Chapter 8

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So in 2007 what was then called American Association for Mental Retardation (AAMR) changed its name to the American Association for Intellectual and Developmental Disabilities (AAIDD). The organization also asked the nation to abandon the term metal retardation, which had been used for 50 years

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In 2007, the name of AAIDD’s publications also was changed to reflect the now-preferred term, intellectual and developmental disabilities. Sadly the group also did so believing that this new term would follow the path of previous terms and also take on negative connotations.

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As Steve Eidelman, executive director of the Arc (now the University of Delaware), reminds us, simply changing a name does not change the systemic reasons for bias. “Changing the term (mental retardation) will make many people happy. That happiness will quickly fade when the new term is used as a pejorative.

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Historical Context:
In 1877, Richard Dugdale, a member of the New York Prison Association, made up a story about the Jukes family to illustrate that people with cognitive disabilities were a danger to society. Dugdale believed that it was a hereditary condition and that people with intellectual disabilities were the source of the crime, poverty, and other social ills plaguing the country and that time.

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Historical Context:
The logic worked this way: The Jukes (and families like them) were, because of high rates of reproduction, the source of poverty, immorality, crime, and more “feeblemindedness.” They were a menace to society, and good people should be protected from them. Members of such families therefore should be cast away and put into institutions.

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Historical Context:
Jim Lent and his colleagues at the Mimosa Cottage Project in Parsons, Kansas, demonstrated that children with intellectual disabilities could learn many complex task and skills used in daily life and on the job. Procedures developed at this research center have become the foundation of the most special education programs.

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Historical Context:
Television exposes, court actions, and eventually the rise of the advocacy movement subsequently led to widespread deinstitutionalization. But toward the beginning of the effort to improve living conditions for people with intellectual disabilities, it took investigative reporting to shock the American public into insisting that the care and treatment of people living at state residential schools and institutions be improved.

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Normalization: Making available ordinary patterns of life and conditions of everyday living.

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Intellectual Disabilities or Mental Retardation Defined:
While some are questioning the importance of the age criterion, the AAIDD definition specifies that the disability must occur before the individual’s 18th birthday.

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Intellectual Functioning:
Moderate intellectual disabilities: IQ range of 35 to 49
-Outcomes: Exhibits marked developmental delays during childhood, has some degree of independence in self-care, possesses adequate communication and academic skills, requires varying degrees of support to live and work in the community.

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Systems of Supports:
Figure 8.2 (page 272) is a diagram of the four levels of intensity for different types of supports that people often need. It shows areas where supports can be provided and how that support might be delivered. Remember, supports can be offered at any one of four levels of intensity:
-Intermittent
-Limited
-Extensive
-Pervasive

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Cognition:
One characteristic of intellectual disabilities is a reduced ability to acquire knowledge through incidental learning- that is, to acquire learning as an unplanned result of their ordinary daily experiences. For some, it seems that explicit instruction is required for almost every task to be learned.

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Needs for Supports:
Everyone has access to generic supports, which are such services as public transportation and states’ human services system.

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Down syndrome: A chromosomal disorder with identifiable physical characteristics resulting in delays in physical and intellectual development.

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Causes:
Many different systems for organizing the causes of disabilities can be applied. Sometimes they are divided into three groups, organized by time of onset- that is, by when the event or cause first occurred:
-Perinatal: causes that occur during the birth process.

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Genetic Causes:
In the most common type of Down syndrome, trisomy 21, the 21st set of chromosomes contains three chromosomes rather than the normal pair.

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Fetal Alcohol Syndrome (FAS): Congenital conditions caused by the mother’s drinking during pregnancy resulting in reduced intellectual functioning, behavior problems, and sometimes-physical differences.

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Prevention:
According to The Arc (2005), a parent organization, many causes of intellectual disabilities are prevented today that could not be some 30 years ago. For example, each year 9,000 cases of intellectual disabilities are prevented via the measles and Hib vaccines, 1,250 cases via newborn screening for PKU and congenital hypothyroidism, and 1,000 cases via the anti-Rh immune globulin. Even more cases are preventable. For example, in the case of child abuse, teachers now have a legal (and many believe a moral) responsibility to report suspected cases so that further damage to the child might be avoided.

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Assessment:
Here is something important to know about and consider. Although the concept of “mental age” is outdated and misleading, some professionals mistakenly still use the idea to explain what an individual’s intellectual functioning might mean. It should not be used for it misrepresents individuals’ abilities and potential.

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Identification
Measures of adaptive skill areas are used to determine whether the individual actually performs the everyday skills expected of an individual of that age in a typical environment.

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Transition:
Writing
-Receiving information: taking phone messages, writing directions to get to a restaurant, taking notes on how to do a job.

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Functional Curriculum: Teaching skills needed for daily living.

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Independent Living:
Historically, individuals with intellectual disabilities, even some whose IQ scores fall into the mild range, have found themselves confined to residential institutions. During the last half of the 20th century, the deinstitutionalization movement sought to close all institutions and bring all people with intellectual disabilities to community settings. Today, more people with cognitive disabilities are living in the community away from large institutions and outside family homes.

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Collaboration with Related Services Providers: Therapeutic Recreation Specialist
Those with greater presence and participation in the community have fewer feelings of loneliness and tend to have more friends and natural supports. Those individuals often are the ones who engage in recreational activities during their leisure time.

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