Low-Incidence Disabilities People with severe disabilities: require extensive ongoing support typically have more than one disability represent a relatively small percentage   None of the disabilities listed under low-incidence disabilities generally exceed 1% of the school-aged population at any given time. The relative rarity of students with these disabilities in public schools often poses significant challenges for local schools struggling to meet their needs. Since they encounter these students so infrequently, most local schools have little if any knowledge of how to best educate these students, of what technologies are available to assist them, and of how to obtain needed and appropriate support services from outside agencies. All students with low-incidence disabilities thus experience a commonality: they are difficult to serve in current local public school programs. Severe/Multiple Disabilities, Deaf-Blindness, and Traumatic Brain Injury

Severe and Profound Disabilities Severe disability Significant impairments in intellectual, motor, and/or social functioning IQ scores of 35 to 40 or 40 to 55 Profound disability Profound developmental disabilities in all five of the following areas: cognition, communication, social skills, motor-mobility, and activities of daily living IQ scores of 20 to 25 and below Multiple disabilities Multiple disabilities means concomitant impairments, the combination of which causes such severe educational needs that they cannot be accommodated in special education programs solely for one of the impairments

Characteristics Most students with severe disabilities Exhibit significant deficits in intellectual functioning Possess more than one disability Need special services and supports because of motor impediments; communication, visual and auditory impairments; and seizure disorders Treatment of medical conditions and health problems results in frequent and often extended absences from school Exhibit significant and obvious deficits in multiple life-skill or developmental areas Students need extensive ongoing support Slow acquisition rates for learning new skills Poor generalization and maintenance of newly learned skills Limited communication skills Impaired physical and motor development Deficits in self-help skills Infrequent constructive behavior and interaction Stereotypic and challenging behavior

Characteristics and Prevalence Slow acquisition rates for learning new skills Poor generalization and maintenance of newly learned skills Limited communication skills Impaired physical and motor development Deficits in self-help skills Infrequent constructive behavior and interaction Stereotypic and challenging behavior Prevalence Estimates range from 0.1% to 1% of the population

Causes Severe intellectual disabilities can be caused by biological conditions, that may occur before birth (prenatal), during (perinatal),or after birth (postnatal) In almost every case, a brain disorder is involved Brain disorders are the result of either Brain dygenesis (abnormal brain development) Brain damage (caused by influences that alter the structure or function of a brain that had been developing normally up to that point) A significant percentage of children with severe disabilities are born with chromosomal disorders Genetic or metabolic disorders can cause serious problems in physical or intellectual development Complications of pregnancy can cause severe disabilities Severe disabilities may develop later in life from head trauma Factors such as malnutrition, neglect, ingestion of poisonous substances, and certain diseases that affect the brain also can cause severe disabilities In many cases, the cause cannot be clearly determined

Teaching Students with Severe and Multiple Disabilities Teaching students with severe disabilities is difficult and demanding. It requires teachers to: be well organized, firm, and consistent be knowledgeable about one-to-one and small group instructional formats be able to work cooperatively with other teachers and related service professionals maintain accurate records and constant planning for future needs of students be sensitive to small changes in behavior be consistent and persistent in evaluating and changing instruction to improve learning and behavior Working with students who require instruction at its very best can be highly rewarding to teachers

Educational Approaches Curriculum: What Should be Taught Functional skills - activities of daily living skills (ADLs) Age-appropriate skills-activities that are appropriate for same age peers with disabilities Communication skills -an essential quality of human life Literacy -provides access to information and further learning Recreation and leisure skills-the ability to play and later to occupy themselves constructively and pleasurably during free time Making Choices -opportunities to make choices and the ability to make choices Access to general education curriculum-integrating academic standards into lessons on functional skills

Educational Approaches Instructional Methods: How Should Students Be Taught? Select and prioritize instructional targets that are meaningful for students and their families Instruction must be carefully planned, systematically executed, continuously monitored for effectiveness The student’s current level of performance must be assessed The skill must be defined clearly and actively engage the student The skill may need to be broken down into smaller component steps The teacher must determine how the student can actively participate, provide a clear prompt, and gradually withdraw the prompt The student must receive feedback and reinforcement The teacher must use strategies that promote generalization and maintenance The student’s performance must be directly and frequently assessed 12-8

Educational Approaches (cont.) Partial participation Students can be taught to perform selected components or an adapted version of the task Positive Behavioral Support Use of functional assessment methodologies to support student’s placement and guide the development of positive behavior support plans Small group instruction: Skills learned in small groups may be more likely to generalize Provides opportunities for social interaction Provides opportunities for incidental or observation learning from other students May be a more cost-effective use of teacher’s time

Watch the Severe Disabilities Inclusion video Watch the video of the educational approach in use with the student with severe, multiple disabilities What are some advantages you see to the educational approach seen in the video? What are some potential disadvantages? Why do you think the school system and parents chose the approach they did?  

Benefits of the neighborhood school and inclusion Educational Approaches Where Should Students with Severe Disabilities be Taught? Benefits of the neighborhood school and inclusion Peers without disabilities are more likely to function responsibly as adults in a pluralistic society Integrated schools are more meaningful instructional environments Parents and families have greater access to school activities when children are attending their home schools Helps develop range of relationships with peers without disabilities Benefits of inclusion on social skills and relationships have the most extensive empirical support

Teaching Students with Severe and Multiple Disabilities Teaching students with severe disabilities is difficult and demanding. It requires teachers to: be well organized, firm, and consistent be knowledgeable about one-to-one and small group instructional formats be able to work cooperatively with other teachers and related service professionals maintain accurate records and constant planning for future needs of students be sensitive to small changes in behavior be consistent and persistent in evaluating and changing instruction to improve learning and behavior Working with students who require instruction at its very best can be highly rewarding to teachers

Traumatic Brain Injury (TBI) Definition: An acquired injury to the brain caused by an external force, resulting in total or partial functional disability or psychosocial impairment, or both that adversely affects a child’s educational performance Applies to open or closed head injuries TBI is the most common acquired disability in childhood and the leading cause of death in children TBI is brain damage acquired by trauma

Types and Causes of TBI Under age 5, accidental falls Head injuries are classified by the type of injury, by the kind of damage sustained by the brain, and by the location of the injury Open head injury-the result of penetration of the skull Closed head injury-occurs when the head hits a stationary object with such force that the brain slams against the inside of the cranium Concussion, a mild brain injury, is a brief loss of consciousness Contusions usually accompany a moderate brain injury and consists of bruising, swelling, and bleeding Hematoma occurs when blood vessels in the brain rupture Coma is a severe head trauma Anoxia is the loss of oxygen to the brain for a period of time during a severe brain injury Under age 5, accidental falls After age 5, vehicular accidents Shaken Baby syndrome

Traumatic Brain Injury Prevalence 250:100,000 children A “silent epidemic” Males more prone than females Shaken Baby

Effects and Educational Implications of TBI TBI is complex with symptoms varying depending on severity, extent and site, age of the child at the time of the injury, and time passed since the injury Three categories of impairments from brain injuries Physical and sensory changes Cognitive impairment Social, behavioral, and emotional problems Recovery is a long and unpredictable process EDUCATIONAL CONSIDERATIONS NEED TO BE A TEAM APPROACH IEPs need to be reviewed more often – should not go longer than 6 months remembering learning new information speech/language difficulty sequencing making sense of things uneven ability performance uneven progress inappropriate manners understanding humor easily tired, frustrated unreasonable anxiety irritability mood swings depression aggression perseveration

Watch video on Traumatic Brain Injury Share thoughts about the recovery of students with TBI.

Deaf-Blindness Deaf-blindness means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness The majority have some functional hearing and/or vision More than 90% have one or more additional disabilities 57% also have physical disabilities 66% have cognitive impairments 38% have complex health care needs

Characteristics and Prevalence of Deaf-Blindness Poor central visual acuity or/and a field defect Hearing, so severe speech cannot be understood without amplification Combination has extreme affect on daily life activities, psychosocial adjustment, or obtaining vocation Criteria vary from state-to-state Rare: 1,583 students received services in 2011

Causes of Deaf-Blindness Genetic/chromosomal syndrome CHARGE syndrome: abnormalities of pupil, retina, or optic nerve Usher syndrome: retinitis pigmentosa (night blindness and tunnel vision) Down syndrome Prenatal conditions Rubella or German measles Congenital cytomegalovirus Postnatal conditions Meningitis TBI CHARGE syndrome is a disorder that affects many areas of the body. CHARGE stands for coloboma, heart defect, atresia choanae (also known as choanal atresia), retarded growth and development, genital abnormality, and ear abnormality. The pattern of malformations varies among individuals with this disorder, and infants often have multiple life-threatening medical conditions. The diagnosis of CHARGE syndrome is based on a combination of major and minor characteristics. The major characteristics of CHARGE syndrome are more specific to this disorder than are the minor characteristics. Many individuals with CHARGE syndrome have a hole in one of the structures of the eye (coloboma), which forms during early development. A coloboma may be present in one or both eyes and can affect a person's vision, depending on its size and location. Some people also have small eyes (microphthalmia). One or both nasal passages may be narrowed (choanal stenosis) or completely blocked (choanal atresia). Individuals with CHARGE syndrome frequently have cranial nerve abnormalities. The cranial nerves emerge directly from the brain and extend to various areas of the head and neck, controlling muscle movement and transmitting sensory information. Abnormal function of certain cranial nerves can cause swallowing problems, facial paralysis, a sense of smell that is diminished (hyposmia) or completely absent (anosmia), and mild to profound hearing loss. People with CHARGE syndrome also typically have middle and inner ear abnormalities and unusually shaped ears. The minor characteristics of CHARGE syndrome are not specific to this disorder; they are frequently present in people without CHARGE syndrome. The minor characteristics include heart defects, slow growth starting in late infancy, developmental delay, and an opening in the lip (cleft lip) with or without an opening in the roof of the mouth (cleft palate). Individuals frequently have hypogonadotropic hypogonadism, which affects the production of hormones that direct sexual development. Males are often born with an unusually small penis (micropenis) and undescended testes (cryptorchidism). External genitalia abnormalities are seen less often in females with CHARGE syndrome. Puberty can be incomplete or delayed. Individuals may have a tracheoesophageal fistula, which is an abnormal connection (fistula) between the esophagus and the trachea. People with CHARGE syndrome also have distinctive facial features, including a square-shaped face and difference in the appearance between the right and left sides of the face (facial asymmetry). Individuals have a wide range of cognitive function, from normal intelligence to major learning disabilities with absent speech and poor communication. How common is CHARGE syndrome? CHARGE syndrome occurs in approximately 1 in 8,500 to 10,000 individuals. Usher syndrome, often referred to as retinitis pigmentosa, is the most common condition that involves both vision and hearing, and the condition worsens over time. Early intervention appears to be critical for children who are deafblind and their families. See Table 12.1 and 12.2 for more details and definitions.

Educational Considerations for Deaf-Blindness Direct teaching Structure and predictability Communication Orientation and mobility Behavior Factors affecting outcomes Quality and intensity of instruction received Degree and type of visual and auditory impairment varies dramatically Vast majority have other disabilities and medical conditions Communication Braille Adapted signs Touch cues Problems accessing information Problems communicating Pattern of isolation Importance of language-rich environment Problems navigating the environment

Early Intervention for Children with Low-Incidence, Multiple, and Severe Disabilities Many begin life in neonatal intensive care units. “Early intervention” may be early in life, or as soon as possible after a disability is detected. Family-centered practices Multicultural perspective Cross-disciplinary collaboration Developmentally and chronologically age-appropriate practices

Person-centered plans Natural supports Vocational programming Transition for Students with Low-Incidence, Multiple, and Severe Disabilities Self-determination Person-centered plans Natural supports Vocational programming Shift to actual work settings in secondary school Community and domestic living skills Hallahan, Kauffman, & Pullen. Exceptional Learners: An Introduction to Special Education, Thirteenth Edition. © 2014, 2012, 2009, 2006 by Pearson Education, Inc. All rights reserved.