Challenges Faced By The Challenged

Challenges faced by the Challenged We, as individuals, are all different in many ways. We may look or act different than even our best friends. We also all learn differently. Some people learn things quickly while others just need more time. Some of us are terrific in math while others are great athletes. It's important to remember that our differences don't make us weird . . . they just make us individuals. Just like all kids, ‘special children’ or the ‘mentally challenged’ children need to develop their skills to the best of their ability. They need to go to school and they need to play. It's important to remember their feelings. It is not right to call these kids names because a medical problem makes them different in some ways. They also "laugh and cry, have good days and bad days, and are as dependent on kindness, acceptance, and love as anyone else." These challenged kids may be in the same class as kids with normal intelligence. They may be able to do all the things their classmates do but need just a little more help. As they get older, they may be able to get jobs and live on their own. Oftentimes, others aren't aware that a person has mild retardation. People with this level of retardation are usually able to function independently alongside their friends and coworkers. The term "mental retardation" is often misunderstood and seen as derogatory. Some think that retardation is diagnosed only on the basis of below-normal intelligence (IQ), and that persons with mental retardation are unable to learn or to care for themselves. Actually, in order to be diagnosed as a person with mental retardation, the person has to have both significantly low IQ and considerable problems in adapting to everyday life. However, most children with mental retardation can learn a great deal, and as adults can lead at least partially independent lives. Most importantly, they can enjoy their lives just as everyone else. In the past, parents were usually advised to institutionalize a child with significant mental retardation. This is not done anymore. The goal now is for the child with mental retardation to stay in the family and take part in community life. Mental retardation may be complicated by physical and emotional problems. The child may also have difficulty with hearing, sight or speech. All these problems can lower the child's potential. It is a condition, a syndrome, a symptom and a source of pain and bewilderment to many families. Its history dates back to the beginning of mans time on earth. Mental retardation results from any one of number of circumstances. It may occur before, during or after the birth of an infant. It is multiple rather than a single problem. Mental retardation has multiple causes and multiple associated handicaps. Among the mental retarded, some are physically normal, self-supporting member of the society. Others have physical abnormalities and behave as a small child throughout their lives. Many are several misshapen, unable to speak or communicate their simplest needs. A large number have additional handicaps including epilepsy, cerebral palsy, speech, hearing or visual problems and poor health.

Statistics In surveys in the general population in India among people of all ages, it has been found that around 2% have mental retardation. In other words, in a village of 1000 people, one can expect to find around 20 people with mental retardation. But if one estimates the problem only in children, (under 18 years of age) there will be about 3% of cases with mental challenge among all children under 18 years of age in the same village. Mild mental retardation is much more common than severe mental retardation, accounting for 65 to 75% of all cases with mental retardation. Looked at in another way, in a village of 1000 people, of the 20 who will have mental retardation, about 15 will have mild mental retardation and about five will have more severe forms. It has been found that mental retardation, especially mild mental retardation, is more common in rural areas, and in low-income groups. Reasons like poor access to health facilities, under-stimulation, and under-nutrition could account for this observation Historical references Cases of mental retardation are found in every community, although they are referred to differently, such as manda buddhi in India, buddhi pratibondhi in Bangladesh and manda buddika / manda manasika in Sri lanka. Cases of mental retardation have been documented in ancient medical literature and in fiction. Kashyapa Samhita, an ancient Ayurvedic treatise on childhood diseases, makes a specific reference to children born with lesser intellect (buddhi) and even offers treatment to improve the condition. One can find many references to disabilities in Jathaka stories, dealing with the life of the Buddha. Several references to weakness of the mind are found in the ‘Holy Quran’ and in a well attested sermon of the Prophet Muhammad. Causes of Mentally Retardation Mental retardation can be caused by any condition, which impairs development of the brain before birth, during birth, or in the childhood years. The three major causes of mental retardation are Down syndrome, Foetal alcohol syndrome and Fragile X Syndrome. In several cases, however, the causes are unknown. The causes can be generally categorised under: • Genetic conditions • Problems during pregnancy • Prenatal problems • Prenatal problems • Postnatal problems • Poverty and cultural deprivation

The extent of retardation can be further divided into: • Severely / profoundly impaired • Trainable mentally retarded • Educable mentally retarded Severely/profoundly impaired People with severe retardation have had very limited experiences and hence require a lot of inputs and stimulus. Characteristically, profoundly retarded people: • Require one step directions. All instructions and steps should be broken down as understanding and following more than one thing at a time is very difficult. • Require demonstration in concrete. • Have poor motor and speech development. • May have a problem using one or more parts of the body in a functional way. • Require constant verbal cues through any activity. • May "rock", make noises and gestures that are incongruous. • May exhibit "blindism" - rocking, flicking fingers in front of face, banging etc. • May have distinguishing physical feature as in the case of people with Down syndrome. • The IQ range is 10 to 34 Trainable mentally retarded The level of cognitive development and adaptive behaviour is severely below age expectations. The rate of learning as compared to the age would be one fourth to half. Characteristically, a trainable mental retarded is: • Capable of being trained in socialisation and self help skills. • Can communicate basic needs. • Can carry on repetitive routine tasks. • Can handle academics till class two level normally. • Is usually passive slow moving and has gross and fine motor problems. • Has difficulty relating self to space. • Has a problem with abstractions. • Has a short attention span and poor memory recall. • Tends to be stubborn. • May have other associated handicaps. • The IQ range is 35 to 49.

Educable mentally retarded At times children inflicted with this problem are also referred to as slow learners. These people learn at the rate of about half to three-fourths the rate of other people their age. At the elementary school level there is a two or three year maturation gap academically and a one or two year gap socially. At the junior school level this gap widens to three or four years and the gap continues to widen with age. A child with educable mental retardation: • Is capable of being educated in all aspects of a regular curriculum. • Can follow a series of instructions. • Has various social skills. • Has problems with abstract thought but can work around them in certain cases. • Learns better in the concrete form. • Has limited transfer skills. • Needs repetitive directions. • Has a relatively short attention span and impaired recall skills. • Has no distinguishing physical characters. • The IQ range is 50 to 69. Prevention Significant advances in research have helped in prevention of many cases of mental retardation. Early Intervention programe with high risk infants and toddlers have shown positive effects on intellectual functioning. Early comprehensive prenatal care and preventive measures prior to and during pregnancy increase a woman’s chances of preventing mental retardation in the new born. Dietary supplementation with folic acid, taken before and during pregnancy, reduces the risk of neural tube defects. The health of a baby can depend on how healthy a mother is before pregnancy. Classification Alfred Binet develops some tests to classify mental retardation in 1905 through which we can measure intelligence in terms of reasoning and problem solving rather than motor skills. He also devised the concepts of ‘Mental Age’ and ‘Chronological Age’ on the basis of which he could differentiate between bright and dull ones. After that in 20th Century attempt were made to bring out the level of mental retardation on the basis of the degree of mental development expressed as equivalent to the actual or life age in term s of Intelligence Quotient (IQ) Broadly, we can say that mental retardation is classified on the basis of Medical, Psychological and Educational concepts. The Medical classification is based on the causes of mental retardation. Psychological classification is based on the level of intelligence of the mental retardation; the education classification is based on the current level of functioning of the mental retardation.

Medical • Infections and in intoxications • Trauma and physical agents • Metabolism and nutrition • Gross brain disease • Unknown prenatal influences • Chromosomal abnormality • Gestational disorder • Psychiatric disorder • Environmental influences • Other influences Psychological • Mild Mental Retardation: • Moderate Mental Retardation: • Severe Mental Retardation: • Profound Mental Retardation:

IQ: 68-52 IQ: 51-36 IQ: 35-20 IQ: under 20

Educational • Educable • Trainable • Custodial The various classification provide an understanding the level at which mental retarded person functions with respect to his education, appropriate behaviour and the degree of his independence. The characteristics of the mentally retarded persons vary depending upon the level of retardation. Portage Guide to Early Intervention (PORTAGE) Early Intervention was designed in 1975, as a home bound intervention program for preschool children 0-6 years with developmental disabilities. It aims to provide a flexible model for early intervention which will assist children to attain their optimum development by involving the parents and families in the education of their own child. It consists of 3 parts: • A manual • Check-list of behavior in which to record the individual child’s progress and level of skills • An illuminated set of card or bulk comprising the curriculum which contains the suggestions for teaching the skills listed on the check-list. The check-list consists of a complete breakdown of normal developmental skills from birth to six years. The check-list is divided into six sections, of which, one is the infant stimulation section, and five are of the developmental area. Each development area can

be easily identified by colour. The area of development are cognition, self-help, motor, language and socialization. Each skill area is divided into a number of skills ranging from 78 to 140 and they are arranged in the order of the usual sequence in which they are learned in a normally developing child. They are numbered consecutively and divided into age groups. When an item performed easily, without aid, a tick mark is put into the column, entry behavior on the right. The items which the child fails to perform is coloured in different colour. For evaluation each item which the child failed to perform in entry behavior is assessed again and if he passes, a different colour, is put against that item on the right side. Early intervention is very important for mentally retarded children’s. Through early intervention it is very easy to decide what type of training, education will be help full for the child.

Special Education The mentally retarded persons are markedly deficient in learning useful information’s and skills, adapt to new problem and conditions of life, profit from past experience, engage in abstract and creative thinking employ critical judgment, avoid errors and surmount difficulties and exercise foresight attributes. Their learning capacity is limited. They learn at a slow pace. A major goal of special education is to enable special children to live in the most independent way possible. Its scope is very wide and it provides several types of services and training programs from early intervention to vocational placement. It may include school based and home based programs for children according to their needs. Special educators use methods, curricular and materials that are presented in an organized, structured, step-by-step manner. Instruction is usually provided individually and in small groups, especially in the area of reading and spelling or in activities of daily living. In addition to specially designed instruction a great deal of help is provided in the behavioural and emotional domains. The presence of a stable and structured environment helps the student to get the most out of the program and to learn most effectively. CIOSA held a small group discussion amongst its members who were focusing on with the educational needs of these special children. 1. 2. 3. 4. 5.

Karunai Trust Annai Special School Madhuram Narayan centre for Exceptional Children Maruthi seva centre for Special Education. Mithra…Madras institute to Habilitate Retarded Afflicted Ramana Sunrity Aalaya (RASA)

According to many of the trainers associated with these organizations, every mentally retarded child is different from the other. The training that should be imparted should be continuous process and should not be time bound. The afflicted child can be admitted at any time during the year for rehabilitation. The faculty and the organization should ensure of individual focus so that the progress of the child is consistent. The trainers have to be very sensitive and observant as the afflicted children are totally oblivious to each and every aspect of life, be it the importance of money or identifying pain. It is the trainer who has to see the change and help the child and thereby help indexing the mind of the afflicted child. The trainer has to be so sensitive that they have personally help the afflicted child and make him/her understand the importance of personal hygiene and upkeep. They have also teach social skills like welcoming people etc., and self help skills like intake of a meal, brushing etc., Children with intellectual impairment are different from their peers in that they need more individual attention than other children. However, they need as much love and support as other children do. A child with mental retardation can do well in school but is

likely to need individualized help. For child up to age three, services are provided through an early intervention system. Special Educators work with the child’s family to develop the skills of the child. Early Intervention Programme helps parents and other family members to know how to help their young child with mental retardation. With early intervention, most children are able to live efficient and satisfactory lives. Most of these organizations have a syllabus basing on which the training is imparted and generally teach through illustrations or with the help of things. For ex: - The children are first shown an apple and then taught the letter A. There are some goals set for individual children and for the group, basing on which the growth/result can be achieved faster. There are times when a trainer comes across some afflicted children who are slow learners. For which the school interacts with the parents and suggest some special school wherein the child gets a lot more personal attention from the trainer and thereby can progress faster. It is still a mystery as to how a child can be born as mentally retarded, inspite of the immense progress made in medical research. The major problem faced by the afflicted child is that the parents themselves take a very long time to accept the condition and till then the child progress remains stagnant. The child, as usual, is oblivious to this attitude, as he does not feel the pain of being ignored nor cared. There is no medical treatment for intellectual impairment since it is not a disease. Treatment strategy involves training and rehabilitation of the child. Apart from academic knowledge, special education also provides these children with the requisite skills so that they are able to adjust in society. Specific treatment measures like behaviour therapy are used to reduce socially unacceptable behaviour of these children. The child is given an identity card by the school which sometimes does not come handy as the people around him are ignorant of his condition and do not come forward to help him. Individualised Education Programme An Individual Education Programme, commonly referred to as an Individual Education Plan (IEP) is a mandated requirement of the Individual with Disabilities Education Act of 2004. The appropriate intervention should be based on the needs of the child as determined by a team of professional, address the provided in the least restrictive, most inclusive setting. Development of IEP depends on the need of the child with mental retardation. To establish specific instructional objective, it is necessary to acquire information that is instructionally relevant. This is obtained by assessing the child’s current level of performance. The major components of an IEP are:

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General background information about the child. The current level of performance in specified skills. Goals and short term objective. Methods and material required to achieve the objective Time required The person assigned in training the child, to achieve the objective. Evaluation to assess whether the objective has been met or not.

Madras Development Programming System The Madras scale 1968 designed by Prof. Jayachandran and Prof. Vimla, later revised as Madras Development Programming System it provides information about the functional skills of mentally handicapped persons in order to facilitate individual program planning. The scale consist of 360 observable and measurable items grouped under 18 functional domains, such as gross motor, fine motor, eating, dressing, grooming, toileting, receptive and expressive language, social interactions, reading, writing, number, time, money, domestic behaviour, community orientation, recreation and leisure time activities and vocational orientation. Each domain lists twenty items in an increasing order of developmental difficulty and along the dependence-independence continuum. The MDPS system helps to record the challenging behaviour which can be taken care through the IEP. The administrative procedure involves getting information on what skill behaviours the child can or cannot do currently. This information is derived by direct observation of the child, parent/caretaker interviews or by means of teaching during assessment. The Child’s performance on each item is rated along two discretions (Performance – A, Not performing – B) depending on whether the child can or cannot perform the target behaviour listed in an item on the scale. The data recorded both graphically and numerically from MDPS helps the teacher to set goals and draw behaviour profiles of individual cases. Besides, it help in the evaluation of a child’ progress over a period of time. For evaluation, MDPS has provision to represent the data graphically, numerically, weekly, quarterly and annually. Functional Assessment Check list for programming (FACP) The Department of Special Education, NIMH, Secunderabad, developed a series of educational check-list to facilitate program planning in each child with mental retardation from pre-primary to pre-vocational levels. There are seven check-lists in this series. Each check-list is addressing to different levels of the child’s functioning, vix. Pre-primary, primary –I, primary –II, secondary, prevocational – I, pre-vocational – II and care group. The skills required at each level have been selected carefully and written as objectively as possible. At each level excepting

care-group, the check-list covers a board domin of skills, such as personal, social, academic, occupational and recreational. Teaching goals and objectives are set quarterly (once in 3months) and the progress is evaluated at the end of each quarter. As it is assumed that a child stays for a maximum of 3 years in a given level, the check-list provides space for recording assessment and evaluation date over a period of 3 years. Behavioral Assessment Scale for Indian Children with Mental Retardation (BASICMR) The BASIC-MR has been developed by Reeta Paeshwaria and S.Venkatesan of NIMH, Secunderabad, as a part of the project to develop material for teachers in the use of Behavioral technology in Mentally Retarded children in special school. It has been designed to elicit systematic information on the current level of behavior in school going children with mental retardation between 3 to16 (or 18) years of age. However, the teacher may find the scales useful for even older severely retarded individuals. The scales are relevant for behavior assessment and can also be used as a curriculum guide for program planning and training based on the individual need of each. The scale has been developed in two parts, namely BASIC-MR Part-A and BASIC-MR Part B. The part a consisting of 250 items grouped under 7 domains, such as motor activities of daily living (ADL), language, reading-writing, number-time, domestic, social and pre-vocational money helps to assess the current level of skill behavior in the child. While Part-B consisting level of 75 items grouped under 10 domains, such as, violent and destrictive behavior, repetitive behavior, odd behavior, hyperactive behavior, rebellious behavior, anti-social behavior and fears helps to assess the current level of problem behavior in the child. UPNAYAN Programme of Developmental Training The UPANAYAN program is a product of Indchem Research and Development laboratory, promoted by Sanmar Group of Companies and adopted at the Madhuram Narayan Centre. It is a scientific association recognized by Government of India, Ministry of Science and Technology. The objective of the project was to develop a computer based/assisted programme for the training of persons with mental retardation. The project was executed by an inter disciplinary team of expert. The focus of the training programme is the mother who is the intervening agent. The programe, developed in the first phase of its project, is an expert intervention process for children below 2 years of age with the disability. The programme comprises of 250 skills, 50 from each domin, such as, motor, self-help, language,longnition and socialization Theatre as a tool for education Ramana Sunrity Aalaya (RASA) focuses on the application of a unique methodology, resulting in the holistic development of children with special needs. The methodology

call Theatre for Holistic Development is scientifically structured, developmentally focused and individual specific. It uses the different aspects of theatre like dance, music, mime, drama, arts and crafts that makes for a spontaneous learning process. These activities are carefully structured to achieve therapeutic goals. Through these learning methods, which are non-threatening and enjoyable, children develop a greater awarness of their bodies and minds and their capacities. Every Child with mental retardation should be provided as normal life as is available for normal child. Transition to work is the latest is the latest development in the field of special education. That is children with mental retardation on reaching the age of maturity should be trained in work related skills for future induction into employment. The employment can be open, supported or sheltered in nature. This process is essential to give a boast to the self-esteem of individual with mental retardation.

Acts In Disability 1. 2. 3. 4. 5. 6. 7.

Equal opportunities to the disabled, protection of their rights and for measures to bring about their full participation in society are specified. Mental Illness is recognized as a disability under this legislation. The Rehabilitation Council of India Act, 1992 The Mental Health Act, 1987 The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 Employees State Insurance Act, 1948 Three percent reservation in Government jobs is available for other disabled but not for mentally challenged persons. Similarly, right to free education for all disabled persons up to 18 years of age. However, mental illness strikes around that age. So one could question the value of such a provision.

Rights of Mentally Challenged Human Rights is the first universally accepted ideology. Although most observers regard the formation of the United Nations and the promulgation of the universal Declaration of Human Rights as the beginning of the modern struggle to protect human rights, one can trace the origins of human rights back to early philosophical and legal theories of the 'natural law', a law higher than positive laws of states. According to these theories, individuals were entitled to certain immutable rights as human beings. No doubt universal declaration of Human Rights adopted by UN Genaral Assembly by resolution No.217A(111) of 10th December 1948, which recognised the freedom of individuals as well as their rights to equality, is a milestone in this area, but people with disabilities were not specifically covered by this important international declaration. In spite of the fact that this segment of society constitutes 10 to 12 percent of the world's population, this declaration did not include the prohibition of discrimination on the ground of disability specifically. This reflects insensitivity and apathy of policy makers towards the people with disabilities. In fact, all initial policies and programmes were focused on the institutionalisation, giving passive community care and providing some welfare measures for them. All this resulted into denial of opportunities in different spheres of life, discrimination on the ground of disability and their social and cultural isolation. They were also not allowed in the process of planning, implementation and monitoring of policies and programmes designed for them even in the organisations working for them. Gradually, people with disabilities organised themselves in almost every part of the world and undertook their struggles for ensuring their fundamental human rights of equality and life with dignity. Probably, it was for the first time in 1958 that an international covenant included the needs of disabled persons in Article 5 of discrimination (Employment and occupation) convention adopted by ILO. Under this article, the convention declared special measures in favour of various disadvantaged groups including people with disabilities to meet the specific needs to be an acceptation to forms of discrimination envisaged and prohibited

by it. Later on, UN general Assembly vide its resolutions no.2865(XXVI) of 20th December, 1971 made the first International Proclamation on the Rights of Mentally Retarded Persons, one category of disabilities. This declaration recognises that mentally retarded persons have the same rights as other citizens. In addition, it also recognised their rights to development in all spheres of life as well as medical care and physical therapy. Four years later, UN General Assembly adopted a declaration on the rights of disabled persons through resolution no. 3447(XXX) of 9th December, 1975 which might be regarded as the most important document containing international commitment on the protection of the following human rights of disabled persons: 1. Right to respect for their human dignity (Para 3 of declaration) 2. Right to enjoy some civil and political rights as other human beings (Para 4 of the declaration of human rights) 3. Their entitlements to the measures designed to enable them to become as self-reliant as possible (Para 5 of the declaration) 4. Right to medical, psychological and functional treatment, including prosthetic and orthetic applicances , to medical and social rehabilitation, education, vocational training and rehabilitation aid, counseling, placement service, and other services which will enable them to develop their capabilities and skills to the maximum and will hasten the processes of their social integration or reintegration (Para 6 of declaration) 5. Right to 'economic and social security' and to a decent level of living (Para 7 of declaration) 6. Right to get their specific needs considered at all stages of social and economic planning (Para 8 of the declaration) 7. Right to live with their families or foster parents and to participate in all social, and cultural activities (Para 9 of declaration) 8. Right to be protected against exploitation or discrimination of any form (Para 10 of declaration) 9. Right to have legal aid for the protection of their persons and properties (Para 10 of declaration) 10. Right of organisations of disabled persons to be consulted in matters concerning them (Para 12 of the declaration) UN initiatives helped the organisations of people with disabilities to persuade their respective governments for granting of fundamental human rights to this segment of society. While UN decade for disabled persons 1983-92 created an awareness among policy makers for promoting equality and participation of disabled persons, the Asian and Pacific Decade of Disabled Persons 1993-2002 proclaimed by UN concrete actions by the Governments in the region of the achievement of these goals. Adoption of the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities by UN General Assembly in December, 1993 is yet another important international instrument in support of advocacy and realisation of these rights. To conclude, campaign for the protection of human right of disabled persons is quite recent as the case in many countries in the Asia & Pacific region.

How to Communicate With a Mentally Challenged Person The ability to communicate with people whose speech is limited by mental deficiency is actually a skill that can be developed over time with practice. Whether you deal with mentally challenged speakers often or rarely, this advice will help you to communicate more effectively and smoothly. STEPS: 1. Maintain a calm, low volume. Speaking louder doesn't make you more understandable. 2. When determining "age-appropriateness" of your words, remember that you must know the "mental age" of your listener, not his or her "calendar age." Remember: they are just mentally challenged, not a person with a limited vocabulary such as a five-year-old. 3. Do not cover or hide your mouth because listeners will want to watch you as you pronounce your words. This helps them figure out what you are saying in many cases. 4. Do not mimic how the mentally challenged speaker pronounces words, in a misguided presumption that he or she will "understand" if you speak like he or she does. This does not make you easier to understand. It will confuse your listener and may give the wrong impression about your sensitivity to his or her handicap. 5. Avoid running words together. For example, don't say "Do-ya wanna eat-a pizza?". One of the biggest challenges for listeners is knowing where one word ends and the next one begins. Give them a small pause between words if they seem to be struggling. 6. When possible, opt for simple words instead of ones that are complex. The more basic a word is, the better the chance is that it will be understood. "Big" is a better choice than "enormous" for example. "Make" is a better choice than "manufacture." 7. Avoid speech complexity which is beyond your mentally challenged listener's comprehension level. Use simple subject-verb-object statements with the significantly retarded. More mildly retarded people may be able to handle more complex forms, such as joined independent clauses. 8. Look them in the eye. It lets them know that you care about what you are saying. Although they may rarely make eye contact with you, try to act like you really are interested in what they are talking about. TIPS • •

Don't treat them as inferior. It really says something about you if you treat them like dirt. Patience is the key.

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Be aware that you must listen and observe the person you are speaking too. In most cases communicating with a person with a disability is very much like learning how to understand an accent. Be ready to adjust your comunication style in a respectful way when necessary. Treat them as close as possible as you would a "normal" person, except use ageappropriate words. Otherwise, they may sense something is up. Smile to show them you're enjoying their company. Be aware of the tone of your voice - is it patronising? Are you speaking with the tome you would use for a child? Adjust accordingly.

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Although most mentally challenged people are at a lower "mental" age than their physical development, be careful not to enrage one that is significantly more physically developed than you. A six-foot, 200 pound man will still likely have more strength than you, regardless of his mental capacity. Remember that a mentally challenged person, even a 6 foot, 200 pound man, is very unlikely to be dangerous at all. One should not feel the need to take any additional precaution when dealing with a mentally challenged individual than one would with any stranger. Remember that they function differently than you do. Do not be surprised by a slightly different reaction than what you are used to.