 1857 5913 5140 1811 498 1607 4150 20976
23. Thiruvarur 3030 7562 6173 2041 778 2022 4670 26276
24. Thiruvannamalai 4524 9453 9790 3374 860 3333 6838 38172
25. Thiruvallur 7296 21857 13144 4961 1344 4969 20978 74549
26. Thirunelveli 5302 11840 14600 5195 1822 4183 8605 51547
27. Thoothukudi 3751 7366 8903 2988 1302 2472 4588 31370
28. Virudhunagar 2864 6604 8276 2927 839 2745 4559 28814
29. Villupuram 6324 14694 15994 4256 1175 4583 11507 58533
30. Vellore 6408 14645 15586 5535 1603 5362 12019 61158
31. Ariyalur 1790 4162 3733 1116 317 1294 2664 15076
32. Thiruppur 3111 8462 7872 2607 1001 2931 7507 33491
Total 127405 300318 287241 100847 32964 92796 238392 1179963
Importance of this research:
This is a unique subject as people are more focused on the disability of the children there are many efforts taken to bring the children with special needs to the mainstream. They have also been succeeded to include the special children to involve with the children in school and college setting. But from the being if we see there are very less research being conducted to include parents of the special children and also to understand the problems faced by them. When we talk abut the holistic development of any child the main important factor are the parents but in the past till mow there are very less measures take to develop parents of special children in our country or to include them also in the various development strategies of their children. the aim of this research is to know the psychosocial problems of the parents. This study will try to bring the various challenges faced by the parents of special children focusing of the parents of mentally challenged children and the various measures which can be taken to solve those challenges.
