DEAFBLINDNESS Chapter 1 Concept and Meaning of Deafblindness

eafblindness is the combination of significant individual, the term ‘deafblind’ is now used Dauditory and visual impairments in a person. (Aitken, 2000). These dual sensory losses vary in severity from Deafblindness is a unique disability; it has person to person and do not necessarily lead to total its own concepts and terminology, its own methods deafness and/or total blindness. It is entirely of assessment and means of education, and its own possible that the person will retain some useful modes of communication, which distinguishes vision and hearing. However, in combination, these “deafblindness” from deafness and blindness. impairments of the distant senses causes serious Deafblindness is not a medical concept, developmental delays in the child, affecting surprisingly; medical literature makes few cognitive development, social development, references to deafblindness. It is a developmental acquisition of communication and language skills, concept which helps us to understand the nature orientation and mobility. and the extent of a disability consequent to A combination of visual and hearing deafblindness. Because 95 percent of what we learn impairment causes such severe developmental, comes through our eyes and ears, deafblindness communication and learning needs that the person leads to difficulties in communication, mobility, cannot be educated in special education programs and in accessing information. meant for the hearing impaired, for the visually Deafblind people fall into four groups: impaired or for severe disabilities. Supplementary 1. Those who are born deaf and blind, assistance would be required to address their which can happen if the mother, inter unique educational needs consequential to the alia, contacted Rubella (German concurrent impairments of vision and hearing. Measles) during pregnancy. Deafblindness leads to a severe disabling 2. Those who were born deaf and then lost condition caused by combined losses in hearing their sight. This is often caused by the and vision. A deafblind child cannot be thought of Usher Syndrome – deafness followed by as blind and also deaf, nor as deaf and also blind. a decrease in sight because of retinitis Various terms have been used in the past to refer pigmentosa (tunnel vision). to this heterogeneous group of population. Earlier, 3. Those who were born blind and then the term ‘deaf blind’ or ‘deaf-blind’ was used. lost their hearing. However, keeping with the belief that impairments 4. The adventitious deafblind, as a result in both hearing and vision have, not an additive, of old age, or through an illness or but a multiplicative effect on the affected accident later in life.

67 Deafblindness and Communication may place their hands on the hands of the person Quite a few deafblind people still have a little signing to them to help recognise the signs through useful sight and hearing, which can be improved touch. by wearing glasses and/or through hearing aid Other deafblind people who have either very usage. However, conditions such as excessive limited or no sight or hearing at all, need the background noise, poor illumination, depriving speaker to communicate with them on the palm utility of visual cues, insufficient knowledge in of their hand. One-way is to trace out the letters hearing aid usage, poor initial selection of the of each word in block capitals, one on top of the instrument may limit the utility derived from other. This is simple but the drawback is that it is wearing hearing aids. slow and also a person who has been blind all his/ Deafblind people who were born deaf or her life may not easily recognise the letters as they went deaf in early years may depend on Sign are more used to reading Braille. Language, rather than spoken language. Those who A quicker method is called ‘Deafblind have some remaining sight may still be able to see manual alphabets’ and is like the finger spelling Sign Language at close quarters. If they can’t, they used in Sign Language, but placed on the hand. Different letters are spelt out by touching specific areas of the fingertips and palm of the deafblind person. For example “A” is made by touching the person’s thumb. Deafblind manual can be learnt quickly. With practice, it may be possible to have a conversation at a reasonable pace by using this type of finger spelling. Sadly, many people don’t learn this easy method of communication. If they meet a deafblind person who uses it, there may be a total breakdown of communication, which is frustrating and embarrassing for those involved.

Deafblindness and Mobility Finding one’s way from one place to another is difficult enough for someone with little or no sight, but it can get so much worse when the person has little or no hearing to help them find their way. Crossing a road when you can neither clearly hear nor see the traffic is extremely dangerous. The problem is made worse by the poor balance that Quick signs: For ‘YES’ two many deafblind people have who find difficulty in taps on the palm of the hand. For ‘NO’ or for erasing an walking without someone beside them to help. error, a rubbing out movement Whereas blind people use a white cane to show across the palm. they have a problem with their sight, deafblind Figure 1: Sign Language people use the same white cane but with red bands

68 around it, which shows that they have a loss, of • Blind and profoundly deaf. hearing as well as sight. • Blind and severely or partially hearing impaired. • Partially sighted and profoundly deaf. Deafblindness and Accessing Information • Partially sighted and severely or partially hearing impaired. A lot of important information appears in small print posing difficulties to the deafblind. For “The term, ‘children with deafblindness’, means those who have some sight left may need much children and youth having auditory and visual larger print to be able to read. Others may need it impairments, the combination of which creates such severe in tactile form such as Braille or Moon which they communication and other developmental and learning can ‘read’ with their fingertips. Those who have needs that they cannot be appropriately educated without adequate hearing, may require audiocassette or special education and related services, beyond those that compact disks. would be provided solely for children with hearing impairments, visual impairments, or severe disabilities to Definition of Deafblindness address their educational needs due to these concurrent “Deafblindness is the condition of having little or disabilities.” no useful sight and hearing. As with the word ‘deaf ’, it There is not yet one generally agreed can be capitalized to indicate that it is a culture; some definition of deafblindness, but most of the prefer the spelling ‘Deafblind’. The most well known definitions include the following characteristics in deafblind person is the author, activist and lecturer Helen the deafblind: Keller.” Deaf-blind people have an experience quite • Simultaneous presence of defective distinct from people who are only deaf or blind vision and hearing impairment which and not both. may vary in degrees. Federal Definition of Deafblindness – • Does not imply total loss of either vision USA or hearing. “Concomitant hearing and visual impairments, the • Communication is most severely combination that creates such severe communication and affected. other developmental and educational needs that they cannot • Highly individualized training is needed be accommodated in special education in programs solely to cope with the condition. for children with deafness or children with blindness.” FR • The world is much narrower as the Dept. of Education, 34 CFR Parts 300 & 303, Vol. 64, distant senses are affected, and it is No. 48.3/12/99 usually within the arm’s reach. Defining the term ‘Deafblind’ • Affects person in totality. “Deafblindness” is a condition presenting other • Associated medical conditions with difficulties than those caused by deafness and blindness. It hearing and visual loss may be present. is an “umbrella” term, which can include both children and adults who are:

69 Description of Deafblindness (person) will have to be decided individually. In The term ‘Deafblind’ is used to describe a functional terms these children and young people “heterogeneous group of (people) who may suffer from may include those with: varying degrees of visual and hearing impairment, perhaps • Moderate to profound auditory and significant combined with learning and physical disabilities, which visual impairment. can cause severe communication, developmental and • Moderate to profound auditory and significant educational problems”. visual impairments and other significant {Department of Education Services (DES) Policy disabilities. Statement (March 1989)} • Central processing problem of vision and Source: Quality Standards in Education Support hearing. Services for Children and Young People who are Deafblind/ Multi-Sensory-Impaired, Sense, UK, page 5. • Progressive sensory impairment. • A significant visual impairment; and a possible A precise description is difficult because the loss of auditory processing mechanisms degree of deafness and blindness, possibly (associated with severe physical disabilities or combined with varying degrees of other disabilities, severe cognitive disabilities) and severe are not uniform, and the educational needs of each communication delay.

70 Chapter 2 Historical Perspective

he most famous deafblind person in history, more than 100 years before the Special Schools for THelen Keller, the American author, the Deaf and for the Blind was established in France campaigner and lecturer was born with sight and in 1760 and 1784, respectively. Dr. Fartell’s story hearing, on 27 June 1880 in Tuscumbia, Alabama. was published about 200 years before Ms. Laura She lost both senses at the age of 19 months Bridgman became the first deafblind and mute to consequent to a bout of fever. Unable to acquire the use of language in 1837 at Perkins communicate, she became a very difficult child and School for the Blind. The breakthrough at Perkins her parents had problems controlling her School marked the beginning of education of behaviour. However, all of this was to change when deafblind in the world. Helen, six years old was introduced to Annie In 1842, Charles Dickens covered the Sullivan, her tutor. With Annie’s assistance Helen achievements of Laura Bridgman and Perkins became the first deafblind person to go onto higher School in his “American Notes”, which influenced education, graduating from the prestigious many educators in the disability field in Europe Radcliffe College in Massachusetts with a Bachelor and America. Soon deafblind children started of Arts degree. finding place in schools for the Blind or for the Helen Keller is remembered even today, but Deaf, i.e., France (1860), Sweden (1882), Germany she was not the only deafblind woman to be (1887) and Finland (1889). By the end of the 19th educated successfully. The American public was century, a considerable amount of work for the already familiar with the achievements of Laura deafblind was being carried out in various parts of Bridgman, who was born in 1829, half a century the world, but there was nothing in Asia at this before Helen Keller. Laura was the first deafblind point of time. In 1954, “Sense” was conceived in person to learn to read and write under the the United Kingdom, by Margaret Brock and guidance of Dr. S.G. Howe at the Perkin’s Peggy Freeman, two mothers both of whom had Institute. Like Helen, Laura became one of the deafblind children. most famous women in the world and was hailed It was more than 300 years after the first a ‘miracle’ in newspapers and magazines. mention of “deafblind”, that India saw a unit for While tracing the history of people with deafblind in the Helen Keller Institute for the Deaf deafblindness, the first mention is made in “The & Deafblind, Mumbai (1977). Till 1997, there was Story of Blindness” written in 1648 by Dr. Gabriel very little awareness about deafblindness in India. Fartell in which he narrated that an Englishman, In this vast country there was only one school, the Dr. John Bulwar, wrote that a person born both Helen Keller Institute for Deaf and Deafblind, deaf and blind could be taught to speak. This was catering to the needs of 23 deafblind students. The

71 situation was such that neither the Government, • Helen Keller (1880-1968) - Author, Activist nor organisations working with the disabled people and Lecturer. were aware of the deafblind population. Lack of • Alice Betteridge (1901-1966) - First Deafblind awareness of this unique disability meant, and Australian to be educated. She was a Teacher, continues to mean, that many deafblind people are Traveller, and Writer. without support or labelled incorrectly (for • Jack Clemo (1916-1994) - British Poet who example, as severely mentally retarded) and receive became deafblind in adulthood. inappropriate support. This situation was recognized by Sense UK, the world’s leading NGO • Robert Smithdas (Born 1925) - The First for the deafblind. deafblind Person in the US to receive a Master’s Degree. After a thorough needs assessment and • Richard Kinney - Educator, Lecturer and consultations with stakeholders in India, Sense Poet; President of the Hadley School for the International (India) was registered as a Trust in Blind from 1975 to 1979. 1997. The aim of Sense International (India) is to support the development and establishment of Some Indian Achievers more services for the deafblind throughout the • Dr. Rajendra Singh Sethi {First deafblind country. Since then, Sense International (India) has person to acquire a doctorate degree. Now a been closely involved in the creation of services Board Member of National Trust and for the deafblind in the different States in India. Governing Council member of Sense Through local disability NGOs it is already International (India)}. supporting 36 projects in 19 states of India. • Anindyo Bhattacharji (Deafblind man lives in Deafblind People in History New York and works in Helen Keller National Centre). • Hieronymous Lorm (19th Century) - Inventor and Novelist. • Rajesh Mehta (a deafblind man in Limbdi, Gujarat who owns and manages a sweetmeat • Laura Bridgman (1829-89) - First Deafblind shop). child to be successfully educated in USA. • Zamir Dhale {Young deafblind man brought • Mary Bradley (Time and Place of Birth not up in Mumbai and works as Advocacy Officer known, Died in 1866). in Sense International (India)}. • Yvonne Pitrois (1880-1937) - French Biographer.

72 Chapter 3 Causes of Deafblindness

n India, disability sometimes is referred to as The main cause of deafblindness in children Ithe “result of wrong doings in the past life”. This in the developing countries is rubella contracted myth is abating due to the awareness created by by the pregnant mother. Other causes include various Government and Non-Government premature birth, birth trauma and various organisations. The cause for multi-sensory syndromes. These are discussed below. impairment and deafblindness is more or less similar to the causes for single category disability. Genetic Conditions Some of the most common causes of A number of genetic conditions can give rise deafblindness are Usher’s Syndrome, Congenital to deafblindness. Usher’s syndrome, for example, Rubella Syndrome, CHARGE Association and Old is caused due to a gene irregularity, present from Age. Other causes are severe head injuries; birth with effects appearing gradually over the traumas; sexually transmitted diseases, such as years. Hearing impairment is usually present from syphilis and AIDS; drug overdosing; medical errors birth or soon after and can range from moderate and self inflicted injuries. to profound. Visual impairment is progressive and can occur in late childhood to early adolescence. Four primary causes of vision and hearing How much sight will be lost cannot be predicted. loss: • Hereditary/Chromosomal Disorders. Infections • Prenatal viral/bacterial diseases, or Rubella contacted during pregnancy used to harmful chemicals (Teratogens). be a major cause of deafblindness before the introduction of vaccination programs in developed • Complications at birth. countries but it is still a major cause in developing • Postnatal injuries and/or illnesses. countries. Other infections, affecting the foetus, Deafblindness is not caused by a single include cytomegalovirus (CMV) or toxoplasmosis. condition. People can be born deafblind, possibly Meningitis is an example of an infection, as a result of infection, a genetic syndrome or birth which can cause impairments at any time in life, trauma. This may result in congenital depending on the strain and severity of the deafblindness. Acquired deafblindness refers to infection. Some particular types of meningitis affect instances where a person becomes deafblind later young babies more than other age groups. in life, as a result of a progressive condition or through infection, accident or due to the process of ageing.

73 Rubella and Congenital Rubella Syndrome Damage or disability unrelated to rubella is always Rubella, a childhood disease, caused by a possible. Rubella may damage the eye, resulting in virus, may be transmitted from person to person cataract (opaqueness of the lens) a typical signs of as droplets in air through coughing and sneezing congenital rubella. One eye may escape harm or or through close contact. A person with rubella is both may be affected. Sometimes microphthalmos a carrier of the infection for about two weeks, or (abnormally small eye or eyes) may be present as occasionally little longer, before the rash appears. well. Pigmentary retinopathy (speckled colouring However, an affected person may be unaware that of the retina) is very common in children with he is infected and feel perfectly well and may not congenital rubella, but does not affect the sight. even develop a rash. If someone has been in contact Hearing loss, which may be conductive or sensor- with an infected person, there may be an incubatory neural, is one of the commonest results of period of two to three weeks, before the infection congenital rubella and may often appear as the only becomes manifested. defect. An infected person may feel generally unwell The organ of Corti, a part of the inner ear is for a few days, perhaps have swollen glands, a slight often the part that is damaged by rubella. Hearing temperature, or a sore throat, and may get a rash loss may be mild or severe, unilateral or bilateral which starts around the face and can spread to and may be progressive. lower parts of the body and the limbs. Some people, Heart abnormalities are sometimes seen in particularly women, may experience pain or babies with congenital rubella and may include discomfort in their joints. Other people may be failure of the duct between the pulmonary artery carriers, but show no signs or symptoms of having and aorta to close (patent ductus arteriosus); rubella. opening(s) in the dividing wall between left and A woman who contracts rubella in pregnancy right ventricles (ventricular septal defect), or other does not always pass it on to the foetus; the earlier heart defects. in her pregnancy she has the infection, the more Many rubella babies are underdeveloped in likely the transmission and a consequential, the womb. Perhaps the infected placenta is not able identifiable damage. Contact up to the 18th week to function fully, affecting nutritional supply to the of pregnancy is particularly serious. The pathway foetus. The rubella virus may also be directly of the virus is through the maternal blood stream responsible for slowing down the foetal rate of to the placenta and to the foetus. If transmission growth. The rubella virus may also cause mild to does occur, then it will happen just before or severe neurological problems. Learning disabilities, around the time that the woman gets the rubella mental retardation and seizures may also occur. rash. Occasionally, rubella in pregnancy can result Congenital rubella can affect people in in miscarriages or stillbirths. different ways: some may develop problems later Babies with congenital rubella have the virus in life, including deterioration of hearing and vision circulating in their bodies for much longer than and endocrine dysfunction. People with congenital adults or children with the acquired infection. Thus rubella should undergo regular health check-ups, a congenitally affected baby can remain a carrier including vision and hearing assessments for six months to a year, or occasionally even longer. throughout their lives. According to World Health

74 Organisation weekly Epidemiological Record, No. 20, of movement), intracranial and other calcifications May 19, 2000, 75, 161-177 there is an estimation (the deposition of calcium within organic tissue), that more than 100,000 CRS cases occur in the mental retardation and seizures. In some cases, developing countries alone. Congenital rubella is hearing impairment may be the only sign of the preventable with the rubella vaccine, available as a CMV infection while others may have severe sight single vaccine or the combined measles, mumps problems as well. Most children with congenital and rubella (MMR) vaccine. Mass vaccination CMV are healthy and if not tested at birth will go programs are being implemented in many undetected. It is not known why some are affected countries. and others are not. Pre-natal diagnosis is not possible as at present there are no tests available or Cytomegalovirus a vaccine. Estimates suggest that of 600,000 babies Cytomegalovirus or CMV is a potential born in England and Wales perhaps 2,000 will have prenatal cause of deafblindness. In the UK Census congenital Cytomegalovirus and of these about 200 Head Office, database records 7 people Deafblind have sensory problems as a result (Deafblind through CMV compared to at least 280 Deafblind International Review, July–December 1995). through rubella (Deafblind International Review, July–December 1995). Cytomegalovirus means a Toxoplasmosis large cell, a commonly occurring virus belonging Toxoplasmosis is caused by a parasite called to the herpes virus group, which includes chicken toxoplasma gondii. It forms cysts (hard-walled pox, cold sore and glandular fever viruses. The microscopic forms), which are passed in the faeces infection may pass unnoticed or there may be mild of its primary or main host, the cat which flu-like symptoms in the pregnant mother. Once contaminate gardens and vegetables in their infected, the virus remains dormant. The virus can wanderings. Even though they bury their faeces, become active again at intervals. The virus is spread one can still come into contact with them, resulting through saliva, urine and other body fluids. CMV in their eating the cystic form of toxoplasmosis. is very difficult to avoid. It may be caught from Toxoplasmosis can affect almost all animals, someone who shows no signs of being ill. including humans. Most animals carry it. Under- CMV, like the rubella virus, can cross the cooked meat and the increasing consumption of placenta and affect the developing foetus. If CMV unpasteurised goat’s milk are two other potential infects a pregnant woman, the foetus may be causes. Luckily the resulting infection is usually damaged. Only 10% of the affected babies may very mild, it can be a glandular-like illness or display symptoms and in only half of these children produce symptoms of a mild flu. However, in a the disability will be serious. It is only the first or pregnant woman, the infection, though not primary infection during pregnancy, which can afflicting her, can cause congenital abnormality in cause problems. It is very rare that reactivation of the unborn baby up to 40% of the cases. Of these, CMV during pregnancy damages the foetus. 10 per cent are likely to be seriously affected (Deafblind International Review, Problems resulting from congenital Jan.–June 1997). cytomegalovirus infection vary, but may include If the disease is caught early in pregnancy, it jaundice, bloodspots on the skin, enlargement of is less likely to cross the placenta. If it does, the the liver or spleen, spasticity (disordered control consequences are more serious. If the pregnant

75 woman catches the infection later, it is more likely They can also damage parts of the auditory system. to cross the placenta but the effects on the foetus The injury can have many different effects that are are less severe. difficult to understand. Other kinds of trauma, for instance, a stroke (a cerebral haemorrhage) can Babies born with toxoplasmosis (usually result in deafblindness. when infected between the third and sixth month) may develop severe symptoms such as Age-related Causes hydrocephalus, calcification in the brain and chorioretinitis (damage to the retina). Epilepsy and The most common cause of deafblindness deafness can also result. Most worrying in this is simply aging. After the age of around 50 years; regard is the delayed manifestation of the eye hearing and visual impairments become more disease up to the late teens. common leading to senile deafblindness. The Public Health Laboratory in Swansea, Syndromes UK, estimated in 1988 a rate of infection of two per 1,000 pregnant women. If the French figures CHARGE Association of 40% of mothers passing infection to their babies CHARGE Association is a multi-featured are the same in the United Kingdom, it could mean disorder characterised by a unique combination of that about 480 babies a year are affected in the UK diverse abnormalities, first described in 1979 but (Deafblind International Review, Jan.–June 1997). the acronym ‘CHARGE’ was first used in 1981. This is, therefore, a relatively recently recognised Most adults recover spontaneously from condition. toxoplasmosis without any treatment, although it is possible to treat the condition using sulpha drugs. The acronym ‘CHARGE’ is used to describe Eye treatment of toxoplasmosis infections is more a heterogeneous group of children who exhibit at complicated, and pregnant women must be given least four of the features of CHARGE, including a different drug since the usual one is too toxic. one or other of choanal atresia and colobomata No treatment manages to eradicate all cysts. This (Deafblind International Review, Jan. - June 1996). means that an infection, which may appear to have The combination of critical features was identified been cured, can recur later. as: C – Coloboma, is an ocular deformity, the Birth Trauma absence of a part of the eye. Visual Visual and hearing impairments can arise as impairment may or may not be present. a result of problems at birth or soon after. Such Coloboma of the iris may lead to reduction children may have additional, impairments such in the ability to adjust to bright light; as severe physical defects, learning disabilities and Coloboma of the retina will create a blank communication problems. area in the child’s visual field. Anophthalmos or microphthalmia may also be present. Accidents or Other Trauma Any accident involving head injury can H - Heart defects, include tetralogy of damage the parts of the brain that deal with Fallot, patent ductus arteriosus, atrial and processing information through sight and hearing. ventricula septal defects, and others.

76 A - Choanal Atresia, a narrowing or a Goldenhar Syndrome blockage of the passage between the nasal Goldenhar Syndrome was named in 1952. cavity and the naso-pharynx, is one of the Dr. Goldenhar wrote about a number of facial major criteria for diagnosis. The blockage problems that tend to occur together. The may be unilateral or bilateral, membranous syndrome was named after him. It is quite variable or bony. with some common abnormalities and a variety of R - Retarded growth, may become terms have been used to describe this disorder. manifest as the child matures. The majority According to medical literature, when of children with CHARGE Association are malformations primarily involve the jaw, mouth below the third percentile of physical growth and ears, and, in most cases, affect one side of the norms. body (unilateral), the disorder is often referred to G - Genitalia anomalies, is the incomplete as Hemifacial Microsomia. If abnormalities of the development or under-development of the vertebrae and the eyes are also present, the disorder external genitals which is more common in is often called Goldenhar Syndrome. Within males, very rarely seen in females. medical literature, the term Oculo-Auriculo- Vertebral (OAV) Spectrum is often used E - Ear anomalies can affect the external synonymously with Goldenhar Syndrome and ear (loop or cup shaped, large, small or Hemifacial Microsomia. However, due to the absent), middle ear (ossicular malformations, complexity and varying severity and expression of chronic serous otitis, stapedius tendon OAV Spectrum, some researchers suggest that anomalies), and/or the internal ear (especially Hemifacial Microsomia and Goldenhar Syndrome high frequency sensori-neural hearing loss). actually representing different aspects or levels of Mixed hearing loss (i.e. conductive loss with severity of OAV Spectrum. Goldenhar Syndrome sensori-neural loss) is the most common is also considered a variant of Cranofacial form of hearing loss in CHARGE Microsomia, which is the second most common Association. Malformation or absence of the facial birth defect after cleft lip and palate. semi-circular canals is fairly common. Goldenhar is more prevalent in males (70%) Additional anomalies associated with this condition and affected individuals may have asymmetrical are: small ears and mouth with hypoplasia of the jaw, Abnormal tongue size, cleft lip and/or palate, mouth and eyes (with epibular dermoids) facial palsy, renal abnormalities, malformations of (Deafblind International Review, Jan.–June 1998). In the larynx, atresia of the oesophagus addition, abnormalities often involve the skeletal, with tracheosophageal fistula and skeletal cardiac, renal and the central nervous systems. abnormalities. Historically, the medical profession Hearing varies from near normal to severe loss; considered mental retardation a characteristic visual defect includes diplopias of various degrees. feature of CHARGE Association. Recent literature Moderate learning disabilities may occur in about suggests this to be an outcome of the other 10% of the cases. combined anomalies rather than as an integral There is very little evidence to explain why anomaly of the Association itself. Goldenhar Syndrome occurs. In most cases, it

77 seems to occur randomly, with no apparent cause; between 3 and 6 percent of the deaf there is no family history. However, in some cases, community. Currently, the following three types positive family history has suggested autosomal of Usher Syndrome are recognized: dominant or recessive inheritance. In addition, Type I some researchers suggest that the disorder may be Born profoundly deaf, has balance problems, caused by the interaction of many genes, possibly Night blindness in early childhood. in combination with environmental factors – multifactorial inheritance. Children with Type II Goldenhar Syndrome have normal intelligence and Born hard of hearing, has no balance can look forward to a long life. problems. Blind spots by teens. Legally blind in early adulthood. Usher Syndrome Type III Usher Syndrome is named after Dr. Charles Born with good hearing or mild hearing loss, H. Usher, who noticed the correlation between has some balance problems. Night blindness in the two conditions, hearing loss combined with childhood, blind spots by early adulthood, legally retinitis pigmentosa. Usher Syndrome affects blind by middle age.

78 Chapter 4 Incidence and Magnitude of Deafblindness

ncidence of deafblindness is very low and exact deafblind people in the United States (from birth I data and number is not known. However, the to advanced age). generally accepted estimates are that approximately In India, it is estimated that the number of 10% of the general population has a hearing loss, persons with various disability is over 90 million. out of which approximately 1% is also blind or has There is no data available regarding the size of the a serious loss of vision. According to Joseph deafblind population in India. As of date, there has McNulty, Director of the Helen Keller National been no comprehensive study or research done to Center, more than 70,000 deafblind people live in determine the true incidence of deafblindness. the United States. (One must keep in mind that Estimates, based on information gathered from many more deafblind people exist than have been community-based projects, indicate that there officially recorded.) could be more than 400,000 deafblind people in Think Dual Sensory published in 1997 by the our country. Overall we can predict that 0.04% of UK Department of Health suggested that some general population have deafblindness as disability. 2,000 people in Scotland could have some degree of deafblindness. Latest figures show that there are Diagnostic Services 1,983 people registered as deafblind in Scotland. The diagnosis of the condition of Sense, the National Deafblind and Rubella deafblindness can be made early by the clinical and Association, has been involved in conducting the related service professionals. The ophthalmologist latest survey in the UK. These surveys produced and the audiologist can detect visual and hearing problem at birth. Today with modern equipment, an average number of 21,000 deafblind people of detection at birth is possible. Moreover, various all age groups in the UK (approx. 40/100,000). service providers for single category disability in Survey findings ranged from 30/100,000 to course of time can suspect additional sensory loss 58/100,000. among the children they have assessed and can refer Presently, the exact figure of deafblind people the child for evaluation for additional disability. in the United States is unknown. The National But the service providers and the Deafblind Children Count Registry, sponsored by professionals must be sensitised and made aware the National Technical Assistance Center, a of the dual sensory impairment of deafblindness. program of Helen Keller National Center, Only then will they consciously and actively screen estimates that there are 10,000 deafblind children for deafblindness. The confirmation of the in the U.S. aged birth to 21. Based on these disability condition is on the basis of clinical statistics, there are approximately 40,000 to 70,000 evaluation by respective professionals. Usually

79 early identification can take place in special schools deafblind cases for rehabilitation. This module is for the blind, or in school for the deaf or in school approved by Rehabilitation Council of India. The for the mentally retarded as most of the cases of Programme is implemented in various States of deafblindness usually are misdiagnosed and sent the country under the direct supervision of a State to these special schools. Implementation Committee (SICOM) constituted under the Chairmanship of the State Health There has to be active screening for early Secretary or a Designated Officer. identification and early diagnosis of deafblindness. Usually low incidence disability like deafblindness An Apex Co-ordination Committee is also is hidden and only active screening of population constituted by the RCI to co-ordinate, monitor and can help discover deafblind cases. It is resource- evaluate program implementation at the country intensive to do active screening at community level level. Under this scheme, Sense International for identification of deafblind cases. (India) has made a module on “Deafblindness”, To detect deafblindness effectively, the which is part of the orientation training of medical screening must be done on specific populations officers to manage disability issues related to such as children with one sensory disability in deafblindness. It is only a secondary attempt for schools for the blind or in schools for the deaf and prevention and only a medical approach of also in schools for the children with Learning management, if early cases are detected. Disability and Multiple Disabilities. Institutes like Early intervention and prevention pay Blind People’s Association, Ahmedabad; L. V. substantial dividends to infants as well as to their Prasad Eye Institute at Hyderabad; Helen Keller families and society at large. In all likelihood, many Institute for the Deaf & Deafblind, Mumbai; infants who, in the past, grew up disabled could Clarke School for the Deaf and Mentally Retarded, have developed normally if appropriate preventive Chennai; National Association for the Blind, steps had been taken early in their lives. Delhi; Spastic Society of Tamil Nadu, Chennai; Additionally, people with disabilities are far less National Institute for the Mentally Handicapped disabled if effective interventions have been applied (NIMH), Secunderabad; Ali Yavar Jung National from birth. Institute for Hearing Handicapped (AYJNIHH), Mumbai; National Institute for the Empowerment Aims of intervention programs, for infants of Persons with Multiple Disabilities (NIEPMD), with deafblindness or for those at risk, are Chennai; Holy Cross Service Society, Trichy are multifaceted. Goals include diminishing the effects some of the places equipped to do this kind of of dual sensory loss or the disabling condition on diagnosis. There are many other institutions and the child’s growth and development and organisations in our country where early detection preventing, as much as possible, the worsening of of this condition may take place. the at-risk condition. Timing is critical in the delivery of the interventions. The saying “the earlier, Early Identification and Prevention the better” is very true. Moreover, early intervention may be less costly and more effective than National Programme on Orientation of providing services later in life. Medical Officers Working in Primary Health Centres to Disability Management has a chapter Over the past decade, there has been a on deafblindness so that as medical officers at growing recognition of the educational, social and primary health centres one can identify and refer health needs of young children with disabilities in

80 our county. Classic studies in the behavioural Dr. Kerr Love in 1910) “Blindness cuts us off from sciences from the 1960s and 1970s indicated that things, but deafness cuts us off from people” (Personal early stimulation is critical to the later development record written by herself edited by James Kerr of language, intelligence, and personality. The early Love, 1933, page 68). This potential isolation is one experiences of infants and children who are at risk important reason why it is necessary to engage the provide the basis for subsequent learning, growth, services of persons familiar with the combination and development. of both blindness and deafness when planning an educational program for the deafblind. Doing so Advocates of early intervention services for will help a child or youth who has these deficiencies children at risk believe that intervention should receive an education which maximizes her or his begin as early as possible in an environment that is potential for meaningful contact with her/his free of traditional, categorical labels, e.g., mentally environment. The earlier these services can be retarded, emotionally disturbed. Carefully selected obtained, the better for the child. intervention measures have the potential to lessen the long-term impact of the disability and The challenge of learning language is perhaps counteract any negative effects of awaiting the greatest which a deafblind child faces. It is also the greatest opportunity, since language holds the intervention. The postponement of services may key to make their thoughts, needs, and desires undermine a child’s overall development as well known. The ability to use words can also open up as his or her acquisition of specific skills. worlds beyond the reach of their fingertips through Keeping in mind that Rubella is the major the services of interpreters, books, and an ever cause of deafblindness and many other disabling increasing array of electronic communication conditions related to vision / hearing / intelligence, devices. In order to learn language, children who we must work towards a situation where are deafblind must depend upon others to make vaccination against rubella is available to the masses. language accessible to them. Given that At the moment, there is little or no awareness about accessibility, they face the challenges of engaging rubella, except to a few in cities and towns. in interactions to the best of their abilities and of utilizing the language opportunities provided for Educational Provisions them. Education for a child or youth with deafblindness needs to be highly individualised; the Aims of Education for Children who are limited channels available for learning necessitate Deafblind organising a program for each child that will In the past, children with both visual and address the child’s unique ways of learning and his hearing impairments were assumed to be or her own interests. Assessment is crucial at every profoundly retarded as they were unable to step of development and sensory deficits can easily communicate with anyone. Time has shown, mislead even experienced educators into under- however, that given the appropriate teaching and estimating (or occasionally over-estimating) attention, many of these children can achieve their intelligence and consequently at risk of putting potential never dreamt of before. The overall aim of a school for deafblind children is to enable each together an inappropriate program. child according to his/her ability to become a happy Helen Keller supposedly said (or wrote to integrated member of society.

81 A Philosophy for Educating Deafblind The in-service training for the resource Children teacher in SSA on “Deafblindness” was initiated Keeping in mind what Helen Keller by Sense International (India) in the State of Uttar supposedly said, we understand that – Pradesh with active support and collaboration with “Deafblindness isolates; it cuts the individual off from other the State Government through Shikshit Yuva Sewa people and from the reality of her/his surroundings”. It Samiti, Basti. There is a specific module on stunts physical, emotional, social and intellectual deafblindness prepared by Sense International development. So the educators have to try and enter (India) for the UP Government. A three-month into the lives of deafblind children and into their regular training module on ‘deafblindness’ for in- experiences. We will have to enter into their world service teachers trained in single category and form a relationship with them, so that there is disabilities either on ‘visual impairment’ or in mutual understanding, and then only can we pave ‘hearing impairment’ and currently working under the way for them to come into “our world” and SSA has been made by Sense International (India) share one world. to train them so that they provide educational Appropriate Educational Alternatives for Children and services to deafblind children through SSA. This Youth with Deafblindness syllabus for SSA is recognised by Rehabilitation Council of India. Presently the educational services widely available in our country for deafblind children are Efforts are being made to incorporate the home-based and in 29 special-center based services same in all the state government SSA schemes. in institutions throughout the country. Because of Although most of the deafblind children receive the influence of Sarva Shiksha Abhiyan, the home-based and center-based educational services, opportunity for general education class and some are enrolled in normal schools with the resource class is now also available for the deafblind assistance of the resource room teacher. Some of children. the deafblind adults are now in university programs General Education and in one such instance, Fredrick, a deafblind Inclusive Class young adult from Trichy has cleared his preliminary examination of Indian Administrative Service General Education Class (IAS). and Resource Class Full-Time Percentage of Children having Access to Education Self-Contained Class There are about more then 7,000 deafblind individuals receiving educational services in India Special School as per the report of Sense International (India). Homebound Among them about 1,500 deafblind children are Figure 2: Deno’s Cascade model of educational service delivery for receiving direct support and about 5,500 deafblind special children. children are receiving indirect services through the

Source: From Special Education as Developmental Capital by E. Sarva Shiksha Abhiyan (Education for All Scheme) Deno. Exceptional Children, 37, 1970, 229-237, Council for of Government of India. Exceptional Children.

82 Education of the Deafblind • Educational placements should be selected on The approach to education of individuals the basis of individual abilities and needs. who are deafblind has changed significantly since • Age of onset of sensory impairments, amount the rubella epidemic occurred in the United States of auditory and visual impairments, mode of and Western Europe in the early 1960s. Dr. J. van communication, cognition, and existence of Dijk and Catherine Nelson propagate that prior to additional disabilities are major factors in the epidemic, only incidental successes in determining the appropriate educational educating children who were deafblind had been settings. reported. In the United States, Samuel Gridley • Teachers with specific training are necessary Howe wrote in a detailed manner about his to provide optimal integrated programming student, Laura Bridgman; and Anne Sullivan for students with dual sensory impairments. reported on the enormous educational progress of • There is a variety of appropriate educational Helen Keller. In Norway, Ragnild Kaata, a alternatives for children and youth with deafblind student, was taught to talk; and in France, deafblindness. Marie Heurtin received wide attention for the level of language she was able to achieve. Dr. J. van Dijk • A functional program is integrated into and Catherine Nelson propagate that the methods community life and is based on real life developed in the Netherlands influenced later situations. It must include opportunities to theories and practices in the education of deafblind develop communication, social, recreational children and how these theories have evolved and and leisure skills including pre-vocational/ changed over time. vocational training, transition planning, self- help, domestic skills, orientation and Through the collaboration and sharing of independence within all environments. knowledge from many countries, successful • Integration of appropriate and related support methodologies to teach individuals who are services are necessary for a successful deafblind have increased rapidly since the time of educational program for a student with the Rubella outbreak. This knowledge has deafblindness. successfully been disseminated to many educators around the world. Such collaboration must stay • Various specialists may contribute towards alive as we address new challenges with a low- assessment, direct instruction, or consultation incidence and ever-changing population. for the group. Best Educational Practices for Students with Deafblindness Principles of Educational Programming for Deafblind • Acknowledge your presence. Child • Address children directly. • Early identification of sensory deficits is • Always encourage and motivate. essential to provide optimal opportunities for • Avoid too much help. individuals with deafblindness. • Community based instruction. • Communication is the corner stone of an • Describe things to them. educational plan for a student who has deafblindness. • Functional, age appropriate curricula. • Integration with non-disabled peers.

83 • Integrative service delivery approach. relationships–good or bad–with our family. This • Keep positive attitude and patience. is also true for all children, including deafblind. The development of many skills depends upon the • Non-aversive behaviour management. child’s opportunities to freely and safely explore • Offer help to deafblind child. the environment. Close physical and emotional • Parent involvement. contact has a tremendous impact on the learning • Respecting children. abilities of deafblind children. • Transition planning. From the child’s point of view, the mother’s • Using words naturally. arms stand to represent the whole world. Although there is always a lot of sound and movements Parental Involvement around the child, it is the mothers’ touch, voice Parents and family members play a central and looks that are most meaningful for the child role in the lives of all children–especially those with in the early years of development. As the skills to deafblindness. A partnership between parents and use his eyes, ears and body increases, so does his professionals is very essential for ensuring that world, which expand to include more people and children who are deafblind receive every objects. opportunity to achieve their potentials. By strengthening this partnership, there is a great deal Building up the Partnership of learning for both groups, which help the It is therefore the responsibility of the deafblind child to reach his maximum potential. professional, to help the parents to get more and more tuned to look at the different and unique Parent-Professional Partnership ways in which their child is growing and learning. Just as every child is unique, so is every To help parents and other family members build family. They have their own concerns, worries, an equal partnership with them through the strengths and priorities which must be taken into following: cognizance by the professional. The professionals • Make the family more knowledgeable must respect the family’s concerns. It is also about their deafblind child’s assets and important that the professional respect the family’s deficiencies. need for privacy. It is essential that both parents and professionals have realistic expectations of each • Build more methods and strategies that other’s time and efforts with the deafblind child. can help the family members to get The family’s involvement in their deafblind child’s small, but positive experiences with the daily routine activities helps them to learn as much deafblind child. about their child’s joys and strengths as it helps • Develop more ‘Touch’ and ‘Movement’ the child to learn and grow better. techniques in family members for interacting with the deafblind child. The Importance of Family • Open new ways of looking at their For most of us, the family is the constant deafblind child’s strengths and skills that thread in our lives. Our abilities as adults to be are different from their normal brothers trusting and confident are greatly rooted in our and sisters.

84 • Encourage and support the family to Similarly, teachers have their own national speak up for their own and their network named as ‘Abhi-Prerna’, which brings them deafblind child’s rights in the together to exchange their practices and expand community. their knowledge of ever-changing interventions, strategies and developments in deafblind field Changing Role of Parents in India world over. India is not behind in catching up with With services for deafblind children the developed countries and now there is a core of increasing in the country, there are increased professionals who, specialize on various issues chances for parents to meet with teachers and other related to deafblindness in our country. professionals closely working with their deafblind child on a regular basis. In India, where the Teachers’ Training Programs Individualized Educational Plan (IEP) is being used Recognizing the desperate shortage of to work with the deafblind children, parents are informed and trained staff and the highest priority using their knowledge and priorities to influence training has assumed in enabling the growth of the decisions taken by the professionals for the services, Sense International (India) has future of their children. encouraged the establishment of recognized This is not only true in big cities and special training courses in the past. Sense International centres, but across the country in Community (India) advocates an increase in professional Rehabilitation Programs (CBR) also. Parents have development opportunities and urge the inclusion been meeting other parents of deafblind children of specialist training in all plans for the at local, regional and national levels, through the development of services. Today there are three registered national parents’ network named as teacher training centres in the country providing ‘Prayaas’. One of the common concerns during two-year diploma level course in Special Education such meets is the need to constantly update their on Deafblindness, recognised by Rehabilitation knowledge on deafblindness so that they can be Council of India. equal and true partners in the decision making process for their children.

85 Chapter 5 Manpower Development

uman resource development is the key to Besides the recognised and certified courses Hinitiate and maintain quality services for the mentioned above, a number of informal training deafblind. Since the field is a new one in the activities are being undertaken in the field of country, there is an obvious need for training and deafblindness in the country, a few of the significant increasing the expertise to sustain the different ones being: services and programs. Effective human resource • Awareness training programmes for in- development strategies will prove to be the service single category teachers, backbone for providing consistent services to itinerant/resource teachers, medical deafblind persons. In terms of training professionals, community workers and professionals, the current scenario in the country so on. is as follows: • Orientation programme on • Rehabilitation Council of India deafblindness for teachers working with recognised the first teacher training children having deaf/blind/multi- course in deafblindness in Asia and the handicapped/cerebral palsy/mental National Institute for the Visually retardation. Handicapped (NIVH) certified the said • Specific need-based training on topics course. The course is being currently such as early identification; assessment; conducted at three places: Helen Keller communication; program planning; Institute for the Deaf and Deafblind (HKIDB), Mumbai; The Clarke School classroom management; and so on for for the Deaf and the Mentally Retarded, teachers working with deafblind Chennai; and at National Institute for children. the Empowerment of Persons with • Leadership training for personnel from Multiple Disabilities, Chennai. various organisations who are managing • A component on deafblindness is now different kinds of services for deafblind included in the training of primary and children. secondary school teachers. • Intensive ‘hands-on’ training for • There is a three-month training module workers at the program sites by experts. for the in-service teachers who got The first Deafblind Asian Conference in training in single category disabilities of February 2000 at Ahmedabad set the pace for Visual Impairment or Hearing brainstorming session on the various issues Impairment. concerning human resources development specific

86 to the deafblind field. Similarly, the National different target groups among the deafblind. There Experts Meets (NEM), organised by Sense are many known devises, which the deafblind International (India) have been instrumental in individual needs for smooth functioning and identifying the staff development needs and match assistance. Some of them are listed below: it with appropriate existing training opportunities Daily Living Devices or in creating new training activities. • Braille Slates As the field is emerging, there has been a recurring concern for the need to develop more • Braille Writing Devices formal training programs for the different target • Electronic Calculators groups. The present efforts focus on: • Reading Aids • Formal in-service teacher training for • Rulers and Measures single category teachers to equip them • Other Measuring Instruments with additional skills to work with Educational Devices deafblind children in their classrooms. • Devices for Embossed Graphics • Conducting recognised teacher-training • Educational Materials for Utilization of course on deafblindness through the Low Vision distant learning mode. • Electronic Calculators • Conducting regional teacher training courses on deafblindness. • Mathematics Teaching Devices • Deafblind component to be added as • Music Instruments part of the standard curriculum for the • Pre-School and Primary Educational training of PHC doctors. Devices • A professional development program for • Science Teaching Devices participants from different South Asian Information and Communication countries such as Sri Lanka, Bangladesh, Technology Devices Nepal and Pakistan. • Audio Playback Equipment • Higher education options like B.Ed., M.Ed. course in deafblind promoting • Braille Displays more educational research for deafblind • Braille Editing and Translation Software children. • Braille Stereotypes and Duplicators • Deafblind component to be added as • Closed Circuit Televisions part of the standard curriculum for • Computer Controlled Braille Embossers therapist like OTs, PTs and Speech • Electronic Note Takers and Organizers Language Therapists. • Electronic Reading Devices Present Date Technology • Other Information and Communication As the field is emerging there has been a Technology Devices greater need for developing technology for

87 • Screen Magnification Software Mobility and Orientation Devices • Screen Reading Software • Canes • Special Computer Accessories • Electronic Devices • Speech Synthesizers Professional services for the deafblind in our • Web Browsers for Non-Visual Output country are growing and there are 36 service centres in 19 states of India including the north eastern Low Vision Related Devices states. There is now a greater need for vocational • Distance Vision Telescopes training and gainful employment needs of the adult • Frames, Accessories and Other Aids deafblind population. Moreover, a majority of the deafblind are in the geriatric age group. They need • Hand and Stand Magnifiers with a much specialised service which is very different Illumination from the services for children and young adults. • Hand and Stand Magnifiers without Although there are some services available for the Illumination young, there is hardly any specialised service for • Near Vision Telescopes the aged deafblind individual in the country. • Spectacles and Head-Borne Magnifiers

88 Chapter 6 Role of the Government Organizations and NGOs (Policies, Programs and Activities)

ith the enormous challenges of poverty, The following are some of the achievements Weducation and health facing the country, the which have resulted from direct involvement of disability area has not received the appropriate focus the Government: it deserves, either from the Government or the 1. A module on deafblindness is now added in NGOs. Though the Government has enacted the the curriculum of all primary and secondary Persons with Disabilities (Equal Opportunities, school teachers of single category disability, Full Participation and Protection of Rights) Act in accredited by Rehabilitation Council of India. 1995, implementation still remains a major challenge for all concerned. We hope deafblindness 2. The National Institutes (NIVH, NIMH, will be recognised as a separate category of disability NIEPMD, and AYJNIHH) in the country by the Government. Deafblindness, a combination have now deafblindness incorporated in their of varying degrees of visual and hearing training programme and services. impairments, causes severe problems in 3. Mr. Akhil Paul, Director of Sense communication, mobility and accessing International (India) was one of the Founder information from the outside world, making it one Members of the Board of Directors of of the most isolating of all disabilities, which National Trust for the Welfare of Persons with deserves stand alone recognition. Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. In the present An organised approach towards advocacy has Board, Dr. Rajinder Singh Sethi, who is recently started in this regard. The Government himself deafblind, is a Member. involvement in the development of Sense International (India) as well as of deafblind field 4. National Policy on Disability has right from the beginning was very promising and deafblindness incorporated as a sub-group supportive. The emphasis was always on under multiple disabilities. relationship building and developing connectivity 5. Deafblindness is now included under the with stakeholders. Sense International (India) assistance to disabled persons for Purchase/ consistently followed and propagated same as the Fitting of Aids & Appliances scheme of advocacy process till date. Dissemination and Government of India, where communication exchange of information about the methodology equipments as aid for deafblind persons is and knowledge on deafblindness along with pro- clearly mentioned. active leadership development has enabled the field 6. National Trust Act for the Welfare of Persons of deafblindness to grow in our country. with Autism, Cerebral Palsy, Mental

89 Retardation and Multiple Disabilities has is delivered in the most appropriate languages included deafblindness into its multiple and modes and means of communication for disability categories. the individual, and in environments which 7. Deafblindness is incorporated in the maximize academic and social development”. Disability Management Training of Primary The above is only illustrative; there are more Health Centre (PHC) for orienting doctors results, big and small, on account of the work to various disabilities. undertaken by Sense International (India) since its 8. Rehabilitation Council of India has approved inception in 1997 for the development of services and incorporated deafblindness in the module for the deafblind individuals in our country. The for the curriculum of Caregiver Training phenomenal changes in the field of deafblindness Course. that have been witnessed in the last 10 years have 9. Rehabilitation Council of India has been due to the active and concerted efforts of the recognized a teacher training programme on Central/State Governments and many like-minded deafblindnes. It is a two-year ‘Diploma NGOs. There has been active co-operation and Course in Special Education on collaboration among the different NGOs and the Deafblindness’, under the aegis of the Government bodies towards establishing the National Institute for the Visually various policies and services for deafblind persons Handicapped, Dehradun. that have tried to ensure the rights of this target group. 10. The Sarva Shiksha Abhiyan (SSA), Government of India’s flagship programme Apart from the bold initiatives taken up by for achieving Universal Elementary the Government, the last five years have seen many Education (UEE) has included training and NGOs coming together for the common purpose information material on deafblindness in of reaching out to as many deafblind children and regional languages across the States such as their families as possible. There are now 36 NGOs Uttar Pradesh, Tamil Nadu, Chhattisgarh and in 19 states across the country, which are directly Bihar. providing services to deafblind children and their 11. The Resource Teachers and Coordinators families. These NGOs come from varied disability working in the Sarva Shiksha Abhiyan (SSA) backgrounds such as visual impairment, hearing are being trained on deafblindness through impairment, learning disability and cerebral palsy. local NGOs. Besides the services for deafblind children and their 12. The recommendations of UNESCAP families, these organisations are also actively include deafblindness in the “services for involved in spreading awareness on deafblindness multiple disabled”. and advocating for their rights at the local and regional levels. 13. The UN Convention on Protection of the Disabled Persons’ Rights recognises The local organisations are also involved in “deafblind” children and their needs in the screening and identification of deafblind children Article 24 (Education) and says “Ensuring that in the rural and urban areas of their respective the education of persons, and in particular regions. These organisations coordinate with other children, who are blind, deaf and deafblind, related professionals such as medical doctors,

90 speech therapists, psychiatrists, neurologists, and At the national level, the approach towards mobility instructors to add quality to the services. development of networking among the deafblind There is an active and healthy relationship between people, their families and teachers have led to some the service-providing organisations and other very positive developments including interactions social, government and community groups with between families and organisations across the the aim of bringing in sustainability in the country. The stakeholders in the deafblind sector programs for deafblind children and their families. would continue to learn from both national and international collaborations with like-minded One of the key responsibilities taken up by organisations and the Governments at central and the local organisations is that of training. Each state levels to ensure that every deafblind person organisation has been using its background in the country has access to services which are experience, infrastructure and special expertise in need-based and appropriate. the area of deafblindness to train different workers and professionals. These training activities could With the changing role of families, it is vary from state level meetings and workshops to envisaged that the input of parents and families of specific training for field workers, teachers, deafblind people will be central to further anganwadi workers, PHC doctors and others. development of services for the deafblind persons. The dream for the field of deafblindness in our The positive direction of the deafblind country is: movement has been due to the individual and collective steps taken at both the Government and • Recognition of deafblindness as a separate and the NGO levels. A perennial need is felt to build unique disability. partnerships between the Government and the • Access to need-based services by the deafblind NGOs to ensure smooth functioning and overall individuals. development of activities through efforts made at • Partnerships with state governments; other the right time by the right kind of people and NGOs; INGOs and strengthening networks agencies. of deafblind people, their families and Networking has always been one of the teachers. strongest tools of learning and influencing not • Focussed efforts on HRD for qualified only the international organisations, but also the human resources and sensitized educators national and the local NGOs, which has proved from single disability to the needs of the very beneficial for the deafblind sector. deafblind people. Consequently, organisations have had the • Maintaining quality and improved practices advantage of learning from each other and by involvement of and consultation with collaborating with many established and practitioners, deafblind people and their experienced International agencies such as Sense, families. UK; Hilton-Perkins International, USA; International Council for Education of People with India Deafblind Consortium Visual Impairment (ICEVI); Viataal International, India Deafblind Consortium (IDC) is a Netherlands; and Deafblind International (DbI). group of like minded professionals and parents who

91 are currently engaged in analysis of the current approach. Being able to learn from each other is deafblind scenario in India, in comparison with much valued as an approach through which it has social, economic and geopolitical context. On the been possible to bring about phenomenal changes basis of findings IDC influence current policies of in a short span of time. It is time to look beyond the country for inclusion of the rights of deafblind the present achievements to how it could be further people. It also supports lobbying for specific issues strengthened and the ways in which new related to deafblindness in country. India Deafblind endeavours can be initiated. A few of these are as Consortium stands for: follows: • The benefits of the deafblind people. (a) Identity: The need of the hour is to identify • Promotion of equality of opportunity and deafblindness as a unique category of disability non-discrimination. in all the relevant statutory laws and • Promotion of the rights of the deafblind documents. Such recognition will enable in people for the development of their full looking at and addressing the specific needs potential. of this target group. • Enabling deafblind children and young adults (b) Incidence and Prevalence: Deafblindness as participating members of society within must be taken up as a separate category in their local communities. different surveys, such as the National Sample Survey, Country Census which will indicate • Help deafblind children, youth and their the actual number of deafblind children and families to exercise control over their own adults in our country. Such numbers are lives. valuable in the decision-making process, in India Deafblind Consortium (IDC) planning for human resource development, promotes early identification, diagnosis and service-delivery, budgetary allocation, etc. intervention services. It also recognizes the importance of family life for deafblind persons; (c) Assessment and Evaluation: It is necessary access to communication and care; access to need- to develop a mechanism for valid assessment based educational services; special aids and for use across the country (with meaningful equipment. It also promotes provision of regional variations), for identifying deafblind specialized staff and equal employment persons and their needs. A screening tool will opportunities. It also stands for development of empower even the grass root-level workers independence and promote right to travel. India to identify the deafblind persons in their Deafblind Consortium (IDC) believes in the respective areas which further helps in strengthening of local and regional issues, reaching out to more deafblind persons and empowerment of those in the rural areas and the appropriate target groups. Such promotion of human rights. assessment and evaluation tools could also be utilized by agencies such as the NSSO for the Research & Development purpose of the survey. The deafblind related matters in the country (d) Human Resource Development: More is a new and emerging area one of the highlights professionals from the single category of which has been its professional and cohesive disability areas must be involved in the

92 emerging new field. This would add more various ramifications. The need for preventive content to the work being done with the target measures, care and rehabilitation messages group. Staff development activities will now can be conveyed through appropriate local, need to focus on specific target groups such regional and social communication materials. as CBR workers, special educators, field The Indian movie “BLACK” in which the supervisors, project coordinators and project heroin is cast as a deafblind young lady has directors, medical workers. With a tailor- helped reach and sensitize the masses on made-curriculum, the chances of application deafblindness. of newly gained skills will increase at the same (g) Networking: The field of deafblind in the time follow-up of staff development activities country is one which is small and emerging. will be more effective. It has received much strength and support (e) Philosophy of Deafblind Education: from the related fields of disabilities. It has With the establishment of number of services, also been able to reach its present identity and in the past 10 years, teachers and other status due to its constant attempts to be a part professionals are now confident about the of the international deafblind network. Therefore, the need to form and sustain the basic nature of their work. They have been networking activities both within the NGOs able to respond to the immediate needs of and with the Government sector is of primary both, deafblind children and their families to importance. a great extent. It is time to promote what may be called ‘the Philosophy of Deafblind (h) Advocacy: Striving to develop, support and Education’. sustain programs and services for deafblind persons is important so as to empower the This approach, while it incorporates many deafblind community and their family ideas and practices of all the other disability members to take their own responsibility at areas such as visual and hearing impairment the local, regional and national levels. and learning disabilities, has a set of codes and Advocacy should also affect local self-help good practices that is distinct to the field of groups, social organisations, other related deafblindness. Primarily, this would mean NGOs, parent-support groups, corporate looking at access to communication for and concerns as well as the Government. by the deafblind person. Organizations working in either disability or Some of the steps towards this objective non-disability (developmental) areas must could be by establishing a curriculum collaborate and incorporate component on framework for deafblind children that looks ‘deafblindness’ in their present work. at all developmental and functional tasks from (i) Involvement of Parents: The deafblind the communication perspective. This would individuals, their parents and other family also entail the development of appropriate members being the primary stakeholders in materials in keeping with this philosophy. the services established around the country, (f) Social Communication: The development it is imperative that they be involved in the of appropriate social communication decision-making process concerning their materials is of utmost importance in order to child. Such involvement in the policy making spread awareness about deafblindness and its and program planning will not only make

93 them more realistic, but also incorporate a based educational plan will be replaced with a plan logical monitoring and evaluation mechanism which will empower a deafblind child to exercise in this process. his/her right to his/her education and services. In There are several key initiatives currently the days to come, a more holistic view of being undertaken by government and non- deafblindness with greater inter-sector government organizations. There have been collaboration is envisaged as an outcome of inter- regular workshops on Deafblindness/Multi linking of all sectors of development. It can be Sensory Impairment to orient teachers on the safely concluded that interaction across themes will needs of the deafblind. But there is still an bring a promising future and that there will be urgent and vital need for involvement of other strong partnership through networking among the sectors in order to muster the ultimate agencies and the stakeholders with advocacy and acceptance, equal opportunity, promotion and policy work being focussed. protection of the rights of the deafblind. Conclusions Human Rights The deafblind initiative began with a single We also need to take a look at the human organization for the deafblind, but after almost a rights issues of the deafblind cutting across themes decade we are not alone in realizing our dreams. of gender, socio-economic status, health, From few services a decade ago to at least one education, etc., and respond to the totality with a service centre in the 19 States of India is a testimony developmental view. to the progress made. The partner NGOs and the Government along with Sense International (India) Future Vision and Improvements in the is instrumental in the development of the field to Next Decade its present stage in the country. The future of the deafblind field lies in There is strong movement for the deafblind making bigger impact which comes from stronger in the country which includes committed NGOs network, structured advocacy and policy work, as partners; motivated and active families of the improve service delivery, quality enhancement, deafblind; qualified and enthusiastic teachers; build local capacity and regional lobbying. More trained and concerned professionals, supportive regional focus with increased capacity along with and sensitive Government and the well-informed stronger partners providing leadership on issues deafblind themselves. Promoting good practices will enhance the growth of the field and for the rehabilitation of deafblind people, the development of services for deafblind which could efforts so far are commendable, but falls short of lead to changes in the practices of the special meeting the needs of 425,000 deafblind people in education services. our country. We still need many more services and We see a future where the traditional need- manpower and each one of you can contribute to this in your own ways.

Experts who contributed to the section on Deafblindness Mr. Akhil Paul (Editor) Mr. Bikash Das Ms. Sumitra Mishra

94 References & Bibliography

1. Baldwin, J. (2004). Annual deaf-blind census. The 8. Punani B. Key Note Address – Second National Experts National Technical Assistance Consortium for Meeting, 2002, Organised by Sense International Children and Young Adults Who Are Deaf-Blind, (India). Monmouth: Teaching Research Division. 9. Robbins, N. (1963). Educational beginnings with deafblind 2. Breaking Services – Developing Services for Deaf-Blind children. Perkins School for the Blind, Watertown, People - A report published by the Deaf-Blind Services MA 02172. Liaison Group (1988). Royal National Institute for the Blind; National Deaf-Blind League. 10. Watson, D., & Taff-Watson, M. (Eds.), (1993). Second edition. A model service delivery system for persons who are 3. Deno, E. Special Education as developmental capital, deaf-blind. Arkansas: University of Arkansas, USA. Exceptional Children, 37, 1970, 229-237, Council for Exceptional Children. 11. Wolff Heller, K. & Kennedy, C. (1994). Etiologies and characteristics of deaf-blindness. Monmouth: Teaching 4. Love, James Kerr (ed.) Personal record written by herself, Research Publications. London: Methuen & Co., 1933. 12. Yarnall, G. D. Spring 2002: Teaching Deaf-Blind children 5. Mary, G. Usher Syndrome: Condition Which Affects over 30 years ago. (Unpublished Manuscript) National Hearing & Vision. Sense Usher Services, London. Information Clearinghouse on Children who are Deaf-Blind, Helen Keller National Centre, 6. Miles, B. (July 2002). Overview on Deafblindness, Monmouth, OR, USA. Published by DB-LINK, The National Information Clearinghouse on Children who are Deaf-Blind, Helen Keller National Centre, Monmouth, OR, USA. 7. Miles, B., & Riggio, M. (Eds.) (1999). Remarkable conversations: A guide to developing meaningful conversations with children and young adults who are deafblind. Watertown, MA: Perkins School for the Blind.

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