Inclusive and Supportive Education Congress
International
Special Education Conference
Inclusion: Celebrating Diversity?
1st - 4th August 2005. Glasgow, Scotland
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Inclusive and Supportive Education Congress 1st - 4th August 2005. Glasgow, Scotland |
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Deaf children with additional disabilities in Cyprus
Dr Kika Hadjikakou,
Cyprus Ministry of Education and Culture,
P.O.Box 20653, Nicosia,CYPRUS 1661
kikaha@cytanet.com.cy
1.1 Review of the literature
Deaf children as a population are likelier than hearing children to have one or more disabilities other than deafness. The reason for this is that some causes of deafness are also associated with other conditions (Ogden, 1998; Pollack, 1997). A broad interpretation of the term "deaf" with multiple disabilities implies a hearing loss combined with another disability generally needing services beyond those provided for a child with the single disability of hearing loss (http://clerccenter.gallaudet.edu/InfoToGo/141.html). The prevalence of other disabilities in addition to hearing loss is approximately three times as large (30,2%) in the hearing-impaired population as in the general school population (Pollack, 1997; Ogden, 1998). Connix and Moore (1997:107) stress that the group of deaf children with additional disabilities is “characterized by its high heterogeneity, representing a wide spectrum of sensory physical, emotional, intellectual, social and educational needs.” McCracken (1998:31) stresses that “the major additional disabilities identified within the studies of this population are learning disabilities, visual impairment, specific learning disability (dyslexia), cerebral palsy and emotional / behavioural problem.” Fortnum and her colleagues (1996) identified in their study the following disabilities in addition to hearing impairment: visual problems, neuro-motor problems, cerebral dysfunction, cognitive deficit, cranio-facial abnormality, other systematic disorder, (e.g. asthma, hepatic dysfunction, eczema), named syndrome. The Office of Demographic Studies at Gallaudet College, in their annual survey examining the incidence of children with hearing impairment within the school population across the USA, identified the following categories of additional disabilities: legal blindness, uncorrected visual impairment, brain damage/injury, epilepsy, orthopaedic problems, cerebral disorder, heart disorder, other health impairment, mental retardation, emotional/behavioural disability, specific learning disorder, attention deficit and others (Moores, 1996). McCracken (1998:30) highlights that “future demographic studies are likely to include more categories as a result of increased awareness and acceptance of the many subtle factors that affect the learning process.”
However, our understanding of the nature of this group is incomplete . The interrelationships between hearing impairment and other disabilities are so complex that few professionals have mastered them (Ogden, 2002). It is worth stressing that “without sufficient knowledge of the co-morbidity of, and proper intervention for, these conditions, professional intervention by support services providers can result in more harm than help to a student” (Hardy and Kachman, 1995: 109).
Different studies of incidence vary in definitions and methods of data collection but produce quite similar estimates of the challenge facing services. Martin (1982) reported that the percentage of one or more associated deficits for the different European countries ranges from 21.6 per cent to 43.2 per cent. Similarly, the Annual Survey in the United States highlights that the reporting of additional disabilities is within the 30-33% range (Craig and Craig, 1993). Even more children, (38 per cent of their study sample), in the 1996 study by Fortnum et al., had other clinical and developmental problems in addition to the hearing impairment. Davis and Wood (1992) reported that 35 per cent of their hearing-impaired study group had some additional problems.
Similar studies were carried out in Cyprus; Markides (1990) found out that 25 per cent of the deaf children on the island had additional disabilities (slow learners, severe mental retardation, autism, chronic poor health, epilepsy, heart problems). Hadjkakou (1999) carried out a major epidemiological study in the island, which found that 19.3 per cent (n = 39) of 202 hearing-impaired children born in Cyprus between 1979 and 1990 had some additional disabilities - visual problems (1.4 per cent), physical disabilities (2.1 per cent), mild / moderate learning difficulties (6.5 per cent), severe learning difficulties (1.4 per cent), behavioural problems (n = 1), syndromes (3.1 per cent) and medical problems (3.5 per cent). The researcher stresses in that study that there are strong reasons to believe that minor additional disabilities of some hearing-impaired children in Cyprus have not been detected yet by the appropriate services; that is why the prevalence of children with additional disabilities in that study were lower than those reported elsewhere.
These numbers demand that services have a positive effect for deaf children with additional disabilities. However, a review of the literature yields surprisingly little specific information on educational programs for such children. The fact that there are many differences among children with multiple disabilities adds to the difficulties of providing appropriate programs. It has been stressed that children belonging to this group have different accompanying disabilities; they function at different level and have different ways of learning. The level of the hearing loss and of the additional disability influences their level of functioning. In addition, like that of other deaf and hard of hearing children, the age of onset of each disability, and the age when help/appropriate education is received (http://clerccenter.gallaudet.edu/InfoToGo/141.html). Because of the lack of trained teachers, many programs have not been able to meet the needs of such children. This history of failure makes even more important the need to provide a program, which focuses on the individual needs of each child, breaks skills down into small steps, and provides experience with success.
2.1 Methodology
T he aim of our study was to evaluate the current services, and educational options provided to deaf children with additional needs and to their families in Cyprus, as well as to suggest effective service delivery. Five case studies were carried out with five deaf children with additional disabilities (two with visual impairment, one with specific learning difficulties, one with physical disabilities and learning difficulties, one with physical disabilities and specific learning difficulties). The pseudonyms Mary, Paul, John, Joseph and Sophia will be used for the children, in order to protect their anonymity. For the purpose of our study, the children were observed in their school environment, and at home. Interviews were also taken with the children, their parents, their siblings and teachers.
3.1 Results
This paper describes briefly the historical path of these children, and also highlights in detail the lack of appropriate assessment of their auditory status and additional disabilities, (often leading to misdiagnosis), the restricted educational options for the children and lack of efficient support services provided to them, and to their families.
3.1.1 Case study one - Mary
Background
Mary is twenty years old and was born prematurely, (at 31 weeks); she has cerebral palsy, (spastic diplegia), hearing problems, mobility difficulties and moderate learning difficulties, (mental retardation), most probably following complications of prematurity and perhaps of jaundice. She stayed at the Hospital in the incubator for 35 days and for a period of 15 days out of the incubator. Mary sat unaided by 14 months. Mary’s parents were informed about the condition of their child after 12-14 months when they realised that she faced problems with her legs and could not walk. Soon after the age of fifteen months Mary attended physiotherapy sessions both privately and publicly three times a week. Mary between fifteen months and four years of age crawled or moved on her knees. She started walking after the age of three and a half when she was operated on both legs and the results were excellent. She still walks on her toes.
Diagnosis of hearing problem
Mary has a bilateral moderate hearing impairment, (average 50 dB HL in the better hearing ear at 0.5, 1, 2, 4 kHz) . Mary nowadays has an intelligible oral speech. Mary’s hearing problem was detected when she was five years old, and soon after the identification she was fitted bilaterally with two hearing aids. There was also some delay in speech development, and, at the age of two, Mary had a 10-20 single words vocabulary and no phrases. According to her parents, this late diagnosis was due to the fact that the doctors related her speech problems with cerebral palsy and not with the hearing problem. “When Mary was younger and could not walk, I did not suspect that she had an additional hearing problem even though she could not speak clearly. Before her operation she could not move and she was always near by so she could hear my voice and turned her head towards me when I called her. I suspected the hearing problem when Mary was four years old and she started walking. I called her but she did not turn. After I suspected my child’s hearing loss, we visited a lot of doctors in the private sector. Each of them provided us with a different diagnosis. We even visited a doctor at the hospital but the doctor dropped his keys and my child, since she has a moderate hearing impairment, reacted. Then the doctor told us ‘Your child does not have a hearing problem, since she responded. I don’t have any time to spend for audiograms for a child that can hear.’ I also took her to the School for the Deaf in Nicosia and to Israel but they could not detect her hearing problem because she was not co-operating. The doctors in Israel identified her hearing problem after we visited them for the second time, when Mary was five years old; she was more mature and could co-operate. Nobody suspected the hearing problem before, even though my child was attending speech therapy sessions since she was two years old. I forgot to mention that we visited a hospital in Germany when the child was fifteen months old. They did mobility tests, IQ test but they did not carry out any speech or hearing tests.”
Nursery school
Mary was attending a general nursery between the age of two and six years old, which was “disability friendly” according to her mother. In parallel, between the age of five and six, Mary and her parents attended the parents’ guidance programme at the School for the Deaf twice a week.
Between the age of seven and eight years old Mary attended the pre-school class at the School for the Deaf. Mary’s mother was really pleased with her progress at the school: “my child was helped so much at the School for the Deaf. I couldn’t believe my eyes watching my child achieving so many things. She learned how to speak for the first time. At the general nursery school teachers neither identify her needs nor the appropriate methods for teaching her.” Her teacher recalls from those days: “When I first taught Mary she could not speak at all and could not even have eye contact. I remember that I had to hold her in my arms, in order to gain her attention. I was wondering how I could teach that child. I realized that she loved music. I thought music could offer a lot of advantages to Mary such as the rhythm and the lyrics of the songs. We spent so many hours singing and dancing in the classroom!”
Primary and junior high school
She stayed at the School for four more years and, when she was twelve years old, the integration of hearing-impaired children in Cyprus began. All her classmates were integrated in the general schools and Mary had to follow them since, in the early nineties, few children were attending the School for the Deaf. Her parents spoke with the teachers at the School for the Deaf, with those in the primary school and with the educational psychologist. They all took the decision that Mary should attend a Unit with three more hearing-impaired children adjacent to a neighbouring general school. A teacher of the Deaf was teaching the children Greek and Maths at the Unit, and was supporting them in the classroom for Religion studies, Technology, and Gymnastics. Her teacher at that time recalls “What I recall from that time is the willingness of the hearing children’s parents to accept the hearing-impaired children. There was no prejudice. Parents were inviting the hearing-impaired children to their house. The hearing children were also very friendly.”
Mary also attended the three first classes of the junior high school. She was present in her age-appropriate classroom for some of the day but also received special educational services, (small group sessions), in a withdrawal room with another hearing-impaired child for ten periods per week, (offered by the class teachers), for subjects that are examined at the end of the school year, (e.g. Modern Greek, History, Physics, Mathematics), and for English, (as a second foreign language). A teacher during that period recalls “Mary was progressing quite well. She was sort of a slow learner but she could learn a lot if you modified the curriculum to meet her special needs; for instance if you modified the language in the books, the lesson content, the language of the tests or if you differentiated the delivery curriculum modification of the language of tests, or if you provided the child with written follow-up material. Mary was quite friendly and well accepted by her classmates.” Her mother also pointed out that “I had to study with her during the whole afternoon. Sometimes I had to do her homework myself because she had to copy so many things in her notebook, she was getting so tired, and she could not write any more. I didn’t have any free time for myself. We had to study the whole afternoon. Some of the teachers showed so much understanding and even though my child could not cope with the demands of the general school curriculum, they helped her to pass the classes. The teachers at the Gymnasium awarded her with a prize for her efforts as a pupil and at a school event she read a poem!” Mary had only one close friend who was hearing-impaired while attending the junior high school.
High school
Mary attended the first class of the high school. The difficulties she was facing were insuperable. She stressed out. “I felt so pressed. I could not understand anything. Even though I was studying for so many hours I could not achieve anything.” Her mother also pointed out: “My child was facing so many difficulties. She was not feeling very well. I felt that she agonized for hours without achieving any results, since she could not remember anything.” Her teachers also stated: “The child could not cope with the general school curriculum. Despite the fact she tried so hard, her abilities did not allow her to get far. She could not understand even the most basic things. She only copied in her notebook the notes on the blackboard. She constantly repeated my questions.” Because of the difficulties faced by the child, it was suggested by the Ministry of Education and Culture that Mary should attend a mixed education programme, both at the general school and at the School for the Deaf. Because of the current regulations of the Ministry of Education and Culture, Mary could not get an ordinary high school diploma because of her record of attendance. However, her parents took this decision for the well being of their child. Mary is currently attending the third class of high school at a general school twice a week, (attending only practical subjects such us typing, accounting, office administration), and an adapted academic programme at the School for the Deaf three times a week. This programme is focusing on the individual needs of the child and contains, among others, computer class and practical skills training for future employment in an office, (e.g. use of photocopy and fax machine, record keeping, typing letters). Her parents are really pleased with the child’s programme “the programme that our child follows is really efficient. Our child is happy with the programme, since she is not as overloaded as she was in the previous years. She responds better, and above all she does not suffer. (…) We do not regret that my child attended the general primary school and the general junior high school. We think that inclusion was really beneficial for my child. She really liked talking with the hearing children. Now she gets a bit irritated because the children at the School for the Deaf sign and cannot talk.” Mary has an oral hearing-impaired friend at the general high school and does not socialize very well with the deaf children at the School for the Deaf who primarily sign.
The impact of the additional disabilities and provision of services
It was obvious in the study that, in Cyprus, there were no sophisticated services for the detection of the child’s hearing impairment. Despite the fact that the child was born with a moderate hearing impairment, and did not develop any speech, she was five years old before detection of the impairment. Her mother states “I felt so relieved when my child’s hearing impairment was detected. I knew the reason for her inability to talk. Since I knew the cause, I was able to intervene to help her.” Additional disabilities were identified earlier, but not as early as they should have been; her mobility difficulties were identified at 15 months of age, and her moderate learning difficulties at five years of age! Her mother recalls “I know that the doctors were not effective in detecting my child’s hearing impairment because they attributed her speech delay to cerebral palsy. At that time there were not effective services in detecting additional disabilities.” Similarly, the educational cost was extremely high for Mary. She walked properly when she was four years old, and talked when she was seven. Mary’s mother stated “We lost so much time. I relied on doctors.”
3.1.2 Case study two - Paul
Paul has a severe bilateral hearing impairment, (average 90 dB HL in the better hearing ear at 0.5, 1, 2, 4 kHz), and specific learning difficulties (e.g. no short-term memory, attention problems, retention difficulties, serious spelling and writing problems). At 18 months of age, Paul was fitted bilaterally with hearing aids which provide him with access to all the useful speech frequencies. He also has hypermetropia.
Diagnosis of hearing problem
Paul was eighteen months when his hearing problem was detected in the UK. His mother was the first to suspect the hearing impairment when the child was 7-8 months old. When he started using the walker and got far from me, I was calling him but he would not turn his head to me. I took him to different doctors but they told me that I was wrong. They used inappropriate tests such as the cup and the spoon test. It was only the audiologist at the School for the Deaf who confirmed my fears and told me to go to the UK for further audiological assessments.
Nursery school
Soon after the detection his mother met a teacher of the deaf, who was working privately with young deaf children. When Paul was two years old, he attended, with two other deaf children, group sessions with that teacher. When he was two and a half, he started talking. At three years old he attended a general nursery with hearing-impaired children and he was supported by a teacher of the deaf.
Primary and junior high school
Paul attended a Unit, with three other hearing-impaired children, adjacent to a neighbouring general school. A teacher of the deaf was teaching the children Greek and Maths at the Unit, and was supporting them in the classroom for Religion Studies, Technology, and Gymnastics. His learning difficulties emerged when he attended the primary school. His special teacher recalls “When I first met Paul, I was surprised by his learning difficulties. Despite the fact that he was very intelligent, and had residual hearing, he was exhibiting learning characteristics untypical of the rest of the hearing-impaired children; for instance he could not understand even a simple and short text, his spelling was no good, and when he was writing he omitted letters within the word or words within the sentence. He did not have any short term memory. On the other hand, he was well accepted by his classmates and was very sociable.’ His mother stressed: ‘Paul faced enormous difficulties when he started writing. His expressive language was really limited, and he omitted letters in the words. He never managed to overcome these difficulties. He still can’t remember a lot of things, despite the fact he spends a lot of time studying.”
Paul also attended the three first classes of the junior high school. He was present in an age-appropriate classroom for some of the day but also received special educational services, (small group sessions), in a withdrawal room with another hearing-impaired child, for ten periods per week, (offered by the class teachers), for subjects that are examined at the end of the school year (e.g. Modern Greek, History, Physics, Mathematics) and for English (as a second foreign language). His general teachers at junior high school recall “Paul could not cope with the general school curriculum. Despite the fact that he was studying so hard, he could not remember a lot of things. He could only copy the answer from the board. He couldn’t follow the class, but he could learn more during the one-to-one sessions.”
Technical school
It was decided by Paul, his parents and teachers that he would do better to attend a technical school because of the linguistic difficulties he confronted. Paul is very talented in art and it was considered by those involved that the jewellery design course would be most appropriate for him. The child recalls “I was really unhappy at junior high school. I had to study for so many hours without achieving many things. It was so stressful. At my present school I feel happy and relieved, because I don’t have so many theoretical subjects, I can cope and create different things.” Similarly the teachers of the practical subjects stress his talent and excellent attainments, despite the fact that he still faces enormous difficulties in theoretical subjects. Paul is still receiving one-to-one session support in all subjects examined at the end of the year.
The impact of the additional disabilities and provision of services
It can be deduced from the above that there are no sophisticated services in Cyprus for the identification of hearing-impaired children’s specific learning difficulties. Paul was not provided with any special services other with those offered to any hearing-impaired child, (speech therapy sessions, and one-to-one session). Paul was brought up in a very caring environment and the parents did their best in providing their child with linguistic stimuli ‘Our house was like a nursery. We put labels with written words on each object in the house. I’ve been explaining each word of our conversation at home to my child, since his hearing problem was identified’. They have been also providing their child privately with one-to-one sessions since his hearing impairment was identified. However, Paul never overcame his additional linguistic difficulties, (he has an extremely small vocabulary, his written and expressive language is limited; when he reads an unknown word he omits some letters, or some vowels or consonants; similarly when he writes, he leaves the words incomplete, or he omits letters within the word). Since teachers of the deaf in Cyprus are not trained on how to teach children with additional linguistic difficulties; finally, no services are available for these children.
In addition, his mother pointed out that that no psychological support is offered to the parents of hearing-impaired children with additional disabilities. “When I came back to Cyprus from the UK, I contacted the Pancyprian Association of Parents of Deaf Children. I only talked to them. Apart from this contact, I did not receive any psychological support. I felt so alone. My husband collapsed and suffered from depression. I had to support both my husband and my relatives. I had to teach my relatives how to communicate with my deaf child and to remind them not to spoil him. I had to be strong for my whole family. I couldn’t rely on my husband, only on my mother. Whenever we talked about these issues my husband changed the topic (…). It would have been really helpful if the Cyprus government offered psychological support to parents such as ourselves.” Counselling soon after detection and during the child’s first years is really important for parents. Psychological support is vital at all stages. Parents should have the opportunity to attend different sessions with other parents and the psychologists in order to discuss their problems and support each other.
3.1.3 Case study three-John
John is seventeen years old and was born prematurely, (at 2 8 weeks); he has cerebral palsy, (spastic diplegia), hearing problems, mobility difficulties and specific learning difficulties, (e.g. memory problems, motor co-ordination difficulties), most probably following complications of prematurity and perhaps of jaundice. He stayed at the Hospital in the incubator for three months. The doctors after birth told the parents that the cerebral palsy would affect some senses or mobility. His mother recalls “When John did the MRI, when he was twelve years old, a fault in his brain was revealed affecting his memory, learning, mobility and hearing.” John attended private physiotherapy sessions between the age of two and five, and he started walking when he was two. His mother recalls “I had to take him to a private physiotherapist, since people at the hospital told me that my child was not eligible for physiotherapy sessions within the hospital. I had to pay so much money. I took the government aid for children with special needs after his hearing loss was detected.” John is talented in music, he belongs to his school’s band, he attends afternoon classes at a conservatoire, and plays the drums and side-drum.
Diagnosis of hearing problem
John has a congenital, bilateral moderate hearing impairment, (average 50 dB HL in the better hearing ear at 0.5, 1, 2, 4 kHz) . John communicates orally and has developed intelligible oral speech. John was twelve years old when his hearing problem was identified and, soon after the identification, he was fitted with two in-the-ear hearing aids. His class teacher was the first to get suspicious of his hearing when John was twelve because he did not respond when she was calling him. His mother confirmed her fears, since the child would not react when she was calling him at home.
Nursery and primary school
John attended a general nursery and primary school. According to his mother, no support was offered to him either at the nursery school or at the primary school. Despite the fact that his hearing problem and specific learning difficulties were detected when he was twelve, the government offered only two periods for one-to-one sessions to the child when he was attending the last class of the primary school; however, he was supported as a student with specific learning difficulties, and not as a student with hearing impairment. His mother’s experiences of that period were really traumatic: “He was the only pupil in the first class of primary school that could not hold a pencil. The teacher complained that he was slow and could not do anything. He had to repeat the class. He learned how to read and write with difficulty when he attended the first class for the second time. All the primary teachers rejected my child. They called him a psychopath and crazy because he was walking on his toes! Despite the fact that we provided the school with the doctor’s report after the MRI, describing the impact of the cerebral palsy on his learning, their attitude never changed. The hearing children were also laughing at him. And he was reacting violently! The only teacher who loved him was the music teacher when John was attending the fourth class, who used to call him ‘the pupil with the most musical talent in our school.’”
Secondary education (junior high school and technical school)
Things for John changed when he attended the high school and technical school. He was supported as a student with hearing impairment and he was present in his age-appropriate classroom for some of the day but also received special educational services, (one-to-one sessions), in a withdrawal room for ten periods per week, (offered by the class teachers), for subjects that are examined at the end of the school year (e.g. Modern Greek, History, Physics, Mathematics) and for English (as a second foreign language). John recalls “Everything was so nice at the junior high school. Everybody loved me, both my teachers and my classmates. My teachers were helping me at the one-to-one session and in the classroom. My classmates even bought me a pair of glasses for my birthday.” His mother agrees with him: “His classmates and teachers accepted him and loved him. They all helped him, both young and old! The one-to-one sessions enabled him to develop better relationships with his teachers, and to feel more confident.” Some teachers recall from those days: “John forgot all the time. Despite the fact he spent so many hours studying, the next day he would forget what he learned. Generally, I remember him as a very kind and diligent pupil. He performed better when he was asked to answer a question orally than on paper. The one-to-one session enabled him not to feel stressed and to improve his communicative skills both with his teachers and classmates.” Another teacher stated “He couldn’t understand abstract words, and sometimes he confused them; visual aids were really important while teaching him. He was also unstable while writing and he also had mobility difficulties. All his friends loved him.”
It was decided by John , his parents and teachers that he would better attend a technical school because of the linguistic difficulties he confronted. John decided to attend the Hotel course as he could not find a subject in the technical school that was more suitable for him and he was unable to attend the higher school because of his linguistic difficulties . John is really talented in music but there was no such choice at the technical school. John got used to his new school and his teachers are quite pleased with him. “John has better results in oral examination than in written. We also adapt the text to his needs. The one-to-one sessions are really important to him. He is very sociable and has a lot of friends.”
The impact of the additional disabilities and provision of services
John’s hearing problem was detected when he was twelve years old, despite the fact that he was born with hearing loss. It can be deduced from the above that there are no services in Cyprus for the early identification of hearing problems in children with additional disabilities. Additionally, his mother described the difficulties faced while trying to obtain special education provisions for her child. She expressed her satisfaction with the support provided at secondary education, but she stressed that it would be useful if Units were established within general schools for hearing-impaired children with specific learning difficulties in order to help them learn taking into consideration their needs and pace.
3.1.4 Case study three-Joseph
Joseph is fourteen years old and has a bilateral profound hearing impairment, (average 120 dB HL in the better hearing ear at 0.5, 1, 2, 4 kHz) . Joseph has no speech and he uses the Greek-Cyprus Sign Language. His lip-reading skills are very limited. He also has reduced vision due to albinism. His visual acuity is 6/18 in the right ear and 5/60 in the left. Joseph was born in Cyprus after a normal pregnancy and delivery. Joseph is very talented in art and he has received a number of different art awards. He has also organized his first art exhibition.
Diagnosis of the hearing problem
Joseph has a congenital, bilateral, profound hearing impairment. His mother became suspicious of his hearing problem when the child was nine months old. When he was in the walker, an empty tin got into it. He was pulling the tin for a distance making a terrible noise but he couldn’t hear it. His mother described her painful experiences up to the time of diagnosis “We visited so many private doctors but they told me that I was crazy and there was not a problem with my child’s hearing. I took him to the hospital but the doctor there refused to do an audiological assessment of my child because he had fluid in his ear. He told me that ‘I don’t have time to spend with audiograms.’ He told me to take him to the Audiological Centre at the School for the Deaf when he would be eighteen months old. His hearing problem was detected at the Audiological Centre at the School for the Deaf when he was eighteen months old, and soon after the detection he was fitted with two hearing aids behind the ear.”
Diagnosis of the visual problem
Joseph’s sight problem was not detected soon after his birth, and, according to his mother, this caused a lot of problems. She had to visit different doctors before his visual impairment was detected. His mother stated “The teacher of the deaf who was helping my child privately after the detection of his hearing problem, insisted that he had some visual problems, since he was blinking his eyes all the time. Consequently, we took him to the doctors but they told us that we were crazy. When he attended the Unit at the School for the Deaf, a teacher told me that there was a sight problem because he could not see the letters on the blackboard. We took him to a doctor and he diagnosed a squint and Joseph was fitted with glasses. However, his visual problems continued and, when my child was eight years old, during a school event, he stood on other children’s feet because he could not see very well. After that we took him to different private doctors in Cyprus. His teachers also took him to different doctors. One doctor diagnosed an ocular albinism. The doctors changed his glasses lenses to meet his visual needs. After that we visited a hospital in Greece and a hospital in the UK. The doctors told us that his visual problem should have been identified earlier, and that we had lost valuable time. We suffered a lot till the time that his visual problem was detected.”
Nursery school-Primary school
Soon after the detection of the hearing problem, his mother attended the Parents’ Guidance Programme at the School for the Deaf. In parallel, the child and his mother attended afternoon private sessions with a teacher of the deaf. When he was two and a half, he attended a Unit with three other deaf children within the School for the Deaf. They were integrated for some periods per week in a general nursery within the premises of the School for the Deaf. His mother mentioned “ A doctor in Cyprus told us that he will lose his vision at the age of 17, and that he should learn Braille. We took our child to the School for the Blind when he was 8-9 years old, but both the teachers and the child reacted so we brought him back to the School for the Deaf.” The same group attended the first classes of the primary school for the Deaf and were partially integrated in the neighbouring general primary school. When Joseph was eleven, his parents and his classmates’ parents demanded that the Unit was moved to the premises of the neighbouring general primary school. Joseph graduated from the general primary school. During those school years he was attending the Unit for most of the subjects, and he was integrated with the support of his teacher with his classmates in Maths, Science, Art, Gymnastics, and Craft. His teacher of the deaf was signing with the children. A teacher at that time recalls “Joseph had a lot of linguistic difficulties caused by his visual and hearing problems. His lip-reading skills were very limited and he could not communicate at all orally.”
Secondary school
Joseph is currently attending the first class of a Unit in a general secondary school with three other deaf children. He is attending the Unit for most subjects and he is integrated in the general class only for Gym, Art, Computers, and Technology. An interpreter is present all the time. His teachers are very pleased with his efforts: “Joseph is trying really hard. At the beginning his school performance was average, but he is gradually improving.” Another teacher stressed “Joseph is extremely diligent, co-operative and in general a nice boy. He participates in different art competitions organized by the Ministry of Education and Culture and has done particularly well.” Another teacher emphasized “Taking into consideration that Joseph signs and his hearing classmates don’t sign, this has a serious effect on their effective communication. Joseph is also a poor lip-reader. Since he cannot communicate with the hearing children, sometimes he argues with them.”
The impact of the additional disabilities and provision of services
Joseph’s visual and hearing impairment identifications were spotted really late. We can assume from the above that there are no sophisticated services on the island for the detection of dual sensory impairments. Joseph’s mother pointed out that “doctors in Cyprus are not effective in detecting dual sensory impairments.” Regarding Joseph’s education we can conclude from his case that when deaf children who sign attend general schools, hearing teachers and classmates should learn the sign language, in order to achieve effective communication. In addition, because of the fact that dual sensory impairment is not common in Cyprus, the impact of each impairment should not be underestimated, but both should be taken into consideration when designing and providing education programmes. His mother pointed out “I am quite pleased with his attendance at the high school. However, I noticed that they took into consideration only his hearing problem, and not his visual problem. Some parents of my son’s friends were not informed of his visual problem, and I had to inform them myself. It would be useful if a teacher for the blind visited the school as well. Joseph spends a lot of time studying at home. Since I cannot help him, I pay a teacher in the afternoon to support and help him privately. Of course the financial cost is extremely high.” Finally, it is important for parents not be burdened with the costs of private afternoon lessons. The state should undertake to meet this cost.
3.1.5 Case study five-Sophia
Sophia is 25 years old and has congenital glaucoma, congenital heart disease and congenital bilateral profound hearing impairment, (average 105 dB HL in the better hearing ear at 0.5, 1, 2, 4 kHz) , because of intrauterine rubella infection. Nowadays, Sophia is profoundly deaf and blind and attending the School for the Blind. She has intelligible speech and she uses tactile signs. Sophia was born in Canada after a normal pregnancy and delivery. The doctors, one week after delivery, announced to the parents that their child was infected by the intrauterine rubella and that she was at high risk of dying or, if she survived, to have mental, hearing, visual and heart problems. Sophia stayed in the NICU until she was seven months old at which stage the doctors gave her to the parents to take home because they said they could do nothing for their child since the virus had affected most of the vital organs, (heart and lungs) and she did not put on weight. The mother recalls what the doctors told her when they gave her the child “What are you going to do with this ‘plant’?” The mother at time thought “I will take my child and try to do my best. I don’t know what God’s will is. Only if the child dies I will accept her death.” Sophia survived due to her mother’s will. Sophia’s mother stayed at home with her child all these years. She breathed through a windpipe and was fed with a feeding tube at home till she was three years old. When she was three, the mother thought that she should try to feed Sophia with baby food. Her growth was really slow. She had her first tooth at the age of 21 months and walked when she was three years old. The mother was pleased with the support services provided by the State to the family “A psychologist was visiting parents at home. Physiotherapy and occupational sessions were also provided to the child. I was quite pleased with the support services provided to my child.” Her mother emphasizes “I am glad that Sophia had her vision for more than 18 years before she got blind. I could not imagine how her life would be if she could not speak or sign at all.”
Diagnosis of the hearing problem
At three years old, Sophia’s mother was observing the child’s behaviour because the doctors told her that congenital rubella affects the hearing. She suspected the hearing problem when Sophia was four and did not react to door slamming. Soon after that the hearing problem was diagnosed by a multi-professional team and the child was fitted with two body aids.
Diagnosis of the visual problem
The doctors diagnosed congenital glaucoma when Sophia was seven and a half months. According to her parents, the doctors told them that, if she put drops in her eye all her life, she would keep the eye’s pressure low and wouldn’t be at risk of blindness. They also advised them to visit an ophthalmologist every month. The parents stressed “We feel deceived. After so many years the doctors told us that glaucoma is a serious medical condition and there is a high risk of blindness. We have so many unanswered questions. Why didn’t they ever mention blindness? The doctors were not well informed? Our child was walking naturally. She could see everything even though her vision was narrow.” When Sophia was 19 years old her eye was seriously infected. Her eye was red and she could not see clearly. Her parents pointed out “The doctor told us that she didn’t want to give her cortisone because this could increase her blood pressure. In the end, the doctor did give her cortisone. Sophia saw for two-three months and, after that, she lost her vision.”
Nursery school
Between the age of five and six, Sophia attended a Unit within a general nursery school in Canada. There were five hearing-impaired children and two teachers of the deaf as well as a teaching assistant. The mother had really nice experiences “Despite the fact that Sophia had restricted skills when she first attended the nursery school, (she was in bed for three years!), the teachers loved her a lot and were patient with her. They also told us that she was really intelligent. They used to give us a report describing the skills obtained by our child as well as future aims. They also told us that, because of the degree of our child’s hearing impairment, it would have been better if she followed the total communication approach and suggested we started sign language classes in order to enable her learning. Of course, we would prefer the oral approach but I trusted so much the teacher that I had no doubt about her suggestions. There was also a deaf mother at the nursery school signing with her two deaf children. I could see how natural this type of communication was. Unfortunately, due to my husband’s health problem, we had to move back to Cyprus. The teacher was crying when we left, because she found out that there were no good services on the island.”
Primary school
Sophia attended the primary school for the Deaf. Her parents emphasized that they were not pleased with their child’s progress. According to her mother “The teaching was not effective. I was comparing things with the situation in Canada and I was so disappointed. I also noticed that a lot of deaf children with different needs, (e.g. epilepsy, mental retardation), were present in one classroom. I also used some signs to communicate with my child. I was convinced that sign language facilitates hearing-impaired children’s communication. If you can’t express something in words you can express it with your hands. However, the teachers at the School for the Deaf told me to stop signing with my child, and to teach her the speech. Parents were not pleased with the level of education at the School for the Deaf and they demanded the integration of deaf children in general schools. My daughter’s classmates left and she was alone. She also wanted to be integrated to general school.” When Sophia was thirteen years old, she was integrated into the third class of a general primary school with no support. Only the class teachers were supporting her in Maths and in Greek. One teacher recalls “People at the school thought that Sophia was wandering in the school and that she was a child with mental retardation.” Her parents recall “The headmaster of the school told us that he had the feeling that Sophia did not get enough support at the school, and that she could not follow the lessons in class.” Sophia left the primary school when she was sixteen years old, (her hearing classmates were 12), and she never got a primary school certificate.”
Secondary school
Sophia attended a general junior primary school between the age of sixteen and eighteen and she never got a junior high school certificate. She received one-to-one sessions in Greek and in Maths. Her mother recalls “Despite the fact that at the beginning Sophia was comparing herself with hearing children and she didn’t like it. However, after time she got used to it and she was happy with the one-to-one sessions. S he was talking with the hearing children. She was quite happy and a hearing girl was helping her. The teachers were quite pleased with her behaviour, because she was very polite.”
School for the Blind
Between the age of eighteen and twenty, Sophia was gradually losing her sight. Her parents took her to the School for the Blind. Her mother stressed “teachers there were not used to deaf-blind children, and did not know how to teach her. Sophia was actually the first deaf-blind pupil at the school. I was attending the school with my child for the first two years, to help her with communication, orientation and mobility.” During the first two years, Sophia learned Braille letters and simple words, and did some housekeeping, computer, gyms and basket-weaving classes. A person employed by the Pancyprian Association for the Blind visited Sophia at home and taught her how to eat, be served, to make coffee and wash the dishes. She also attended orientation and mobility sessions on how to enter and exit the school and how to enter and move in the house.
Between the age of 21 and 25, a new teacher of the blind taught Sophia. Her academic programme included Greek, Art, Housekeeping, Sign Language, Information Technology and Loom. Her Greek teacher stressed her initial inability to teach the child, due to various reasons “When I first taught Sophia I didn’t get any information. I didn’t know what her abilities were. I didn’t know the Greek-Cyprus Sign Language, so I could not communicate with her. I didn’t have an official assessment of the child. Sophia was integrated since she was twelve years old, and no support was provided to her by the School for the Deaf. In the general school they labeled her as a ‘girl with mental retardation’ and they were treating her as such. The only thing I can tell is that Sophia was really bright.”
The teacher decided to find more about deaf-blind children, to teach her more effectively: “Sophia was a challenge for me. I prepared her individual educational plan myself, because nobody wanted to deal with her. Sometimes, I need support. I need someone to tell me, whether the things I am doing are right or wrong. It was very stressful for me. I didn’t know at the beginning the sign language. I was not an expert in deaf-blind children, so I decided to teach her based on her experiences. I decided to use all the possible means (the smell, the touch, and the signs – which I learned later). When I teach her we use real things in real situations. We do a lot of visits; to learn objects’ and people’s names, to smell, and to taste. For instance, when we were doing fruit, I taught her the sign; I made her taste and smell the fruit, to write it in Braille. We used to spend hours in the fruit shops, to touch and smell different fruits. I made her taste different things, despite the fact she was reluctant. I also wanted to teach her the usefulness of the fruit. That is why I asked the housekeeping teacher to use fruit to make a fruit salad. I was surprised by how limited her vocabulary was, equivalent to a child of three years old.
Sometimes, I feel guilty because she is 26 years old, but we have to work on simple words. That’s why I try to teach her some words connected to the real world. For instance, when she made a visit to a country, we worked before on the vocabulary, using touch maps to teach her the five continents and basic countries. In parallel I teach her grammar and syntax.” The teacher also pointed out that the programme that Sophia attends is unofficial and she doesn’t know for how long she can keep her there: “We have to rush; Sophia is an adult and I don’t know for how long I can keep her here. For instance, for other adult blind people we say they can attend the school for three years in order to obtain useful skills for future employment. However, Sophia’s case is quite different. Sophia is really isolated. If she doesn’t come here what will happen to her.” The teacher also supported her psychologically: “Blindness was something recent for her. She used to hug me all the time. I had to teach her that she cannot kiss me all the time. There should be a reason to hug and kiss each other.”
Provision of services
Some useful suggestions for the improvement of services provided to deaf-blind children derived from this case study. There are no sophisticated services for the identification of visual problems. Sophia’s teacher also stressed there should be routine visual testing of all hearing-impaired children, since they are at high risk of being visually impaired as well, and that the School for the Deaf should co-operate with the School for the Blind.
Sophia’s parents received confusing information “We have taken our child to so many ophthalmologists. However, nobody told me that glaucoma would cause blindness. They only told me to put drops in my child’s eye. After my child went blind they told me that she was lucky for seeing for that long! In addition, the ophthalmologists never carried out any tests to assess her field of vision, because they told us that she could not co-operate. Of course we knew that glaucoma is related with close vision. The gynaecologist is also responsible for my child’s condition. I am sure that he could have predicted that that rubella had infected my child, because he had tested my blood. Why didn’t he tell me anything?” Genetic counselling is also important since a lot of hearing impaired adults suffer from Usher syndrome.
Secondly, the financial requirements of children with complex needs are increased. The government should provide parents of deaf children with additional disabilities with extra financial support. Sophia’s mother stressed “Because of my child’s condition, I never worked. I had to be next to her all the time. However, we have so many needs. If I had money, I would have provided my child with speech therapy sessions, with gym sessions privately in the afternoon. Quite often, I feel so guilty because I cannot afford all these. Additionally my child is very good in craft. In order to make different things she needs an extra room. Our house is really small; thus, the government should give us money to rent such a place. Finally, the government should offer us a mobility allowance.”
Additionally, the government should provide parents of hearing-impaired children with psychological support. Sophia’s mother pointed out “Psychological support is vital for the parents. It enables them to accept their children’s condition, without feeling guilty. Sometimes the children themselves feel so guilty for causing trouble to their parents. Psychological support enables parents to answer their children’s questions such as ‘Why don’t I get married? ‘If you get sick, who will take care of me?’ Parents need psychological support to support themselves and the rest of the family. Whenever we attend these sessions we feel so nice. Unfortunately, the government doesn’t provide this kind of support and, because they are so expensive, we cannot attend them as often as we would like!”
It is vital that self-contained flats for deaf-blind adults are built by the government. Sophia’s parents expressed their fears about the future of their child when they die “What will happen to my child when I die? If there were these flats I could leave her there. But now, there is nothing. What will happen to my child? Who will take care of the child?
It is also urgent that sheltered workshops be established in Cyprus to provide deaf children with the necessary knowledge, in order to ensure their future employment. Sophia’s mother pointed out “Once my child leaves the School for the Blind where will she go? Will she stay at home? My child often tells me ‘I don’t want money I just want a proper job.” The government should provide vocational training to deaf children with additional disabilities and ensure their future employment.”
It is also important that sign language is recognized as an important mode of communication both for deaf children and for deaf children with additional disabilities. Sophia’s parents stressed “The oral approach currently applied in Cyprus is not the right method for hearing-impaired children. Sign language offers better opportunities for communication among hearing-impaired children. We were lucky that our child was signing before she went blind since she can now communicate with tactile signs. Things could have been better if she had better signing skills.”
The educational programmes for deaf-blind children should be differentiated. Assessment should be carried out, and education programmes should be differentiated based on the findings. Additionally, hearing-impaired children with progressive visual impairment should be well equipped with all the necessary means “They should sign very well, use the computer, and learn as much as they can before they lose their sight. They should be better equipped than any other hearing-impaired child.” Early identification should be followed by early intervention and differentiation of the educational programmes. Sophia’s teacher stressed “if the visual sense is impaired, deaf children will face difficulties with their communication, and with the learning of sign language, and generally with the way they perceive different things. They will have a false perception of the world, since it won’t be possible to verify through their vision what they hear.”
The deaf-blind people in Cyprus tend to be isolated. The deaf community should obtain knowledge about deaf-blind people so as to realize that it is common to have deaf-blind people in the Community, in order to accept them and not to reject them. Sophia’s mother stressed “Before my child lost her vision, she had had a lot of Deaf friends; after she lost her vision she was feeling so lonely. The Deaf stopped visiting us at home, and in the gatherings I was watching them avoiding my child.”
4.1 Conclusions-Recommendations
It is important to note that these individuals comprise a heterogeneous population with a range of skills, knowledge, and abilities (Long and Clark, 1993). However, some ways of improving the services provided to them are suggested. The findings of our study may be used to suggest effective service delivery for hearing-impaired children with additional disabilities in Cyprus and elsewhere.
Initially, it has been derived from this study that all children should have access to the early, fast, efficient, andappropriate assessment of auditory status, (McCracken, 1998). Objective test procedures, such as brainstem electric response audiometry, otoacoustic emissions, impedance audiometry, have been used worldwide on a large scale in clinical practice for the assessment of auditory sensitivity of auditory sensitivity of hearing-impaired children with additional disabilities, (Coninx and Moore, 1997). Early detection of hearing impairment could improve children’s linguistic, social, and psychological development, and helps families to come to terms with the disability. Early screening for hearing impairment could be an answer to early identification. Universal hearing screening has been applied on a pilot basis on the island for the last year. The findings of this study support the case that universal hearing screening should be implemented all over the island on a permanent basis in order to detect as early as possible the hearing impairments of all children. Early identification should be followed by early and appropriate amplification. However, McCracken and Bamford (1995) have shown in their study that an appropriate form of amplification has to take into account different variables such as the sensory, physical, emotional, intellectual, social and educational needs of the child.
It was brought out in our study that additional disabilities should be detected as early as possible otherwise the results can be really tragic. Ogden (1996:274) stresses that “poor or nonexistent diagnostic procedures place heavy burdens on deaf children.” It has been suggested by the participants in our study that routine visual testing of all diagnosed hearing-impaired children should be carried out and sophisticated services for the detection of dual sensory impairments should be developed. Genetic counselling is also important since it provides the families with information about the nature and likelihood of inherited disorders, (e.g. Usher syndrome), and the options available in terms of prevention and management. Concerning the specific learning disabilities, the 1993 reference issue of the American Annals of the Deaf supports specific learning difficulties as the largest co-occuring disability at a prevalence of 9%. In our study, two children had additional specific learning difficulties. According to Bunch and Melnyk (1989) hearing-impaired children with additional specific learning difficulties exhibit unusual learning characteristics considered atypical of students who are hearing-impaired. It is vital that specific learning disabilities of hearing-impaired children in Cyprus are identified as early as possible.
The identification of additional learning problems among children with hearing impairments is a difficult and complex task. Pollack (1997:3) emphasizes that “differential diagnosis is critical to determining an accurate learning profile for the individual student, which includes a clear determination of the disabilities influencing that profile. The assessment should consist of teacher observations and appropriate standardized assessment measures as well as informal assessment procedures. Professionals involved should include school psychologists, classroom teachers, occupational and physical therapists, speech/language pathologists, audiologists, and any necessary medical personnel such as nurses, psychiatrists.”
Our study also revealed the need for early counselling, support group and on-going support for parents of hearing-impaired children with additional disabilities. Markides (1990:57) stresses that parents of hearing-impaired children “will have special needs and they will require guidance and skilled support to understand, adjust to, and accept the disability of their child and to develop modes of behaviour and attitudes most conducive to their child’s growth.” Parents in our study pointed out that on-going psychological support is also vital at all stages of their children’s lives. They suggested that the government should undertake the costs of such services.
Education programmes provided to hearing-impaired children with additional disabilities should be designed and be adapted to meet their needs. Assessment of the child’s needs is useful to ensure quality provision of appropriate services. A hearing-impaired child with additional disabilities cannot be educated using the same methods used for any hearing-impaired child. As far as the deaf-blind students are concerned, participants in our study pointed out that “You cannot teach deaf-blind children using the same teaching methods used for hearing-impaired children. For instance, you may not need as many pictures before, but experiences of real objects and situations will be more important. You may need to sign close to the child, or to large pictures. Of course, each deaf-blind child is quite different from another.” Concerning, the deaf children with specific and general learning difficulties, Pollack (1997:4) stresses that “it is a challenge to the professionals in the field to match the assessment learning profile with appropriate education strategies to address the delineated problems.” Chalk (1996) suggests that for students with learning difficulties with severe lack of vocabulary and simple syntax knowledge work using pictures and picture symbols to support signs has proven beneficial.
Ogden (1996:271) stresses that “few people who understand deafness are specialists in the ways its effects are compounded by other disabling conditions.” Teachers of the deaf in Cyprus have inadequate knowledge as to how to assess and teach effectively hearing-impaired children with additional disabilities. It emerges from our study that there is a need for their training in teaching deaf children with additional disabilities. There are well established relevant courses in the USA and the UK that could serve those needs. However, teachers need to recognize their areas of expertise and be prepared to work in a more multi-disciplined way.
It is also urgent that sheltered workshops are established in Cyprus to provide deaf people with serious additional disabilities with the necessary skills and to ensure their future employment and independent living. According to Smith, (1994:180) some of these “sheltered workshops offer not only good jobs at reasonable pay and near complete access in the form of equipment and interpreters.”
The independent living of deaf adults with additional serious disabilities is also an emerging issue. Self-contained flats should be built and maintained by the government for those deaf adults with serious additional disabilities whose close family will not be in a position to care. These persons could carry out daily living tasks with supervision and guidance from others (cleaning, cooking) (Greg and Clark, 1993).
The issue of effective communication in the education of deaf children with additional disabilities is central. The majority of hearing-impaired children in Cyprus are trained orally. However, according to McCracken (1998:34) “a detailed consideration of the child’s special learning needs, their developmental level, and an assessment of communication skills is essential to inform any approach.” The work by Konstantares and her colleagues (1977) has shown the value of sign in developing communication skills in children who are autistic or in children with learning disabilities. Our study findings also support that sign language is important for totally deaf-blind children for tactile communication. Thus, it is also important that the Greek-Cypriot sign language is recognized in Cyprus as an important mode of communication and not as the last option both for deaf children and for deaf children with additional disabilities.
Participants in our study stressed that financial support from the Government is absolutely essential for the parents of hearing-impaired children with additional disabilities. The needs of these children are more complex and financial support from the government will ensure that parents can effectively response to those needs.
Finally, it was brought out from our study that the majority of Deaf adults in Cyprus want to disassociate themselves from deaf children with additional needs. According to Ogden (1996:280) “these people are frightened by the prospect of being associated with ‘handicapped’ or ‘disabled people’ and feel the need to distance themselves.” The Deaf community should get accurate information about the presence of Deaf members with additional disabilities in order to accept these people as members of their society, and not to reject them. These people remain Deaf and will always need to be accepted and be well integrated into the deaf community.
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