Discussion – Chapter Nine
This chapter is about people whose ability to understand the world and develop meaning from social networks may differ significantly from what is considered “typical.” Their growth and development depend on the educational, social, and medical supports made available throughout life.
Use the question below to guide your discussion:
Why are early intervention services for children with intellectual disabilities so important?
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HERE IS THE BOOK SO YOU CAN GET INFORMATION HERE PLEASE DO NOT PLAGIRIZE
I’m Lauren Potter. I’m just a 24-year-old girl who is working hard to live my dreams and make my difference in the world.In order to do that, I’ve had to face challenges. Sometimes even seem-ingly simple things, like walking and talking, have been a challenge. But I never let that stop me. I have always continued to dream big and to fight hard to pursue those dreams.When I was young, my dream was to be an actress. Sure people told me I’d never be able to do it, but I replied, “Just watch me!” Now they are watch-ing me, but this time on the big screen. I filmed my first movie when I was 16 years old, and I am currently an actress on Fox’s hit TV show Glee t h a t just celebrated its 100th episode.As a girl who has accomplished things that many didn’t think were possible, I know that people can be wrong when they judge someone else just because they are different. We are all different. And that isn’t bad, it’s just, well, different!Because of Glee I have been given a chance to pursue another dream of mine—to make the world a more welcoming place for people who are different—especially for people like me who have always been told “you can’t” instead of “you can.” I want to live in a world where everyone can live, go to school and go to work without having to be afraid. Afraid of being judged, afraid of being bullied or cyberbullied. Afraid of new things. Afraid of failure. Afraid of dreaming. In fact, I want to live in a world where people are actually celebrated for their differences, just as I celebrate mine!Do you want to live in that world? Do you want to join me in “being the change”?I believe we can be the generation that makes it happen! That’s why I’m taking a stand for acceptance and in-clusion. And I’m hoping that everyone will join me.Special Olympics is an organiza-tion that celebrates differences and gives people of all abilities the chance to be a champion and a star. At the Special Olympics World Games Los Angeles 2015, the whole world will have a chance to show that they too stand up for acceptance and inclusion of all people by celebrating the joy, courage, and determination of the 7,000 athletes who will participate. I am so proud and honored to be a part of this wonderful mission as a World Games Goodwill Ambassador. I will continue to cheer on the athletes and stand with them as we tell those who still may say or think we can’t do it, “Just watch me!”SOURCE: Potter, Lauren. (2104, June 2). “I’m Talking a Stand to Make My Difference in the World.” Huffington Post. The Blog. Retrieved February 7, 2015, from http://www.huffingtonpost.com/lauren-potter/im-taking -a-stand-to-make_b_5431373.html©Helga Esteb/Shutterstock.com9-1 a changing era in the Lives of people with Intellectual DisabilitiesThis chapter is about people whose ability to understand the world and develop meaning from social networks may differ significantly from what is considered “typical.” Their growth and development depend on the educational, social, and medical supports made available throughout life. Lauren from our opening Snapshot is a young woman with an intellectual disability who has drive, talent, and a wonderful support network of family, friends, and teachers. As she moves through her adult years, she is achieving the dream of being an actress, but still longs for being viewed first and foremost as “Lauren,” a typical person who just happens to have Down syndrome.Lauren is also a person with an intellectual disability, but she is not necessarily representative of the wide range of ability that characterizes people who have this condi-tion. For example, this wide range of ability may include 6-year-old Juliana, described as having a mild intellectual disability who may be no more than one or two years behind the normal development of academic and social skills. Prior to the passage of IDEA, many children with intellectual disabilities were not identified until they entered elementary Intellectual disabilityLimited ability to reason, plan, solve problems, think abstractly, comprehend complex ideas, learn quickly, and learn from experience. school at age 5 or 6, because they may not have exhibited physical or learning delays that are readily identifiable during the early childhood years. As these children enter school, developmental delays become more apparent. During early primary grades, it is common for the cognitive and social differences of children with intellectual disabilities to be at-tributed to immaturity. However, with the passage of IDEA, educators now recognize the need for specialized services to support a child’s development in the natural settings of school, neighborhood, and home.People with moderate to severe intellectual disabilities have challenges that often transcend the classroom. Some have significant, multiple disabling conditions, including sensory, physical, and emotional problems. People with moderate intellectual disabilities are able to learn and use adaptive skills that allow independence, with varying levels of support. These skills include the abilities to dress and feed themselves, to meet their own personal care and health needs, and to develop safety skills that enable them to be more independent in the community. These individuals often have the ability to communicate their needs and desires. Most people develop spoken language skills; others may rely on manual forms of communication like sign language or communication boards. Their social interaction skills may be limited, which makes it a challenge for them to interact spontaneously with others.People with profound intellectual disabilities often depend on others to maintain even their most basic life functions, including eating, hygiene, communicating, and dressing. This certainly does not mean that education and treatment beyond routine care and main-tenance are not beneficial. The extent of profound disabilities is one reason why this group of children was excluded from public schools prior to passage of IDEA. Exclusion was often justified on the basis that schools did not have the resources, facilities, or trained profes-sionals to deal with the needs of these students.9-2 Definitions and classification of Intellectual DisabilitiesPeople with intellectual disabilities have been labeled with pejorative terms for centuries, including “feebleminded,” “idiot,” “imbecile,” and “moron.” More recently, they have been stereotyped with one of the most derogatory terms in the English language—retard. As Lauren Potter stated in an interview with Buxton (2015):The R-word is a hateful word. We need to stop, to end the R-word in every place. I don’t know why people are so mean. All I want from you is to stop saying the R-word…. That’s what I am trying to let my fans know, that’s a really bad word. You can’t say any-thing bad about other people—it will hurt other people.The terms mental retardation and mentally retarded were officially stripped from United States federal health, education, and labor policy in 2010, when Rosa’s Law (PL 111-256) was passed. “Intellectual disability” or “individuals with an intellectual disability” are now used to replace those outdated terms. Although the policy has changed, the pejorative use of the r-word is too frequently used today.9-2a DefinitionThe American Association on Intellectual and Developmental Disabilities (AAIDD) states that intellectual disability is characterized by significant limitations in both intellectual functioning and in adaptive behavior, and must originate before the age of 18 (AAIDD, 2013).The AAIDD definition has evolved through years of effort to more clearly reflect the ever-changing understanding of intellectual disabilities. In recent years, the concept of adaptive behavior has played an increasingly important role in defining and classifying people with intellectual disabilities.Intellectual Functioning Intellectual functioning, often referred to as intelligence, includes an individual’s ability to reason, plan, solve problems, think abstractly, compre-hend complex ideas, and learn from experience (AAIDD, 2013). These abilities are assessed by a standardized intelligence test in which a person’s score is compared with the average of other people who have taken the same test (referred to as a normative sample). The statisti-cal average for an intelligence test is generally set at 100. We state this by saying that the person has an intelligence quotient (IQ) of 100. Psychologists use a mathematical concept called the standard deviation to determine the extent to which any given individual’s score deviates from this average of 100. An individual who scores more than two standard devia-tions below 100 on an intelligence test meets AAIDD’s definition of significant limitations in intellectual functioning. This means that people with IQs of approximately 70 to 75 and lower would be considered as having intellectual disabilities.adaptive Behavior AAIDD defines adaptive behavior as a collection of conceptual, social, and practical skills that have been learned by people to function in their everyday lives. (Figure 9.1 provides several examples of adaptive behavior.) If a person has limita-tions in these adaptive skills, he or she may need some additional assistance or supports to participate more fully in both family and community life.As is true with intelligence, adaptive skills also may be measured by standardized tests. These tests, most often referred to as adaptive behavior scales, generally use structured interviews or direct observations to obtain information. Adaptive behavior scales measure the individual’s ability to take care of personal needs (such as hygiene) and to relate ap-propriately to others in social situations. Adaptive skills may also be assessed through informal appraisal, such as observations by family members or professionals who are familiar with the individual, or through anecdotal records.age of Onset The AAIDD definition specifies that the intellectual disabilities must originate before a person is 18 years old. The reason for choosing age 18 as a cutoff point is that intellectual disabilities belong to a family of conditions referred to as developmental dis-abilities. Developmental disabilities are mental and/or physical impairments that are diag-nosed at birth or during the childhood and adolescent years. A developmental disability results in substantial functional limitations in at least three areas of major life activity, such as self-care, language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency.AAIDD emphasizes the importance of a positive environment for fostering growth, development, and individual well-being. Thus, a person’s participation and interaction within the environment are indicators of adaptive functioning. The more an individual engages in activities in their communities, such as work, leisure, and community liv-ing, the more likely that an “adaptive fit” will develop between the person and his or her environment.Standard deviationA statistical measure of the amount that an individual score deviates from the average.adaptive behaviorConceptual, social, and practical skills that people have learned to function in their everyday lives.Developmental disabilitiesMental and/or physical impair-ments that limit substantial functioning in at least three areas of major life activity.Standard 1 Learner Development and Individual Learning DifferencesPracticalActivities of daily livingInstrumental activities of daily livingEatingTransfer/mobilityToiletingDressingOccupational skillsMaintains safe environmentsMeal preparationHousekeepingTransportationTaking medication Money managementTelephone use The physical and mental health of an individual influences his or her overall intellec-tual and adaptive functioning. AAIDD indicates that the functioning level for people with intellectual disabilities is significantly affected (facilitated or inhibited) by the effects of physical and mental health. Some individuals [with intellectual disabilities] enjoy good health with no significant activity limitations; others, however, have a variety of health limitations, such as seizure disorder or cerebral palsy, that could create compounding conditions that lead to restricted activities and social participation. Additionally, people with intellectual disabilities have a 50 percent higher rate of psychiatric disorders than the general population (Werner & Stawski, 2012). When a person has a dual diagnosis, a co-occurrence of intellectual disability and a psychiatric disorder, the compounded effects of the two conditions can create a greater need for support.The level of independence a person with an intellectual disability has will be affected by the environmental context of their lives. Environmental context is the term for the inter-related conditions in which people live their lives. Context is based on an environmental perspective with three different levels: (1) the immediate social setting that includes the person and her or his family, (2) the broader neighborhood, community, or organizations that provide services and supports (such as public education), and (3) the overarching patterns of culture and society. The various levels are important to people with intellectual disabilities because they provide differing opportunities and can foster well-being.putting the Definition into practice There are five criteria that professionals should apply as they put the definition into practice:1. Limitations in a person’s present functioning must be considered within the context of community environments typical of the individual’s age, peers, and culture.2. Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors.3. Within an individual, limitations often coexist with strengths.4. An important purpose of describing limitations is to develop a profile of needed supports.5. With appropriate personalized supports over a sustained period, the life functioning of the person with [intellectual disabilities] generally will improve. (AAIDD, 2013)9-2b classificationTo more clearly understand the diversity of people with intellectual disabilities, several classification systems have been developed. Each classification method reflects an at-tempt by a particular discipline (such as medicine or education) to better understand and respond to the needs of individuals with intellectual disabilities. We will discuss four of these methods.Severity of the condition The extent to which a person’s intellectual capabilities and adaptive skills differ from what is considered “normal” can be described by using terms such as mild, moderate, severe, or profound. Mild describes the highest level of performance; profound describes the lowest level. Distinctions between severity levels associated with in-tellectual disabilities are determined by a clinician’s impression of the severity of adaptive functioning. Severity is assessed across three domains. These are conceptual, social, and practical life skills (American Psychiatric Association, 2013).Medical Descriptors Intellectual disabilities may be classified on the basis of the biological origin of the condition. A classification system that uses the cause of the condition to differentiate people with intellectual disabilities is often referred to as a medical classifica-tion system because it emerged primarily from the field of medicine. Common medical de-scriptors include fetal alcohol syndrome, chromosomal abnormalities (e.g., Down syndrome), metabolic disorders (e.g., phenylketonuria, thyroid dysfunction), and infections (e.g., syphilis, rubella). These medical conditions will be discussed more thoroughly in the section on causation.
classification Based on Needed Support Today, AAIDD uses a classifica-tion system based on the type and extent of the support that the individual requires to function in the natural settings of home and community. Four levels of support are recommended:●●Intermittent. Supports are provided on an “as-needed basis.” These supports may be (1) episodic—that is, the person does not always need assistance; or (2) short-term, occurring during lifespan transitions (e.g., job loss or acute medi-cal crisis). Intermittent supports may be of high or low intensity.●●Limited. Supports are characterized by consistency; the time required may be limited, but the need is not intermittent. Fewer staff may be required, and costs may be lower than those associated with more intensive levels of support (examples include time-limited employment training and supports during transition from school to adulthood).●●Extensive. Supports are characterized by regular involvement (e.g., daily) in at least some environments, such as work or home; supports are not time-limited (e.g., long-term job and home-living support will be necessary).●●Pervasive. Supports must be constant and of high intensity. They have to be pro-vided across multiple environments and may be life-sustaining in nature. Pervasive supports typically involve more staff and are more intrusive than extensive or time-limited supports.The AAIDD’s emphasis on classifying people with intellectual disabilities on the basis of needed support is an important departure from the more restrictive perspectives of the traditional approaches. Supports may be described not only in terms of the level of assistance needed, but also by type—that is, as formal or natural support systems. Formal supports may be funded through government programs, such as income maintenance, health care, education, housing, or employment. Another type of formal support is the advocacy organi-zation (e.g., The ARC of the United States) that lobbies on behalf of people with intellectual disabilities for improved and expanded services, as well as for providing family members a place to interact and support one another. Natural supports differ from formal supports in that they are provided not by agencies or organizations, but by the nuclear and extended family members, friends, or neighbors. Natural supports are often more effective than formal supports in helping people with intellectual disabilities access and participate in a community setting. Research suggests that adults with intellectual disabilities who are suc-cessfully employed following school find more jobs through their natural support network of friends and family than through formal support systems (Crockett & Hardman, 2009).9-3 characteristics and prevalence of Intellectual DisabilitiesWe now examine the myriad characteristics commonly found in people with intellectual disabilities that can affect their academic learning, as well as their ability to adapt to home, school, and community environments.9-3a characteristics common to children and Youth with Intellectual DisabilitiesPeople who have an intellectual disability are each unique. They have strengths and chal-lenges just like their typically developing peers. The following is a list of characteristics commonly occurring with intellectual disability, but will vary in severity with each person.the arc of the United StatesA national organization that works to enhance the quality of life for people with intellectual disabilities.Natural supportsSupports for people with disabili-ties that are provided by family, friends, and peers. Learning and Memory Intelligence is the ability to acquire, remember, and use knowledge. A primary characteristic of intellectual disabilities is diminished intellectual abil-ity that translates into a difference in the rate and efficiency with which the person acquires, remembers, and uses new knowledge, compared to the general population.The learning and memory capabilities of people with intellectual disabilities are signifi-cantly below average in comparison to peers without disabilities. Children with intellectual disabilities, as a group, are less able to grasp abstract, as opposed to concrete, concepts. Accordingly, they benefit from instruction that is meaningful and useful, and they learn more from contact with real objects than they do from representations or symbols.Intelligence is also associated with learning how to learn, often referred to as meta-cognition, and with the ability to apply what is learned to new experiences, known as generalization. Children and adults with intellectual disabilities learn at a slower pace than peers without disabilities, and they have difficulty relating information to new sit-uations (Beirne-Smith, Patton, & Hill, 2010; Hua, Morgan, Kaldenbers, & Goo, 2012). Generalization happens “when a child applies previously learned content or skills to a situ-ation in which the information has not been taught” (Drew & Hardman, 2007; Falcomata, Wacker, Ringdahl, Vinquist, & Dutt, 2013). The greater the severity of intellectual deficit, the greater the difficulties with memory. Memory problems in children with intellectual disabilities have been attributed to several factors. People with intellectual disabilities have trouble focusing on relevant stimuli in learning and in real-life situations, sometimes attending to the wrong things (Kittler, Krinsky-McHale, & Devenny, 2004; Westling & Fox, 2009).Self-regulation People with intellectual disabilities do not appear to develop efficient learning strategies, such as the ability to rehearse a task (to practice a new concept, either out loud or to themselves, over and over). The ability to rehearse a task is related to a broad concept known as self-regulation (Beirne-Smith, Patton, & Hill, 2009). Whereas most peo-ple will rehearse to try to remember, individuals with intellectual disabilities do not appear to be able to apply this skill.Some researchers have begun to focus on information-processing theories to better un-derstand learning differences in people with intellectual disabilities. Information-processing theorists study how a person processes information from sensory stimuli to motoric output (Sternberg, 2008). In information-processing theory, the learning differences in people with intellectual disabilities are seen as the underdevelopment of metacognitive processes. Meta-cognitive processes help the person plan how to solve a problem. First, the person decides which strategy he or she thinks will solve a problem. Then the strategy is implemented. Dur-ing implementation, the person monitors whether the strategy is working and makes any ad-aptations necessary. Finally, the results of the strategy are evaluated in terms of whether the problem has been solved and how the strategy could be used in other situations (Sternberg, 2008). Even though children with intellectual disabilities may have difficulty applying the best strategy when confronted with new learning situations, they can learn ways to do so. Standard 1 Learner Development and Individual Learning DifferencesGeneralizationThe process of applying previously learned information to new settings or situations.Self-regulationThe ability to regulate one’s own behavior.Information-processing theoriesTheories on how a person processes information from sensory stimuli to motoric output.E-BuddiesBest Buddies International, founded by Anthony K. Shriver (son of Sar-gent and Eunice Kennedy Shriver), offers a social media program called e-Buddies, which provides opportu-nities for Internet friendships among people with intellectual and develop-mental disabilities and people who do not have a disability. The e-Buddies program has proven to be a fun and safe way for people with intellec-tual disabilities to make new friends. E-mail matches are made on the ba-sis of similar age, gender, geography, and shared interests. The e-Buddies program provides individuals with an intellectual disability an opportunity to develop new friendships through social media while also acquiring computer skills. For people without disabilities, e-Buddies is a unique op-portunity to change a life and make a friend. (For more information, visit the e-Buddies website.) Social stories are one method that is used to teach self-regulation to individuals who have intellectual disabilities. A social story is a personalized narrative that embeds social cues and actions that are appropriate in particular social situations (Flores et al., 2014).adaptive Skills The abilities to adapt to the demands of the environment, relate to others, and take care of personal needs are all important aspects of an independent lifestyle. In the school setting, adaptive behavior is defined as the ability to apply skills learned in a classroom to daily activities in natural settings.The adaptive skills of people with intellectual disabilities often lag behind those of their peers without disabilities. A child with intellectual disabilities may have difficulty in both learning and applying skills for a number of reasons, including a higher level of distract-ibility, inattentiveness, failure to read social cues, and impulsive behavior. Thus, these children will need to be taught appropriate reasoning, judgment, and social skills that lead to more positive social relationships and personal competence. Adaptive skill differences for people with intellectual disabilities may also be associated with a lower self-image and a greater expectancy for failure in both academic and social situations.academic achievement Re-search on the academic achievement of children with mild to moderate in-tellectual disabilities has suggested that they will experience significant delays in the areas of literacy and mathematics. Reading comprehension is usually considered the weakest area of learning. In general, students with mild intellectual disabilities are better at decoding words than comprehend-ing their meaning (Drew & Hardman, 2007), and they tend to read below their own developmental level (Katims, 2000; Thurlow et al., 2012).Children with intellectual disabilities also perform poorly on mathematical computa-tions, although their performance may be closer to what is typical for their developmental level. These children may be able to learn basic computations but may be unable to apply concepts appropriately in a problem-solving situation (Beirne-Smith, Patton, & Hill, 2010; Thurlow et al., 2012).A growing body of research has indicated that children with moderate or severe intel-lectual disabilities can be taught academics as a means to gain information, participate in social settings, increase their orientation and mobility, and make choices (Browder, Ahlgrim-Delzell, Courtade-Little, & Snell, 2011; Browder, Jimenez, & Trela, 2012; Browder & Spooner, 2011). Reading helps students develop a useful vocabulary that will facilitate their inclusion in school and community settings (Browder et al., 2011). People with moderate to severe intellectual disabilities who struggle with phonetic reading can often learn to memorize whole words. Sight word reading often begins with learning their names and those of significant others in their lives, as well as common survival words, including help, exit, danger, and stop. Math assists students in learning such skills as how to tell time, how to add and subtract small sums to manage finances (such as balancing a checkbook), and how to appropriately exchange money or use debit cards for products in community settings (e.g., grocery stores, movie theaters, and vending machines).Speech and Language One of the most serious and obvious characteristics of indi-viduals with intellectual disabilities is delayed speech and language development. The most common speech difficulties involve articulation problems, voice problems, and stuttering. Language problems are generally associated with delays in language development rather than with a bizarre use of language (Beirne-Smith, Patton, & Hill, 2010; Moore & Montgomery, 2008). Kaiser (2000) emphasized that “the overriding goal of language inter-vention is to increase the functional communication of students” (p. 457).articulation problemsSpeech problems such as omissions, substitutions, additions, and distortions of words.Voice problemsAbnormal acoustical qualities in a person’s speech.StutteringA speech problem involving abnor-mal repetitions, prolongations, and hesitations as one speaks. There is considerable variation in the language skills of people with intellectual disabil-ities. In general, the severity of the speech and language problems is positively correlated with the cause and severity of the intellectual disabilities: The milder the intellectual dis-abilities, the less pervasive the language difficulty (Moore & Montgomery, 2008). Speech and language difficulties may range from minor speech defects, such as articulation prob-lems, to the complete absence of expressive language. Speech and language pathologists are able to minimize speech differences for most students with intellectual disabilities.physical Development The physical appearance of most children with intellectual disabilities does not differ from that of same-age children who are not disabled. However, a relationship exists between the severity of the intellectual disabilities and the extent of phys-ical differences for the individual (Beirne-Smith, Patton, & Hill, 2010; Drew & Hardman, 2007). For people with severe intellectual disabilities, there is a significant probability of re-lated physical challenges; genetic factors are likely to underlie both disabilities. Individuals eunice Kennedy Shriver: a celebration of an extraordinary Life Dedicated to people with Intellectual DisabilitiesAs founder and honorary chairperson of Special Olympics and executive vice president of the Joseph P. Kennedy, Jr. Foundation, Eunice Kennedy Shriver was a leader in the worldwide struggle to improve and enhance the lives of individuals with intellectual disabili-ties for more than five decades. Born in Brookline, massachusetts, the fifth of nine children of Joseph P. and Rose Fitzgerald Kennedy and sister to Presi-dent John F. Kennedy, she received a bachelor of arts degree in sociology from Stanford University….In 1957, Eunice Shriver took over the direction of the Joseph P. Kennedy, Jr. Foundation. The foundation, estab-lished in 1946 as a memorial to Joseph P. Kennedy, Jr.—the family’s eldest son, who was killed in World War II—has two major objectives: to seek the preven-tion of intellectual disabilities by iden-tifying its causes, and to improve the means by which society deals with citi-zens who have intellectual disabilities. Under Eunice Shriver’s leadership, the foundation has helped achieve many significant advances, including the es-tablishment by President Kennedy of the President’s Committee on mental Retardation in 1961 (now called the President’s Committee for People with Intellectual Disabilities); development of the National Institute of Child Health and Human Development (NICHD) in 1962 (now the Eunice Kennedy Shriver NICHD); the establishment of a network of university-affiliated facilities and mental retardation [intellectual disabili-ties] research centers at major medical schools across the United States in 1967; the establishment of Special Olympics in 1968; the creation of major centers for the study of medical ethics at Har-vard and Georgetown Universities in 1971; the founding of the “Community of Caring” for the reduction of intellec-tual disabilities among babies of teen-agers in 1981…and the establishment of “Community of Caring” programs in 1,200 public and private schools (now the Eunice Kennedy Shriver National Center for Community of Caring at the University of Utah).Recognized throughout the world for her efforts on behalf of people with in-tellectual disabilities, Shriver received many honors and awards, including the Presidential medal of Freedom, the Le-gion of Honor Award, the Prix de la Cou-ronne Francaise, the mary Lasker Award, the Philip murray-William Green Award (presented to Eunice and Sargent Shriver by the AFL-CIO), the American Associa-tion on mental Deficiency (AAmD) Hu-manitarian Award, the Laetare medal of the University of Notre Dame, the Order of the Smile of Polish Children, the Frank-lin D. Roosevelt Four Freedoms Freedom from Want Award, the National Women’s Hall of Fame, the Laureus Sports Award, the National Collegiate Athletics As-sociation (NCAA) Theodore Roosevelt Award, and the International Olympic Committee Award….In 1984, U.S. President Reagan awarded Eunice Shriver the Presidential medal of Freedom, the nation’s highest civil-ian award, for her work on behalf of people with intellectual disabilities, and in 2005, she was honored for her work with Special Olympics as one of the first recipients of a sidewalk medallion on The Extra mile Points of Light Path-way in Washington, D.C. Eunice passed away on August 11, 2009 at the age of 88. To learn more about Eunice Kennedy Shriver, visit the Eunice Kennedy Shriver or the Special Olympics websites.Question for ReflectionEunice Kennedy Shriver is an example of how one very special person can make a profound difference. How have you made a difference in the lives of people with intellectual disabilities? Volunteer-ing for Special Olympics, Best Buddies, or the Community of Caring schools where you live?
with mild intellectual disabilities, in contrast, may exhibit no physical differences because the intellectual disabilities may be associated with environmental, not genetic, factors.The majority of children with severe and profound intellectual disabilities have multiple disabilities that often affect nearly every aspect of their intellectual and physical develop-ment (Westling & Fox, 2009). Increasing health problems for children with intellectual disabilities may be associated with genetic or environmental factors. For example, people with Down syndrome have a higher incidence of congenital heart defects and respiratory problems directly linked to their genetic condition. On the other hand, some children with intellectual disabilities experience health problems because of their living conditions. A significantly higher percentage of children with intellectual disabilities come from low socioeconomic backgrounds in comparison to peers without disabilities. Children who do not receive proper nutrition and who are exposed to inadequate sanitation have a greater susceptibility to infections (Drew & Hardman, 2007). Health services for families in these situations may be minimal or nonexistent, depending on whether they are able to access government medical support, so children with intellectual disabilities may become ill more often than those who do not have disabilities. Consequently, children with intellectual disabilities may miss more school or not get involved in healthy activities, such as sports and recreation.In the area of health and physical fitness, one individual truly stands alone as recog-nizing the importance of engaging people with intellectual disabilities in fitness activi-ties, particularly sports. This person was Eunice Kennedy Shriver, founder of the Special Olympics, and sister of President John F. Kennedy. More than any other notable figure in history, Eunice Shriver changed society’s perceptions of what is possible for people with intellectual disabilities. For more information on the unparalleled accomplishments of Eunice Shriver, see the nearby Reflect on This feature, “Eunice Kennedy Shriver: A Celebra-tion of an Extraordinary Life Dedicated to People with Intellectual Disabilities.”9-3b prevalence of Intellectual DisabilitiesThe prevalence of intellectual disabilities worldwide and across all ages is estimated at 1 percent of the total population (Maulik et al., 2011). For school-age children between ages 6 and 21, the most recent annual report from the U.S. Department of Education (2014) reported that approximately 414,000 students were labeled as having intellectual disabili-ties and were receiving services under IDEA. Approximately 7 percent of all students with disabilities between the ages of 6 and 21 are identified as having intellectual disabilities (see Figure 9.2).The President’s Committee for People with Intellectual Disabilities (2014) estimates that approximately 7 to 8 million Americans of all ages have intellectual disabilities. Intellectual disabilities affect about one in ten families in the United States. Note that we are able only to estimate prevalence, because no one has actually counted the number of people with intellectual disabilities.Total School-AgePopulationSchool Populationwith Intellectual Disabilities 9-4 causes of Intellectual DisabilitiesIntellectual disabilities result from multiple causes, some known, many unknown (The ARC, 2011a). Possible known causes of intellectual disabilities include genetic conditions, problems during pregnancy, problems at birth, problems after birth, and poverty-related deprivation.9-4a Genetic conditionsMany genetic conditions are associated with intellectual disability. These conditions may result from genes inherited from parents, errors when genes combine, or from external factors, such as infections during pregnancy or overexposure to X-rays. Genetic disorders can be classified into three types: chromosomal, single gene, and multifactorial disorders. Chromosomal disorders are caused by a person having too many or two few chromosomes or by a change in the structure of the chromosome that disrupts its function.One of the most widely recognized types of intellectual disabilities, Down syndrome, results from chromosomal abnormality. There are more than 400,000 people living in the United States with Down syndrome. About one in every 700 babies in the United States is born with Down syndrome (National Down Syndrome Society [NDSS], 2015). Physical characteristics of a person with Down syndrome include slanting eyes with folds of skin at the inner corners (epicanthal folds); excessive ability to extend the joints; short, broad hands with a single crease across the palm on one or both hands; broad feet with short toes; a flat bridge of the nose; short, low-set ears; a short neck; a small head; a small oral cavity; and/or short, high-pitched cries in infancy.Down syndrome has received widespread attention from medical, education, and social services professionals for many years. Part of this attention is due to the ability to iden-tify a cause with some degree of certainty. The cause of such genetic errors has become increasingly associated with the age of both the mother and the father. The most common type of Down syndrome is trisomy 21. In about 25 percent of the cases associated with trisomy 21, the age of the father (particularly when he is over 55 years old) is also a factor.Other chromosomal disorders associated with intellectual disabilities include Williams syndrome and fragile X syndrome. Williams syndrome, a rare genetic disease that occurs in about 1 in every 20,000 births, is characterized by an absence of genetic materials on the seventh pair of chromosomes. Most people with Williams syndrome have some degree of intellectual disabilities and associated medical problems (such as heart and blood vessel abnormalities, low weight gain, dental abnormalities, kidney abnormalities, hypersensitive hearing, musculoskeletal problems, and elevated blood calcium levels). While exhibiting deficits in academic learning and spatial ability typical of people with intellectual disabili-ties, they are often described as highly personable and verbal, exhibiting unique abilities in spoken language.Fragile X syndrome is a common heredi-tary cause of intellectual disabilities associ-ated with genetic anomalies in the 23rd pair of chromosomes. Males are usually more severely affected than females because they have only one X chromosome. Females have more protection because they have two X chromosomes; one X contains the normal functioning version of the gene and the other is nonfunctioning. The normal gene partially compensates for the nonfunc-tioning gene. The term fragile X refers to the fact that this gene is pinched off in some blood cells. For those affected by fragile X syndrome, intellectual differences can range from mild learning disabilities and a normal IQ to severe intellectual disabilities and autism. Physical features may include a large head and flat ears; a long, narrow face with a broad nose; a large forehead; a squared-off chin; prominent testicles; and large hands. People with fragile X are also characterized by speech and language delays or deficiencies and by behavioral problems. Some people with fragile X are socially engaging and friendly, but others have autistic-like characteristics (poor eye contact, hand flapping, hand biting, and a fascination with spinning objects) and may be aggressive. Males may also exhibit hyperactivity.Single-gene disorders occur when cells cannot produce proteins or enzymes needed to process (metabolize) certain substances that can then become poisonous and damage tissue in the central nervous system. With phenylketonuria (PKU), one such inherited metabolic disorder, the baby is not able to process phenylalanine, a substance found in many foods, including milk ingested by infants. The inability to process phenylalanine results in an accumulation of poisonous substances in the body. If it goes untreated or is not treated promptly (mostly through dietary restrictions), PKU causes varying degrees of intellectual disabilities, ranging from moderate to severe deficits. If treatment is promptly instituted, however, damage may be largely prevented or at least reduced. For this reason, most states now require mandatory screening for all infants to treat the condition as early as possible and prevent lifelong problems.Multifactorial disorders occur when one or several genes on different chromosomes in combination with environmental factors result in abnormal inheritance patterns. Many researchers are investigating the complex effects of specific genetic combinations and environmental factors. One example of a multifactorial disability is spina bifida, which is discussed in Chapter 14.9-4b problems during pregnancyPrenatal environmental factors such as exposure to drugs and alcohol, toxins, maternal illnesses, and malnutrition can result in intellectual disability. Intoxication is cerebral damage that results from an excessive level of some toxic agent in the mother–fetus system. Excessive maternal use of alcohol or drugs or exposure to certain environ-mental hazards, such as X-rays or insecticides, can damage the child. Damage to the fetus from maternal alcohol consumption is characterized by facial abnormalities, heart problems, low birth weight, small brain size, and intellectual disabilities. The terms fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE) (a lesser number of the same symptoms associated with FAS) refer to a group of physical and mental birth de-fects resulting from a woman’s drinking alcohol during pregnancy. FAS is recognized as a leading preventable cause of intellectual disabilities. The National Organization on Fetal Alcohol Syndrome (2015) estimated that one in every 100 live births involves FAS and that more than 40,000 babies with alcohol-related problems are born in the United States each year. Similarly, pregnant women who smoke are at greater risk of having a premature baby with complicating developmental problems such as intellectual disabilities (Centers for Disease Control and Prevention, 2015). The use of drugs during pregnancy has varying effects on an infant, depending on frequency of use and drug type. Drugs known to produce serious fetal damage include LSD, heroin, morphine, and cocaine.Maternal substance abuse is also as-sociated with gestation disorders involv-ing prematurity and low birth weight. Prematurity refers to infants delivered before 37 weeks from the first day of the last menstrual period. Low birth weight characterizes babies that weigh 2,500 grams (5½ pounds) or less at birth. Prematurity and low birth weight significantly increase the risk of serious problems at birth, including intellectual disabilities.
REFERENCE
Required Textbook: Hardman, M. L., Egan, M. W., & Drew, C. J. (2014). Human exceptionality: School, community, and family. (12th ed.) Cengage Learning
