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Community living for adults with intellectual disabilities rarely translates to full community participation; and reports of loneliness, isolation, and lack of friendships are a recurring theme among individuals and in the literature (Bramston, Bruggerman, & Pretty, 2002; Chadsey & Beyer, 2001; Lunsky & Neely, 2002; Pottie & Sumarah, 2004). Likewise, meaningful and realistic opportunities for literacy and ongoing learning are virtually nonexistent for many people with intellectual disabilities. There is limited theoretical and practical knowledge of how adults with intellectual disabilities might maintain and/or develop literacy skills beyond school. Although we continue to refine our operational definitions of literacy (functional literacy, cultural literacy, computer literacy) and predict which skills may be necessary for success towards one’s life goals, most researchers agree on at least this one point: diminished literacy skills consistently result in a lower quality of life with fewer employment and leisure opportunities for this population (National Adult Literacy Survey, 2002). Though in some cases employers appear to be willing to hire persons with disabilities, employees need to demonstrate essential reading and interpersonal skills. Beyond the employment realm, access to literacy offers adults with intellectual disabilities increased opportunities for inclusion into local community life and culture and is a potentially life-empowering event. Experts now know that literacy is not a developmental end product but that oral language and written language are interrelated, reciprocal, and potentially lifelong learning endeavors (Teale & Sulzby, 1986). Research results suggest that for children, literacy ‘‘emerges’’ from a range of social and cultural experiences with other people and written language, including story books; magazines; handwritten lists, notes, and signs; and words on television, computer screens, and in movies. This emergent literacy (socially supported literacy interactions) facilitates both oral language and conventional literacy learning (Koppenhaver, Coleman, Kalman, & Yoder, 1991). Such literacy interactions are often highly motivating and effective contexts for social interaction, communication, and learning (Kirchner, 1991; Koppenhaver et al., 1991; Ratner, Parker, & Gardner, 1993; Watson, Layton, Pierce, & Abraham, 1994). Field reports from adult education programs consistently indicate difficulties meeting the specific needs of adults with intellectual disabilities due to a lack of community technical assistance (National Institute for Literacy, 1997). In a 1995 monograph by researchers from The Roeher Institute, the focus was on people with intellectual disabilities who sought literacy instruction. The common experiences expressed by participants interviewed included exclusion and segregation from the mainstream; the presumption of illness, discrimination, poverty, and loneliness; vulnerability to abuse; and violence. Similar to literacy, social connectedness (i.e., the extent to which individuals have friendships, engage in social activity, and feel a sense of belonging) positively correlates with a sense of empowerment and with overall quality of life (Lunsky & Neely, 2002). However, adults with intellectual disabilities often lack the opportunities and/or social skills necessary to participate in social events without adequate supports. Since the mid-1990s, individuals with intellectual disabilities have been living and working independently in their communities in unprecedented numbers (Nisbet & Hagner, 2000). Despite this increase, adults with intellectual disabilities rarely participate in local social activities (National Institute for Literacy, 1997). Many fundamental needs of people in this population are neither identified nor supported, and they continue to experience disproportionate segregation, isolation, and loneliness within their homes and communities (Bramston et al., 2002; Chadsey & Beyer, 2001; Minnes, Buell, Feldman, McColl, & McCreary, 2002; Nisbet & Hagner, 2000).

We reviewed a Mental Retardation article by Conroy et al. (2003) on consumer outcomes following the closure of the Hissom Center in Oklahoma. In this article the authors misconstrued their 254 subjects, implying they are representative of the Hissom Focus Class while failing to account for 128 subjects included in an earlier analysis. We found the research to be seriously compromised by data collection problems and discrepancies between reported findings and those obtained when the analyses were replicated. Problems ranged from those that seriously compromise the findings (such as the sample) to other problems in basic data management, transcription, and analysis that, when taken together, compromise the integrity of the findings, lead to inappropriate interpretations, and give rise to misleading conclusions that do not follow from the data.

In-person semi-structured interviews were conducted with 7 homeowners selected by 6 state homeownership programs as representing good examples of homeownership by individuals with developmental disabilities. Recurring themes were found in the choice of a home, advantages and disadvantages of homeownership, handling problems, community relationships, finances, supports, future plans, and homeownership advice. Although the process of purchasing the home was described as lengthy and difficult and ownership brought unexpected problems, these were outweighed by the financial, social, and psychological benefits of owning one's own home. A variety of external factors, including some undue control of the process by service providers and family members, appeared to add to the difficulties homeowners faced. Implications for improvements in homeownership assistance programs are discussed.

The topic of sexuality and romantic relationships of people with mild to moderate intellectual disabilities was examined. We developed a questionnaire to investigate the 76 respondents' sexual knowledge, attitudes, experience, and needs. During the interviews, observational data were gathered to check the validity of the instrument. Results show that sexuality and romantic relationships are important aspects in the lives of many persons with intellectual disabilities. Male respondents generally reported more sexual needs than did females. Correlations were found between sexual knowledge and attitudes and between attitudes and experience or needs, suggesting that general behavioral models may be fruitfully used to further explore the topic of sexuality among people with intellectual disabilities.

Osteoporosis is increasing due to the aging of the population. Women with cognitive impairment from childhood are at disproportionally high risk for osteoporosis and fractures. Suggested explanations for this increased risk include high use of anticonvulsant medications, lower peak bone densities, and higher rates of nonambulation. Down syndrome seems to be an independent risk factor for low bone density and fractures, presumably due to lower muscle tone. Here, the limited information available on the epidemiology of osteoporosis in the general population and in women with cognitive disabilities is briefly reviewed. Health care professionals should consider women with cognitive disabilities at high risk for osteoporosis and fractures. Studies are needed to determine screening regimens and prevention strategies appropriate for women in this population.

Lack of sufficient accessible community-based health care services for individuals with developmental disabilities has led to disparities in health outcomes and an overreliance on expensive models of care delivered in hospitals and other safety net or state-subsidized providers. A functioning community-based primary health care model, with an integrated care management component, functioning in the general health care practice marketplace, is described and shown to address recent Surgeon General recommendations as well as evaluative criteria for availability, affordability, acceptability, and appropriateness of care. The model functions in both fee-for-service and managed care environments, including Medicaid managed care for individuals with developmental disabilities. Experience shows this model to be both scalable and replicable, resulting in positive health outcomes and increased patient satisfaction.

More and more persons with mental retardation and psychiatric disabilities are present in mainstream society, yet have little interaction and few relationships outside their own peer groups of devalued persons. Social integration remains a desirable yet elusive goal for most human service organizations, and there continues to be a certain amount of confusion about what constitutes social integration. Recent reviews in North America and Europe testify to the difficulty of achieving social integration, particularly for people with mental retardation and psychiatric disabilities. Social role valorization, with its use of the social role concept, provides useful insights and tools for analyzing the social integration conundrum. A social role conceptualization of social integration is proposed and an illustrative example is provided.

The walking activity of men and women with mental retardation residing in community settings was described. Participants were 38 women (M age=.7, SD=9.5) and 65 men (M age=35.9, SD=11.2). They wore pedometers for 7 days. A 2 x 2 factorial ANOVA indicated no significant gender differences in total step counts or between participants with and those without Down syndrome. A post-hoc analysis revealed that participants walked less on Saturday than during the weekdays. Only 21.1% of the women and 21.5% of the men with mental retardation accumulated the recommended 10,000 steps per day.

Although many writers have provided a theoretical framework for treatment of mainstream sex offenders, this research has not been extended to sex offenders with mild intellectual disability. My purpose here is to bring together several research strands to provide a theoretical model for working in this field, including theories of sex offending, developmental theories for offending, and work on quality of life. In addition to dealing with issues of sex offending, researchers should also investigate developmental and societal issues crucial in the genesis of sex offending and offending in general. Because societal issues are also important for treatment, engagement and identification with society are suggested. Quality of life and issues directly related to sex offending are of central importance.

There is little information about the sleep patterns of adults who have mental retardation and are supported in the community. In the present study, direct-care staff recorded sleep behaviors of 59 adults residing in 16 suburban group homes. Based on direct observation and measurement procedures, the adults averaged 7.9 hours of sleep each evening and had low incidence of sleep problems. Sleep duration was not influenced by age, gender, degree of mental retardation, or psychiatric status. Adults taking antidepressant medication (SSRI) had fewer hours of sleep. We discuss implications of these findings and factors contributing to healthy sleep hygiene among community-living adults with mental retardation. This study was conducted at the May Center for Adult Services (Revere, MA). The authors thank the residence staff for their diligent efforts collecting and reporting the sleep data.

The Kallikak Family is a pre-eminent text in the history of mental retardation and psychology in which Goddard (1912) claimed he proved the heritability of feeble-mindedness and the necessity of institutionalization. The book contains 14 photographs, some of which have been retouched. These photographs were interpreted in this paper within the context of clinical photography of the feeble-minded during the eugenics era, and the conclusion was made that the photographs are masterpieces of visual indictment propaganda that worked on the levels of assumed scientific objectivity, hovel imagery, mutually amplifying juxtapositions, stereotypic images of imbecility, and religious symbolism to achieve persuasiveness. A resolution of alleged “skullduggery” surrounding the retouching is presented.

Interpretive ethnography was used as a framework to examine perceptions of physical activity behavior of 12 adults with mild mental retardation. Four parents and two job supervisors also agreed to participate. Multiple data sources included in-depth interviews, diaries, accelerometry, and informal observations. Participants reported many physical activity barriers, benefits, and leisure choices similar to the general population; however, two particularly salient themes related to negative influences and lack of guidance from support systems were apparently unique to this group. Results suggest that (a) adults with mental retardation need specially designed physical activity education and training programs and (b) supports system providers should be educated regarding the importance of physical activity to health for these individuals.

In 1993, The Council on Quality and Leadership in Supports for People With Disabilities (The Council) developed a person-centered outcome assessment instrument, Personal Outcome Measures (1997). The Council has maintained a database (N = 3,630) of Personal Outcome Measures interviews conducted during accreditation reviews. Our purpose in this article is to report findings on (a) the relationships between and among the Personal Outcome Measures (The Council, 1997) and patterns of individual outcome attainment and (b) to examine the impact of characteristic variables (disability, organizational size, residential type, or source of program funding) on the individual attainment of personal outcomes. Alternatives are suggested for examining the dimensions of both quality of service and quality of life for people with disabilities.

The prevalence of obese, overweight, and healthy weight adults with intellectual disability in the community was estimated using data from the National Health Interview Survey from 1985 to 2000. Using the Body Mass Index (BMI) as a measure, the percentage of adults with intellectual disability in the obese category was higher than that for the general population and increased over the 16-year period. There was no similar detectable trend for adults with intellectual disability who were in the overweight category. Compared to their counterparts in the general population, a smaller proportion of women and young adults with intellectual disability maintained their weights in the healthy range. Implications regarding potential health risks and future research were discussed.

Training needs and current status of training for direct support staff were identified in one southeastern state. Data sources were (a) direct support staff, (b) administrators of direct support staff, and (c) consumers with developmental disabilities. Stratified sampling was used to gather data from 108 administrators and 170 direct support staff utilizing mail surveys and from 179 focus group participants (56 administrators, 53 direct support staff, and 70 consumers). Findings suggest that direct support staff recognized the needs (a) for additional training on Community Support Skill Standards; (b) to develop a comprehensive, cost-efficient statewide system for training direct support staff; and (c) to develop the role of direct support staff into a valued profession.

The eugenics era (c. 1900-1930) produced a strong desire among mental retardation professionals to recognize and control "the feeble-minded." Some eugenicists believed it was possible to classify individuals visually by learning to recognize what they believed to be observable characteristics of idiocy and imbecility. In this paper I used qualitative methods to examine the visual classification scheme developed by Martin Barr and conclude that most of this classification scheme is a social construction that was reliant on modes of presentation, such as clothing and photographic style, which had very little to do with any inherent feeble-mindedness.

I want to talk about supporting staff, particularly direct support workers, about why it is important and why it is hard to do well, about how we all move forward together when we do, about what we are learning. What are we learning? We are learning to listen better to what staff members are saying: Tell me what my job is, help me get to know this person, offer meaningful training, help me understand how my role fits into the larger scheme of things, give me opportunities to talk about my work, value me and what I do. These are some of the things I like to talk about and sing about. I live in Madison, Wisconsin, with my wife and two daughters. I work for Options in Community Living (2001), which is a nonprofit supported living agency. We are involved with about 100 people who all live in their own homes in and around Madison. Some people have contact with Options staff just once or twice a week; others have staff members with them around the clock. There are about 150 people who work for Options, the vast majority of whom are direct support workers. As we carry out our day-to-day work with people, these are the values that guide us

Effects of inclusive school settings for students in six Indiana school corporations were investigated. Results reveal that students without disabilities educated in inclusive settings made significantly greater academic progress in mathematics and reading. For students with disabilities, there were no significant differences in reading and math achievement across the comparison groups. However, a review of group means and the percentage of students making comparable or greater than average academic progress when compared to students without disabilities indicates a pattern in favor of inclusive settings. The academic progress of students with specific disability labels, namely, learning disabilities and mild mental handicaps, also supported inclusive education.

Too much of the behavior shown by people with mental retardation is attributed to their having subaverage intelligence and not enough to their other human qualities. In an effort to correct this imbalance, Zigler (1971) called for the study of the ‘‘whole person’’ and showed that subaverage IQs do not predict personalities. A decade later, Reiss, Levitan, and Szyszko (1982) called for the study of the mental health of persons with mental retardation. They held that negative social experiences and attitudes, not subaverage intelligence, lead to many of the emotional and behavioral problems shown by people with mental retardation. Recently, researchers have disproved the myth that people with significantly subaverage IQs lack the cognitive capacities needed to self-determine their futures (e.g., Turnbull & Turnbull, 2001; Wehmeyer, Kelchner, & Richards, 1995). Despite these and other past efforts to correct for the misuse of IQs, they are still too powerful a determinant of how we respond to people with mental retardation. Here, we consider another misuse of IQs, namely, the assumption that these scores are strongly predictive of curiosity. Our thesis is that intelligence and curiosity are distinguishable traits, less strongly related to each other than generally assumed. Intelligence refers to one’s ability to learn, whereas curiosity refers to one’s motivation to experience intellectual activity. Intelligent people have the potential to solve difficult problems whether or not they enjoy doing so, whereas curious people have the potential to enjoy thinking about difficult problems whether or not they can solve them. Generally, educators pay too much attention to intelligence and not enough attention to curiosity when planning a student’s future. Consider the standardized tests that educators use to assess students. Although educators often use standardized intelligence tests, they rarely use standardized tests of curiosity. Until recently, there were no widely used standardized tests of curiosity for students with mental retardation or for students generally. The recently published Reiss Profile MR/DD (Reiss & Havercamp, 2001) includes a Curiosity subscale that may be the only standardized measure of this construct specifically validated for use with people who have mental retardation. Past educators could not have formally assessed the curiosity of people with mental retardation even if they had wanted to do so because they lacked appropriate assessment tools.

Demographic features of Americans with mild intellectual disabilities were estimated in an analysis of the National Health Interview Survey. The cohort was compared to the population of the United States, persons with specific learning disabilities, and persons with mental retardation. Comparison on basic indices of adaptive functioning and SES suggest a large cohort of Americans who share many support needs and social and economic vulnerabilities with those labeled “mentally retarded.” The combined prevalence of intellectual disability/mental retardation was estimated to be 1.27%. Implications are discussed in terms of the “forgotten generation” report of the 1999 President's Committee on Mental Retardation and evolving conceptions of mental retardation.

In this qualitative inquiry we investigated the conceptualization of family quality of life. Focus groups and individual interviews were conducted with 187 individuals: family members (e.g., parents, siblings) of children with a disability, individuals with a disability, family of children without a disability, service providers, and administrators. Data were collected in urban and rural settings to elicit the participants' understanding of family quality of life. Ten domains of family quality of life were identified and described in terms of subdomains, indicators, and key points raised by participants. Implications are discussed in terms of future directions for research and family support.

The effect of variation in the clarity of a witnessed event on the accuracy of eyewitness identification for adults with intellectual disabilities and those without disabilities was examined. Following observation of one of three films (clear, less distinct, or ambiguous) depicting a nonviolent theft, participants were asked to identify the thief from a photo lineup. Across all film conditions, participants with intellectual disabilities made as many correct identifications as did participants without disabilities, but they also made more false identifications and were more prone to guessing. Differences between groups seemed to be attributable to the demand factors inherent in the eyewitness identification task and understanding of the nature of the task itself.

The present survey determined women's participation in eight journals concerned with mental retardation and related topics. The number of female authors was recorded for all articles published in these journals from 1991 through 2000. The number of women on the editorial board each year, for each journal, also was tabulated. For all years and all journals, women were first authors of 41% of articles published. Women wrote 34% of single-author articles. Overall, 45% of all authors were women. Women constituted 34% of the editorial board members for the eight journals combined. In sum, these data suggest that women's contribution to the mental retardation literature decreases with the prestige of the activity.

In this article I propose that the experience of people categorized as having intellectual disabilities is inadequately represented by current disability theory, premised, as much of it is, on the socially constructed duality between disability and impairment. I argue that representation of intellectual disability within the wider world of disability in general will only be achieved by thinking of disability on a continuum. This should preserve individual identities while reducing categorization and the attendant essentialist versus constructionist conflict. Debate can then move to a consideration of what methodologies are appropriate to the inquiry.

The impact of environmental features of residences on adaptive behavior, community integration, and health of adults with mental retardation over an 8-year period was examined. Environmental features included residence type, size, choice-making opportunities, physical attractiveness, and family involvement. We assessed 186 residents who initially lived in nursing homes. At the 8-year follow-up, 133 had moved to community-based residential settings. Findings indicated that residents who moved to community settings had higher levels of adaptive behavior and community integration than residents who remained in nursing homes. A more attractive physical environment and greater opportunity for choice-making were associated with higher levels of adaptive behavior at follow-up. Greater opportunity to make choices and family involvement were associated with higher levels of community integration.

Self-determination and lifestyle satisfaction of 80 adults with mild or medium mental retardation living in group homes or their parents' homes were examined. They were assessed in regard to self-determination, as indicated by choices made in the domestic, financial, health, social, and work domains. Lifestyle satisfaction with residence, the community, associated services, and employment was also assessed. Results show that those from group homes were lower on self-determination but higher on lifestyle satisfaction, providing support for the commitment to normalization and community inclusion to enhance lifestyle satisfaction. However, questions about the extent to which people with mental retardation are afforded decision-making opportunities and self-determined behavior remain. We suggest that service providers and caregivers should encourage and create such opportunities.

Many studies on attitudes toward persons with mental retardation have been conducted in Japan since World War II. However, because all of these studies were published in Japanese, results have not been widely circulated abroad. It is our desire to introduce these Japanese studies internationally in a brief report. Because Japan has a unique culture, we believe that researchers in other countries will be interested in these investigations. Japanese people very often distinguish between what they say and actually think (and we have special words, tatemae and honne, to make the distinction). Although these words are not easily translated into English, we can say that the distinction is between tatemae (what one says) and honne (what one actually thinks). What is said is intended to look good. A discrepancy between what people say and actually think might not be specific to Japan. In the United States in the later part of the 1970s, some researchers noticed a discrepancy between survey responses in a Gallop Poll and community opposition to building facilities for individuals with mental retardation (Kastner, Reppucci, & Pezzoli, 1979; Sigelmen, 1976). We have also observed the same discrepancy in Japan regarding community opposition. The difference between Japan and the United States is that such a discrepancy is not perplexing but natural in Japan because people frequently make a distinction between tatemae and honne. Many Japanese surveys show a high agreement about the establishment of residential facilities for persons with mental retardation (Minagawa & Narukawa, 1985; Nakamura, 1976; Sakurai, 1973; Shirai, Fujiki, & Shirai, 1977; Shirai, Fukiki, Shirai, & Tsukahara, 1978; Shirai, Shirai, Fukiki, & Tsukahara, 1979). Independently or despite such ‘‘superficial’’ positive attitudes, there is opposition by neighbors to the construction of local facilities. There has been no systematic research on such opposition in Japan. However, we see many reports in newspapers on community opposition. According to Berdiansky and Parher (1977), the main reasons for opposition in the United States are the impact on property values and safety problems for residents. We were surprised at how honestly residents expressed their feelings in the United States. Although the real reasons for opposition in Japan are not so different from those in the United States, Japanese individuals do not give candid reasons. As a representative example, we can cite the opposition in a district in Yokohama. The reason for the opposition was the possible destruction of the natural environment by the construction of a facility for people with mental retardation (The Asahi, 1997). (Actually, the location of the expected facility was not a special place but, rather, an ordinary site). We can see an educational environment that reinforces such kinds of distinction in Japan. A survey of elementary school texts in Japan and the United States indicates an interesting fact (Imai, 1990). In the United States, the ability to assert one’s ideas is considered a valuable behavior. In Japan, self-assertion is not emphasized as much. Keeping a good relationship with others with a ‘‘tender attitude’’ is a more important and desirable behavior (see Imai, 1990, for details). Teaching students how to have good relationships with others with a tender attitude, without emphasizing an importance of self-assertion, may promote the distinction between tatemae and honne, in which self-assertion is not needed for achieving a good relationship with others. Keeping this cultural climate of Japan in mind, we discuss the findings in Japanese studies about attitudes towards persons with mental retardation.

Findings from a national survey of state mental retardation/developmental disability agencies regarding use of the Medicaid Home and Community Based Waiver to fund supported employment were reported. Numbers of individuals and funding levels were requested for day habilitation services for FYs 1997 and 1999, before and after the(P.L. 105-33), which removed eligibility restrictions for this service. Findings show that growth rates for this service far exceeded growth rates for other day services, with high growth rates in a small number of states. However, supported employment accounted for less than 16% of those receiving day habilitation services through the Waiver and only 12% of day habilitation funding, with the remainder going to day support, prevocational services, and other segregated options.

The informal and professional supports available for families of children with mental retardation in Korea and the United States were examined and the effects of culture and social support on maternal stress considered. Thirty-eight American and 40 Korean mothers participated in the home-visit interview. A pilot study identified 10 types of informal and 11 types of professional support for the two national groups. Results showed that American mothers received more informal and professional support in almost all domains of social support; Korean mothers experienced more stress. Possible explanations for these differences were explored.

The thought of Plato and Aristotle in relation to the construction of intellectual disability is considered. Key elements in their thought are reviewed, which may have relevance for the construction of, and social response to, intellectual disability in Western societies. Specifically, I consider the "scale of beings"; the requirements of virtue and what constitutes a "good person"; and the relationship among reason, responsibility, and moral and legal status. My purpose was to demonstrate that the exclusion of people with intellectual disabilities is inherent in Western epistemology and that it is only change at this level that will ensure true equality for those labeled as having intellectual disabilities.

A 12-week, double-blind, randomized, placebo-controlled trial of oral clonidine in three fixed doses (4, 6, and 8 mcg/kg/day) using a crossover design was conducted with 10 children who had hyperkinetic disorder (mean age 7.6 years +/-.54). All had comorbid mental retardation. Both parents' ratings on the Parent Symptom Questionnaire and clinicians' ratings on the Hillside Behaviour Rating Scale showed a marked dose-related response to clonidine in hyperactivity, impulsivity, and inattention. Drowsiness was a common side effect of clonidine. It wore off by the 2nd to 4th week in most cases. Thus, clonidine is a safe and effective medication in young hyperkinetic children with comorbid mental retardation.

A discussion of adulthood in general and that of individuals with severe cognitive impairments was presented. The meaning of adulthood in our culture raises issues regarding the disparity between status as an adult and status as a person with a severe cognitive impairment. An examination of the traditional roles, rites, and rituals of adulthood (e.g., voting, marriage, consensual sex, and moving out of the family home) was provided. Personal deliberations on how the first author intends to assist her daughter in accessing these markers of adulthood are included. Our overall goal in this article is to promote discussion regarding adulthood and significant disabilities and to encourage additional movement toward full societal membership of adults with severe cognitive impairments.