Whats is Deafblindness ? Explained

In the previous post we learned about Intellectual disabilityDeafblindness is briefly detailed in this blog, covering the entire spectrum from the meaning and description of deafblindness to the causes and characteristics of deafblindness.

By the completion of this blog, 

  • The reader will have gained sufficient knowledge about the meaning and definition of deafblindness. 
  • Learn about the causes and syndromes of deafblindness, as well as the role of the social worker in managing deafblindness in individuals.

Contents

  1. Introduction
  2. Meaning and Definition of Deafblindness
  3. Characteristics of a Child with Deafblindness
  4. Causes of Deafblindness
  5. Alport’s Syndrome
  6. Apert’s Syndrome
  7. Bardet - Biedi Syndrome:
  8. Laurence-Moon Syndrome
  9. Crouzons’s Syndrome
  10. Down Syndrome
  11.  Friedreich’s Ataxia
  12. Goldenhar’s Syndrome
  13. Hunter’s - Hurler’s Syndrome  
  14. Marfan’s Syndrome
  15. Rett’s Syndrome
  16. Cytomegalovirus (CMS)
  17. Norrie’s Disease
  18. Refsum’s Syndrome 
  19. Turner’s Syndrome
  20. Wildervanck Syndrome
  21. Other Causes 
  22. Social Work with People with Deafblindness  

Introduction

IDEA defines deafblindness as "concurrent hearing and vision impairments, the combination of which generates such severe communication and other developmental and educational needs that they cannot be accommodated in special education programmes simply for deaf or blind children" (Federal Register, 1999). Deafblindness does not always refer to a complete incapacity to see or hear. Many deafblind people have some useable hearing and/or vision. The combined effect of vision and hearing loss, on the other hand, is significant. It has a significant impact on information access.

Individuals with deafblindness are socially excluded from human rights, inclusion, communication, and essential facilities such as healthcare, education, and employment in general. Given the gravity of the situation, it is critical that deafblindness in people receive increased socioeconomic and political attention. Social workers who work to effect change in people are obligated to ensure that those living with deafblindness are aware of the services that are available to them in order for them to be included. As a result, social work in the topic of disability has gained prominence in Indian social work education.

Meaning and Definition of Deafblindness:

A child with auditory and visual impairments, the combination of which creates such severe communication and other developmental and educational challenges that he or she cannot be adequately accommodated in special education programmes designed solely for the hearing or visually impaired kid.

Students with visual and multiple impairments or deafblindness have a mix of disabilities that are predicted to last eternally and affect performance in two or more of the categories listed below.
  1. All round development 
  2. Communication 
  3. Ability to move around 
  4. Cognition 
  5. Self-care 
  6. Social and emotional development According to this Definition, 
  7. A person is deafblind when he or she has a severe degree of combined visual and auditory impairment.  
  8. Some people with deafblindness are totally deaf and blind, while others have residual hearing and vision. 
  9. The severity of the communication problems.
The term deafblind refers to a diverse group of persons who may have varied degrees of visual and hearing impairment, possibly associated with learning and physical difficulties, resulting in severe communicative, developmental, and educational demands. A precise description is difficult to provide because the degrees of deafness and blindness, possibly combined with different degrees of other disabilities, are not uniform, and each person's educational needs must be determined. Individuals with combined vision and hearing loss, or deafblindness, are unable to access this essential information in a clear and consistent manner. Deafblindness is an access limitation that affects both visual and auditory information.

As a result, a deafblind child is not a deaf child who cannot see or a blind child who cannot hear. The issue is not a combination of deafness and blindness. It's also not just a matter of communication or perception. It includes everything and then some. Deafblind people are multisensory impaired: they are unable to use their distance vision and hearing senses to receive non-distorted information. Their issue is complicated.

Characteristics of a Child with Deafblindness:

Mclnnes & Treffry (1982) give the following characteristics of a child with deafblindness. A child who is
  •  Lack the ability to communicate with his or her environment in a meaningful way 
  • Have a distorted perception of the world 
  • Be deprived of the information necessary to anticipate future events or the results of his or her actions 
  • Be deprived of many of the most basic extrinsic motivations 
  • Have medical problems that lead to serious development lags 
  • Be mislabeled as developmentally disabled or emotionally disturbed 
  • Be forced to develop unique learning styles to compensate for his or her sensory impairment 
  • Have extreme difficulty in establishing and maintaining interpersonal relationships

Causes of Deafblindness: 

The onset of vision and hearing loss can occur before or after birth, and other sensory input channels can be impaired or not. Other physical and mental impairments may accompany deafblindness. The one thing that all children with deafblindness have in common is that they all have some degree of deprivation in the use of their distance senses of vision and hearing.

Prenatal disorders such as viral infections, preterm, genetic abnormalities, drug or alcohol usage by the mother, other diseases, or accidents can all cause deafblindness. Meningitis, encephalitis, other pediatric disorders, or accidents can all cause postnatal deafblindness. The number of infants and children born deafblind is a source of worry. Medical advances have lowered infant mortality and prolonged the lives of children born with numerous birth abnormalities. A huge number of youngsters now live a long period with one or more disabilities.

Rubella was the most well-known cause of congenital deafblindness in most developed countries. There is no accurate data available in India in this regard. However, children with Rubella are observed in the majority of programmes in India that focus on children with multiple disabilities and deafblindness. There are numerous more congenital disorders and syndromes that result in deafblindness and other impairments. The following are the specifics of such conditions:

Deafblindness has around 70 identified causes. Some syndromes can result in deafblindness. A syndrome is a collection of signs and symptoms that occur together and identify a certain condition. The following are some of the syndromes that produce multiple impairments or deafblindness.

CHARGE Syndrome

Dr. Roberta Pago described a set of traits currently known as CHARGE in 1981. It is a group of six multisystem congenital abnormalities, which include the following.
  1. Coloboma of Iris and / or Retina: Coloboma is an eye malformation characterised by the disappearance of a portion of the eye. Coloboma of the iris (at the front of the eye) may limit a person's ability to adjust to bright light, whereas coloboma of the retina (at the back of the eye) will result in a blank area in the person's visual field. Cryptophthalmia (small eyes), Microphthalmia (absent eyes)
  2. Heart defect: Heart defects may be of various kinds. Sometimes these problems can resolve themselves overtime but often-emergency surgery is needed soon after birth.
  3. Choanal Atresia (unilateral or bilateral): Choanal atresia is a blockage of the passageways at the back of the nose that is one of the key criteria for CHARGE Association diagnosis. The blockage might be on one or both sides, and it can be made of skin or bone membrane. To open these channels, emergency surgery is frequently required shortly after birth.
  4. Growth Retardation: As the kid grows older, delayed growth and development may become apparent; the majority of adults identified as having CHARGE Association are below the third percentile of physical growth norms. There are numerous reasons that contribute to development retardation, including severe eating difficulties, reflux, breathing problems, chest infections, and hospitalisation.
  5. Genitalia anomalies: Males are prone to genital abnormalities, notably the incomplete or underdevelopment of external genitals. Males and females with CHARGE Association frequently have hormonal issues.
  6. Ear anomalies (external, middle and or internal): Ear abnormalities can impact the exterior ear (which can be abnormally large or small, or have a unique shape), the middle ear (bone deformities or persistent middle ear infections), or the internal ear (especially high frequency hearing loss). The most prevalent type of hearing loss in people with CHARGE Association is mixed, which is conductive loss caused by middleear difficulties paired with sensory-neural loss caused by cochlea abnormalities. It appears likely that some people with CHARGE Association have central auditory processing impairments (difficulties processing auditory information in the brain), which are difficult to identify and can be superimposed on other hearing problems.
Apart from these critical features of the condition there are other anomalies which are often found in people with CHARGE Association, including:
  • Cleft lip and or palate 
  • Facial palsy 
  • Kidney abnormalities 
  • Malformations of the larynx, esophagus and trachea 
  • Abnormal tongue size 
  • Delayed and abnormal dental development 
  • Malformed or absent semi-circular canals in the ear which means that the balance sense will be affected or absent 
  • Persistent sleep disorder 
  • Hypoglycemia (low blood sugar)
Although heredity appears to play a factor in some situations, environmental factors have not been ruled out. Infants are often medically frail, necessitating multiple surgeries to address cleft palate, esophageal, and stomach complications. Hearing loss varies in severity and is often accompanied by outer-ear abnormalities. In 86 percent of cases, coloboma of the eye occurs. Micro ophthalmus (abnormally small eyes) and nystagmus are two more visual issues (involuntary rapid movement of the eyeball). A considerable proportion of instances have also been documented to have facial palsy.

According to David Brown, Educational Specialist, California Deafblind Services, San Francisco State University- (Am.J.Med.Gen 2005), children with CHARGE as a disability Children with CHARGE syndrome are truly multi-sensory impaired, experiencing difficulties not only with vision and hearing but also with the senses that perceive balance, touch, temperature, pain, pressure, and smell, as well as breathing and swallowing difficulties, eating and drinking digestion, and temperature control. They experience enormous problems in practically everything they undertake, resulting in extremely high levels of stress. Time spent attempting to reduce stress levels and providing acceptable techniques for children to do so for themselves must be one of the most valuable gifts we can give them, as well as one of the most significant favours we can do ourselves as educators, therapists, and family members.

Many people with CHARGE struggle with vocabulary recall, initiating communicative exchange, and clearly articulated expression. The provision of a communication mode with a component (e.g. objects, symbols, pictures, write words) can be of enormous help in aiding recall, encouraging initiations, clarifying meaning, and generally fostering a more confident, animated, and fluent communicative style.

Rubella

Rubella is one of the mildest viral infections and one of the few that regularly causes birth abnormalities when infected by pregnant women. Clinical rubella symptoms appear two weeks after exposure. The exposed person may begin to shed the virus up to one week before symptoms of disease appear. Subclinical rubella may occur, adding to the difficulties of determining the existence of rubel (that is rubella without any rash or other overt sings or symptom). Surubella can only be discovered in laboratories.

When a woman develops rubella during pregnancy, the fetus remains infected throughout the pregnancy and often for an extended period after birth. If the infection occurs during the first trimester of pregnant the risk of rubella-associated defects is greatly increased. The eyes, ears, heart, central nervous system, and brain appear to be especially susceptible to rubella associated damage. The rubella baby may have low birth weight, cataracts, glaucoma, heart, defects, hearing defect, brain damage or any combination of these problems. He continues to grow more slowly than his sibling. Many of these defect can be treated with surgery. Such treatment, however, will extend stays in hospital, and disruption of normal development in some often results

Rubella patients are frequently mislabeled as terribly impaired. They may exhibit atypical so patterns, feeding difficulties, and chewing and swallowing difficulties. Some children react to clothing because sensory impairment has resulted in an extremely poor tolerance for tactile sensation. Toileting difficulties are frequently caused by irregularities in biological functioning. Inability to communicate can cause frustration and delays in social, emotional, and cognitive development.

Usher Syndrome 

Usher syndrome is a genetic disorder that causes hearing loss and gradual visual loss due to Retinitis Pigmentosa (RP). The hearing loss, which ranges from moderate to profound, is assumed to be congenital. RP can also arise in the absence of hearing loss. Congenital sensorineural hearing loss and Retinitis Pigmentosa are symptoms of Usher syndrome (RP).

Retinits Pigmentosa refers to a collection of genetic illnesses of the retina, which is the light-sensitive tissue inside the eye where the early stages of "seeing" occur. With RP, the retina gradually degenerates and loses its capacity to send images to the brain. Pigment clumps form on the retina in advanced stages and can be viewed with an ophthalmoscope.

Some of the Symptoms of RP includes the following: 
  1. Night blindness: The first symptom to appear is night blindness. This may also be coupled with difficulty in adapting to bright light or rapidly changing light conditions. Difficulty with dark adaptation can occur in childhood, and although it may be noticed, it is seldom attributed to RP, but rather clumsiness, stupidity or even lack of carrots
  2. Narrowing of Field Vision: One type of retinal degeneration occurs when the red cells on the retina's periphery gradually lose function and fail to communicate information about changes in light levels and the forms of objects on the periphery. This lack of visual field, often known as tunnel vision, means that the individual loses his capacity to locate items that are not directly in front of him. For example, he may still be able to read the bus schedule but be unable to locate the bus station without assistance. While physical results are essentially normal, the vestibular system, which is responsible for balance, may be involved. Hearing loss is often severe to profound and is present from birth. However, in rare cases of Usher syndrome, the loss may occur during infancy and be relatively modest. Retinitis pigmentosa causes vision loss, which differs in its onset and progressive pattern.
To date, several type of Usher syndrome have been identified and classifield. There are mainly three types of Usher:

Usher Type-1

  • Born deaf that cannot hear, normal speech even with a hearing aid. 
  • These deaf children have poor balance and may be late in sitting up and walking. 
  • RP seems to occur between 8-12years. 
  • Because Usher syndrome affects hearing, balance and vision, diagnosis of the disorder usually includes the evaluation of all three senses. Evaluation of the eyes may include a vision field test to measure a person’s peripheral vision, an electroretinogram (ERG) to observe the retina and other structures in the back of the eye’s light sensitive cells, and a retinal examination to observe the retina and other structures in the back of the eye. A hearing (audiological) evaluation measures how loud sound at a range of frequencies needs to be before a before a person can hear them. An electonystagmogram (ENG) measures involuntary eye movements that could signify a balance problem. 

 Usher Type - 2

  • Moderate to severe loss of hearing from birth. 
  • Hearing loss is partial and so the loss is often not recognized until the child is four or five years of age or older. 
  • These children have normal balance. 
  •  They usually attend classes for partially hearing children or mainstream classes and depend heavily on hearing aids to learn speech. 
  • Their RP seems to occur in adolescence.

Usher Type - 3

  • A rarer form known as Usher type III cases RP and progressive loss in young adulthood. 
  • Hearing and sight seen normal. 
  • RP is diagnosed, usually in the twenties. 
  • Mild hearing loss may occur at the same age. 
  • Throughout adulthood they become progressively impaired in hearing and sight.

Apert’s Syndrome

Apert syndrome is a craniofacial head, face, and limb condition caused by a chromosome 10 genetic abnormality (98 percent of cases). There is usually no family history of the syndrome. Persons of Asian ancestry have the highest prevalence (22.3 per million births), whereas people of Hispanic ancestry have the lowest (7.8 per million births). It affects both boys and girls.

Symptoms

  • Children born with Apert syndrome have distinctive malformations of the head, face, and limbs:
  • Craniosynostosis: In an infant, the bones of the skull are not yet closed together, to allow for growth of the head. In children with Apert syndrome, the bones are abnormally fused together, sometimes before the child is born. 
  • Midface hypoplasia: The middle of the face is underdeveloped, leading to a concave-looking face. The bridge of the nose looks sunken in. The eyes are set widely apart and often protrude out of the sockets. 
  • Syndactyly: In the hands, the 2nd, 3rd and 4th fingers (sometimes the 5th finger also) are fused together into one (called mitten hands) and the thumb may stick out to the side. In the feet, the same thing (fusion) happens with the toes called sockfeet. 
  • Cervical spinal fusion: In 68% of children affected, some of the bones in the neck are fused together.
These children may also have:
  • Malformation of canal and middle ear bones with conductive loss 
  • Inner deafness 
  • Ears may be low set 
  • Mental Retardation 
  • Have webbed hands and feet

Bardet - Biedi Syndrome: 

Bardet-Biedil syndrome is a rare, genetic condition that results in a variety of anomalies in the way various sections of the body work. The symptoms can range from mild to severe, and may include some or all of the following:
  • Vision loss caused by retinal dystrophy. 
  • Obesity, usually more pronounced in the torso (Truncal obesity). 
  • Extra fingers and/ or toes (Polydactyly), or minor abnormalities of the hands and feet such as slight webbing or extra skin between the and toes. 
  • Lack or decreased secondary sex characteristics (hypogonadism). 
  • Development delay, and 
  • Kidney problems.

Laurence-Moon Syndrome

Mental retardation, pigmentary retinopathy, hypogenitalims, and spastic paraplegia are all symptoms of the illness. It shares many similarities with Bardet-Biedi syndrome, and whether they are different disorders or variations on the same syndrome is debatable. As a result, it is also known as the Laurence-Moon-Bardet-Biedel Syndrome or the Laurence-Moon-Bardet-Biedel Syndrome.

Symptoms 

  • General obesity, 
  • Mental retardation, 
  • Syndactyly of fingers and polydactyly of fingers are said to be features of Bardet- Biedi syndrome and not Laurence Moon syndrome, 
  • Progressive loss of vision due to retinitis pigmentosa. The ocular disease presents early, the prognosis for visual function is poor and the fundal features are atypical and varying,  Sensori-neural deafness causing childhood deafness, 
  • Small penis, 
  • Chronic renal failure, 
  • Short stature, possibly related to growth hormone deficiency, 
  • Undescended or ectopic testes

Crouzons’s Syndrome 

Crouzon's syndrome is a hereditary condition characterised by the premature merging of several bones of the skull during development, causing the head and face to be shaped abnormally. Many characteristics of Crouzon's Syndrome are caused by early fusing of the skill bones during development. A wide-set bulging eye and visual issues caused by shallow eye sockets, eyes that do not point in the same direction, a beak nose, and an undeveloped upper jaw result from abnormal growth of these bones. Crouzons' Syndrome patients may also have dental issues and hearing loss, which is sometimes accompanied by narrow ear canals. Crouzon's Syndrome causes a hole in the lip and roof of the mouth in a few persons. The severity of these sounds and symptoms vary from person to person. Crouzon's Syndrome patients typically have normal IQ.

Symptoms

  • Middle ear bone malformation 
  • Mild to moderate sensorineural hearing loss
  • May have vision problems 
  • Flattened skull

Down Syndrome

  • Caused by chromosomal abnormality 
  • Mental retardation 
  • Physical features such as flattened skull, slanted eyes, thick tongue and broad hands and feet 
  • Often accompanied by visual impairment or hearing impairment

Friedreich’s Ataxia 

Friedreich’s ataxia (FRDA) is a rare, genetic, neurodegenerative, multi-system, life-shortening disorder. Onset of symptom is usually between the ages of 5 and 15, sometimes even earlier and sometimes significantly later.

Symptoms 

  • Muscle weakness and loss of coordination (ataxia) in the arms and legs
  • Vision impairment, hearing loss, and slurred speech 
  • Aggressive scoliosis (curvature of the spine) 
  • Diabetes mellitus or carbohydrate intolerance 
  • A serious heart condition (enlarged heart – hypertrophic cardiomyopathy)

Goldenhar’s Syndrome

Goldenhar's Syndrome is a congenital birth defect characterised by facial deformities. It usually only affects one side of the face. In 10% of instances, hearing abnormalities of varying severity, feeding difficulties, and significant mental retardation are observed. A wide range of additional illnesses are possible. The cause is unknown.

When there are vertebral deformities and ocular anomalies, the disorder is known as Goldenhar syndrome; when one side of a child's face is smaller or underdeveloped in relation to the other, the condition is known as hemifacial microsomia.

Characteristics

  • A partially formed or totally absent ear (microtia) 
  • The chin may be closer to the affected ear
  • One corner of the mouth may be higher than the other 
  • Benign growths of the eye 
  • A missing eye 
  • Multiple facial, oral and ophthalmic abnormalities 
  • Hearing loss is present at birth and is conducive 
  • Visual impairment may be caused by tumors on the eyeball, Coloboma of the eyelids 
  • Other problems may include, skeletal abnormalities such as scoliosis and clubfoot, congenital heart defects

 Hunter’s - Hurler’s Syndrome 

Rare hereditary disorder characterized by dwarfism, digital contractures, mental retardation and deafness. Speech and mental development are delayed, the child has frequent respiratory infections, and as the disease progresses a typical constellation of physical signs becomes evident: protuberant abdomen, claw hands, excessive hair growth, coarsening of the face with grotesque facial features; retarded growth, and behaviour problems. The disease affects almost exclusively males.

Characteristics

  • Closely associated and resulting from a deficiency of enzymes 
  • Hurler’s syndrome often results in lens opacities, Mental retardation, skeletal abnormalities and progressive hearing loss 
  • Affects males only 
  • Degeneration of the retina, joint, stiffness, coarse facial features, growth failure

Marfan’s Syndrome 

Marfan's syndrome is an autosomal dominant hereditary connective tissue illness characterised by abnormally long limbs, thin fingers, a usually tall stature, and a proclivity for cardiovascular anomalies, particularly those affecting the heart valves and aorta. Other structures and organs that may be affected include the lungs, eyes, dural sac encircling the spinal cord, and hard palate. It is named after Antoine Marfan, a French paediatrician who reported it for the first time in 1899.

Characteristics

  • Disorder of connective tissue 
  • Linked to single tissue on chromosome 15 
  • Not associated with mental retardation 
  • Causes skeleton abnormalities 
  • Spider like fingers / toes 
  • Exceptionally tall, thin body 
  • Heart is often involved 
  • Abnormality of eye (partial or dislocated lenses, cataract, glaucoma, coloboma) 
  • Hearing impairment is rarely associated 
  • Hearing disease  

Rett’s Syndrome

This is a symptom complex that is only seen in females. The child develops properly for 6 to 12 months before the condition presents itself between the ages of 6 months and 4 years. It is a progressive neurodevelopmental illness marked by acquired microcephaly, severe dementia, autism, aimless hand movements, hand-wringing stereotypy, and extremely jerking ataxia. The first sign is frequently hypotonia (loss of muscular tone). In hemizygonus males, inheritance is most likely linked to dominance and lethality. Andress Rett of Austria first described the illness in 1966, although it was not widely acknowledged until two decades later.

Characteristics

  • Found in girls 
  • Affecting approximately 1in 12000 live female births 
  • Normal at birth and during 6 months 
  • Slowing in developmental progress 
  • Poor quality hand use, poor imitative play 
  • Excess of aimless patting movements 
  • Head circumference is normal during first few months but grower is slower than expected 
  • Around (6-36 months) regression begins and skills are lost 
  • Attacks of screaming may occur 
  • Withdrawal from social contact 
  • Speech is lost 
  • Muscle tone may be reduced 
  • Movements are poorly coordinated 
  • Repetitive clapping, wringing or squeezing movements, inevitable continuing mental deterioration 
  • Physical deformity tend to worsen with the age

 Cytomegalovirus (CMS)

CMV is mainly a problem for certain high-risk group, including:
  • Unborn babies whose mothers become infected with CME during, the pregnancy 
  • Children or adults whose immune systems have been weakened by disease or drug treatment, such as organ transplant recipients or people infected with HIV
Infants that are infected before birth normally have no symptoms of a CMV infection after delivery, while some of these babies can develop hearing, visual, neurologic, and developmental difficulties later in life. Premature delivery, being small for gestational age, jaundice, enlarged liver and spleen, microcephaly (small head), seizures, rash, and feeding difficulties are all possible in a few cases. These babies are additionally predisposed to hearing, visual, neurological, and developmental issues.

Characteristics

  •  Not all pregnant women undergo fetal damage
  • Can cause damage even late in pregnancy 
  • CMV infants have auditory, visual and neuromuscular problems and microcephaly 
  • Vision impairment - Optic atrophy, microphthalmia, cataracts 
  • Hearing impairment at later age, progressive, bilateral, mild to profound

Norrie’s Disease

A rare x-linked recessive neurological syndrome characterized by congenital bilateral blindness with an intraocular mass (pseudoglioma), partial avascularity of the retina, hearing loss of a variable onset, as well as mental retardation and or psychotic features.

Characteristics

  • Progressive deafness 
  • Beginning any time between infancy and middle age 
  • Born blind 
  • Eyes look normal ,Corneas and lenses become clouded gradually 
  • May have retinal detachment, Cataracts layer 
  • Intellect / Behavior, appear normal at birth, become progressively mentally retarded 
  • Psychotic behavioral problems 
  • Genetic x linked recessive, so only males are affected (usually)

Refsum’s Syndrome

The symptoms consist of night blindness (the earliest symptom), progressive nerve deafness, atypical retinitis pigmentosa, progressive concentric constriction of visual fields, lenticular opacity, peripheral polyneuropathy, absent or diminished deep tendon reflexes, cerebellar ataxia, loss of sense of smell, unsteady gait, loss of position sense, intention tremor, nystagmus, heart disease with ECG changes, inctyosis, hyeprkeratosis Palmaris etplantars, epiphyseal dysplasia, syndactyly, hammer toe, pescavus, urinary sphincter impairment, and osteochondritis.
  • Trisomy 13-15 syndrome (patau’s asyndrome) 
  • Trisomy 18 syndrome (Edward’s syndrome). 

Turner’s Syndrome

  • Only females are affected by this congenital disorder 
  • Major features stem from a missing x chromosome 
  • Typically short stature and fail to develop secondary sex characteristics 
  • Hearing loss, mental retardation, abnormalities of the eye and heart, kidney disease may be present 
  • Perceptual problems and learning disabilities 
  • Hormone therapy is warranted 
  • Life expectancy is normal

Wildervanck Syndrome

Wildervanck Syndrome, also known as cervicoocloacoustic syndrome, is a rare genetic condition that affects mostly women. Klippel - Feil syndrome (KFS) is a skeletal ailment that is marked by anomalies in specific eye (ocular) movements (i.e., Duane syndrome) and/or hearing impairment at birth (congenital). Individuals with KFS have aberrant union or fusion of two or more spinal column (vertebrae) bones within the neck (cervical vertebrae). Wildervanck syndrome appears to occur at random in most cases for unclear causes (sporadically).

Other Causes

Prematurity

Premature (also called preterm) infants as a group, are at risk for a broad spectrum of complications during the neonatal period and constitute the largest group of infants facing disability or death. Advances in medical technology have significantly improved the longevity of preterm children. As a result, a greater number of premature infants and young children are surviving with multiple congenital anomalies. 

Infections During the Newborn and Infancy period

In a newborn or infant, infectious agents penetrating the brain or spinal cord can cause severe harm because the immune system is unable to protect against such an infection. Mental retardation, vision impairment, hearing impairment, neuromotor difficulties, or any combination of these can be caused by either the infection or the inflammation generated by the infection. Meningitis and encephalitis are two instances.

Social Work with People with Deafblindness

Most people with deafblindness can benefit from social work knowledge and abilities in a variety of contexts. Currently, the primary job of social workers is that of care manager in a multidisciplinary team for people with deafblindness. This function include assessing the need for community support services and commissioning services based on eligibility, availability, and cost criteria, as well as providing more direct support and counselling to individuals' clients and families. Working with people who are deafblind necessitates multidisciplinary, collaborative approaches. However, social workers also provide a wide range of other services, including assessment, guidance, advocacy, and direct practise.

Major services a Social Worker can offer for those deafblind are

  • Counseling to their parents
  • Assessment 
  • Psychotherapy 
  • Advocacy 
  • Therapist 
  • Case Manager 
  • Trainings for Staffs working along with Deafblindness 
  • Community Inclusion 
  • Vocational Guidance (Evans, 2013)

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