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Learning Outcome 8.1 Outline the development of the field of intellectual disability, define current terminology related to this disability, and explain the prevalence and causes of it.

Contemporary perspectives on intellectual disability are a response to past views and practices. By understanding how this field developed and was shaped by societal trends, you can better appreciate the significance of today’s changing vocabulary and rising expectations for students with this disability.

Focused study of and interest in individuals with intellectual disability began in the early 19th century—earlier than the study of people with most other disabilities (Ferguson, 2013; Goodey, 2016). As the timeline in Figure 8.1 illustrates, the field evolved for the next 100 years, with an optimistic emphasis on care and treatment and a belief that many individuals would be “cured.”

The timeline depicts, early 19th century: focused study of people with intellectual disabilities; mid-19th century: care of individuals with intellectual disabilities in homes, communities, and supportive group settings; early 20th century: focus on children and adults with disabilities shifts from education to custodial care in either institutions or segregated special classes; 1950s: researchers question the custodial treatment and low expectations for students with intellectual disabilities; 1961: term mental retardation accepted for use, replacing earlier, more derogatory terms such as idiot, feebleminded, and moron.

The timeline depicts, 1972: Pennsylvania Association of Retarded Children v. Commonwealth of Pennsylvania establishes that children with intellectual disabilities are entitled to a free, appropriate public education; 1973: definition of mental retardation changed from the cut-off being a measured IQ one standard below the mean (i.e., 85) to two standard deviations below the mean (i.e., 70); 1990s: emphasis on education expands from vocational and life skills to include academics and self-determination; 1992: American Association on Mental Retardation (AAMR) redefines this disability to emphasize the importance of context in determining whether an intellectual disability exists; 2002: American Association on Mental Retardation (AAMR) replaces the term mental retardation with the term intellectual disability; 2010: President Obama signs Rosa’s law that changes the term mental retardation in all federal applications to intellectual disability.

The turmoil in American society at the beginning of the 20th century that you read about in Chapter 1 led to a radical shift in thinking about individuals with intellectual disability. Optimism was replaced by pessimism. Prominent physicians and psychologists theorized that intellectual disability—called mental deficiency at that time—was inherited, that it was accompanied by criminal tendencies, and that allowing people with this disability to have children would undermine the strength of American society (Kanner, 1964). As a result, professionals gradually abandoned efforts to educate these children and adults, and they became satisfied with providing custodial care for them, either in institutions or segregated special classes (Trent, 2017; Winzer, 2009). Most experts agree that the early 20th century was the lowest point in the modern history of education for individuals with intellectual disability (Smith et al., 2013).

By the middle of the 20th century, beliefs were beginning to change (Grossberg, 2011; Schalock & Wehmeyer), and for the next two decades, the efforts of researchers, social reformers, and parents guided the field toward major reform. The result of their diligence was the litigation that eventually formed the basis for Public Law (P.L.) 94–142, the federal special education law now called IDEA (the Individuals with Disabilities Education Act).

Until the latter part of the 20th century, many children with intellectual disability were sent to live in institutions. Today, they usually attend school with typical peers, participate in school programs and services, and learn in a much more rigorous curriculum.

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As is true for some other students with disabilities, the language that describes students with intellectual disability requires clarification. Although the term mental retardation was widely used from the middle of the 20th century until recently to describe the individuals who are the focus of this chapter, many parents and advocates urged a change in terminology because of the offensive connotations associated with MR (Lyle & Simplican, 2015; Patel et al., 2014). This advocacy effort was successful: On October 5, 2010, President Barrack Obama signed into law “Rosa’s Law,” a bill that immediately changed the term mental retardation in all federal applications to intellectual disability (Rosa’s Law, 2009; U.S. Department of Education, 2017). Soon after, a comparable decision was made by the U.S. Supreme Court ( Hall v. Florida, 2014). Another term you will see in this chapter and in your career as a professional educator is developmental disabilities, a broad term usually used in reference to chronic and significant impairments such as cerebral palsy and autism that result in intellectual disability (National Center on Birth Defects and Developmental Disabilities, 2020b). As you learned in Chapter 1, this term also is sometimes used instead of a more specific disability label for children ages 3 to 9 receiving special education services.

You may find that your state uses yet other terms to refer to students with intellectual disability. For example, you may hear the term cognitive impairment or cognitive disability, or mental impairment or mental disability. Over the next several years, it is likely that such terms will gradually be replaced with the contemporary terminology. These changes will reflect a positive step in transforming understanding of these students and their too-often underestimated potential.

The definition generally used by educators is the one in IDEA. This definition for intellectual disability is based on one developed in 1982 by the American Association on Mental Retardation (AAMR) (renamed in 2007 as the American Association on Intellectual and Developmental Disabilities, or AAIDD). It states that an intellectual disability is

significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance. (IDEA 20 U.S.C. § 1401 [2004], 20 C.F.R. § 300.8[c][6])

This definition illustrates the important fact that the intellectual disability designation is assigned only when a student demonstrates both limited cognitive ability and significant problems with adaptive behavior—that is, the day-to-day skills that are necessary for independence (e.g., self-care, the use of money). The third part of the definition clarifies that the identification of intellectual disability is made only if the condition is present by the time the student is 18 years old—the generally accepted definition of the phrase “during the developmental period.” If an adult is injured or experiences an illness that results in a significant reduction in intellectual ability, a term such as cognitive impairment might be used, but the term intellectual disability usually is not applied.

In 1992, the AAMR revised its definition on which federal special education law was based. It reaffirmed the use of this new definition in 2002 and updated it yet again in 2010, even though the group has not yet been successful in changing the IDEA definition. This newer definition is similar to the original one, except that it clarifies the domains of adaptive skills, noting that they encompass (a) conceptual understandings related to literacy, numeracy and reasoning; (b) social proficiency such as interacting appropriately with others and obeying laws; and (c) practical competencies related to self-care and functioning independently (Schalock et al., 2010).

The current AAIDD definition is also a refinement because it is expanded through a discussion of key assumptions that must be analyzed in judging whether an individual has intellectual disability. One assumption relates to considering the context in which the person lives (Schalock, 2017; Schalock et al., 2018; Wehmeyer et al., 2020). For example, some students are eligible for special education as having intellectual disability only while they are in the academic environment of public schools. When they leave school and find employment that does not rely heavily on specific academic skills, the label may no longer apply. Another assumption specifically calls attention to cultural and linguistic diversity, acknowledging that various cultures may have different responses to and expectations for individuals with this disability. Assumptions are also outlined related to individuals’ strengths, even in the presence of limitation, the importance of focusing on supports that help individuals succeed, and the goal of improving the overall life functioning of individuals with this disability (Schalock et al., 2010). As you compare the older and newer definitions of intellectual disability, would you support the adoption of the latter in IDEA? Why or why not?

As you learned in Chapters 6 and 7, some diagnoses are medical in nature and are guided by the definitions in the Diagnostic and Statistical Manual–5th edition ( DSM-5) (American Psychiatric Association, 2013). For intellectual disability, this manual follows very closely the AAIDD definition; that is, it encompasses conceptual, social, and practical dimensions. Perhaps most significantly, DSM-5stresses the need for comprehensive assessment of this disorder; it specifies that a person’s overall functioning level should be carefully evaluated rather than relying exclusively on the results of intelligence quotient (IQ) testing.

During the 2019–2020 school year, 6.5% of all students with disabilities, or 416,664 students, received special education because they were identified as having an intellectual disability (Office of Special Education Programs, 2022). An additional 2.8%, or 179,486 students, in this age group were served with the general label developmentally delayed, the alternative federal disability category for students ages 3 through 9 that includes some students with intellectual disability. The percentage of all students with this disability has remained steady in recent years after a sharp decline from the late 1970s through the 1980s, most likely attributable to more accurate identification of students as having other disabilities (such as learning disabilities and autism) (Van Naarden Braun et al., 2015).

For several reasons, the IDEA prevalence estimate for intellectual disability is not considered comprehensive. First, not all students who are labeled as having a developmental delay have intellectual disability; it is not clear what proportion of these students have this impairment. In addition, the decision to identify a student as having intellectual disability involves professional judgment, and the team determining eligibility may decide to avoid using that disability label. Further, when agencies outside education estimate prevalence, intellectual disability may be combined with other disability categories (e.g., learning disabilities), thus obscuring accurate data (Anderson et al., 2019). The prevalence estimate from the Centers for Disease Control and Prevention illustrates the challenge of determining prevalence. It estimates that 1.14% of children ages 3–17 have an intellectual disability (Zablotsky et al., 2019), higher than the child count data from IDEA.

Prevalence data are important because they influence policy makers who provide funding for services and set guidelines for support. For school professionals, the prevalence data suggest that most professionals are likely to teach students with intellectual disability, and some evidence suggests this disability group is underidentified (e.g., Luckasson & Schalock, 2013; Schalock & Luckasson, 2013).

Little research has explored the prevalence of intellectual disability in boys versus girls or based on age. Generally, boys are thought to have intellectual disability at a slightly higher rate than girls (1.48:0.9) (Zablotsky et al., 2019). In addition, some specific syndromes that include intellectual disability (topics addressed later in this chapter) affect boys and girls at different rates (Koenig & Tsatsanis, 2005).

The aspect of prevalence and intellectual disability that has received the most attention among educators is the disproportionate representation of Black American students in this group (Fish, 2019; Zhang et al., 2014). As you learned in Chapter 3, the complex reasons for this situation include teacher expectations for student classroom behavior and academic performance, racial/ethnic bias, bias in assessments, and risk factors such as living in poverty. Presently, Black American students are approximately 2.2 times more likely than other students to be identified as having an intellectual disability, based on their overall representation in the population (Office of Special Education Programs, 2022). These data indicate that despite widespread attention to disproportionate representation, the issue still exists.

For most students with intellectual disability, especially those with mild impairments, the cause of the disability cannot be determined. Camila, the elementary student introduced at the beginning of this chapter, is in this group of students. For students with more significant intellectual disability, the causes usually are considered in terms of when they occurred: during the prenatal (before birth), perinatal (during or immediately after birth), or postnatal (after birth) period. The following examples illustrate these three time periods, the types of conditions that can lead to intellectual disability, and the extent to which scientific knowledge about this disability has progressed.

Intellectual disability sometimes is caused by factors at play before birth; these are referred to as prenatal causes, and the resulting conditions sometimes can be labeled as syndromes, that is, consistent clusters of characteristics. For example, they may be the result of chromosomal abnormalities such as Down syndrome, fragile X syndrome, Prader-Willi syndrome, and fetal alcohol spectrum disorders, each briefly described in the following sections.

Probably the most well-known of all the genetic disorders that can result in intellectual disability is Down syndrome (DS). One in approximately every 700 children is born with DS (National Center on Birth Defects and Developmental Disabilities, 2020c; National Down Syndrome Society, 2021b), and this syndrome occurs in both sexes and across racial/ethnic groups. The cause of DS is clear: Individuals typically have 46 chromosomes—23 contributed each by one’s mother and father. In nearly all individuals with Down syndrome, faulty cell division results in an extra chromosome being present in the 21st chromosome pair, and so the syndrome is sometimes called trisomy 21. It is this extra genetic material that causes children with this syndrome to have easily identified characteristics.

The most common form of inherited intellectual disability is fragile X syndrome, sometimes called Martin-Bell syndrome. Both men and women may carry the disorder, but only mothers transmit the disorder to their children. This syndrome develops when a mutation occurs in one of the genes in the X chromosome. The mutation occurs in a gene segment that is repeated in most people about 30 times. In those with this disorder, the segment is repeated from 55 to 200 times, causing the gene to turn off—that is, to stop producing a chemical present in the cells of people who do not have this disorder (U.S. National Library of Medicine, 2020). Full fragile X syndrome (gene repeated more than 200 times) is seen in approximately 1 in every 7,000 males and 1 in every 11,000 females (National Center on Birth Defects and Developmental Disabilities, 2020a), although far more individuals have what is called premutation—that is, gene repetition between 55 and 200 times.

When the full abnormal gene repetition occurs, it causes a deficiency of a protein that develops synapses between nerve cells which, in turn, affects nervous system functions and often leads to an intellectual disability. Males with this disorder usually have a significant intellectual disability (Roberts et al., 2005; Schwarte, 2008); females usually have much milder impairments. When premutation occurs, approximately one-third of males and 6% of females have intellectual disability, but these individuals may have other co-occurring conditions such as anxiety and attention problems (National Center on Birth Defects and Developmental Disabilities, 2020a).

Individuals with fragile X syndrome tend to have long faces, large ears, and poor muscle tone, but generally they are healthy. They often display characteristics similar to those in students with attention-deficit/hyperactivity disorder (ADHD), including distractibility, and they may share some characteristics with students who have autism, including hypersensitivity to certain stimuli (e.g., the sound of a doorbell, the feel of certain types of clothing) and a tendency to say or do the same thing over and over again (Berry-Kravis et al., 2010; Langthorne & McGill, 2012; Vekeman et al., 2015). Students with this syndrome also are likely to have difficulty communicating with others, become anxious when routines are changed, have emotional problems such as depression, and display poor social skills (e.g., Moskowitz et al., 2020; Schladant & Dowling, 2020).

Yet another disorder resulting from prenatal factors is Prader-Willi syndrome, which is much less common than Down syndrome and fragile X syndrome, occurring in about 1 of every 12,000–15,000 babies (Bohonowych et al., 2019; Prader-Willi Syndrome Association, 2021). It is caused by any of several types of mutation on chromosome 15 (e.g., the father’s chromosome is missing in the child; the mother contributes both chromosome 15s instead of one coming from the father). It occurs equally in boys and girls and occurs in individuals from any race or ethnicity.

Children who have Prader-Willi syndrome may have mild or moderate intellectual disability, but some have abilities in the low-average to average range (Prader-Willi Syndrome Association, 2021). Research on the specific cognitive characteristics of these individuals is still evolving (e.g., Famelart et al., 2020; Manning et al., 2016).

These children typically are happy as toddlers, and their behavior is similar to that of their peers. As they reach school age, though, they begin to have significant behavior problems, including stubbornness, problems switching from one activity to another, and resistance to changes in routines (Chevalère et al., 2015). However, the primary characteristic of this disorder is an insatiable appetite and compulsive eating, and this symptom generally begins between the ages of 2 and 4 and can become life-threatening. Students with this disorder may steal food or eat discarded food, and educators working with these students must ensure that all food is kept locked away. Obesity occurs in 95% of these students if food intake is not carefully controlled. Families who have children with Prader-Willi syndrome often are under a great deal of stress because of the need to provide constant control and extensive behavior interventions (Mackay et al., 2019; Manning et al., 2016).

The technical information in the preceding paragraphs may leave you thinking that most prenatally occurring intellectual disability is caused by chromosomal problems. This is not the case. There are many other prenatal causes of intellectual disability, including those described in the following sections.

Many children have intellectual disability because of the harmful impact of maternal alcohol consumption. In fact, FASD is considered the leading cause of intellectual disability and the only one that clearly is preventable, with some experts estimating that as many as two-thirds of all students receiving special education for these disabilities may be affected by it. One study estimated that 1.1% to 5% of all first grade students are affected by FASD (Denny et al., 2020).

The term fetal alcohol syndrome (FAS), first used in 1973, describes the most severe form of this disorder. The prevalence of FAS generally is believed to be significantly underreported and ranges from 0.5 to 2.0 cases per 1,000 babies born, with some regional variation in rate (May & Gossage, 2016). Less severe forms of FASD include alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD), and the prevalence of these disorders is approximately 2 to 5 cases per 100 births (Centers for Disease Control and Prevention, 2016; May et al., 2014). Keep in mind, though, that not every student with FASD has an intellectual disability.

Students with FAS usually are somewhat small and slower in their development than other children. Their eyes may be small, with drooping eyelids, the groove between the upper lip and nose may be absent, and the lower part of the face may seem flat. These students often have mild or moderate intellectual disability, and they also are likely to have a very short attention span as well as hyperactivity, learning disabilities, and poor coordination. They may also have characteristics associated with autism such as difficulty with social interactions (e.g., Stevens et al., 2013). Students with milder forms of FASD may not have physical symptoms, but they are likely to experience similar behavioral and attentional problems (e.g., May et al., 2020).

The four students in this video all have been affected by FASD. What are some ways family relationships and social skills of students are affected by FAS?

Phenylketonuria (PKU) is an inherited metabolic disorder that affects 1 out of every 10,000–15,000 babies (Genetics Home Reference, 2020). PKU occurs when the body is unable to produce an enzyme needed to process the amino acid phenylalanine, which is present in many high-protein foods, including meat and eggs. As a result, phenylalanine accumulates in the body, and it may cause an intellectual disability. Children inherit PKU only if both parents carry the defective gene that causes it, and it affects boys and girls equally. PKU is mentioned here because you have undoubtedly seen a warning about it: If you look at the small print on a can of diet soft drink, you will see a warning to “phenylketonurics” that the product contains phenylalanine, the chemical they cannot metabolize. All states now mandate that newborns be tested for PKU.

The treatment of PKU can begin even before a baby is born; when a mother known to carry this gene controls her dietary intake of phenylalanine, prenatal harmful effects can largely be avoided. Treatment for the child begins as soon as the disorder is detected, and it consists of a carefully planned diet low in foods containing phenylalanine (National Organization for Rare Diseases, 2019; Williams et al., 2008). For example, certain high-protein foods such as meat, fish, and poultry are not allowed. Although it was once believed that the special diet could be discontinued around age 6, lifelong control of diet is the current recommended practice (Lowe et al, 2020). When the diet is followed and chemical levels in the blood are carefully monitored, students with this disorder experience no significant effects on intellectual ability or learning.

Toxoplasmosis is an infection caused by a parasite, and more than 40 million people in the United States carry it (Centers for Disease Control and Prevention, 2018), including 10% to 15% of women of childbearing age (15 to 45 years old). It usually is harmless because the body’s immune system prevents it from causing illness. However, an expectant mother who becomes infected with the parasite for the first time can pass it on to her unborn child. The baby may seem fine at birth, but an intellectual disability or blindness may develop later in life. It is important to know that this parasite is spread through a cat’s fecal matter. Thus, expectant mothers are cautioned to have someone else clean the litter box.

Teratogens is the term for agents that pregnant women may encounter that negatively affect their unborn children. Alcohol use is an example as is toxoplasmosis. Others include smoking, some prescription medications, exposure to lead, and street drugs. There are many others.

In some instances, a problem that occurs during or immediately after the birth of a child leads to an intellectual disability. For example, premature babies have a significant risk of having an intellectual disability (Behrman & Butler, 2007; Kelly & Li, 2019). Birth injury is another category of causes of intellectual disability during the perinatal period. For example, if a baby is deprived of oxygen while being born or if the infant is hurt by the incorrect use of forceps or procedures followed during birth, an intellectual disability may result.

Children who are born without disabilities sometimes develop an intellectual disability as a result of an accident or illness that occurs during childhood. Examples include encephalitis, lead poisoning, and brain injury, described below.

Inflammation of the brain, or encephalitis, can be caused by any viral infection. Vaccinations have reduced the chances of most children getting certain viral infections (e.g., measles, mumps, chicken pox), but this disease also can be carried by certain types of mosquitoes and animals that have rabies. In some cases, encephalitis results in intellectual disability.

You already have learned that young children exposed to lead are at higher risk for developing learning disabilities, emotional and behavior disorders, and ADHD. Lead poisoning can lead to intellectual disability as well. It is estimated that 500,000 children ages 1 through 5 have dangerously raised levels of lead in their blood (Hauptman et al., 2017). Even though lead-based paint was banned in 1978, it is the primary source of childhood lead exposure and is found in more than 4 million buildings in which young children live. Like fetal alcohol syndrome, lead poisoning is a completely preventable cause of intellectual disability. Eradication of lead poisoning in children is part of a set of federal priorities to improve the health of people in the United States (Centers for Disease Control and Prevention, 2020).

In a collaborative study examining health insurance claims during the coronavirus pandemic of 2020–2021, individuals with intellectual and developmental disabilities were found to be three times more likely than the general population to die from the disease (Rabin, 2020). Advocates warned against bias related to treating and vaccinating this vulnerable group, both during this health crisis and in other situations.

Although many children have accidents and experience no long-term negative effects, any event that causes injury to the brain can be a cause of intellectual disability. Examples include falls from bicycles or playground equipment, automobile accidents, near drowning, child abuse, and severe malnutrition. This topic is addressed further in Chapter 13.

Does it seem that the causes of intellectual disability are a little overwhelming? Remember that the preceding discussion includes only a few of all the causes and that advances in medical technology are providing additional information every year. These advances someday may help prevent some types of intellectual disability from ever occurring and may minimize the impact of those that cannot be prevented.

Learning Outcome 8.2 Describe characteristics of individuals with intellectual disability.

As you read about the causes of intellectual disability, you learned some of the specific characteristics associated with individuals who have well-known syndromes and disorders. In this section, the emphasis is on a more general picture of the cognitive, academic, social, behavioral, emotional, and physical/medical characteristics of this group of students.

A student is identified as having an intellectual disability only if his IQ score places him at approximately 2 standard deviations or more below the mean or average score of 100. And even though IDEA does not draw these distinctions, in traditional classification systems individuals are grouped based on the extent of their intellectual impairment:

What does all this mean? Perhaps you have seen a diagram like the one presented in Figure 8.2—a bell-shaped curve. It demonstrates how these concepts relate to one another. The average IQ score is considered 100. Most people—approximately 68% of them—have an IQ score that falls between 1 standard deviation (i.e., 15 points) below the mean and 1 standard deviation above the mean, or between 85 and 115. As you can see from the figure, the IQ scores for students with intellectual disability fall significantly below this range.

The graph shows IQ on the horizontal axis ranging from 25 to 175 in increments of 15. On the horizontal axis, it shows the percentage of the population. It shows, 0 to 25: profound; 25 to 40: severe; 40 to 55: moderate; 55 to 70: mild. The graph shows the percentage of the population to be 2 percent between 55 and 70; 13.5 percent between 70 and 85; 34 percent between 85 and 100; 34 percent between 100 and 115; 13.5 percent between 115 and 130; 2 percent between 130 and 145. A line drawn parallel to and below the horizontal axis shows the standard deviation above or below mean ranging from negative 5 to positive 5 in increments of 1. It shows standard deviation to be negative 5 at 25; negative 4 at 43; negative 2.5 at 62.5; negative 2 at 83; 0 at 100; 1.2 at 118, 2.5 at 137.5; 3.9 at 158; and 5 at 175.

Keep in mind that IQ scores are approximations that guide professionals in making decisions about students’ needs, but the scores should not by themselves dictate decisions regarding students. A student with an IQ slightly above 70 could be identified as having an intellectual disability if he were experiencing many problems in adaptive skills. Likewise, a student with a score slightly below 70 might not be identified if she seemed to be functioning well.

Although some variation of this classification system of mild, moderate, severe, and profound is used in most states, it has bothered professionals for many years because of its emphasis on limitations and its tendency to relate specific scores to highly stigmatizing labels. To address these and other significant shortcomings, the American Association on Intellectual and Developmental Disabilities (AAIDD) (Schalock et al., 2010) offers an alternative, multidimensional classification system that incorporates these major life elements:

· Intellectual ability—This dimension captures the traditional means of classification: scores on intelligence tests.

· Adaptive behavior—This dimension is the second element of traditional models and considers an individual’s ability to carry out typical, age-appropriate activities.

· Health—This dimension includes both physical well-being and mental health; it is not considered in the traditional classification system.

· Participation—This dimension encompasses the roles and interactions a person has across home, school, work, and community.

· Context—This dimension refers to the personal and environmental circumstances in which a person lives.

The goal of this model is to avoid a stigmatizing labeling system and instead to recognize that individuals with intellectual disability perform differently depending on each of the dimensions and so need different levels and types of supports at various points in time. Although not commonly used in schools, this system enables professionals to look in a constructive way at arranging services so that individuals with intellectual disability can reach their potential.

The cognitive characteristics of students with intellectual disability have a significant impact on several dimensions of their overall development and skill acquisition (Bergeron & Floyd, 2006), including memory, generalization, metacognition, motivation, language, and academics.

Some students’ scores on traditional intelligence tests may suggest the presence of an intellectual disability, but if they are able to carry out common daily tasks that label is likely inappropriate.

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In some respects, students with intellectual disability have cognitive functioning difficulties similar to those of other students about whom you have already learned. One example concerns working memory. Do you recall that students with ADHD have difficulty with working memory, or the ability to remember what needs to be done and how much time there is to do it? Students with intellectual disability also experience these problems. They are likely to forget what they are supposed to do, particularly if a task involves many steps. However, technology is helping to address this dilemma. The Technology Notes explains how professionals use technology tools to help these students learn and remember complex academic tasks.

Professionals are finding that technology can help students with intellectual disability succeed both in school tasks and skills needed to achieve independence in jobs and their communities (e.g., Ayres et al., 2013; Shepley et al., 2018; Spooner et al., 2019). Here are examples:

· Simó-Pinatella and Mumbardó-Adam (2018) applied research about the effectiveness of video prompting and video modelling to teach secondary students with intellectual disability to look up unfamiliar words in a standard dictionary. The process of finding a word was divided into 11 steps, and when students encountered an unfamiliar word in passages tailored to ensure that occurred, they were prompted using video through each step of looking up the word in a dictionary. Once all steps were mastered, the students could review them by watching the video modeling of the entire process. Students were successful in learning this skill, and their teachers noted its usefulness.

· Many students experience difficulty learning to understand fractions. Bouck et al. (2020) reported a study of three middle school students with mild intellectual disability that included one-to-one instruction, virtual manipulatives on an iPad, and carefully sequenced and delivered instruction using worksheets. They found that the students were successful in learning the targeted fraction skills (i.e., adding fractions with unlike denominators or finding equivalent fractions) and preferred solving problems with the virtual manipulatives over not having them.

· Cihak et al. (2015) taught adolescents with mild to moderate intellectual disability to use three functional digital literacy skills, including (a) sending and receiving e-mail; (b) accessing, organizing, and saving information with social bookmarking from websites about careers; and (c) using cloud storage in order to retrieve, change, and upload documents. All the students learned the skills and reported valuing them. Given that nearly all adults use computers for both personal and employment purposes, the authors stressed the significance of providing these students such access.

· Jimenez and Besaw (2020) explored the use of virtual manipulatives with two elementary students with moderate intellectual disability. Their intervention included highly structured instruction using a story-based curriculum as well as virtual graphic organizers and manipulatives. Both students increased their skills for early numeracy (e.g., set-making, patterning) over baseline and displayed increased engagement (e.g., using the manipulatives). The authors noted that virtual manipulatives are relevant for all students and may be an option for inclusive math practices.

· Smith et al. (2015) used video prompting to teach three high school students with moderate intellectual disability office tasks that would help them to obtain jobs: (a) collating and stapling sets of papers; (b) organizing a binder; and (c) preparing letters for mailing. After students were introduced to one of the tasks, if they could not complete a step needed (e.g., putting a stamp on the envelope), they were shown a brief video of the necessary step. All students were able to learn the three tasks and generalize most of the steps to working with similar materials.

The ability to learn a task or idea and then apply it in other situations is called generalization. When a student learns in language arts or English class to use adjectives to make their writing more interesting and then uses adjectives when writing an essay in a social studies class, generalization has occurred. Students with intellectual disability have difficulty with generalization of academic tasks, behavior expectations, and social interactions. For example, if a student who tends to speak loudly is being taught to keep his voice at an acceptable classroom level, the skill may need to be taught in general education classrooms, in the music room, and in the cafeteria.

Another challenge for many students with intellectual disability is metacognition, or the ability to “think about thinking,” which was introduced in Chapter 5 in the discussion of students with learning disabilities. Students with intellectual disability are most successful when they are not expected to make spontaneous judgments about what to do next; otherwise, they may struggle. For example, Anthony, the student you met at the beginning of the chapter, has learned how to move from class to class in his middle school. One day, however, his usual route was disrupted: A corridor was closed because of a broken water pipe. Although other students easily diverted to an alternative hallway, Anthony became confused and required assistance to find his way to his next class.

Some students with intellectual disability share another characteristic with students with learning disabilities. They experience problems with motivation and learned helplessness—that is, the tendency to give up easily. For students with intellectual disability, however, learned helplessness may not be a result of frustration with the task at hand. It sometimes develops because professionals and classmates, in attempts to be helpful, are too eager to offer assistance. Some students soon learn that if they simply wait, someone will help out. Professionals are working to teach students with intellectual disability skills such as self-management so that they learn to begin and complete school tasks (e.g., Douglas et al., 2015; Kuntz & Carter, 2019; Shogren et al., 2019).

As you might expect, many students with intellectual disability have delays in the development of language. For example, it may take longer for them to learn concepts such as up/down and over/under. These students also may struggle with words that are abstract in meaning and benefit when professionals can make those words more concrete. Here is an example: A middle school student with an intellectual disability was in a social studies class learning about democracy, a very abstract concept. By using discussions and examples, the student was able to learn what democracy means. When other students wrote an essay on the subject and then read it to the class, she compiled pictures that illustrated democracy and described them to her classmates. For example, she held up a picture of a protest rally and explained that in a democracy people can say things that other people do not like and that the people saying the things cannot be put in jail for saying them. No one doubted that she grasped the essential meaning of democracy.

Students with intellectual disability usually have to work harder and practice longer than other students in order to learn academic skills (Garrels & Palmer 2020; Rodgers & Datchuk, 2020). They typically process information at a slower speed than other students. Because of these challenges, sometimes in the past assumptions were made about the so-called ceilings that these students would reach in learning. Now, however, professionals are balancing the realistic understanding that learning is difficult for these students with the conviction that they may learn more than anyone ever thought they could—if they are given the opportunity. Studies have demonstrated that inclusive education for these students results in higher reading, math, and other academic achievement outcomes as well as improved communication skills (e.g., Cole et al., 2019; Wehmeyer et al., 2020). Additionally, a review of 11 years of studies found that educating students with intellectual disability with typical peers was associated with a positive effect on postschool employment and postsecondary education (Taylor et al., 2020).

A person with an intellectual disability shares what it is like to have a disability. What can we learn from the experiences of people with disabilities and how could that influence the ways we teach them?

The social, behavioral, and emotional characteristics of students with intellectual disability can vary as much as those of students without disabilities. Stereotypes that assign “certain characteristics to particular groups of students generally are not accurate unless a specific behavior is associated with a particular disorder, such as those you read about earlier in the chapter.

Some students with intellectual disability have difficulties in social relationships (Schoop-Kasteler & Müller, 2020; Ziegler et al., 2020). They tend to be less accepted by their peers and more likely to be rejected or bullied by them. Several reasons can be offered for these difficulties. First, some students with intellectual disability have immature behaviors that make other students want to avoid them. Second, their ways of dealing with social situations may be inappropriate (Shepherd et al., 2014). For instance, students with an intellectual disability may walk up to a group of students engaged in conversation and elbow their way in and speak too loudly; those students then may form a negative perception of the students who interrupted. Finally, students with intellectual disability may have difficulty picking up subtle social cues, and so they may misinterpret other students’ actions.

Inclusive practices, such as those in place in Camila’s school, can foster positive social relationships for students with intellectual disability by providing natural opportunities for students to interact (e.g., de Boer et al., 2014; Ziegler et al., 2020). Structured extracurricular activities (e.g., Siperstein et al., 2019) also create situations for typical students to have positive interactions and form friendships with students with intellectual disability.

To be identified as having an intellectual disability, a student must display, in addition to limited intellectual ability, deficits in adaptive behavior. These are some of the skills that are included in the area of adaptive behavior:

· Communication—the ability to exchange thoughts, messages, or information with other people through speaking, sign language, electronic, or other means

· Self-care—the ability to tend to personal hygiene, dressing, eating, moving from place to place, and other related tasks (also referred to as activities of daily living, or ADLs)

· Social skills—the ability to interact appropriately with others

· Home living—the ability to manage the day-to-day tasks of living in an apartment or house

· Leisure—the ability to use free time productively

· Health and safety—the ability to take precautions and act in ways that do not endanger oneself or others

· Self-direction—the ability to make and implement decisions

· Functional academics—the reading, writing, math, and other skills needed for independence

· Community use—the ability to identify and access services and activities in the neighborhood or area

· Work—the ability to obtain and keep employment

In very young children, adaptive behavior may include learning to crawl and then walk and learning to speak. In elementary school, adaptive behavior includes taking turns, following directions, and moving safely around the school and its grounds. For middle and high school students, adaptive behavior includes going to the mall, dining out with friends, changing classes at school, and preparing for employment. Students with mild intellectual disability may experience delays in a few areas of adaptive behavior. Students with more significant disability are likely to have difficulties in many of these domains.

Some types of intellectual disability are related to specific behaviors. Prader-Willi syndrome, introduced earlier in this chapter and characterized by compulsive eating, is one example. However, many students with intellectual disability do not display extraordinary behaviors. Rather, they need rewards and consequences much like those needed by other students, perhaps with a greater emphasis on the use of tangible rewards (e.g., stickers, small prizes) used in a very systematic way. A few students may have self-injurious behaviors such as pulling their hair out or picking at their skin. When such behaviors are present, the services of a behavior specialist will likely be needed to design interventions to reduce or eliminate the behaviors.

A relatively new topic being explored in relation to school-age students with intellectual disability is these students’ mental health (Kok et al., 2016; Salm, 2017). Researchers have found that students with intellectual disability generally experience more depression than other students, and these feelings may persist into adulthood (Whitney et al., 2019). Clearly, valuing individuals with intellectual disability includes understanding that they experience the same emotions as others and that they have mental health needs. The Professional Edge includes ideas on how professionals can foster friendships for these students.

Teachers and other professionals play a pivotal role in fostering friendships between students with intellectual disability and their classmates (Biggs & Snodgrass, 2020; Rossetti et al., 2018). Using strategies such as these is beneficial for all students:

· Peer tutoring (addressed elsewhere in this chapter) and cooperative learning activities often promote friendship. Use the many resources available to teach students how to work together, and change groupings about once per month to ensure that all students have the chance to interact with one another.

· Deliberately create a classroom and school culture (no matter the setting) that values diversity and demands respect for each person. Posters and slogans contribute to this culture, but students should be directly taught to value each person as a unique individual.

· Seat students who may be isolated toward the front, and seat peers who tend to be supportive nearby.

· Make sure that you demonstrate respect as you interact with each student, genuinely welcoming all students, avoiding criticizing any student, and following all district guidelines and ethical practices concerning confidentiality.

· Use literature related to friendship as a teaching tool.

· Teach students the social skills they need to foster friendship (e.g., making eye contact, keeping an appropriate social distance, beginning a conversation, taking turns speaking, sharing, demonstrating interest by asking questions).

· Arrange small-group interactions with you so that you can model social skills, provide practice for students, and facilitate students’ interactions.

· Focus on the positive, providing rewards to students for respectful interactions with each other. However, you should also directly address instances of disrespectful interactions, probably enlisting parents to address the problem.

Most students with mild intellectual disability do not have any extraordinary medical conditions. However, some researchers have found them to be more likely than other students to be obese and not physically fit (Foster et al., 2021; Grondhuis & Aman, 2014).

As a student’s cognitive impairments become more pronounced, the likelihood of having serious physical problems and medical conditions needing intervention increases. Examples were provided earlier in the descriptions of specific causes of intellectual disability: For example, children with Down syndrome may have vision or hearing loss or heart problems requiring surgery. For educators, knowing about students’ health and medical needs is important for several reasons. First, if a student’s medical condition is fragile or changing, educators need to know whether an emergency might occur and how to respond. Second, if a student should be wearing glasses or using a hearing aid or another medical device, educators need to be prepared to monitor this. Finally, some students may miss significant amounts of school because of surgery or illness; in these cases, professionals are responsible for working with parents to minimize the impact on student learning.

Learning Outcome 8.3 Explain how intellectual disability is identified.

For students with intellectual disability to receive special education services, they must go through the formal process of identification. For some students, this will have occurred when they were very young, even when they were infants, using assessment methods designed just for that age group. Other students are identified when they enter kindergarten and cannot manage the academic, social, and other expectations of the school setting, and yet others are identified sometime during the elementary school years.

For students who may have intellectual disability, assessment focuses on intellectual level and adaptive skills, as stressed in the definitions presented earlier. However, medical and other information also is assessed as appropriate.

You already have learned that one common test used to assess intellectual functioning in students being considered for special education services is the Wechsler Intelligence Scale for Children(WISC–V) (Wechsler, 2014). Another test sometimes used is the Stanford–Binet Intelligence Scales (5th ed.) (Roid, 2003). These tests tend to measure a student’s overall abilities and predict school achievement. They are individually administered only by professionals who have been specially trained to do so.

You should keep in mind that no single test can measure all aspects of intelligence. Moreover, intelligence tests tend to ignore what some people consider key components of intelligence, such as creativity and humor. Most professionals also acknowledge that no single, universally accepted definition of intelligence exists. And so, although intelligence tests and the scores they produce are integral to the procedures of special education, they should be treated as valuable information, not as a prescription of a student’s abilities and limitations.

School psychologists are very influential in decision-making related to students’ eligibility for special education. In three studies using carefully constructed cases, Sullivan et al. (2019) found that these professionals are not biased based on student race but that too often they ignored eligibility criteria, inappropriately identifying students as having a disability (e.g., identifying a student as having an intellectual disability even though academic performance and adaptive behavior did not support that label).

The assessment of adaptive behavior is completed through interviews or surveys with parents, teachers, and others and with direct observation of the student. The goal is to obtain an accurate description of how well the student is functioning across school, home, and community settings.

One assessment instrument used for determining adaptive functioning is the AAIDD Diagnostic Adaptive Behavior Scale(DABS) (Tassé et al., 2017). This instrument, developed for children and youth ages 4 to 21, is designed to assess a wide range of adaptive skills. Using a semistructured interview format, a professional who has been trained to administer it asks a person who knows the target student well the questions it contains (Tassé et al., 2016). The scale measures conceptual skills such as the ability to read essential information and to understand numbers and time. It also assesses social skills such as the ability to follow directions and rules and an individual’s level of gullibility, as well as practical skills such as self-care and ability to access public transportation and appropriately use a phone.

Another measure of adaptive behavior is the Vineland Adaptive Behavior Scales (3rd ed.) (Sparrow et al., 2016). This instrument is based on interviewing, and it must be administered by a psychologist, social worker, or other appropriately trained professional. Other forms can be completed by parents/caregivers or teachers. The scales address communication, daily living, socialization, and motor skills across the student’s life span, and they include an assessment of motor skills for children younger than 6 years old and an optional behavior assessment for children older than 5. On these and other adaptive behavior instruments, a student’s current level of functioning is compared to that of typical children. The score provides an estimate of whether the student is functioning at the expected level, above the expected level, or below it.

For students with medical considerations, school team members may seek input from appropriate medical professionals concerning medications being taken, health risks for or limitations needed on physical activities, chronic conditions that school professionals should be aware of, and anticipated medical procedures that may affect school attendance or performance. These factors may be found to be integral to students’ disability and services they may need at school.

The decision to identify a student as having an intellectual disability must be based on the assessment information that has been gathered. The essential questions that are asked include the following:

1. Does the student’s intelligence, as measured on a formal individual assessment, fall at least 2 standard deviations below the mean? That is, is the student’s measured IQ approximately 70 or below? The federal definition of intellectual disability refers to significantly subaverage intellectual functioning, and the IQ scores mentioned earlier represent the operational definition of that term. However, as noted earlier, no cutoff score is considered absolute, and students with scores slightly above 70 might still be considered in this disability category.

2. Does the student display deficits in adaptive behavior? For this decision, team members review data from the adaptive behavior scales used in the assessment as well as observational data and anecdotal information offered by teachers, parents, and others. In many ways, answering this question relies on making a judgment call. Although the scales provide scores that indicate a student’s functioning level in the adaptive domain, the team must consider the school and home context and the student’s overall success in each. If clear and persistent deficits are noted, the decision is straightforward. However, for some students whose skills are marginal, discussion might be needed about the scores obtained versus observed level of support needed. As with intelligence measures, a test score is considered a guideline.

3. Do the student’s characteristics adversely affect educational performance? Federal special education law is premised on the adverse effect of disability on student learning and behavior, and so the team must consider this question as well as the others.

Learning Outcome 8.4 Outline how learners with intellectual disability receive their education.

Students with intellectual disability access the same sets of services in the same settings as other students with disabilities. However, because of the nature of their disability and the value of both early intervention and transition from school to adult life activities, their education often includes some specialized options.

Young children who have clearly recognizable disorders that include an intellectual disability sometimes are identified as needing special services shortly after birth, and these babies may begin their education during the first few months of life. For these very young children, services usually are based in the home and have an emphasis on helping family members learn how best to teach their children (Office of Special Education Programs, 2020). Both parents and early childhood professionals view this type of service as highly valuable in fostering children’s development and learning and increasing parent confidence in working with their young children (Totsika et al., 2014). This type of early intervention usually includes an early interventionist who consults with the family, but it also can involve a physical therapist, speech-language pathologist, and other specialists. Services for these infants and toddlers may include medical and health professionals as well.

These young children move into preschool programs at age 3, where they may be joined by children who recently have been identified as having developmental delays or other disabilities. Preschool programs have been demonstrated to have strongly positive effects on the language skills, motor development, and preacademic skill development of children with intellectual disability (e.g., Guralnick, 2016). Both professionals and families strongly support such programs, and attention on them increasingly focuses on parent participation and inclusive education.

Students with intellectual disability in elementary, middle, and high school are entitled to receive their education in the least restrictive environment just like other students with disabilities. However, if you review the information included in Figure 8.3, you can see that only a relatively small proportion of students identified with this disability spend more than 80% of their time in general education classrooms. In fact, the most common setting for these students is a special education classroom for more than 60% of the day.

SOURCE: National Center for Education Statistics. (2020, February). Percentage distribution of students 6 to 21 years old served under Individuals with Disabilities Education Act (IDEA), Part B, by educational environment and type of disability: Selected years, fall 1989 through fall 2018 [Table 204.60]. U.S. Department of Education, Institute of Education Sciences. https://nces.ed.gov/programs/digest/d19/tables/dt19_204.60.asp

The diagram shows separate setting (GE less than 40 percent): 48 percent; resource (GE between 40 to 79 percent): 27.5 percent; general education (GE greater than 80 percent): 17.3 percent; separate school: 5. 4 percent; home hospital 0.5 percent; residential setting: 0.3 percent; parent placement in a private school: 0.3 percent; correctional facility: 0.1 percent.

A teacher challenges all of her students to draw a sum of 22 cents on small whiteboards. One student needs extra help remembering the value of certain coins, and the teacher steps in to deliver instruction. What were the considerations during planning for this lesson that likely occurred to make this individualized, embedded instruction possible?

When students with intellectual disability are in general education classrooms with their peers, the extent to which they participate in exactly the same activities or activities that have been adjusted depends on the student’s level of support needs. In one first-grade classroom, Jasmine—who has a moderate intellectual disability—was participating in a review of consonant blends. The chart being used contained nearly two dozen blends, but when it was Jasmine’s turn to pronounce a blend and include it in a word, she always was given the blend fr, which happened to be at the beginning of her family name, Franklin. No special accommodations were needed. Once she mastered that blend, her teacher introduced others, one at a time, gradually increasing her skills toward achievement of the grade level foundational reading standard.

Some students need alternative activities based on the general education curriculum. For example, the students in a sixth-grade social studies class were studying cultures, and they had reached the study of ancient Egypt. As part of the unit, students were given the assignment of creating a magazine that ancient Egyptians would have wanted to read. Some students applied their new knowledge to produce magazines that contained references to Egyptian recreation, politics, and religion. Chase, a student with a moderate intellectual disability, created a picture magazine that incorporated artifacts from ancient Egypt for which he would see references in the normal course of life, including pharaohs and pyramids. His assignment enabled him to approximate the same academic standard as his typical peers, but with adjustments made to take into account the amount of support he needs to learn.

Other students with intellectual disability are supported in general education settings through the use of paraprofessionals (Massafra et al., 2020; Stockall, 2014), but many students spend at least part of the day receiving specialized academic instruction in a special education setting. For example, in Ms. DeCuir’s classroom of middle school students who take an alternate assessment, the goal of the math program, which is aligned to the standards all students must reach but is adjusted to each student’s present skill level, is to apply math skills to day-to-day activities. For example, fractions, part of the general curriculum, are taught in the context of cooking. Other math skills are related to shopping For some students, the concept of a budget and saving money also is a priority as part of math. This is part of a life skills curriculum, a plan for students’ education that stresses skills they need throughout life. In several lessons, the middle school students review coins and paper currency using real coins and facsimiles of bills, and they practice at their own skill levels how to make change—an applied academic skill they are still developing but that others students likely have mastered. On Friday, Ms. DeCuir plans to take the students to the Dollar Store so that they can make small purchases and put their skills into action. The outing will conclude with a stop at a fast-food restaurant where students will practice ordering food items based on how much money they have. The outing is part of community-based instruction (CBI)—that is, experience in applying skills learned in the classroom within the larger context of the community in which the students live (e.g., Hopkins & Dymond, 2020). Notice how such activities also can build students’ adaptive functioning, which is likely to result in increased independence as they move toward adulthood.

High school students are more likely than younger students to be educated primarily in special education settings, although in some communities inclusion is emphasized (Taylor et al., 2020). Andrew, a student with a mild intellectual disability, exemplifies a blended approach to education. As a junior, he decided to take introductory Spanish. Although you might find his decision surprising, there is a reason. He lives in a community with many Spanish-speaking residents and wants to know about their language. No Spanish instruction was available in a special education class. With a strongly supportive Spanish teacher, Andrew learned basic Spanish. However, Andrew’s English and math classes, based on the state curriculum standards but tailored to his needs, were taught by special education teachers. In addition, two afternoons each week Andrew went to a local nursing home with his job coach, Ms. Hickman. There he learned how to change bed linens, check that supplies such as tissues and towels were available in each room, and assist residents with tasks such as eating. Ms. Hickman’s role was to analyze the skills that Andrew needed, help him learn them, and ensure that he could carry out his responsibilities independently. Andrew hopes to enroll in a nurse’s assistant program after leaving high school.

A few students with intellectual disability attend separate schools or live in residential facilities that include academic programs. Usually, these are students who have complex medical needs requiring the on-call availability of nursing or medical staff, or they are students who have very serious behavior problems in addition to intellectual disability. In some regions of the United States, separate schools for students with moderate intellectual disability that were built around the time the first federal special education law was passed are still in place. They are becoming less and less common, though, as access to the general education curriculum and emphasis on an academically and socially integrated education have become priorities.

Despite the fact that the parents of children with intellectual disability were leaders in the educational movement that greatly increased inclusive practices, the preceding discussion indicates that this goal has been only partially achieved. Why are so many students with intellectual disability still separated from typical peers for instruction?

When students with intellectual disability receive an appropriate and inclusive education, they live productive adult lives, with most holding jobs and participating in community activities.

BL/BSIP SA/Alamy Stock Photo

The answer to this question is complex. One factor affecting the education of these students is traditional thinking. Some educators still believe that the best instructional arrangement for these students, particularly as they move from elementary to middle and high school, is a special education classroom. High school special education teachers for students with mild to moderate intellectual disability sometimes ask, “Why would I support putting my students into classrooms where they don’t know what is being taught and can’t keep up with the pace or the complexity of the academic content? They need the simplified academics and practical skills that I give them in a special education setting; that instruction cannot be arranged in general education.” Their concern for their students is understandable, and their advocacy for their education is well-intentioned, especially given the current climate of accountability and the resulting pressure on secondary teachers to ensure that students are successful on high stakes assessments.

However, the belief that only special educators can give the students what they need and that the general curriculum is not accessible for these students is outdated and troublesome; alternative ways of thinking have become common. For example, a review of research from the mid-1990s to 2016 demonstrated that studies about curriculum for students with intellectual disability have evolved from an emphasis on functional curriculum (e.g., life skills) to the development of academic skills (Moljord, 2018). This demonstrates the trend in the field that the question is not whether these students should be educated with their peers but how to do so effectively. In addition, using alternative curricula with these students has been described as a barrier that undermines inclusive education (Hanreddy & Östlund, 2020). In an example of how understanding has changed, Clarke et al. (2016) reported teaching five students with intellectual disability how to use response cards as a way of increasing their participation in general education science and social studies classes, and the intervention improved student performance and increased their on-task behavior. Using another approach, Bowman and her colleagues (Bowman et al., 2020) prepared elementary general education teachers to work with students with intellectual disability in their classrooms to solve word problems with sums less than five. The 20-minute training for teachers resulted in the students learning the skill and being able to apply it with unfamiliar problems.

The teacher works with a student to review the properties of coins and helps him set his self-management timer. Why would having a timer help students with intellectual disability in the general education classroom?

As academic standards continue to rise at the same time that inclusive practices for students with intellectual disability are being emphasized, questions are being raised about an appropriate education for this group of students. Few professionals would argue about the necessity of a continuum of services and settings for students with intellectual disability, as mandated in IDEA, but how decisions are made regarding what these students learn, where they are educated, and how often and why those decisions are reviewed have not been adequately addressed. Further, no one would challenge the importance of coordinating all the various special education, related, and community services these students require to thrive academically, emotionally, behaviorally, and socially. Additional discussion of inclusive education for students with intellectual disability are reviewed in the section on issues later in this chapter.

As students with intellectual disability reach adolescence, emphasis usually shifts to helping them make a successful transition from school to adulthood. Some students will leave school at about age 18 with their peers. Others are entitled to receive services through age 21. For students with mild intellectual disability, transition may emphasize learning skills that foster independence, including planning and using a household budget; searching for, finding, and succeeding in employment; attending postsecondary programs such as vocational school, community college, or a university; using resource tools such as electronic planners, apps to facilitate daily living, and Internet sources; and developing hobbies and recreational skills. For students with more significant intellectual disability, the same types of preparation may be emphasized but on a somewhat more scaffolded basis. Instead of budgeting, for example, math activities may focus on making wise choices about using spending money. The vehicle through which this type of planning occurs is the transition plan that is required by federal special education law, and it is a collaborative effort on the part of parents, the student, and professionals (Prince et al., 2013; Talapatra et al., 2019). The importance of transition planning for these students, including postsecondary opportunities and self-determination, introduced in Chapter 5 concerning students with learning disabilities, is addressed in detail in the final section of this chapter as an important trend for the field.

Bouck (2014) studied outcomes for students with mild intellectual disability at two, four, six, and eight years after graduation. Her results were disappointing related to employment (fewer than half of those surveyed were employed) and independent living (fewer than one third lived on their own for the study’s time period). Students’ postschool success did not seem to improve over time, suggesting the need for professionals to consider carefully how to improve these outcomes.

Remember that some students with intellectual disability will never again be identified as such once they leave school. They will blend into their communities, succeed with varying amounts of assistance from family and friends, and lead happy and productive lives. Other students will need structured support throughout their lives. They may work in entry-level jobs in businesses (e.g., copy assistant in an office, assembly-line worker) or schools (e.g., housekeeping staff), or they may work in a specialized setting (e.g., a business that employs people with disabilities to assemble materials for other businesses). Many will live independently, but some will live with family or with other individuals with disabilities, with assistance provided. Most importantly, the plans these students and their families have for their futures should guide the types of transition services they receive (Kaehne & Beyer, 2014). How might you apply these ideas in thinking about transition for Ernest, the high school student you met at the beginning of this chapter?

Learning Outcome 8.5 Describe recommended educational practices for students with intellectual disability.

A number of instructional techniques that are effective for teaching students with intellectual disability already have been introduced in this chapter. Strategies such as planning for generalization and making abstract concepts more concrete are essential to these students’ education. Likewise, some students need general curriculum standards applied to daily living while others should fully access those standards. These options illustrate the diversity of recommended instructional practices for students with intellectual disabilty. Further, it is important to keep in mind that strategies that have been introduced in other chapters are also essential for these students’ education—for example, direct instruction and behavior interventions such as clear rules, schoolwide behavior plans, and the use of contracts.

The teacher challenges the class to create the sum of 76 cents using play coins at their stations and walks one student through the process. Notice which information the teacher presents to the entire class and which is individualized for one student. Why it is important to have group instruction and direct instruction when teaching students with an intellectual disability?

Here, the focus is on two additional strategies: task analysis and peer-mediated instruction. Both are important across elementary, middle, and high school settings and across special education and general education classrooms.

In earlier chapters, you explored the concepts of universal design for learning (UDL) and differentiation. These concepts also can be applied to teaching students with intellectual disability. For example, you have learned that these students experience difficulty with metacognition. To succeed, they often need to have their assignments and activities clearly outlined and presented to them step-by-step so that they do not have to make judgments about what to do next or whether other options should be considered. The instructional strategy for ensuring this type of very systematic learning—and one that enables you to make appropriate decisions about planning instruction—is called task analysis. Think about how complex most school tasks are. Working on the computer or other device involves turning it on; finding and loading the correct program, website, or app; launching that software; following directions to complete the work and then saving and possibly printing it; exiting the software; and shutting down the computer or device. You may complete such a task with ease, but for many students with intellectual disability, such a task is daunting. In task analysis, the professional’s responsibility is to break into small steps any task or activity—from following classroom rules to using musical instruments to completing a writing assignment—and then teach those steps to students. By guiding students such as Ernest, whom you met at the beginning of the chapter, to learn each small step of the process and then put the steps together, teachers can help these students master more and more complex tasks with the goal of approximating general education standards. The Instruction in Action feature outlines the steps for using task analysis and includes examples of its application.

Task analysis often is helpful in teaching academic, vocational, and social skills to students with intellectual disability. You teach to mastery each small step and then help the student to put the steps together, which is sometimes called chaining them.

· Chaining can be forward—you help the student to do the first step, then you do the rest; then you help the student to do the first two steps, and you do the rest; and so on.

· Chaining also can be backward—you complete all the steps except the last one, and the student does only that step; then you complete all the steps except the last two, and the student does those two steps; and so on.

Whether you choose forward or backward chaining to teach skills to students depends on the students’ abilities and the type of task. For example, teaching classroom routines might be best taught using forward chaining. Teaching students to put the proper heading on their papers might best be accomplished through backward chaining.

The following examples illustrate the use of task analysis for two skills, one for younger students and one for older students: tying shoes and getting ready for a foods class. Would you choose forward chaining or backward chaining for each?

1. Pinch the laces.

2. Pull the laces.

3. Hang the ends of the laces from the corresponding sides of the shoe.

4. Pick up the laces in the corresponding hands.

5. Lift the laces above the shoe.

6. Cross the right lace over the left one to form a tepee.

7. Bring the left lace toward you.

8. Pull the left lace through the tepee.

9. Pull the laces away from one another.

10. Bend the left lace to form a loop.

11. Pinch the loop with the left hand.

12. Bring the right lace over the fingers and around the loop.

13. Push the right lace through the hole.

14. Pull the loops away from one another.

1. Put on your hair net.

2. Gather your books and items together.

3. Take those materials to the shelves in the back of the room.

4. Place your materials in the assigned section.

5. Go to the closet and select an apron.

6. Put on the apron.

7. Go to your desk and wait quietly for the instructor to start class.

SOURCE: Courtesy of www.BehaviorAdvisor.com

Once task analysis has been completed, students with intellectual disability may need to practice the component steps for a task more than other students do. For academic work, a computer with drill-and-practice software (e.g., for math facts or for consonant sounds) will make the amount of practice available almost limitless. For activities such as following classroom routines or moving around the school, parents or family members, peers, paraprofessionals, or volunteers might be able to assist.

Another way of making learning accessible to all students is to use peer-mediated instruction, in which peers teach peers. Doing so can involve cooperative-learning strategies that bring together student groups of three, four, or even more students (Kuntz & Carter, 2019; Monahan et al., 2018). Another peer-mediated instructional approach is peer tutoring (Harris & Meltzer, 2015), an approach to instruction in which students are partnered, provided with instructional materials that they are to learn, and expected to help each other in accomplishing the learning goal.

A teacher passes out exit slips and asks the class to draw 68 cents. She asks Daniel to create a different sum: 8 cents. The teacher circles the classroom and returns to help Daniel complete the activity. How could peer-mediated instruction be an method to support a student with an intellectual disability? What are the benefits of it for both the peer and the supported student?

There are several types of peer tutoring. One approach pairs older students who are struggling to learn with younger students. Another approach partners high-achieving students with struggling learners in their classrooms. An alternative approach is called classwide peer tutoring (CWPT), and it assumes that peer tutoring should be reciprocal—that all participating students should have opportunities to be both the teacher and the learner (Maheady & Gard, 2010). Students with intellectual disability can successfully participate in these programs, which enhance their learning. Further, peer tutoring is carefully implemented; it can help all students learn to value their classmates, respect diversity, and enhance their social skills. You can learn the fundamentals of developing a peer-tutoring program in the Instruction in Action feature.

For students with intellectual disability, peer tutoring can be a means of facilitating inclusion, improving academic achievement, fostering positive relationships with classmates, and encouraging positive student behavior (e.g., Shelton et al., 2019; Van Norman, 2007). These are the steps involved in setting up a peer-tutoring program (Fulk & King, 2001):

1. Explain the purpose of peer tutoring to students, and give a rationale for using it. Stress the idea of increased opportunities for practice and on-task behavior.

2. Stress collaboration and cooperation rather than competition.

3. Select the content and instructional materials for tutoring sessions.

4. Train students in the roles of tutor and tutee. Students need to learn specific procedures for

· feedback for correct responses (for example, teach students to say, “That’s correct. Good answer!”),

· error correction (for example, teach students to say, “That’s not correct; the correct answer is. . . . I’ll ask the question again. . . .”),

· score keeping (for example, have students use tally marks on a scorecard for correct answers).

5. Model appropriate behaviors for tutor and tutee. Demonstrate acceptable ways to give and accept corrective feedback.

6. Provide sample scripts for students to practice roles. Divide the class into practice pairs and teams.

7. Let pairs practice roles of tutor and tutee as you circulate, providing feedback and reinforcement of appropriate tutor and tutee behavior.

8. Conduct a follow-up discussion with the students regarding tutor and tutee behavior. Answer any student questions.

9. Repeat Steps 7 and 8, with students switching roles.

Once students know both the tutor and tutee roles, you can assign partners that may be kept for several weeks. Generally, peer tutoring is most effective with information that has clear correct or incorrect answers, particularly for younger students, and so you should select materials carefully for tutoring.

SOURCE: Fulk, B. M., & King, K. (2001). Classwide peer tutoring at work. Teaching Exceptional Children, 34(2), 49–53. Copyright © 2001 by the Council for Exceptional Children. Reproduced with permission of Council for Exceptional Children via Copyright Clearance Center.

Learning Outcome 8.6 Explain the perspectives and concerns that parents and families of students with intellectual disability may have.

Some parents of students with intellectual disability—parents whose children have disorders that can be identified medically—may learn about their children’s likely needs even before they are born. Other parents—often those whose children have a mild intellectual disability that is not the result of a specific cause—may suspect that their children are not keeping up developmentally with other youngsters, but they may not hear the phrase intellectual disability until their children begin school or even several years into school. No matter when parents and family members learn about their children’s disability, the role of professionals is to foster collaboration by engaging parents as partners in planning for the children’s education.

Many authors have written about parents’ responses to having a child with an intellectual disability. Some authors claim that parents may experience any or all of the classic stages of grief: denial, blame, fear, guilt, mourning, withdrawal, rejection, and acceptance (e.g., Andreyko, 2016; Prout & Prout, 2000). Others dismiss this set of responses as too simplistic to accurately capture the tremendous diversity of parent reactions and the factors that may influence reactions (e.g., McIntyre, 2016). For example, the amount of support offered by grandparents can affect parents’ ability to respond to their children with intellectual disability (Yang et al., 2018). In cases in which grandparents can provide emotional support, assume some childcare responsibilities, and help in day-to-day activities such as getting to medical appointments, the family benefits greatly.

Most families of children with intellectual disability think of them in terms of their positive and not-so-positive traits and contributions, not in the context of the disability label applied at school that often has limited relevance at home and in the community.

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Two additional examples of factors that affect parents’ reactions to their children with intellectual disability are religious participation and culture (Blanks & Smith, 2009; Taub & Werner, 2016). Ault et al. (2013) surveyed parents about their religious participation and that of their children with disabilities. They found that these parents highly valued their faith and that both they and their children participated in congregational activities. The parents did report a need for even more support, although they appreciated a welcoming attitude among members of their faith community.

Cultural mores make the differences among families even clearer (e.g., Magaña & Vanegas, 2021). Although many Western cultures view disability as a chronic physical phenomenon that needs fixing, some other cultures view disability as a spiritual phenomenon that is time limited and worthy of acceptance (Ly, 2008). In families that hold the latter set of beliefs, discussions of adjustment may not even be appropriate. More important may be the issue of professionals’ acceptance and responsiveness to the family’s perspective (Harry & Ocasio-Stoutenburg, 2020). Ultimately, each family’s reaction to having a child with an intellectual disability is unique, affected by many factors. The Professional Edge poignantly illustrates this point.

EMILY PERL KINGSLEY is the mother of now-adult son, Jason, who has Down syndrome. She is an Emmy Award–winning writer for the children’s program Sesame Street as well as the author of more than 20 children’s books. Though written more than three decades ago, her essay about her experiences as the mother of a child with a moderate intellectual disability captures the feelings of many parents.

I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip—to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very, very significant loss.

But . . . if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.

SOURCE: Copyright © 1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

Although nearly all parents want their children with intellectual disability to have a normal life, the meaning of normal differs for families based on several factors (Cramm & Nieboer, 2012). One important consideration is the level of supports the child needs. Children with mild impairment may be similar enough to their siblings that parents adjust their expectations but do not have extraordinary concerns. However, parents may have many questions about their children with a moderate intellectual disability. Another factor affecting parents’ concerns is age: Parents of young and school-age children are likely to worry about developmental and medical issues as well as behavior problems and their own ability to provide for their children’s needs. Parents of adolescents express concern about those problems, too, but they also begin thinking about what their child will do and how their child will live after graduation (e.g., Blustein et al., 2016). As the parents of children with intellectual disability themselves face aging, they become concerned with the possibility of keeping an adult child at home, the need to arrange for someone to look after their child after they die, and the necessity of providing for the child financially (Yoong & Koritsas, 2012).

One other influence on parents’ concerns relates directly to the earlier discussion about acceptance: parent culture (e.g., Magaña & Vanegas, 2021; Peer & Hillman, 2014). Parents from Western cultures sometimes ask, “When will my child grow out of this?” or “When will my child be cured?” Parents from cultures that emphasize acceptance would never think to ask such questions. Similarly, the latter parents cannot conceive of their child’s siblings refusing to care for him or her after the parents die, but parents in Western cultures may, with good reason, spend considerable time negotiating such care (e.g., Elliot et al., 2014). In other words, culturally determined beliefs about the nature, cause, and appropriate treatment for disabilities strongly affect the types of concerns that parents express.

Responding to a survey, 211 parents of children with intellectual disability, across elementary, middle, and high school, reported wanting their children to learn to read in order to understand print materials and follow written directions. Identified barriers to learning to read included distractibility and difficulty understanding content (Wakeman et al., 2021).

When all the information about families of students with intellectual disability is presented in a single picture, it is one that suggests that your responsibility as a professional is to frame your interactions from the perspective of the family. Some of the parents you encounter will have been working with the special education system for years, and they will likely have far different needs than those parents who have just learned of their child’s disability. Some parents will seem unconcerned about their children’s long-term progress; others will fret about it even during the elementary school years. Your first priority should be to listen so that you learn about the parents’ points of view. Next, you should check to be sure that your understanding of the parents’ needs for their child is accurate. Finally, you should remember that whatever type of service you provide—whether general education, special education, or a related service—your goal is to base your work on the priorities of the students and families, even when they are not consistent with your own.

Learning Outcome 8.7 Identify trends and issues influencing the field of intellectual disability.

Advances in understanding the causes of intellectual disability and the characteristics of students with this disability have both raised issues and created opportunities. One issue concerns the expectations for students with intellectual disability in the rigorous and standards-based environment of today’s schools. An example of an opportunity is the development of college- and university-based postsecondary programs for students with intellectual disability.

As you learned in Chapters 1 and 2, public schools today are being shaped by the provisions of the federal legislation that emphasizes rigorous education standards and increased accountability for student learning. Higher expectations are being set for all students, and the consequences of this trend for students with mild or moderate intellectual disability are multi-faceted.

A teacher discusses formal elements of poetry, prompting students to analyze elements of poems such as structure and language and includes one student with an intellectual disabilty in the group. How have expectations for students with intellectual disability changed in over the past two decades?

One question related to expectations concerns the curriculum considered appropriate for students with intellectual disability (e.g., Wehmeyer et al., 2020). In the past, these students often followed a curriculum that was different from that of typical learners. It usually emphasized life skills and adaptive behavior without consideration of the general curriculum, and it most typically was offered in a special education classroom. Skills such as counting money and personal care (e.g., brushing teeth) were not simply occasional topics for elementary students with intellectual disability; they were of central concern even in high school. As students got older, cooking tasks and household chores (e.g., changing bed linens, doing laundry) were emphasized. Increasingly, however, most students with intellectual disability are expected to learn in the same curriculum as other students or a curriculum closely aligned with it, whether in a general education or a special education setting (e.g., Bouck & Satsangi, 2015; Taub et al., 2020).

Most see this change as strongly positive, enabling students to have true educational access and to learn as much of that curriculum as possible. Proponents of this approach argue that it is unethical for professionals to decide that students with intellectual disability should not have the same learning opportunities as other students. They note that although some variations in activities and assignments are likely be needed, these students are capable of learning far more than those supporting alternative curricula have assumed. Opponents argue that many topics in the general education curriculum simply are not important for students with intellectual disability, especially when viewed in the context of all the survival skills these students need to learn before adulthood (Ayres et al., 2011). These critics contend that students with intellectual disability, even mild cognitive impairments, too often attend general education classes where they understand little of the instruction, even when accommodations are provided. The content is too abstract; the pace is too fast.

A discussion of curriculum expectations can be related directly to the accountability for that curriculum as measured on high-stakes tests (Wei et al., 2011). As you learned, few students with disabilities can be exempt from such tests, and some students with mild intellectual disability are being expected to complete them.

Some professionals applaud this strong initiative to ensure that high standards are maintained for all students with disabilities. They point to student success stories and argue that over time, as an increasing number of students with intellectual disability access the general education curriculum from the beginning of their school careers, more and more students will learn more and more of that curriculum. Opponents to the current requirements for high-stakes testing tell stories as well. They describe tearful children being asked to take tests that are beyond their capabilities. They contend that few students with intellectual disability should participate in high-stakes testing, noting that the current assessment systems seem to emphasize “equal” rather than “equitable.” They contend that legislation demanding students’ participation does not make it correct. Critics further point out that in some communities, these students are blamed for causing schools’ failure to achieve achievement goals. Finally, some professionals support the participation of all students in assessment, but they strongly advocate for using tests that are appropriate for the students’ levels of learning.

As you read about the Elementary and Secondary Education Act (ESEA), reauthorized as the Every Student Succeeds Act in 2015 and the focus on accountability in your professional preparation courses, keep both of these perspectives in mind. Think about the possibilities of helping more students to master the core curriculum as well as the pitfalls of setting standards at too high a level. How can these two points of view be reconciled?

Two decades ago, Ernest—whom you met at the beginning of this chapter—probably would have left high school to enter a typical or supported work setting. He likely would have worked for low wages and lived in poverty, participated on a limited basis with others, and experienced low self-esteem. Instead, he is preparing to go to college and should face a bright future (Parker & Schillaci 2018; Plotner & Marshall, 2015).

One key piece of legislation supporting this movement is the Higher Education Opportunity Act (P.L. 110–315), the law that includes provisions for college student financial aid (e.g., Pell grants). When this law was reauthorized in 2008, for the first time it included specific language related to individuals with intellectual disability. For example, the law removed the barrier of having a traditional high school diploma as a condition of eligibility for aid (some students with intellectual disability earn occupational diplomas or certificates of completion rather than a typical diploma), and it made students with intellectual disability eligible for work-study programs. Approximately 275 programs in two- and four-year colleges and universities and technical schools now enroll students with intellectual disability (Field, 2019).

Postsecondary programs have many benefits. Thoma and her colleagues as well as other researchers report that students with intellectual disability acquire more academic, social, and functional skills than they learned in their high school transition programs (Papay & Grigal, 2019; Thoma et al., 2011). In addition, typical students who interact with these students report benefits from their experiences; they do not think the students with intellectual disability detract from the college academic or social setting. Nasr et al. (2015) reported comparable results. When they interviewed students with intellectual disability enrolled in an on-campus transition program, they found that, with assistance from program staff, the students formed friendships and anticipated these relationships would be lasting.